Being autistic can be rough. Or having any form of mental health and/or diagnoses for that matter. Yet, it’s up to us to how and what we want to do and achieve in our lives to get to where we want to be. While you may hear negative things about autism, as well as the stereotyping and stigma around this, we need to remember that this isn’t the full picture. This video I will be sharing with you all today will help you come to terms with your autism in three parts and/or methods so you can focus on being the wonderful human being that you are.
Method One of Three: Seeing Autism Differently
While autism is a neurological developmental disorder, we all have our own quirks and traits for our autism. Autism does come with strengths and weaknesses and that with our strengths we can do great things in our lives.
Learn about autism from autistic people.
Too often, non-autistic people write about autism without consulting real autistic people.And, that for sure, can be a no-no and frustrating. They may come up with inaccuracies, laughable misconceptions, or extremely negative viewpoints on differences that don’t hurt anyone. Autistic people can provide you with a more accurate and well-rounded view. The Autistic community often describes autism in a neutral or positive light. This may help you gain a more holistic sense of autism, as opposed to seeing only the negatives.
Read about the strengths associated with autism.
Autism is a complex neurological condition that comes with several blessings along with its impairments. You may experience some or all of the following: Deeply passionate interests. These can lead to tremendous expertise, and possibly a very successful career or fun hobby. Helpfulness. Autistic people, in general, have a high sense of social responsibility, or the desire to solve problems and help others. Precision. It is often noted that autistic people focus on the small parts, rather than the big picture. This can lead to remarkable detail-oriented work, where a neurotypical person might be unable to focus so clearly on the individual aspects of something. Visual intelligence. Autistic people have tested higher on visual and nonverbal intelligence tests. Sincerity. Autistic people tend to mean what they say, and act as a “voice of reason” without becoming mired in social complexities. Your honesty and genuine spirit can feel refreshing to others. Creativity and a unique perspective. Autistic people can learn in unusual ways. This provides insights that neurotypicals may never realize, and can become a great asset in collaboration.
3. Read about successful autistic people.
Plenty of famous people have been diagnosed or thought to be autistic. Strong special interests, focus, and a unique perspective can lead to innovation and creativity. Historically, Einstein, Thomas Jefferson, Emily Dickinson, Mozart and more people were thought to be autistic. Famous autistic people today include Tim Burton,Susan Boyle, Adam Young (from Owl City), Temple Grandin and more.
4. Consider your special interests.
Special interests are a clear upside of autism: you have an incredible memory about these facts, intense focus, and the ability to act like a walking encyclopedia of information whenever you want. You also get to have a lot of fun doing the things you love. Most non-autistic people would be jealous of the way you can recall and discuss information.
5. Read about the social model of disability.
The social model holds that disability is not caused by defects in the brain or body, but by society’s failure to accommodate and accept a certain variation. For example, most nearsighted people are not disabled: they are fully accommodated within society (glasses, contacts), and have the same opportunities that non-nearsighted people have. Their body can’t do the same things, but technology makes up for that, so it is not an issue. (I will hope to share more later on about this topic of how it works and if it is accepted in the autistic community)
Method Two of Three: Helping Yourself
Remember that it’s okay to be different
If everyone were just like everyone else, the world would be boring. If we were to be like everyone else, then the world will be just pure black and white. We need to be able to express ourselves and be able to be ourselves and not be able to have permission from others to tell us or dictate to us in how we should speak, act or think. We are all unique. Your quirks are part of what makes you memorable, and you don’t need to censor yourself or try to look “normal.” These days we are all put into a box full of “neurotypical expectations”. We are born to be different and we are born to stand out and not blend in,I believe. It is absolutely okay to be disabled and to look disabled in public.
2. Find therapies and treatments that work for you.
A good therapy will leave you better off than you were before, and you will gain skills to help you become more well-adjusted. You can also learn coping mechanisms, alternative methods of doing difficult tasks, and how to capitalize on your strengths. Options include sensory integration therapy, talk therapy, occupational therapy, special diets, behavior therapy, and seeing a psychologist for emotional issues. Always check with a doctor before altering your diet or attempting an alternative treatment.
Be careful about behavior therapies. Some therapies are based on compliance and may hurt more than helping. If your therapist’s goal is to make you more normal (rather than more comfortable or more competent), or if you feel upset and anxious about seeing them, then find a better therapist.
3. Stop trying to do things that are too hard.
With the media constantly encouraging people to “do your best,” sometimes people forget that it’s okay to quit. You do not have to put forth 110% effort all the time—this can lead to burnout. If something is draining your energy or adding a lot of stress to your life, stop doing it. Sometimes saying “I quit” is freeing. Disability doesn’t just mean that there are some things you can’t do. It can also mean that some things are painful or extremely draining for you. Give yourself permission to quit or find an alternative way. *I shared some advice and also some of my experiences based on this topic*
4. Focus on your skills and character strengths.
This will help you spend less energy mourning your disability, and more energy on doing positive things and enjoying your life.Spend time on your hobbies and things that you’re good at. Enjoy the feeling of competence and expertise. Make a list of your positive traits. Consider both personality traits and skills. Place the list somewhere where it’ll be easy to see when you’re feeling sad about yourself. Help other people. Prepare food for the hungry, raise awareness for important causes, or write about your special interest on wikiHow or even write in your personal blog. Effecting a positive change in the world will distract you, help others, and make you feel happier about yourself.
5. Practice self-care.
Being disabled can be difficult, and it’s important to treat yourself well. Cut out energy drains from your life so you can focus on what matters most to you. Pushing yourself to meet non-autistic standards will only take a toll on your health. It is okay to ask for academic accommodations, take extra breaks, or quit doing things that are too stressful to achieve. Pay extra attention to general health advice: sleep for at least 8 hours, eat fruits and vegetables, limit junk food, minimize stress, and exercise regularly (taking walks counts). Self-care is extra important for you, to mitigate stress and help reduce meltdowns and shutdowns.If you have trouble with self-care, it’s okay to ask for help. Assisted living, a group home, or living with family might be better for you. Talk with a doctor, social worker, or therapist if you’re struggling. There’s no shame in meeting your needs, and it’ll free up time for things you love.
6. Get a mentor (or two).
Look for people in your life whose judgment you trust: parents, older siblings, relatives, counselors, clergy members, friends, etc. Living in a neurotypical world can be confusing, so it’s useful to have people to ask for advice. You can ask questions from “Is this outfit good for an awards ceremony?” to “This person makes me feel awful; what do I do?”
Toning down your behavior is your choice—not something to be pushed or coerced out of you. You are not required to act more neurotypical just because everyone else is used to it. Try to stop masking when you can. Masking is linked to mental health risks. Try to be yourself more often.
8. Recognize that autism is just one piece of who you are—a kind, thoughtful, and lovable human being.
People can love you and your autism. You can love yourself and your autism. You are not a lesser person. Remember that even though autism is part of you, it doesn’t define your entire existence. Autism is a significant part of who you are, but it isn’t all of you. A diagnosis is simply just a label. An integral and whole part of your identity, but a label nonetheless. You are so much more than autism, so embrace your non-autistic-related strengths as well.
9. Talk to someone if you are overwhelmed by self hatred.
Anxiety, depression, and self-esteem issues are unfortunately common in autistic people as well as others that has any form of mental health conditions. Identify someone you trust and explain to them how awful you feel. If you think you may have anxiety and/or depression, try to schedule a doctor’s appointment. The doctor can give you a screening and perhaps some helpful medicine. You are not being selfish or burdensome by sharing negative feelings. People can probably tell if you are feeling awful; they just may not know how to help. If you tell them, this is helpful to them, because then they can know what to do and worry less.
Method Three of Three: Finding an Autistic Community
Surround yourself with positive people.
Look for the people in your life who build you up and leave you feeling better than you did before. Make an effort to spend more time with them. Ask if they’d like to get lunch with you, or if you could get together this weekend. If you usually feel bad about yourself after spending time with someone, that’s an important pattern to be aware of. Figure out why you feel that way, and whether the relationship is worth maintaining.
2. Meet the autistic community.
This can be done by contacting a friendly support group, or through a search online. Learn what autistic people have to say about themselves, their symptoms, and the way they interact with the world. Autistic people, in general, are very welcoming to newly diagnosed or self-diagnosed people. Autistic people can offer advice and tips to those in need (and often do so, especially online). The general positivity of the autistic community can help you feel better when you are feeling sad or have low self-esteem. *Again, I shared a little bit based on my experiences in this as well as you watch the video.
3. Avoid people and organizations that dehumanize you.
Some people and groups think that raising “awareness” for autism makes it okay to say horrible things. You have feelings, and you deserve to be treated like an equal human being. Don’t waste time on people who refuse to respect you.Use the block button or unfollow button on social media if an account is negatively impacting your mood or mental health. Mental health is important for us to be well and strong enough to get through the day of whatever arises. We need to have the right frame of mind and attitude to get through it as well. It is okay to cut toxic people out of your life, even if they’re family. You don’t need their negativity, and you’re much better off without them. You are not required to argue that your existence is worthwhile, and it’s okay to decide not to waste your time and energy on them. If you’re stuck with these people, you can either educate or avoid them. Educating them can be done by telling them about autism and making an appeal to their desire to be a good person. If you try this and fail, or if you know that they won’t respond to reason, it’s better to avoid spending time with them and avoid autism-related conversations. You don’t deserve to listen to toxic ideas about your existence.
4. Get involved with positive autism-related organizations.
They will help you understand yourself better and make a positive contribution to the world. Many autism self-advocacy groups have a large online presence. You do not need to physically go somewhere to get involved. We all need to feel safe, accepted and wanted by anyone that’s a given. If you can’t find in-person autism organizations that are any good, try general disability groups. It can be tremendously relieving to spend time with a group where being disabled is viewed as the “norm”.
6. Make Autistic Friends.
Along with the usual benefits of friendship, you can share coping strategies, discuss autism together, and be yourselves without any fear. Look for autistic people in autism acceptance advocacy groups, special education (if you go there), or disability/autism clubs.
*If you struggle with persistent feelings of sadness related to your diagnosis, tell someone. Talk to someone you trust, or a doctor or therapist. Never be ashamed for having autism. This is what makes a part of you- YOU.
*Some people think autism is a burden. You don’t deserve to be dehumanized by anyone judgmental.
It’s a given that when we get diagnosed that many children will seek medical assistance and that ideally it’s known that autism is diagnosed by when a child is 18 months old. However, it’s not unusual to be diagnosed with autism as a teenager or an adult. This is particularly common with middle-aged adults who come of age before mental health professionals understood and accepted the autistic spectrum. If you’ve been diagnosed with autism at a late age, it can take some time for you to wrap your head around the diagnosis. Once you understand more about your diagnosis, it can be liberating and exciting to learn the reasons behind some of your behaviors and explore the welcoming and supportive community of autistic people.
Here I am today, going to share with you all some tips and advice about this topic for you or your loved one that has autism so that we can together understand each other more. We are more than just having autism. There will be three parts of this yet will hope to try and keep it as short as possible. Let’s begin, shall we?
PART 1 – GETTING SUPPORT
Join autistic self-help groups.
There are many autistic self-help groups that will enable you to talk to other autistic people and understand more about your diagnosis and how to cope as an autistic person in a neurotypical world. You may be able to find groups in your community that meet in person. There also are many online groups if you don’t feel comfortable meeting with a bunch of people you don’t know. To find groups or online forums, contact a nonprofit autistic organization or peruse their website. They typically will have a directory. Talking to other autistic people can build your confidence, especially if you’ve spent most of your life as an outcast. It can be refreshing to find out that there are other people who think and relate to the world just like you do Other autistic people also can share tips and coping strategies with you so you can better adapt and come to terms with your diagnosis.
2. Find out if you are eligible for government grants or other assistance. Having a diagnosis of autism means you may have easier access to government support and disability benefits to help you manage your life. You can find out about assistance by contacting a government disability office near you. Nonprofit autistic organizations also may have information about assistance and grant opportunities. The best organizations will have autistic people in leadership positions or on their executive board, and autistic people will have a strong voice in the organization.
3. Decide if you want to share your diagnosis openly.
Particularly if you’ve been diagnosed as an adult, you may not want to tell everyone you know that you are autistic. Before you reveal your diagnosis, think hard about the pros and cons of doing so. Many autistic people, especially women, escape diagnosis until later in life because they don’t fit the stereotypical profile of an autistic person. Depending on how old you are, you probably have already learned many coping mechanisms that allow you to blend in better. This is good for you, but in terms of disclosing your autism it means that people may doubt you or not believe you. Keep in mind that people often have misconceptions about autism. As a result, they may say things that come across as rude or insensitive because you don’t fit the image they have in their head of an autistic person. Before you decide that you want to be completely open about your diagnosis and your identity, make sure you’re prepared to handle people who will have doubts or attempt to invalidate your diagnosis.
4. Seek accommodations at work.
In many countries such as the U.S. and the U.K., autism is considered a disability within the national legal framework. Your diagnosis entitles you to accommodations you might otherwise have difficulty getting. Keep in mind that seeking accommodations typically involves telling people at work about your diagnosis. Be prepared to explain autism and how it impacts your life. Let your boss or immediate supervisor know of the accommodations you request. For example, suppose you work in an office cubicle, and you have trouble concentrating because you can hear your coworkers talking on the phone all day. You may request a closed office as an accommodation. If they deny your request, you may have to take further action. Talk to a disability rights attorney if your request for accommodations has been denied, or if you have been discriminated against by your employer after revealing your diagnosis.
5. Reach out to friends and family.
The people closest to you often will be your greatest sources of support – even if none of them are autistic themselves. Spending time with people who love and care about you can help you come to terms with your diagnosis. In most cases, diagnosis of adults or teenagers includes a questionnaire or interviews with your parents. If this was the case for you, they already know about the situation and may be eager to provide you with any help that you need. Your closest friends are people who have been through thick and thin with you, and they love you for who you are. They likely will take the news well, and can help you decide whether to tell others, and who to tell. In particular, lean on people who’ve been in your life for a long time. They’ve become accustomed to and accepting of your various “quirks,” and they can be a breath of fresh air as you come to terms with your diagnosis, because around them you know you can just relax and be yourself.
Identify triggers of over-stimulation.
Many autistic people have senses that are either extremely sensitive, or that aren’t as sensitive as those of “normal” people. This can mean that some environments are uncomfortable or even painful for you. Sensory over-stimulation can be a difficult thing to understand as a child. However, as a teenager or an adult you probably have a good idea of situations or environments that cause you problems. For example, you may find that you hate grocery shopping, and that you frequently leave the grocery store frustrated or in a foul mood. Think about the atmosphere: grocery stores are frequently lit by fluorescent lighting, which can cause sensory over-stimulation for many autistic people. Grocery stores also have a lot of competing noise – shoppers having diverse conversations, overhead music, PA announcements, employee chatter, and the like. Many autistic people have difficulty filtering background noise, which can make all of these sounds occurring in one place frustrating if not painful.
2. Make adjustments in your life.
Based on what you learn about sensory triggers and other autism-related issues, you can implement changes that could potentially make a vast improvement in your living environment. For example, understanding that your problem with grocery stores is related to sensory over-stimulation can help you identify options that will make this errand easier for you. Adjustments you might make in that situation include wearing headphones and playing some soothing music or white noise to block out the cacophony of the grocery store, or wearing sunglasses to blunt the effects of the fluorescent lighting. Over time, as you become more comfortable and gain a better understanding of your diagnosis, you will discover other things you can do to improve your life and your experiences with the world.
3.Recognize your strengths.
There are many strengths related to autism, including pattern recognition, strong memory, and intense passions Take some time to identify the strengths you have and learn ways to apply these strengths in your everyday life. Thinking about your strengths can help you come to terms with your autism diagnosis because it can help you to see that while autism creates some challenges, it also has its positive side.
4. Put your weaknesses into perspective.
Certain challenges, such as difficulty with social interactions, are intrinsic to autism. Getting a diagnosis of autism can help you understand the difficulties you’ve had and provide tools you can use to overcome them. For many autistic people who are diagnosed at a late age, learning they are autistic is like a light bulb turning on in their heads. Suddenly there is an explanation for so many things you may have beaten yourself up over before. Now that you know you are autistic, you can cut yourself some slack on some of the things that you might have thought were negative aspects of your personality before. For example, you may have accepted criticism that you were lazy because you have the tendency to procrastinate and overlook certain tasks. However, autism explains this as poor executive functioning – you may see something that needs to be done, but your brain can’t put together the steps required to take care of it. This doesn’t mean you can use autism as an excuse. Rather, identifying the cause of your challenges opens new doors for you, enabling you to discover different ways of handling those challenges that will actually be effective for you.
You also can use your strengths to find others with whom you can relate. For example, many autistic people are highly visual thinkers who process thoughts in pictures rather than words. You probably will get along better with other people who are also visual thinkers – regardless of whether they’re autistic. If you’re struggling to find a job or career path that’s right for you, identifying your strengths also can help you identify career fields where you will have the opportunity to shine.
*SIDE NOTE- For many of us autistics this can be a huge relief and huge weight off our shoulders is now gone because without the label or even the diagnosis of autism and many other mental health diagnosis or just any diagnosis for that matter, we tend to think or shall I say we tend to overthink/over-analyse everything around us as well as thinking that there must be something wrong with us. We tend to question ourselves and doubt ourselves of our capabilities, skills and so much more like most people that goes through a mental health diagnosis. The questions that many of us ask ourselves are: ‘Why don’t my peers relate to me? Why can’t I do these things that seem to come so easily to other people?’ You might start thinking you’re broken. But then, when you get the word autism, you realize there’s not anything wrong with you. You have a condition, and there are other people like you. Suddenly, you’re not alone in a world in which you were kind of alone for a long time.”
PART 3: UNDERSTANDING YOUR DIAGNOSIS
Talk to your doctor.
The doctor who diagnosed you should be your first source for information about autism and how you personally fit into the autistic spectrum. They will be able to explain the diagnosis, as well as provide you with resources to enhance your understanding. Have the doctor go through the screenings or tests that you took in detail, and explain the traits that indicate you are autistic. Go through the diagnostic criteria and consider how you identify with them, and which ones don’t seem to apply to you. Ask your doctor any questions you have about the autistic spectrum and the diagnostic process.
2. Read essays and books by autistic people.
There are a number of books, essays, and articles written by autistic people for other autistic people that can help you understand your autism. Focus on books written by people who also were diagnosed late in life, such as Cynthia Kim. Loud Hands and And Straight On Till Morning are prominent anthologies of work by autistic people. Generally, you want to avoid books or articles by non-autistic people. They may have misunderstandings because they do not have the life experience of an autistic person. However, NeuroTribes is a book that is well-regarded by the autistic community for its accurate and compassionate overview of the history of autism – despite the fact that it is not by an autistic author. When you find an autistic author that you like, find out if there are other authors, books, or websites that they recommend. Many of these books have a “resources” section in the back.
3. Fit autism in with other diagnoses.
Many autistic people who were diagnosed with autism at a late age have an extensive history with the mental health profession. You may have previously been diagnosed (or misdiagnosed) with other conditions or disorders. I have shared this before and I shared my story about being misdiagnosed which you can find on my channel and the title of the video is “AS DIAGNOSIS DENIED- DIAGNOSIS STORY” For example, many autistic people who were diagnosed in adulthood were previously diagnosed with ADHD, schizophrenia, or bipolar disorder. If you have any of these diagnoses in your history, talk to your psychiatrist about whether you should continue to be treated for that disorder or take previously prescribed medications. On the other hand, there are disorders such as anxiety and depression that often co-exist with autism. Talk to your doctor about how autism potentially impacts those disorders or how they’re treated. You may be on psychotropic medication for anxiety or depression. If you are, and if you like what the medication does for you, there’s no reason to stop taking it just because you were diagnosed with autism. However, if you aren’t satisfied with the treatment you’re receiving for other disorders with which you’ve been diagnosed, understand that these may be misdiagnoses. Autism also may present other options for effective treatment.
4. Consider starting a blog or a vlog
Do you enjoy writing? If you do enjoy writing, a blog can be a good way to come to terms with your diagnosis and understand autism and the autistic spectrum better. Many blogging platforms have active autistic communities. Even if you don’t yet feel comfortable writing yourself, you can still establish a presence on the platform and follow other autistic bloggers. Maybe, if you’re brave enough that you can put yourself out there on some other platforms as well such as Instagram, Facebook, YouTube, Twitter and many more. You’ll be surprised to see how many autistic people out there that are doing this already to share the life stories and experiences with Autism. I’ve talken to some of them and some have been great towards me. Search under tags such as “actually autistic” to find blogs written by and for autistic and otherwise neurodivergent people.Blogging platforms such as WordPress and Tumblr allow you to share the posts of others on your own blog, which enables you to save those posts you find helpful for future reference.
It is a given that we live a lot longer than our pets that we care for, cuddle and nurture and so much more with them that , it stands to reason that we will, at some time or another will have to come face to face with losing one. Whether you know it’s coming or it’s unexpected of the actual time to say our goodbyes to our fur-babies, it is a sad and emotional time. Fortunately, there are many ways to cope with the loss.
Method 1 – Before Your Pet’s Death
Accept your pet’s fate.
At some point, we all will need to come to terms with the mortality of our beloved pets. Even, if the Vet gave a certain diagnosis of the animal’s health and how long it is expected to live for – we definitely need to be ready for that. Preparation is key. There are very few animals that, like pets, have the expected lifespan of humans. If your pet is ill or is a “senior” pet, it’s a good time to talk with your veterinarian about your pet’s continued quality of life of what you can do for it to get comfortable and free from any pain.
2. Talk with your vet.
When talking with your vet, ask if and how much pain your pet is experiencing. Gather every information that you’ll need based on what your pet is facing. Knowing this will help you make the right decision for your pet, and knowing that you make the best choices for your pet helps you better cope with the loss of a pet.Consider the animal’s quality of life. Ask yourself a few questions before you make the final decision if you do decide to let your pet go. Is (s)he in pain? Can the pain or illness be treated medically, and still offer your pet a good quality life? Does (s)he have a good appetite? Is your pet happy?
Finally, give thought to whether medical treatment is financially viable for you. For most of us, finances do need to be a consideration, albeit a very unpleasant one. Based on the vet’s assessment and your own judgment, make the decision, with your pet’s happiness in mind. If you’re not sure, consider getting a second opinion from another vet.
3. Take pictures of your pet.
You will want something to remember it by. Even if (s)he looks sick and miserable, it is very important to take photos and videos, as bittersweet as it may feel. In the future, you may wish to boast about what a wonderful pet you had, and you may want to show people what he or she looked like. Collect anything else you want to remember him/her by. This includes a favorite toy, a blanket, or a decorative element from a tank or cage. Consider taking a clipping of your pet’s hair. You can also dip your pet’s paw in a small bit of paint and place it on a piece of paper that you can later display after the pet has died.
4. Continue to spend time with your pet.
Despite, it’s quality of life it is reassuring for your pet to know that you’re there with them until you let go. Let your pet know how much you love him or her, and cherish every moment. They will know that you’re still with them. Animals can sense people auras and what their nature is like from when you first got them to when you’re about to let them go. As that happens, your bond and friendship with your pet grows. Pet your special one in all its favorite places, and above all else make sure s/he is comfortable. Talk and maybe even sing. Do things that your pet has always enjoyed, when still able, like letting curling up on your lap for hours at a time, giving plenty of time to roam in the yard, and eating yummy little treats. If there was ever a time to spoil your pet, this is it. Discuss your pet’s diet with your vet. If your pet is at an advanced age, a change in diet may make your pet happier on many levels – offering a diversity of foods and/or foods that are easier to eat or digest (and help prevent weight loss). At the same time, respect your pet’s wishes; if (s)he wants to be left alone, don’t violate your pet’s comfort. Let your pet have his or her way
5. Consider staying with your pet during euthanasia. (MORE LATER ON THIS)
I know many people won’t want to come to terms to put the animal down. Yet, it has clearly shown that when you’re with the animal after it’s put down, they’re at peace to know that you’re with them. It is usually a painless and peaceful process for your pet, but most importantly you will be with your beloved pet in its last moments, helping to ease its way along. Remind the vet to give an anesthetizing agent so that your pet goes to sleep BEFORE the actual injection occurs that ends his/her life. Holding and petting your animal can give you as much comfort as it gives your pet, and though it’s a sad experience, it’s one that will help you to feel you did all you could for your pet in this world.
6. Make arrangements as to what you will do with his earthly remains.
When preparing for the loss of a pet, you also need to prepare for all the practicalities that follow. They are an absolute nightmare if you’re unprepared – and may add to your grief and stress at the time. You want to ensure you’ve taken care of all arrangements beforehand. You may wish to bury it in your yard with or without a grave marker. You can also have it buried in a cemetery or cremated.Or you can ask for their ashes once they’ve been cremated and then do a proper ceremony of letting go.
7. Give family and friends a chance to say goodbye.
Before your beloved pet leaves your home forever, let the people who’ve enjoyed his/her presence know that it’s not going to be around for much longer. You’ve been given a chance to say goodbye, and so should they. Assuming your pet feels comfortable with people, getting attention from various sources will make you and your pet feel more loved.
Method 2 – After Your Pet’s Death
1 Allow yourself to cry.
Bottling up your emotions is not good for you, and you will feel sad forever. Forget all that nonsense that you’re not supposed to mourn an animal as much as you would a person. There was a bond that you cherished, and no matter the nature of the bond, it is missed.
2. Tell your friends about the loss. You might send out a mass e-mail, but not to everyone in your address book. Send it to those who know you well, and care about you. You will receive many responses that let you know others loved and appreciated your pet and will validate your feelings.
3. Remember your pet. Don’t pretend you never had one. Even though it makes you sad, it is best to remember and cherish the memories, not ignore them. It may hurt at first, but it’s the only path to closure, and it’s the only way you’ll ever be able to remember fondly your time with your pet. This is a good time to make a scrapbook or post photos on your blog or homepage. Include pictures, stories, and notes about your pet. Read “The Rainbow Bridge” poem online. It will make you feel better about your loss. Create some form of legacy for your pet when they’re gone to be remembered by.
4. Get on with your life.
Although losing a pet is very sad, it is no reason to shut yourself up in your house or go into depression. Your pet has always felt comfortable in your comfort, and the sooner you get back on track, the sooner you’ll be yourself again.
5. Consider volunteering at a local animal shelter.
While emotionally, you may not be prepared to welcome another pet into your home right away, the act of helping to care for a homeless pet, a pet in desperate need of a caring human, may help with your grieving and sadness.
6. Do something in memory of your pet. Plant a tree, donate to a shelter or college of veterinary medicine.
There is so much more you can do while coping after losing your fur-baby as it is quite similar to how it works with when losing a person that you’ve loved and cared about. The question is do you wish to get another pet after losing your first one that passed?
There are many wonderful reasons to once again share your life with a companion animal, but the decision of when to do so is a very personal one. It may be tempting to rush out and fill the void left by your pet’s death by immediately getting another pet. In most cases, it’s best to mourn the old pet first, and wait until you’re emotionally ready to open your heart and your home to a new animal. You may want to start by volunteering at a shelter or rescue group. Spending time caring for pets in need is not only great for the animals, but can help you decide if you’re ready to own a new pet.
Some retired seniors living alone may find it hardest to adjust to life without a pet. If taking care of an animal provided you with a sense of purpose and self-worth as well as companionship, you may want to consider getting another pet at an earlier stage. Of course, seniors also need to consider their own health and life expectancy when deciding on a new pet. Again, volunteering to help pets in need can be a good way to decide if you’re ready to become a pet owner again.
Everyone experiences grief differently. Many people who lose a friend or loved one experience several stages of grief as they deal with a loss. Psychologists who work with people as they grieve have noticed the ways that people cope with the loss. There are some commonalities including distinct stages such as denial, anger, and depression. There are a few more to name, but what you may not know is that these stages aren’t about the grief of someone dying, but rather something extremely different. There is now more to it than the five that we hear about of the stages of grief which I’ll explain in a minute.
Types of Loss
Most people associate the word ‘grief’ with the sadness that surrounds the death of a loved one. Yet people can experience grief after many other losses, including a breakup, losing a job or a home, having a part of the body like an arm or leg removed, being diagnosed with a terminal illness, or having to drop out of college.
The Grief Process
People go through a number of stages when they lose a loved one. You may experience them in any order and any number of times. You may feel sad at the beginning, move on to anger, and then return to feeling sad. The crucial thing to remember is to take your time to grieve. Allow yourself to do it in own unique way. Never let anyone tell you how to grieve or for how long. It’s up to you! Accept any help if it is given to you while you’re grieving.
What You Probably Don’t Know About Grief
Many people think that the stages of grief are about the loss of a loved one. However, they are actually related to people who are dying, rather than a personal loss. Dr. Kübler-Ross is credited with developing the stages of grief, but most people don’t realize that what she created was for people with terminal illness. She wrote a book called On Death and Dying. In this book, Dr. Kübler-Ross writes about the stages of death: denial and isolation, anger, bargaining, depression, and acceptance. Dr. Kübler-Ross interviews terminally ill patients and discusses how impending death affects a person. She writes about how the patient, their family, and loved ones cope with the loss.
She did not develop the stages to describe the stages of loss people go through when some dies, however, they are about what terminally ill people experience. The stage includes – denial, anger, bargaining, depression, and acceptance. After some time, people adopted these phases to apply to their personal loss, and they seem to fit well. Below you will find the stages of grief as a terminally ill person experiences them. They are also applicable to losing a loved one. *Just as a quick note that not everyone will go through these stages of all of these. Some miss a few stages while grieving. This will only be for some people not all.
Kubler Ross Stages of Grief Dr Elizabeth Dr. Kübler-Ross , a Swiss psychiatrist, introduced the concept of the five stages of grief in 1969. What are the five stages of grief? According to Dr. Kübler-Ross’ model, there are several stages of grief. Through denial, anger, bargaining, depression, and acceptance people process their loss, whether that’s a terminally ill patient or a person coping with losing a loved one. She was also interested in the way people communicate their grief to others through their words, emotions, and behavior.
When you’re in denial about the loss, you try to convince yourself or others that the event hasn’t happened or isn’t permanent. You know the facts, of course. If your spouse has died, you might accept that it happened but then believe for a time that his death means nothing to you. If your parents have divorced, you might try to get them back together even after they’ve moved on to other relationships.Following a job loss, you might go back to work thinking they didn’t really mean it when they fired you.
Anger is a typical reaction to loss, and it’s one of the Dr. Kübler-Ross’ stages of grief. You may be angry with the person who left you, or you may feel angry with yourself. You might express the anger by shouting at people through sarcasm, or by showing irritation at everything from significant letdowns to minor problems. This stage can also happen at any time, even after you go through a period of acceptance. The benefit of the grief stages is that they help you deal with the loss and move on. Anger can energize you to do just that.
At some point, you may find yourself bargaining, trying to get back what you lost. This part of the stages of grief and the higher power help the person cope with the loss. People often promise their God that they will live a better life if only they can take back what they lost. A child may promise to pick up their toys and stop arguing with their siblings if their parents will get back together. Bargaining is a stage that sometimes brings up uncomfortable discussions that go nowhere.
Next in the five stages of grief is depression. The depression can present with any of the symptoms of clinical depression. You may feel sad and cry often. You might notice changes in your appetite or sleep patterns. You might have unexplained aches and pains. This stage can be too painful in a breakup in a relationship and in the death of a loved one. If you’re moving through these stages of grief, divorce can seem like the end of your life, so it’s natural to become depressed. It is a situational depression that may soon pass naturally as you move toward acceptance.
The last of the Dr. Kübler-Ross stages of grief is acceptance. You understand what you lost and recognize how important that thing or person was to you. You no longer feel angry about it, and you’re finished with bargaining to get it back. You’re ready to start rebuilding your life without it.
Complete acceptance brings complete peace, but often, this stage is never complete. Instead, you might feel sad during death anniversaries or angry when you feel current circumstances would work out so much better if you just had that thing or person with you now. When you accept the loss fully, you’ll understand the stages of grief better.
The Seven Stages of Grief Dr. Kübler-Ross refined her model to include seven stages of loss. The 7 stages of grief model is a more in-depth analysis of the components of the grief process. These seven stages include shock, denial,anger, bargaining, depression, testing, and acceptance. Kubler-Ross added the two steps as an extension of the grief cycle. In the shock phase, you feel paralyzed and emotionless. In the testing stage, you try to find realistic solutions for coping with the loss and rebuilding your life.
There have been different grief models over the years. In addition to the 5-stage and 7-stage models, you may hear about the four stages of grief and the six stages of grief. John Bowlby, a British psychologist, studied the stages of grief and loss long before Dr. Kübler-Ross presented her five stages of grief. His work was with children with attachment issues. One of these, of course,is grief. Bowlby’s four stages of grief are: 1) shock and numbness, 2) yearning and searching, 3) despair and disorganization, 4) reorganization and recovery.
The six stages of grief s merely an extension of Kubler-Ross’ original 5-stage process. The only difference is that the shock stage starts before denial. What are the stages of grief then? That is a question only you can answer. The stages of grief you go through might be different from the ones someone else experiences.
Sometimes, the grief process doesn’t go well. The bereaved may become stuck in one stage of grief, unwilling or unable to move through the process. In a worst-case scenario, the person can continue to be angry, sad, or even in denial for the rest of their life. When this happens, they usually need to talk to a grief counselor before they can move out of that stage of grief. Otherwise, the intense pain might continue over the course of many years. Also, they may miss opportunities to build a new life that can bring them happiness in the here and now.
Help When You’re Grieving
Grief counseling helps people who are overwhelmed after a loss. If they are stuck in one stage of grief, this type of counseling can help move them towards recovery. The counselor assists and guides you as you talk about the loss, identify your feelings, and separate from and learn to live without the person you lost.
Along the way, they will help you understand the stages of grief. They will support you by providing information about grief in general as you go through the process. They help you identify and hone the coping skills you’re already using. If the method you’re trying to use for coping isn’t working out, the grief counselor can help you identify that problem and introduce you to coping skills that work better.
A woman in tears, openly expressing her pain, wanting to connect with a male partner whose impermeable stoicism has left her feeling alone. A man, his heart breaking on the inside, confused amidst a world shattered by loss, locking his pain behind a wall of silence, unsure how to express vulnerability or to receive support.
Is there really a difference in the way men grieve and respond to loss? After doing some research it’s safe to say that I’ve known plenty of men who fit the stereotype: emotionally controlled, disinclined to talk about matters of the heart, as apt to seek out solitude as connection focusing on action rather than talk.
Men grieve far more than we show or discuss. One of the biggest reasons for the misunderstandings on this subject is that we don’t talk about it, and we do a rather poor job of listening when women try to share their own grief or prod us to talk about ours.
We almost never cry in front of other men. If we feel that a woman is “safe,” we may cry with her. But most of our tears are shed when we are alone, perhaps while driving our vehicles. In all too many cases, our hot tears become a deep-freeze of anger or rage. Most very angry men are very sad men.
But these were the surface responses of men whose inward experiences were far more nuanced, changeable, and multidimensional than stereotypes can capture or assess.
The real picture was more complex.
Still, it can be helpful to bear in mind, without being rigidly attached to, the perspectives of researchers and clinicians convinced such differences are real. This perspective suggests that, as a group, men tend to be less expressive of their feelings—with the possible exception of anger—and that this disinclination to disclose or process emotions may actually intensify during times of stress and vulnerability.
So it is with grieving. When a cherished pet is critically ill or has died, men and women will not experience or express their reactions in the same way. Failure to understand and accept our different ways of grieving can result in hurt feelings and conflict between partners and among family members during a very difficult time. There are big decisions to be made – whether to proceed with expensive diagnostic procedures or treatments, choices about euthanasia, options for care of the pet’s body after death. There are goodbyes to be said and there is grief work to be done. Behaviors can be misinterpreted; needs may be misunderstood; expectations may not be met.
Male grief has certain characteristics that are important for us to know. Otherwise we may assume that, when faced with the crisis of losing a beloved companion animal, real men don’t grieve.
Like everyone else in our Western culture, men are saddled with certain stereotypes. Real men are supposed to be tough, confident, rational and in control, not only of themselves but of situations as well. Real men don’t cry, aren’t afraid of anything and wouldn’t be caught dead asking for directions, let alone for help. Real men know exactly what to do in a crisis, and they’re strong enough to support the rest of the family, too. Add to these stereotypes the assumption that, if a man doesn’t express thoughts and feelings of grief the same way a woman does (by crying or by openly sharing with others, for example), then he must not be grieving at all. If the grief doesn’t show, it must not be there!
Scientific studies indicate clear differences between the male and female brain, not only in how it is structured, but in how it is used as well. We know that the left side of the brain houses language skills, while the right side controls spatial problem-solving skills. That the connective tissue between the two sides (the corpus collosum) tends to be thinner in males than in females may explain why a man tends to use one side of his brain at a time, while a woman uses both – and why a man is less able to verbalize what he is feeling. Other studies indicate that from puberty a male produces less of the tear-producing hormone prolactin, leaving him physiologically less able to cry.
So do real men grieve when they lose a beloved companion animal? Most certainly they do– but they may do so in an instrumental rather than an intuitive way.
In general, men tend to put their feelings into action, experiencing their grief physically rather than emotionally. They deal with their loss by focusing on goal-oriented activities which activate thinking, doing and acting. Rather than endlessly talking about or crying over his lost pet, for example, a man may throw himself into time-limited tasks such as digging the animal’s grave, constructing a burial box, carving a memorial marker, planting a memorial garden, or writing a poem or a eulogy. Such activities give a man not only a sense of potency and accomplishment as he enters his grief, but also a means of escaping it when the task is done.
If a man relates the details of his loss to his closest male friends, it’s likely to be around activities like hunting, fishing, sporting events and card games.
Although a man may let himself cry in his grief over losing his pet, he is more likely to do it alone, in secret or in the dark.
Regardless of the differences, the pressures of grief are still present for both men and women, and the tasks of mourning are the same: to confront, endure and work through the emotional effects of the pet’s death so the loss can be dealt with successfully. Grief must be expressed and released in order to be resolved, and men need encouragement to identify and release emotions, to talk about and share their thoughts, and to accept help and support from others.
There is evidence that men are more likely than women to remain silent or grieve in isolation, engage in action-oriented forms of grief expression, or lose themselves in distractions such as work or throwing themselves into a new relationship. Research suggests that men appear to be more susceptible to developing a reliance on alcohol or engaging in risk-taking behaviors following a loss and are more likely than women to commit suicide following the death of a spouse. Some studies suggest that men are more likely to use the strategies of avoidance, intellectualization, and minimization when grieving and, although research is inconsistent on the point, they may have a greater tendency to somaticize emotional and psychological pain
Grieving men may be at greater risk of death when compared with men of the same age who are not grieving. Some believe this may reflect the impact of internalized stress or the effects of poor self-care. Others suggest that men tend to have smaller social networks than women and more difficulty asking for and accepting support, making them less likely to receive, and more likely to reject, encouragement to prioritize one’s health .
Theories about purported gender patterns among those who are grieving tend to focus on biology, socialization, or a combination of the two. Biological hypotheses range from the impact of testosterone and the nervous system to concepts drawn from evolutionary psychology (such as speculation on the biological basis of role differentiation).
Psychologist Judith Stillion, PhD, CT, articulates one of the earlier arguments on behalf of the importance of socialization. During childhood, boys and girls receive different messages that profoundly impact the ways they grieve, she says. Boys, she believes, receive four fundamental messages about what it means to be a man and what constitutes proper male behavior. She refers to the first as “the stiff upper lip syndrome,” in which boys are taught that men must be strong and stoical in the face of difficulty and are discouraged from expressing vulnerability and encouraged to accept pain without complaint. The second is that a man must be in control at all times, self-reliant and able to handle any situation without asking for help. She calls this the”powerful loner stereotype.” The third message is that a man must protect and keep safe those who are important to him and never trouble them with his own struggles or concerns. The last is that a man must be ever ready to overcome any challenge without fear.
Doka and Martin suggest that men and women express their grief along a continuum of styles ranging from those that they call intuitive, centering on the expression of affect, to those they call instrumental,which find expression physically and cognitively. Although they are careful to contextualize gender within a matrix of other variables—underscoring that no two people or groups will ever grieve exactly alike and that most prefer some blending of these styles—in general men seem to feel more comfortable with a style more heavily weighted toward the instrumental end.
Though we may hope boys in the rising generation of men are no longer receiving such rigid injunctions, many males continue to receive such messages as adults, even when grieving. I’ve worked with many men who report that when they’ve attempted to talk about their feelings or shed tears they have felt rebuffed or gotten the message, subtly or overtly, to “be strong,” “don’t cry,” “suck it up,” or “don’t make others feel uncomfortable.” Such experiences not only close down opportunities for connection and authentic support but also can undermine trust and reinforce stereotyped patterns and defenses tending toward isolation.
Cultural expectations about what constitutes healthy grieving hold that to heal, one has to speak about, process, and “work through” one’s thoughts and feelings by sharing them. Ideally this allows the bereaved to adapt to the world in the absence of their loved one while maximizing social support networks and reinvesting in other relationships and meaningful activities. Those who grieve silently rather than talking about their feelings may be labeled as excessively withdrawn, clinically depressed, or uncommunicative. Men who prize stoicism as an expression of independence or dignity, or as a way of not putting their burdens on others may be considered to be in in denial or out of touch. Men who engage in action-oriented expressions of grief, such as physical activity or private rituals away from the eyes of others, or who attempt to cope through distraction, positive thinking, planning for the future, or intellectualization may be accused of running away from their grief.
Though any of the above tendencies when taken to extremes or excessively relied upon can lead to complications, there is nothing inherently wrong or unhealthy about any of them. In fact, these tendencies may simply be a part of a style of grieving that social worker Tom Golden, LCSW, (2010) refers to as “the masculine side of healing.”
By this he means that there may be a style of grieving and healing that men gravitate to more readily than women. In his book Swallowed by a Snake: The Gift of the Masculine Side of Healing, he puts it as follows: “The masculine side of healing is not as accepted a mode of healing as the more traditional verbal and emotional expressions. It tends to be quieter and less visible, less connected with the past and more with the future, [and] less connected with passivity and more aligned with action. As a consequence, I have noticed repeatedly that people who use a predominance of this masculine side of healing are suspected even by mental health professionals of ‘not really healing.'”
By thinking in terms of a style of healing in which men may feel more at home, we can better assess and appreciate the potentially useful aspects of this style in the larger context of one’s bereavement journey, rather than dismissing it as dysfunctional.
So is the inward experience of grief really different for men and women? Or is the pain simply more likely to find expression along gender lines? Maybe the
difference is not so much in the experience of grief itself but in how the pain of grief is absorbed, processed, and expressed, or what we typically call mourning.
Unquestionably, many men have inherited the messages described by Stillion—the powerful loner guarding emotion behind a wall of strength, unwilling to be vulnerable,
uncomfortable asking for support. But this response may be reflexive and potentially self-protective when one is feeling unsafe or overwhelmed. When the value of
such responses are affirmed and the boundaries they set respected, and when the language of action, silent gestures, personal codes of honor, are decoded and affirmed,
men often become more forthcoming about things which they had been struggling to carry alone.
If we mistakenly view a surface style as indicative of an unwillingness to connect or process on a deeper level, or if we discount this style as invalid, insisting that those for whom it is helpful are not doing the work of bereavement, we will miss opportunities to go beneath the surface and offer support. If we accept and respect what may be a masculine or instrumental style of healing, we can avoid the trap of stereotyped expectations and build trust by not dismissing these strategies or attempting to force ourselves beyond one’s defenses.
It must be remembered, of course, that this style, although it can become an avenue into healing, may also lead to serious complications, causing men to suppress or feel shame about normal thoughts, feelings, and difficulties which often attend grief, and potentially creating distrust when it comes to asking for or accepting support. It can also lead to isolation, relational conflict, undisclosed anxiety, depression, or a reliance on dangerous forms of escapism such as drinking or extreme risk-taking, possibly leading to premature death.
It’s also worth remembering that there are plenty of men who gravitate toward an intuitive style of mourning and many women who prefer one that tends toward the instrumental. And that these preferences may be more fluid than fixed, changing with the context, level of trust, and so on.
When the subject of gender differentials in grieving comes up among social workers, the conversations can get pretty lively. Some argue that, although we need to be careful not to overgeneralize, there are clear differences in style between men and women. Others may agree that it’s wise to be aware of ways gender socialization can impact one’s sense of self but distrust such generalizations because they can dull one’s sensitivity to nuance, subjectivity, and changeability when it comes to processing and healing from any significant loss.
The good news is most hospice and bereavement social workers are flexible and inclusive when it comes to these matters, incorporating multiple dimensions of experience and expression into their work, going beyond the traditional verbal explorations that have typified grief bereavement counseling in the past. They understand the need to take the time necessary to establish trust and safety. They respect a client’s defenses and are sensitive to the ways these may be affected by gender. And most respect the potential value of solitude and of more action-oriented strategies for coping and healing, whether these strategies are preferred by a man or a woman.
To better understand men who are grieving, it’s helpful to recognize that:
Our own gender biases may influence how we “read” another gender’s grieving.
Although men and women grieve differently, neither way is inappropriate. It is not helpful to take sides, supporting one way of grieving over another.The way we grieve is as individual as we are: some men grieve in traditionally “feminine” ways and some women grieve in traditionally “masculine” ways. What looks like inappropriate behavior may be a man’s way of avoiding feelings or displaying emotions publicly. A man should not be judged for how he is grieving. If a man seems more angry than sad at the death of his pet, he may just be angry at the situation – and anger may be the only way he knows to express his grief. It’s useful in such cases not to take the man’s anger personally, or to react defensively against it.
Some men turn to drugs or alcohol in an effort to numb the pain of loss, or to lower their inhibitions so they can let loose their emotions. They need to know that, because alcohol is a depressant, it will only add to the sadness they’re already feeling.
Men are less likely to seek the support of others (either individually or in a group) in order to express (think, talk, cry, or write about) their feelings, especially if they don’t feel respected, or if they find certain aspects of grief to be embarrassing. A man needs encouragement to share his reactions and emotions, to explore what his pet’s death means to him, and to acknowledge how the loss affects his life.
Men often appear to be further along in the grieving process than they actually are. Even if a man appears to be all right, it is unwise to make assumptions about what he is feeling. When in doubt, ask!
Remember, in my last post that I mentioned about that children don’t grieve after a loss or death? Well, that’s not a hundred percent, true. It’s quite the opposite.
Children and teenagers express their grief in a variety of ways. Some may be sad and verbalize the loss like many adults. Depending on their ages, however, they may show sadness only sometimes and for short periods. Children may complain of physical discomfort, such as stomachaches or headaches. Or they may express anxiety or distress about other challenges, such as school or sports.
Loss is more intense when the child had a close relationship with the person who died, such as a parent or sibling. However, this is not always obvious from a child’s reactions. A child’s grief may seem to come and go. And a child may rarely verbally express his or her grief. This is normal. Your child may also re-experience the intensity of the loss as he or she grows up. This may occur more often during certain milestones in life, such as starting school or going on a first date. Even into adulthood, important events such as graduating from college or getting married may trigger renewed grief.
Age has a large influence on childhood grief and how children understand and react to the death of a family member, friend, pet, or close adult. It is good to know where a child is likely to fall developmentally. This will help you to better understand how they view the loss and will help you to make age appropriate choices about language and interventions.
Of course age won’t help you to predict exactly how a child will react, other factors will have an impact as well. Maturity, past experiences, education level, socio-economic status, what part of the world you live in, and access to support resources are merely a few of the many factors that influence us all.
Understanding how children and teens view death
It is helpful to know how children understand death at different stages of development. It varies by age and often changes as a child develops emotionally and socially. Other factors also influence children’s reactions. These can include personality, previous experiences with death, and support from family members. Keep in mind that children do not move abruptly from one stage of development to the next. And features from each stage may overlap.
It is advised that with children of any age or background you should do the following:
Acknowledge their presence, their importance, their opinions, thoughts, and feelings.
Be patient and open minded. Allow them to grieve in their own way.
Be available – Sit with the child, listen to them, and answer their questions.
Reassure them the circumstances that led to the death were extreme and it is unlikely other adults in their lives will die any time soon (unless this is untrue).
Let them know that a range of different emotions are normal.
Validate their feelings and do not minimize them.
Check in with other adults involved in their life – teachers, school counselors, coaches.Explain death using real words such as “died” rather than confusing phrases such as “gone to sleep.” You can say that death means the person’s body has stopped working or that the person can no longer breathe, talk, move, eat, or any of the things he or she could do when alive.
Share your family’s religious or spiritual beliefs about death.
Encourage your child to ask questions, and try to answer them honestly and directly. If you do not know the answer to a question, help find the answer.
Use books, drawings, or role-play games to help a younger child understand death.
Make sure your child understands that he or she is not to blame for the death and that the person who died is not coming back.
Provide lots of affection and reassure your child often that he or she will continue to be loved and cared for.
Encourage your child to talk about his or her emotions. Suggest other ways to express feelings, such as writing in a journal or drawing a picture.
Without overwhelming your child, share your grief with him or her. Expressing your emotions can encourage your son or daughter to share his or her own emotions.
Help your child understand that normal grief involves a range of emotions, including anger, guilt, and frustration. Explain that his or her emotions and reactions may be very different from those of adults.
Reassure your child that it is normal for the pain of grief to come and go over time. Explain that they cannot always predict when they will feel sad.
If your child is older, encourage him or her to talk with an adult outside the family, such as a teacher or a clergy member. You can also consider an age-specific support group.
Keep routines and caregivers as consistent as possible, and continue setting limits on behavior. Care, consistency, and continuity help children feel safe.
Encourage spending time with friends and engaging in other age-appropriate activities.Reassure your child that it is never disloyal to the person who died to feel happy and to have fun.
Addressing daily routine and role changes
The death of a parent or other close family member can directly affect a child’s day-to-day life. Family routines and roles change, such as a surviving parent having to return to work and spend less time at home. These changes are an added disruption and may add to a child’s distress. Even young children will benefit from extra preparation, conversations, and support around these transitions.
Although the death of a family member with cancer is painful, it may also lessen some of a child’s stress. For example, the death of a sibling might mean that a parent is not dividing time between a sick child at the hospital and another child at home. It is normal to have strong, mixed feelings, including some relief, when a family member’s suffering is over after a long or difficult illness. Help your child realize that these feelings are normal and that he or she should not feel guilty for having them.
Honoring and remembering the person who died
Children as young as age 3 understand the concept of saying goodbye. They should be allowed to choose how they say goodbye to a loved one.
Give preschool-age and older children the choice of attending memorial services. But do not force them to attend if they do not want to.
Some children may want to attend a memorial service but not a viewing or burial.
Allow older children and teenagers to help plan memorials if they want.
Talk with children about what will happen at a service ahead of time. Consider visiting the church or cemetery.
Ask a trusted adult to help take care of young children at a service or to go home with a child who decides he or she wants to leave early.
I have put together a list of typical grief responses by age. Again, every child is different and we can’t quantify all the unique and individual qualities of your child in this list. If your child reacts in a way that concerns you then it might be a good idea to talk things over with an expert like a pediatrician, school counselor, or child psychologist.
Infants (birth to 2 years)
Have no understanding of death.
Are aware of separation and will grieve the absence of a parent or caregiver.
May react to the absence of a parent or caregiver with increased crying, decreased responsiveness, and changes in eating or sleeping.
May keep looking or asking for a missing parent or caregiver and wait for him or her to return.
Are most affected by the sadness of surviving parent(s) and caregivers.
Preschool-age children (3 to 6 years)
Are curious about death and believe it is temporary or reversible.
May see death as something like sleeping. In other words, the person is dead but only in a limited way and may continue to breathe or eat after death.
Often feel guilty and believe that they are responsible for the death of a loved one, perhaps because they were “bad” or wished the person would “go away.”
May think that they can make the person who died come back if they are good enough.
May worry about who will take care of them and about being left behind.
Are very affected by the sadness of surviving family members.
Cannot put their feelings into words and instead react to loss through behaviors such as irritability, aggression, physical symptoms, difficulty sleeping, or regression (such as bed-wetting or thumb-sucking).
School-age children (6 to 12 years)
Understand that death is final.
May think of death as a person or a spirit, like a ghost, angel, or a skeleton.
By age 10, understand that death happens to everyone and cannot be avoided.
Are often interested in the specific details of death and what happens to the body after death.
May experience a range of emotions including guilt, anger, shame, anxiety, sadness, and worry about their own death.
Struggle to talk about their feelings. Their feelings may come out through behaviors such as school avoidance, poor performance in school, aggression, physical symptoms, withdrawal from friends, and regression.
May worry about who will take care of them, and will likely experience feelings of insecurity, clinginess, and abandonment.
May worry that they are to blame for the death.
Teenagers (13 to 18 years)
Have an adult understanding of the concept of death but do not have the experiences, coping skills, or behavior of an adult.
May act out in anger at family members or show impulsive or reckless behaviors, such as substance use, fighting in school, and sexual promiscuity.
May experience a wide range of emotions but not know how to handle them or not feel comfortable talking about them.
May question their faith or their understanding of the world.
May not be receptive to support from adult family members because of their need to be independent and separate from parents.
May cope by spending more time with friends or by withdrawing from the family to be alone.
To end this, help your child understand that the person who died lives on in his or her memory. Parents who are terminally ill sometimes leave letters, videos, or photographs to help children remember how much they were loved. Children can also compile pictures and other special items to create their own memory. For younger children, most of their knowledge of the person who died will come from memories of other family members. Talk about the person often, and remind children of how much the deceased person loved them. Over time, children can understand that they would not be who they are without the influence of the special person who died.
Grief myths . . . they sure as hell drive me crazy. And, I am sure that it would drive you crazy too when you hear/read them somewhere, whether it is on the Internet or just from others around us.
There are just so many of them, they come out in so many ways, and they make our grief so much more difficult. Friends and family have unrealistic expectations about what or how our grief will or should look like because of these myths. Heck, truth to be told that sometimes WE have our own unrealistic expectations because of these myths. So today we are setting out to dispel about 64 myths about grief yet there are more that you may have heard once and for all!
Disclaimer:what makes many of the things on this list myths is that they are not universally true. This does not mean they are never true. This is a very very important distinction, so keep it in mind as you read/watch the video that will come live soon on my channel. Also, there are some common themes with these myths so, where applicable, I have clustered the myths by themes in different categories if it made sense to do so.
Okay, as Eleanor would say, let’s dive in!
1. Grief has an endpoint.
Sorry friends, grief is going to be with us forever. It’s a part of us and after all we are still humans. This isn’t a bad thing, though! Don’t get me wrong! It just means that when we lose something or someone we loved deeply, that loss will be with us in some way forever. Grief may feel different or become more manageable to many of us, but it will always be there and that’s okay. Too bad people often make us feel like we should have reached the “end” of our grief.
2. Once you are done grieving, life will return to “normal”.
All the things you’ve heard about getting over grief, going back to normal, and moving on – they are misrepresentations of what it means to love someone or something like your pet who has died. I’m sorry, I know us as human-people that does appreciate things like closure and resolution, but this isn’t how grief works.
This isn’t to say that “recovery” doesn’t have a place in grief – it’s simply ‘what’ ‘how’ ‘when’ we’re recovering from that needs to be redefined. To “recover” means to return to a normal state of health, mind, or strength, and as many would attest, when someone very significant dies, we never return to a pre-loss “normal”. The loss, the person who died, our grief – they all get integrated into our lives and they profoundly change how we live and experience the world.
What will, hopefully, return to a general baseline is the level of intense emotion, stress, and distress that a person experiences in the weeks and months following their loss. So perhaps we recover from the intense distress of grief, but we don’t recover from the grief itself.
My questions to ask you all is this while you’re reading and watching my video when it comes to light is this:
How long does it take to fall in love?
How many seconds pass before a parent loves their newborn child?
How many arguments and rivalries can the bonds of sibling-hood withstand?
How many heart-to-hearts and late-night phone calls before you know a friend is true?
These are silly questions, aren’t they that I am asking to you? They’re like most riddles with no answer. There’s no scale to measure love or to quantify the bonds of friendship and family.It reminds me of one of my favorite lullabies, appropriately titled ‘The Riddle’. It’s a really simple song that my mother used to sing when I was young. It goes…
I gave my love a cherry that had no stone. I gave my love a chicken that had no bone. I told my love a story that had no end I gave my love a baby, with no cryin’.
How can there be a cherry that has no stone? How can there be a chicken that has no bone? Whoever heard a story that never ends? How can there be a baby with no cryin’?
Well a cherry when it’s bloomin’, it has no stone. A chicken when it’s pippen’, it has no bone. And the story of ‘I love you’ will never end. A baby when it’s sleeping, there’s no cryin’.
“The story of I love you will never end”; what a beautiful lyric. What a true lyric.Love, connection and caring, these are things that live on; they don’t just end….you know it…I know it…it’s just common sense, people. So why then do we often hear this questions like these?
“How long does grief last? When will it end? When will I be over it?”
If grief is the result of losing someone we love and care for, then there’s no logic that can be applied or formula that can be used in determining how long it will last. If you don’t believe me, just give it a try.
So feelings of grief will diminish, but not disappear. Grief is infinitas which means ‘being without finish’. Grief doesn’t end, but with time it should look different; hopefully more peaceful, connected, and positive. Here are a few small indicators you might be making progress in your grief. I find it important to note, you can take steps forward, yet still grieve your loved one. Just because you return to work, date, or decide to have a child does not mean you won’t continue to grieve the person you lost. The capacity you have to be happy, enjoy life, and love others exists in addition to the love you feel for your deceased loved ones. Because love…love is asininity.
You start to feel just a little more ‘normal’
You have more good days than bad
You experience an increase in energy and motivation
You remember memories fondly as opposed to experiencing them as grief triggers
You can constructively think about the loss of your loved one and the impact it’s had on your life
Your sleep patterns return to normal
You experience feelings of optimism about the future
Improvement in performance at work
You’re able to focus on personal health and wellbeing
You feel ready to date again, have more children, and/or make new friends.
Your relationships feel more functional and healthy
You feel as though you are ‘rejoining the human race’
You feel ready to get out of the house
You experience an increase in desire for emotional and physical intimacy
4. The first year of grieving is the worst. 5. Time heals all wounds.
Time does NOT heal all wounds. A more apt saying here is “IT’S WHAT YOU DO WITH THE TIME THAT HEALS.” Like any other aspect of life, mourning is an active, working process, not a passive one.
6. You recover from grief like you recover from a cold, it gets a little better every day until it completely goes away. Nope, not true either. There are going to be times that we will have our ups and downs, good days and bad days, good months and bad months. No matter how much we wish it was, grief isn’t a straight line and the end point isn’t “all better”.
I’m sure this has been a non-issue for many of you, but for others it’s not quite so straightforward. It just makes me immensely sad to think of some widow or widower stuffing photos into a box because someone made them feel that leaving photos up is wrong, abnormal, or an indication that they are stuck in their grief.
There are reasons why people hold on to photos and there are reasons why people don’t. Here are a few, but not all, of those reasons.
Why People Hold on to Photos:
For children and/or other family members…like brothers, sisters, sons, daughters, grandsons, and granddaughters. When someone dies, his or her branch on the family tree doesn’t just fall off. That person is still a part of the family and hiding reminders of them, even if you would prefer to do so, can make other family members feel like their loved one’s memory is being erased.
Because you’re still a family: I have 5 brothers and sisters and, as I’ve said in past posts, we all still consider our mother to be a part of our family. She exists in memory and she continues to influence our family to this day. Whether her photo hangs on the wall has no bearing on her prominence in our family; but memories and moments involving her are an important part of our history. So why shouldn’t they exist in our homes?
Photos also give future generations a chance to connect with their deceased ancestors and family history. How else would you know you have your great grandmother’s nose or see aunt Carol smiling with her prized roses? Anyway, what was the point of taking photographs of these people if you didn’t plan on looking at them later on down the road?
Nostalgia and Memories: This is the most common-sense reason and why many people take pictures in the first place. Photos preserve memories like pre-school graduations, birthday parties, kids posing happily with artistic creations, weddings, etc. You know these moments are fleeting and in time our brain will no longer be able to remember them with the same vivid imagery, so you take photos.
Photos can make you smile, laugh, cry and remember. If you don’t believe me just ask Kodak, Canon, Shutterfly, Instagram, Facebook or Apple. Mankind’s penchant for taking and sharing images is stronger than ever.
Photos are tangible: One of the most difficult things about losing someone is the feeling that their memory is fading. Their smell, voice, and the feeling of their embrace – you wish for them to appear in a dream just so you can remember these things again. Photos are an accurate and literal reminder of your loved one.
They like photos: Dude, some people just really like photos. Put an avid camera clicker together with someone who really likes their family and what do you get? You get photo album after photo album of family members and friends. Accept it.
An appreciation for history: Some people just really care about history. My older brother, for example, is a history buff. He will leave no stone unturned in archiving our family history. It’s pretty cool and I’m certain our family’s next generation will appreciate his efforts; but seldom does a letter, film negative, or VHS recording that goes unturned in his pursuit.
In honor and remembrance: Many people prominently display photos of deceased individuals to honor them. I have wasted an irrational amount of time walking down the halls of Johns Hopkins Hospital looking at dead doctor after dead doctor. Why are they all hanging there? To honor and give them their place of prominence in an institution they helped to create and grow.
Portrait paintings of the rich, powerful, important and influential have been commissioned for countless microcosms throughout history. Walk the hall of any government building, club, or business and you will see this is true. In the same vein, it should come as no surprise that someone might see the family portrait as a way of honoring and paying tribute to individuals they love and adore.
Why People Don’t Have or Display Photos:
Photographs are a grief trigger or are too hard to look At: As we’ve established, many people find looking at photos of their deceased loved one to be very difficult. They may not choose to get rid of photos, but they might choose to put them away for a while. Sometimes people will continue to display photos even though it’s hard because they feel putting them away is disrespectful or means they are forgetting.
I think it’s probably incorrect to look at the act of putting photos away as a signal someone is ‘moving on’. Part of grieving well is learning to integrate the deceased loved one’s memory and being able to look at photos of deceased loved ones and feel happy or positive emotion is often a signal someone is doing better.
Grievers should feel okay about putting away photographs if they need to, this in no way means you are forgetting. Just because you put their photo away doesn’t mean the photos are gone forever. Though they may be too hard to look at right now, there will hopefully come a day when you can look at them and also remember fond memories.
Important Note: If you have children in the home, I would consider this more carefully. Consistency and connection are important for children and they may not understand the complicationed emotions and actions of adults. Please e-mail us if you want more clarification on this topic.
Photos are a grief trigger for others: Although you may be okay with photos, others in your house may not be. Together you may decide to put away photos away or you may arrive at some other compromise.
There aren’t any: Sadly some people don’t actually have any photos of their loved one. This is often the case with the death of a young child or baby, when someone has been distant or estranged, if the family photos were lost or destroyed, or if the person was just generally camera shy.
To avoid judgment or having to explain: Some may worry that others will judge their coping; some grievers may feel internal and/or external pressure to put the photos away, and some people may put photos away to avoid having to answer questions from visitors who didn’t know their loved one.
Bad memories: Not everyone has a past full of happy moments and fond memories. Old photos may be a reminder of a past they would just as soon forget.
Photos make them feel stuck: For some it may feel difficult to move forward when reminders of the past are everywhere. For this reason they may choose to put a few or all of the photos away.
9. If you haven’t gotten rid of your loved one’s belongings after ____years it means you’re “stuck”.
10. If you still cry when you think/talk about your loved one after ____ years it means you’re “stuck”.
We all are usually pretty hesitant to even hint at categorizing, labeling or classifying grief. There are so many different grief responses that can and should be considered as ‘normal’ and no two people will have the exact same feelings and experiences after a death, not even those from the same family, region, religion, or culture. All that being said, however, there’s merit in examining how those with similar traits typically view and interact with the world, as long as we do it with taking it as a grain of salt.
We don’t always think of gender as complicated because we sometimes confuse it with ‘sex’, which refers to our biological makeup and determines what box we check at the DMV. Gender is not actually a matter of fact, as psychologist Dr. Stephanie Shields of Pennsylvania State University notes, “…Gender is something that one practices (in nearly every sense of the word), rather than only what one inflexibly is.” Societies, cultures, and even families have differing views on what it means to be prototypical male or female and it is rare that real-life individuals ever fit perfectly into these molds.
Today, while I am writing this to you as you’re reading this I would like to share where the similarities and differences might lie. In conceptualizing grief and gender, I want us all to always remember these things exist on a continuum.
Although men are often thought of as “less emotional,” I think it’s important to quickly discredit the notion that men don’t feel the same intense grief emotions as women. Prominent grief researcher, Kenneth Doka, and his colleague Terry Martin have already served up a heaping bowlful of food for thought on this topic in their book Grieving Beyond Gender. In this book, they outline different grieving styles which they associate with being characteristically “masculine” or “feminine”, although they note that these styles exist on a continuum and that gender is merely a contributing factor.
In general, our culture has come to expect people to grieve in an emotional way, which is characteristically more female but this isn’t always the case. Men may just grieve in a different way to females. It’s easy to put things like tears and sadness into the context of grief and when we see them we say, “Ah yes, this person is grieving appropriately”. Doka and Martin associate this type of grieving with the intuitive grieving style. Intuitive grief is experienced mainly in terms of feelings and emotions – “I felt sad” or “I felt angry” – and the grief response is usually focused on exploring and expressing these emotions – “I cried all night” or “I got so mad I couldn’t think.”
However, not everyone likes to get up close and personal with their feelings. So although people may experience the same type of emotions, some people might feel and express them differently. Doka and Martin associate this type of grieving with the instrumental grieving style. Instrumental grief is experienced in more physical and cognitive ways – “I couldn’t stop thinking about what happened” or “I felt like I couldn’t breathe.” The instrumental grief response is expressed in physical, cognitive or behavioral ways and looks more like ‘doing’ or ‘taking action’.
Although instrumental grievers might not see a direct correlation between their feelings and their response, if asked what they “did” in response to their loss as opposed to what they “felt,” they might say things like they spoke about the person a lot, created a lasting memorial, immediately found ways to further their loved one’s legacy, or they got involved in charity or activism in their loved one’s memory. This type of grief expression can be a bit more difficult for outsiders to discern so others might worry the person isn’t dealing with their emotions when in reality they are just dealing with them differently.
Doka and Martin are in no way saying this is how men grieve and this is how women grieve. Remember that continuum we mentioned? Well, these theorists say that most of us fall somewhere along the continuum between intuitive and instrumental grief and have what they call a blended experience. People who fall on this continuum borrow coping tools from both ends of the spectrum.
Now, when it comes to gender there are a lot of societal, cultural, and personal expectations telling us how we should feel and react; men should be strong and stoic and women should be emotional and sensitive. These assumptions are really unhelpful because a lot of the time they don’t fit, yet we might feel ashamed, guilty, or weak for not feeling or acting our part.
According to Martin and Doka, dissonant grief emerges when the way someone’s grief is naturally experienced and expressed clashes with what they think is expected and acceptable. Confusion, shame, and repression can emerge when someone who is typically “strong” or unemotional becomes overwhelmed by emotion or someone who expects to be flooded with feelings finds that they aren’t.
Martin and Doka represent just one perspective on how gender-related characteristics can impact grief, but I think their theory encourages us to consider the ways in which gender can influence grief while being mindful that there is immense variability in what gender actually means on an individual level. It is important as people who are grieving or as friends, family and support workers, to be open to a range of grief responses regardless of our expectations.
Yes, they are also wanting to talk about their grief as that is just an understatement if we weren’t to have the males to talk about how they’re feeling. They’ll be dealing with grief in a different way yet there is still ways we can help them to grieve. We know that there’s going to be a lot of people that wish to help us in anyway possible. Grieving is an intensely personal journey. There may be stages but they don’t often come in order or stay in a neat line. They leap around in surprising and unpredictable ways. Friends want to help, to say the right things but often end up feeling they can’t get it right. Our responses and needs are different in the first mind-numbing days and months. Here are a few tips on how to be a good friend to somebody in the early fog and pain of grief. Yes, they are also wanting to talk about their grief as that is just an understatement if we weren’t to have the males to talk about how they’re feeling. They’ll be dealing with grief in a different way yet there is still ways we can help them to grieve. We know that there’s going to be a lot of people that wish to help us in anyway possible. Here are somethings that you may be able to do to help with them to grieve as well as also this goes for us females too.
Ask: Do ask what they need and follow their request. If they say they need to be alone for a while, that’s what they need.
Food is love: Do speak with food. Even if the grieving are not eating, they have guests who will. And at some point they will eat a bit and how lovely to have a line-up of frozen meals and other necessities during the days and weeks of numbness that follow.
Send help: Do contact other friends and religious or community organizations close to the family that might create a regular list of people who bring over food, who help write thank-you notes, who offer to do errands or grocery shop or organize bills. Life stops entirely for grievers in those early weeks and months but, alas, it does not stop for the world. Help them navigate through the bleak upcoming weeks and months in practical ways.
Listen well: Do read their emotional signals. If you come by and she just wants a hug and cannot speak, don’t push to her speak. Just sit with her. Don’t grill her with questions to fill the awkward, aching silence. Be still. Be there.
Pain and the Brain: Do respect her boundaries. If she starts remembering something about her loved one and speaks it, then shuts down immediately from overwhelming pain, NEVER push or tell her “It’s important that you talk about him and remember him.” Her brain can only process this sensory overload in its own time and pace. Don’t make her feel guilty that somehow she’s doing it wrong.
Think of them first: Do not launch into your own grief story unless you sense that told gently, sensitively, it will offer something worth hearing. You may have to wait months or years for it to be useful to your friend. Remember, this is about your friend’s needs and story, not yours.
Grief’s Maid of Honor: Do not get sucked into some weird high school competition about who’s staying at her house, who she’s calling back, who she’s letting take the kids out. Different friends offer different strengths. Let her decide which ones to take from you and don’t let your own insecurities get in the way.
Suicide Alert: Do push if you feel they’re sinking into a dangerous abyss of isolation and depression. If she doesn’t return your calls and you are close friends, go over there and knock until he/she lets you in. If you had a good relationship before this loss, and she knew and trusted you before this, lean on that. If she’s not talking to anybody and nobody has seen or heard from her, get in there.
Building a foundation: Do ask if he/she would like you to help set up a foundation or fund or scholarship in the loved one’s name because people will want to contribute in some way and for some, writing a check is the way they feel most comfortable helping. If someone dies young, setting up a scholarship or fund in their name can feel comforting to the family. Or you can ask people to donate, in lieu of flowers, to a charity chosen by the family.
No giving up: Do not give up on him/ her. Do not call three times, e-mail four times and assume, well, he/she’ll call when she’s ready. There’s a balance you must strike between respecting her boundaries and abandoning a friend in desperate need. Use your instincts to figure it out.
Regardless of the scenario, the loss of hopes and dreams can be incredibly hard to accept and cope with. These losses aren’t just felt at one time in a person’s life; true to grief-form, they pop up as milestones, reminders, birthdays, important events, regrets, and emptiness forever. I think the magnitude of this can be hard to recognize when looking at it from the outside in and I think those who experience the losses are often surprised by how hard “acceptance” is.
When we care deeply about something, it can be difficult to know when to let go. Sometimes our hopes are all we have to keep us getting out of bed in the morning. People always like to say things like, “It’s never too late to follow your dreams” and many times this is true. When there’s a chance to see your dreams through or there is still joy in the journey, by all means, keep going. But, here is the gist because this one can sound a little confusing: we grieve things we never had all the time. If I always thought I would have children, then learn I can’t get pregnant, that is a loss I will grieve. If I always imagined my future would look a certain way and it doesn’t, I grieve what I imagined it would be. You get the idea.
The reality is, though, that some dreams will eventually be impossible and when our hopes for the future are truly futile, we have choices to make. We could hold on tight and keep carrying our hopes and dreams forward, but such a heavy and hollow load limits our capacity to find other more fulfilling alternatives. We could drop everything and walk around angry and bitter, but this distracts us from finding joy in the things we do have and leaves our arms empty. Or finally, we could find ways to grieve our losses and someday, if we’re lucky, we’ll gain enough peace and acceptance to embrace our option B.
16. Someone who experienced the same type of loss will definitely be supportive and understand what you’re going through.
Eeek, this one gets people into trouble A LOT. This isn’t true, either. As everyone will grieve for their losses in different ways and just because we may have loss someone that’s important doesn’t mean it’ll be the same. Just because someone also lost a child, a spouse, a parent, a pet, whatever, it doesn’t mean your experiences will be the same. Heck, they may not even be similar. Sometimes people with similar losses end up being your best support, sometimes it is someone with a totally different kind of loss who you connect with. You just never know.
I can think of a few things that’s more scary and unknown in life than coping with the death of a loved one. If only there existed a map outlining the ‘typical’ experience of grief, we might know what is normal and the steps one should take to heal. Of course, such a guide can never exist because grief is a reflection of the individual, their relationship with the person who died, the circumstances of the death, coping skills, and many other factors.
Although many of those who’ve come into contact with grief understand it’s variability, they still might set out in search of definitive answers and quick solutions.
How long will I feel this way?
What is the best way for me to cope?
Which grief theory is correct?
What should I say to my grieving friend?
I lost my husband and my friend lost her mother; whose grief should be more intense?
Should I leave my grieving friend alone or continue to check in?
The answer to each of these questions is either “I don’t know” or “that depends.” Individual grief is unprecedented; it’s so personal that it looks different on everyone. Sure we have theories, commonalities, and general truths to guide us, but these things can only help us to guess – not know.
Most of us have little experience with grief and so when a death occurs we have limited knowledge about how to proceed. Grievers want to feel better and those who love the griever want to help them in their hour of need. Naturally, all impacted by the death want to find solutions and want the comfort of knowing these decisions, judgements, and interventions are accurate and effective. After all, grief is a high-stakes situation; tensions are high, emotions are raw, and nerves are razor thin. One wrong move and an emotional landslide may come tumbling down on everyone.
The trouble is, in the presence of stress and the absence of clarity we often rely on things like…
Emotion: My friend is in a lot of pain; quick think of something to take her pain away.
First Hand Learning: I don’t know what will help my sister, but I know what helped me.
Vicarious Learning: My friend thought a support group was very helpful to her when her husband died, maybe I should go to a support group.
Comparisons: My brother isn’t struggling as much as I am, is there something wrong with me?
Categorizations: I heard that people feel regret after a loved one dies from suicide, I wonder why I don’t feel the same.
These cognitive shortcuts make sense in many scenarios, and at times they are helpful with grief. Living in the unknown can be scary and paralyzing; of course we want to make sense of the senseless and put our trust in whatever clues seem to offer the quickest path away from ambiguity. Sometimes these clues can lead us in the right direction, but many times they do not and this is especially true when we are talking about something as complex as individual grief.
It’s easy to get caught up in the search for black and white answers; we figure they have to exist because, after all, everyone experiences grief at some point. As something so inherent to the human experience, how could grief be beyond comprehension? But to quote William Shakespeare, “Everyone can master a grief but he that has it.” Only when you are in the midst of grief do you understand, shortcuts do not exist and the only definitive answers you will find are the ones you arrive at yourself.
Across the board, we need to figure out how to better tolerate the ambiguity and uncertainty of grief. We need to have a healthy respect for its complexity and recognize that, although a few general and basic truths exist, on an individual basis much cannot be prescribed or predicted. Above all, we need to stop looking for answers and focus our attention on understanding.
We may not have all the answers, but we do what we can.
18. If you aren’t crying, then you aren’t grieving.
Some of us aren’t criers, get over. It doesn’t mean there is something wrong with us.
19. If you aren’t following “The 5 Stages of Grief” it is a problem.
MANY people don’t follow the 5 stages. If they do, it is often not in order, they may skip steps, repeat steps, you get the idea. This is just one theory about grief among many theories – you aren’t grieving wrong if your grief doesn’t fit in this box.
18. If you aren’t crying, then you aren’t grieving. Some of us aren’t criers, get over. It doesn’t mean there is something wrong with us.
19. If you aren’t following “The 5 Stages of Grief” it is a problem.
MANY people don’t follow the 5 stages. If they do, it is often not in order, they may skip steps, repeat steps, you get the idea. This is just one theory about grief among many theories – you aren’t grieving wrong if your grief doesn’t fit in this box.
Nope, it is a natural reaction to loss. We all, sadly, go through it. Just because something is painful doesn’t mean we should avoid or ignore it.
22. The goal of grief is to “move on”.
23. The goal of grief is to “get over it”.
24. The goal of grief is to “find closure”.
Ah, the myth of closure, moving on, and getting over it. Didn’t I mention from the get go that there is no endpoint? We never tie up our grief with a nice little bow and move on. That just isn’t how it works. What we do is learn to carry it with us in meaningful and healthy ways. We use it to continue a connection with the person we loved, while moving forward.
Our experience with the aftermath of a death, the ‘grief’, is a culmination of who and what we lost and our individual ability to cope with this. Our tolerance for pain differs and we all feel varying shades of hurt. Loneliness, absence, regret, need, longing, guilt, stress, lack of support – how much of this do you live with and how much can you tolerate?
Even within a family, the same loss will affect individuals differently. It would be useless to compare my grief to a mother, father, sister, brother, friend or anyone for that matter; as their worldview is different, their support system is different, and their feelings towards death and dying are not the same. I live with a lot of regrets, does he/she?
Grief is the loss of something we love and at its core, it is complex, complicated, and sneaky. Its depth, its trajectory, and its timing are often unpredictable and surprising. We are limited in our ability to truly understand another’s grief because most of us have yet to fully understand our own. What we do have in common, is the experience of a broken heart and the wisdom to feel compassion for others facing similar pain
26. Young children don’t grieve Age has a large influence on childhood grief and how children understand and react to the death of a family member, friend, pet, or close adult. It is good to know where a child is likely to fall developmentally. This will help you to better understand how they view the loss and will help you to make age appropriate choices about language and interventions.
Of course age won’t help you to predict exactly how a child will react, other factors will have an impact as well. Maturity, past experiences, education level, socio-economic status, what part of the world you live in, and access to support resources are merely a few of the many factors that influence us all.
It is advised that with children of any age or background you should do the following:
Acknowledge their presence, their importance, their opinions, thoughts, and feelings.
Be patient and open minded. Allow them to grieve in their own way.
Be available – Sit with the child, listen to them, and answer their questions.
Reassure them the circumstances that led to the death were extreme and it is unlikely other adults in their lives will die any time soon (unless this is untrue).
Let them know that a range of different emotions are normal.
Validate their feelings and do not minimize them.
Check in with other adults involved in their life – teachers, school counselors, coaches.
I have put together a list of typical grief responses by age. Again, every child is different and we can’t quantify all the unique and individual qualities of your child in this list. If your child reacts in a way that concerns you then it might be a good idea to talk things over with an expert like a pediatrician, school counselor, or child psychologist.
Typical Grief Reactions by Age:
* They have no ability to conceptualize death
* Their memory capacity for specific relationships is undeveloped. Unless the person who died was a close caregiver, they may have very little response.
* They may be aware that something is different or missing.
* They do not understand the finality of death
* They are concrete thinkers. It may feel callous to explain death in a straightforward way, but metaphors and euphemisms will be confusing. Provide simple and clear explanations.
* If they are old enough to ask, they may inquire where the person is or when they will be back.
* They probably won’t understand there are factors beyond our control and won’t understand why the person chose to leave, particularly if the person who died was an adult. Make sure to explain that death and leaving were not things their loved one chose.
* They are not too young to sense the stress and emotion felt by grownups in their lives.
* Sticking to their normal routine may provide a sense of security, normalcy, and comfort.
* Give them attention and provide them with reassurance.
Signs of Distress may include increased irritability and crying, changes in eating and sleeping patterns, and/or withdrawing. If these or any other behaviors concern you, you may want to discuss them with their pediatrician or seek outside counseling from a child psychologist.
* They still don’t understand the finality of death and still might see it as abandonment.
* They see death as reversible or not permanent. Dead people are simply sick or asleep and can get better or wake up.
* They may ask the same questions over and over; be patient and stick with the same straightforward explanation.
* They may not have the words to explain how they are feeling. You are likely to see expressions of grief through behavior and through play with toys and/or drawing.
* They may experience separation anxiety. When you must leave the child, it might be helpful to prepare them in advance that you will be leaving and provide them with reassurance about when you will return.
* They may feel the person’s absence in an intense way one moment and be back to happily playing the next.
* They will be aware of changes in patterns and routine. Provide them with a lot of reassurance, nurturing, and consistency.
Signs of Distress may include regressive behaviors in the areas of sleep, potty training, and/or eating. They may become clingy. They may appear irritable, confused or suffer from nightmares. If these or any other behaviors concern you, you may want to discuss them with their pediatrician or seek outside counseling from a child psychologist.
* They are starting to develop the ability to feel guilt. Guilt can be confusing for them and they may feel guilty for odd things.
* “Magical Thinking” is seen around 4 years old. This is when children believe their thoughts and wishes can cause things to happen. For this reason children may irrationally feel responsible for the death because of thoughts or wishes they had prior to the death. (Example: I’m responsible for the death because I told my mom I hated her and wished she would go away).
* They may be interested in the process of dying and ask ‘how’ or ‘why’ things have happened. Their questioning may be repetitive.
* They have begun to understand that death is not reversible or temporary, but still may believe that death only happens to some people and will not happen to them.
* Death is often personified as things like ghosts and monsters.
* They lack the words to express their emotions. They may have strong feelings of grief and loss but can’t express this in appropriate ways. They may express feelings through anger and frustration.
* Symbolic play using drawings and stories can be helpful.
* They may need permission and encouragement to grieve. Encourage expression of feelings through talk, play, or physical outlets.
Signs of Distress may include regression, nightmares, sleep disturbances, and/or changes in eating. They may engage in violent play. They may try to take on the role of the deceased. If these or any other behaviors concern you, you may want to discuss them with the school counselor or pediatrician or seek outside counseling from a child psychologist.
* They understand the finality of death and that everyone eventually dies, however they still may engage in denial that it will happen to them (don’t we all?)
* They are curious about the physical aspects of death – what does the body look like? what does it feel like? etc. Provide straightforward explanations.
* They know how to express their feelings and emotions, but they may choose not to. Encourage them to express the range of feelings they are having.
* They may be concerned with how others are reacting to the death. What is the right way to react? How should they react?
* Involve them. Allow them to give input and make choices regarding funerals, memorials, belongings, etc.
Signs of Distress may include having problems at school, withdrawing from friends, acting out, disturbances in sleeping and eating, an overwhelming concern with the body, and/or role confusion. If these or any other behaviors concern you, you may want to discuss them with the school counselor or pediatrician or seek outside counseling from a child psychologist.
* They are capable of having a more adult perspective of death.
* Involve them. Allow them to give input and make choices regarding funerals, memorials, belongings, etc.
* They are able to think abstractly about death and related concepts such as afterlife.
* They may try to make sense of things, philosophize, and/or search for meaning.
* Their mourning may be more traditional – extreme sadness, anger, denial. Even though they are capable of expressing grief they may chose not to.
* They may work to give the appearance they are coping well when they are not.
* They may feel forced to act as a consoler and comforter for younger children or adults.
* Be available, listen, and encourage them to talk about it. Do not attempt to minimize what they are feeling.
* Set a good example by speaking about your own feelings surrounding the death (without putting them in the role of the comforter).
* They may be more willing to talk about grief with people outside of the family. Grief camps and support groups may be helpful.
* They may act out or engage in dangerous behavior such as risk taking, drugs, alcohol, etc.
Signs of Distress may include having problems at school, depression, anger, suicidal thoughts, rule breaking, role confusion, and/or acting out. If these or any other behaviors concern you, you may want to discuss them with the school counselor or pediatrician or seek outside counseling from a psychologist.
Parents and family members are often full of hesitations. What if the child is too young to understand? What if the funeral is traumatic or distressing for the child? What if it is upsetting for the child to see adults cry? What if other people at the service will think it is inappropriate that a child is there?
When it comes to funerals and children, the first question always seems to be if a child “old enough” to attend. How young is too young to go to a funeral? I can’t answer this question for you, because in reality it is the wrong question to ask. Age has nothing to do with her a child should attend a funeral. Really, it doesn’t. There is no such thing as “too young” as long as the appropriate steps are taken and you are thoughtful about your child is and what will work for them. Attending funerals, even for children of a young age, can be helpful and positive as long as handled appropriately. I have no doubt the reason my early memories of funerals are positive is because my parents followed so many of the recommended guidance for preparing kids for funerals (whether they knew it or not). So the better question is, what are the steps you should go through when considering your child attending a funeral?
Leave it up to the child. It is important children are given the option to attend or not, and it is important their decision is respected. If told they cannot attend without giving them a choice, children may feel abandoned or resentful. If a child doesn’t want to go and is forced this can be distressing and traumatic. Encourage your child to attend, let them know they are welcome and will be supported, but don’t push them.
Tell your child exactly what to expect. Now, obviously this will need to start with a conversation about death. If you are looking for tips on talking to kids about death you can see Eleanor’s post on the influence of age on understanding, as well as tips on language to use and not to use in talking to kids about death (aka stay away from euphemisms!). Once you have had this conversation, it is important you explain to them what a funeral is all about. Why do we have a funeral? Who will be there? How long will it last? What will they do? What will other people do? Be specific – what is a casket or an urn, what is a burial, why will there be flowers, etc etc.
Help them prepare for what they will see. Describe what the funeral home will look like, the casket, and the person who died (if it will be an open casket). Many funeral homes now have photos online of their building and facilities, which you may be able to show a child in advance to help them know where they are going. Also, some funeral homes offer family time before ‘the public’ is allowed to arrive, which can be a good time to bring the child without the chaos of other guests.
Assign a buddy. Pick a family member or family friend who will take responsibility for being with buddied-up with the child. They can be there to answer questions, provide support, and take the child out for a break or home if they decide they are ready to leave. If you are going to be busy talking to people or busy it is important to be realistic that you may not be the best buddy for your child at the visitation or service.
Involve the child in the service. Ask if they may want to write or draw something to place in the casket or display at the service, help choose flowers, an urn, or casket for the service, help pick photos for a slideshow or to display at the funeral home. Depending on the age of the child, they may even wish to share some words at the service.
Let them know about emotions they may see or feel. Kids will see adults being emotional and crying. AND THAT’S OKAY. Though adults are often fearful of this, thinking they need to be strong in front of their children, the reality is that kids seeing these emotions can be a good thing. It lets kids know that it is okay to feel and express difficult emotions. If they know you are sad, it may make it easier for them to talk about their sadness. Just make sure they know this is something they will see and understand why people will be sad.
Warn them they may get mixed messages. Adults say all sorts of things to kids about death and at a funeral they may hear many messages from many different people. From using all those euphemisms (grandma is sleeping or grandma is in a ‘better place’) to hearing messages to ‘be brave’ mixed with other messages that it is ‘okay to cry’, kids may feel confused. Explain why different adults may tell them different things, and reinforce what you want them to remember (what death is, that it is ok to cry, that nothing is their fault, they will be safe and protected, etc)
Respect their decision if they don’t attend. Some children may feel strongly that they don’t wish to attend. If that is the case, don’t force them. Ask them if there is anything they would like to do on their own to say goodbye. If it is a close family member, consider creating an audio or video recording of the service so the child can watch it later if they regret not attending. You may also consider journaling about the funeral afterwards, while it is still fresh in your mind, so you can read it or talk about it with your child later.
28. Children are resilient, you don’t need to worry about them.
The good news, children certainly can be very resilient. They myth? That is doesn’t take effort, work, or support. I once heard someone (I wish I could remember who . . . leave a comment if you know the source of this!) compare resiliency in children to children’s ability to learn a language. It is much easier for children to learn languages than adults, but this does not mean they will learn a language if we don’t teach, coach and support them. I have always liked this analogy. Research shows us that childhood trauma can impact us through adulthood in countless ways, psychological and physical. We need to give children the appropriate time, attention and tools to cultivate that resiliency.
If you are seeking alternatives to a funeral that may help meet some of the needs that are found in a tradition funeral, or if you are planning a memorial and trying to think a bit outside the box, today’s post is the post for you. Today we will be sharing some alternatives to a funeral, large and small, and we are asking you to chime in by leaving a comment if you have other ideas.
1) Create a shrine in your house. Okay, the word shrine probably makes this seem creepy. We aren’t talking about a creepy shrine here, just a simple area in your house that has photos, objects, and anything else meaningful that reminds you of your loved one. The process of putting this together can be meaningful and symbolic. It is something you can do by yourself, or together with family and friends. Set aside a specific time to do this. Especially with children, this is a great opportunity to share memories and say goodbyes. They may wish to draw pictures, write a letter, or make other artistic items to add to the shrine.
2) Hold a birthday or anniversary memorial. You may have skipped a funeral, but this doesn’t mean you can never have a memorial. If you are feeling a lack of resolution, pick another meaningful day in the coming months to have a memorial. This could be anything from a memorial dinner to a formal memorial service – decide what works for you. A memorial can actually allow an opportunity for more family and friends to attend, as there can be more notice given than for a funeral.
3) Create a personal ceremony at the gravesite. People have different feelings about visiting the gravesite, some people visit daily or weekly, and others never visit a grave. There is no right or wrong – it just happens that some find the gravesite a comforting place, somewhere they are close to their loved one, and others do not. If you are someone who does visit the grave, there are many meaningful rituals that can bring comfort. In the Mexican tradition of Day of the Dead, thousands of people flock to the graves of their family members to clean and decorate the graves. Though this may not be part of your cultural tradition, it can be a meaningful and comforting ritual to adopt. Pick a day – it could be a meaningful day or any old day, and plan something meaningful at the gravesite. You may wish to invite others and turn this into a time of cleaning, decorating, sharing stories, and saying goodbye.
4) Spread the ashes. Not every family chooses to spread their loved one’s ashes, but if this is right for your family it can be a nice alternative to a traditional funeral. From going to a single meaningful location, planning a boat trip to spread the ashes at sea, or taking ashes to multiple locations to spread, this can be a meaningful time and space to say goodbyes. This can be done alone or with a group of family or friends. You may even wish to spread the ashes somewhere your loved one always wanted to go, but was never able (think Martin Sheen in The Way)
5) Create a new tradition. The process of creating a tradition can alone be meaningful. It may be a tradition of volunteering in memory of your loved one, visiting somewhere meaningful to your loved one, creating an annual family dinner in your loved one’s honor, or anything else that seems right for you. Creating this tradition can be a way to grieve together, if you choose to involve others, or a way to thoughtfully say goodbye and remember your loved one every year.
6) Skip the church and the funeral home. If you are considering your options and you are put off by the idea of a traditional mass and a stuffy funeral home, because it just doesn’t seem to fit who your loved one was, start thinking outside the box! You can hold a service anywhere. Really! Anywhere! Your house, their house, the beach, a park, a restaurant, a community center, a Moose Lodge, a bar, an art gallery, on a boat, in a box, with a fox . . .okay, you get the idea. You don’t have to have one officiant and a eulogy. You can open the floor to everyone to share their stories, memories, music, art, or anything else they wish to share. Find some inspiration in the full Beyond Goodbye video. We shared the trailer on Monday, but you can view the whole video here. It is truly amazing. Okay, and because I love it so much, here is the trailer again.
7) Plant a tree. Okay, it doesn’t have to be a tree, but create something out in nature that symbolizes your loved one – it could be a tree, a garden, a bench, or anything else that makes sense for you. This can create a meaningful space for you to remember and feel close to your loved one, and a small ceremony is totally appropriate when the tree is planted, bench is placed, etc. You may even want to get a little plaque or stone marker to place at the site.
8) Create a memorial book. One thing that often saddens people if there is no funeral is that they were not able to share stories or hear the impact their loved one had on others lives. Unlike just a scrapbook or memory box (which you also may want to make!), a memorial book is created when multiple people all create a page in the book. They can fill the page with memories, stories, things that person taught them, messages for the family, or whatever else they want to share. This can be a hand made book, or you can purchase one
Here is the thing about grief – though we think of it as something that happens after a death, it often begins long before death arrives. It can start as soon as we become aware that death is a likelihood. Once death is on the horizon, even just as a possibility, it is natural that we begin to grieve.
Though this is different than the grief that follows a death, anticipatory grief can carry many of the symptoms of regular grief – sadness, anger, isolation, forgetfulness, and depression. These complicated emotions are often coupled with the exhaustion that comes with being a caregiver or the stress of being left alone when someone goes to war or is battling addiction. We are aware of the looming death and accepting it will come, which can bring an overwhelming anxiety and dread. More than that, in advance of a death we grieve the loss of person’s abilities and independence, their loss of cognition, a loss of hope, loss of future dreams, loss of stability and security, loss of their identity and our own, and countless other losses. This grief is not just about accepting the future death, but of the many losses already occurring as an illness progresses.
When we know a death is imminent our bodies are often in a state of hyper-alertness – we panic whenever the phone rings, an ambulance must be called, or when our loved one deteriorates. This can become mentally and physically exhausting. The same is true of watching a loved one suffer, which is almost always part of a prolonged illness. Caring for them as they suffer takes an emotional toll on us. These things (and others) can contribute to a sense of relief when the death eventually comes, and a guilt that can come with that relief. These feelings are common and totally normal when someone has experienced an anticipated death. And yet we feel guilty for this relief, thinking it diminishes our love for the person. It doesn’t, of course, but this relief can be a confusing feeling. We sometimes need to consciously remind ourselves that the relief does not change the deep love we had for the person, rather it is a natural reaction to the illness.
There have been numerous studies showing that anticipatory grief can reduce the symptoms of grief after a death but, as always with grief, there are no rules. There will be times that anticipatory grief may reduce the intensity of grief following a loss, then there are many times that the grief following a death is not impacted at all. For a great review of the research on anticipatory grief (and understanding of why much of the data conflicts), see this article by Reynolds and Botha. What is important to keep in mind is that if you are grieving with less intensity or for shorter duration than other losses because of the anticipatory grief you experienced before the death, that is totally normal! On the flip side, if you do not feel your grief is diminished despite it being an anticipated death, that is totally normal too! Convenient, eh? There is no formula for how an anticipated loss will impact us because we all grieve differently.
Things to Remember When Dealing with Anticipatory Grief
Accept that anticipatory grief is normal. You are normal and feeling grief before a death is normal. You are allowed to feel this type of grief. Seriously. This is a common phenomenon that has been documented for nearly a century. You are not alone!
Acknowledge your losses. People may say annoying things like, “at least your mom is still here” that minimize what you are experiencing. Allow yourself to acknowledge that, though the person hasn’t died, you are grieving. Consider journaling, art, photography, or other creative outlets to express the emotions around things like acceptance of the impending death, loss of hope, loss of the person you once knew, loss of the future you imagined, etc. Explore mindfulness as a way of being present and aware of the many emotions your are coping with.
Connect with others. Anticipatory grief is common among caregivers, but unfortunately when all your time is consumed with caregiving you may feel totally alone and isolated. Seek out caregiver support groups, either in your area or online, so you can connect with others who understand the challenges you are facing, including anticipatory grief.
Remember that anticipatory grief doesn’t mean you are giving up. As long as you are there for support, you are not giving up on a family member or friend. There comes a time where we often accept that an illness is terminal and that recovery is no longer a possibility. Though it is a reality, there can be a feeling of guilt that comes with that acceptance. Focus on what you are doing – still supporting, caring, loving, creating meaningful time together, etc. You are shifting your energy from hope for recovery to hope for meaningful, comfortable time together.
Reflect on the remaining time. Consider how you and your loved one will want to spend that time together. Though what we want may not always be possible, do your best to spend your remaining time together in a way you and your loved one find meaningful. If your loved one is open to it, you may want to discuss practical matters, like advance directives and funeral arrangements to ensure that you are able to honor their wishes (rather than being stuck having to guess what they would have wanted).
Communicate. Just like we all grieve differently, anticipatory grief is different for everyone. Expect that everyone in your family may be experiencing and coping with anticipatory grief in different ways. Keeping the lines of communication open can help everyone better understand one another. If you are planning for the remaining time to be meaningful and comfortable, make sure to include all the important family members and friends in those discussions.
Take care of yourself. I know, vague and way easier said than done!! But it is true. Check out our posts on self-care (for normal people), yoga, and meditation for some ideas of ways to take care of yourself. Remember the old cliché, you can’t take care of others if you don’t take care of yourself.
Take advantage of your support system. Caregiving and anticipatory grief can be a long road. Do an assessment of your support systems so you know which people may be able to help you out (and who you may want to avoid!). We have a great support system superlative journaling activity to help you out with your assessment here.
Say yes to counseling! I know, there are still some of you out there who may think counseling is just for wackadoos. I am here to tell you that is just not true! Counseling is helpful for normal, everyday people who just need a place to process complicated emotions and have some you-time. So just say yes to counseling if you are feeling overwhelmed with the feelings of anticipatory grief. You can check out our post on finding a counselor here.
Relief is normal. In the case of anticipated loses there can be months, years, and even decades of caregiving that can be overwhelming and exhausting (though adjectives don’t even seem like enough!). When someone dies there can be a sense of relief that is completely normal, but that can also create feelings of guilt. Remember that feeling relief after an anticipated death does not mean you loved the person any less. It is a normal reaction after a stressful and overwhelming time in your life.
Don’t assume. Just because your loss was an anticipated loss, do not assume this will either speed up or slow down your grief after the death. We have said it before and we will say it again: we all grieve differently.
31. You grieve less when the person who died is older and “lived a long life”.
32. Your grief is easier when someone was suffering, because you are relieved they aren’t suffering anymore.
33. When someone dies by suicide it is their own fault or they were “selfish”.
34. When someone has a miscarriage, it was likely brought on by not taking care of themselves, stress, taking birth control, lifting something heavy, or some other ridiculous myth.
40. Art therapy always help, music therapy always help, etc.
41. You can get a prescription that will help your grief.
Nope, but wouldn’t that be nice if there was a magic pill to cure our grief? Now, it is true that grief can exacerbate other underlying mental health conditions, like depression and anxiety. Those are things that absolutely can be treated with medication. It is important if you are struggling to see a professional.
42. Once you get through all the “firsts” (first anniversary, birthday, holiday season) they will get easier and easier.
43. Grieving and mourning are the same thing. These two words mean different in terms of defining them and they are as follows:
Grief and depression share similar symptoms, but each is a distinct experience, and making the distinction is important for several reasons. With depression, getting a diagnosis and seeking treatment can be literally life-saving. At the same time, experiencing grief due to a significant loss is not only normal but can ultimately be very healing.
The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition(DSM-V) removed a “bereavement exclusion” from the diagnosis of major depressive disorder (MDD). In the DSM-IV, the “bereavement exclusion” stated that someone who was in the first few weeks after the death of a loved one should not be diagnosed with MDD. However, the DSM-V recognizes that while grief and MDD are distinct, they can also coexist, and grief can sometimes trigger a major depressive episode, just as other stressful experiences can.
Studies have shown that the extreme stress associated with grief can also trigger medical illnesses—such as heart disease, cancer, and the common cold—as well as psychiatric disorders like depression and anxiety.
Giving this overlap, there are times when it may be tricky to distinguish between grief and depression. A better understanding of their similarities and differences can help.
Grief can also develop into complicated grief, which, unlike uncomplicated grief, does not seem to dissipate with time and can look a lot like depression. Symptoms of complicated or chronic grief may include:
Difficulty accepting that whatever caused the grief really occurred
Excessive focus on the episode of grief or avoidance of it altogether
In extreme cases, someone with complicated grief may engage in self-destructive behaviors or even contemplate or attempt suicide. It is likely due to these symptoms that the DSM no longer includes the bereavement exclusion from the diagnosis of major depression.
Where grief and depression differ is that grief tends to decrease over time and occurs in waves that are triggered by thoughts or reminders of its cause. In other words, the person may feel relatively better while in certain situations, such as when friends and family are around to support them. But triggers, like a deceased loved one’s birthday or going to a wedding after having finalized a divorce, could cause the feelings to resurface more strongly. Depression, on the other hand, tends to be more persistent and pervasive. An exception to this would be atypical depression, in which positive events can bring about an improvement in mood. A person with atypical depression, however, tends to exhibit symptoms that are the opposite of those commonly experienced with grief, such as sleeping excessively, eating more, and gaining weight. Other clues that point to a major depressive disorder instead of grief include:
Feelings of guilt not related to what prompted the grief
Thoughts of suicide—although, in grief, there can be thoughts of “joining” the deceased
Morbid preoccupation with worthlessness (grief does not usually erode self-confidence)
Sluggishness or hesitant and confused speech
Prolonged and marked difficulty in carrying out the activities of day-to-day living
Hallucinations and delusions; however, some people experiencing grief may have the sensation of seeing or hearing things
The diathesis-stress model is a widely accepted psychological theory (remember, theories are just one way of looking at something) that attempts to explain why some people develop certain disorders such as post-traumatic stress disorder (PTSD), anxiety disorders, and major depression. This model is complex and nuanced and a full explanation is well beyond the scope of this article, but even a basic understanding helps us to conceptualize why someone might struggle after experiencing the death of a loved one in a way they’ve never struggled before.
Additionally, the diathesis-stress model helps to explain why some people develop disorders when others do not. For example, it explains why 10 people could experience a traumatic situation where they are under the same stress, feel the same level of fear, and witness the same horrors; yet only two people go on to develop PTSD, 1 person develops depression and the other 7 people are, to varying degrees, able to cope with and integrate the experience.
Basically, the model asserts that some people have a genetic predisposition to develop disorders like depression, anxiety and PTSD. Even though we all may have some level of vulnerability to certain disorders, having this genetic trait makes you more vulnerable than others. It does not guarantee that you will develop a disorder, but it puts you at risk especially when combined with other environmental influences.
By environmental influences, we mean factors such as early life experiences, social support, and exposure to other stressors. Some environmental influences can have a protective effect, these are things such as having a strong social network of support, high self-esteem, and early life experiences that foster a sense of control, security, predictability, and the ability to cope with emotional pain. Having a good amount of these experiences might safeguard someone with a genetic vulnerability from developing a psychological disorder.
On the other hand, some circumstances can have an opposite negative effect, such as having limited social support, low self-esteem, life experiences that create the sense that events are out of one’s control, unpredictable, and which foster avoidance. Having one or more of these types of experiences might come together to create a second psychological vulnerability for developing psychological disorder (i.e. it makes things worse).
Despite having genetic and psychological vulnerabilities, a person still might not develop depression, anxiety or PTSD unless something happens to trigger it. This is where the ‘stress’ in the diathesis-stress model comes in. Stressors might include a whole slew of experiences, but most relevant to our conversation is – you guessed it – the death of a loved one or other significant loss. This might explain why those who never had major depression, debilitating anxiety, or even substance use disorder before the death of a loved one might all of a sudden find themselves unable to get out of bed, obsessively worrying, panicking, or in the throws of addiction afterwards.
As I said earlier, sometimes it’s hard to see where grief ends and a true disorder begins. In fact, there is even a popular school of thought that says grief sometimes is a disorder in and of itself. What the diathesis-stress model helps us to understand is that sometimes the events surrounding the death of a loved one could lead to both grief and psychological disorders such as PTSD, depression or anxiety disorders simultaneously.
It’s important to remember, grief can result in normal responses that feel completely foreign and distressing to the person who’s experiencing them. What feels abnormal to you, may just be the result of the intense emotions and stress associated with the death of someone you love. That being said if you’re experiencing emotions, behaviors, and thoughts which are distressing and limit your ability to engage in your daily function for a prolonged amount of time, it never hurts to talk to a mental health professional (again, preferably a licensed clinician with training in grief and bereavement).
56. Grief is, ultimately, always a transformative and positive experience that will eventually make you a better person.
Okay, this one is not me being a negative Nancy. Sometimes grief really is positive and transformative and we can reflect on all the ways it has made us a better person. That is a wonderful and amazing thing when it happens. That said, not everyone finds or embraces transformation in grief.
58. People like faith leaders, teachers, doctors and counselors all have training in grief and understand what you’re going through.
Ahhh how we wish this were true. Sadly, many professions listed above require NO formal training in grief! None. Zero. Zip. Doctors? Nope, not required. Counselors? Unless they are specializing in grief, usually not required for them either. Scary, we know!
Alright, I did my best to shoehorn a lot of the common myths in this list, but we all know we missed some. Also: I did a video based on own thoughts about myths and misconceptions of grief and loss along with some pet peeves. I chosen only 5 get you all started and you can watch it here:
Leave a comment below to keep the list going with your contributions!
As we know that there are many times that when it comes to applying for jobs that it can be really difficult for not just us autistic adults after finishing our schooling. This can happen to anyone that has any struggles as am sure that neurotypicals do too. Am I right?
Over 80% of autistic adults are unemployed. And, there is only a small percentage of us working full-time or part-time, casual or other job types that you can think of. You maybe questioning to yourselves, why is this? There are several reasons why we autistic adults struggle with jobs. The lack of education, lack of awareness and acceptance on autism makes it difficult in our everyday life. Many of us autistics see the world in black and white, sometimes we misread body language and other perspectives. It’s like people are speaking a foreign language that we don’t know. The way others teach us is not how we learn, and it’s very difficult to thrive, learn and to grow in a world we don’t fully understand. Most of us struggle with adulting. Let’s be real. You want to know the truth, I know I sure as hell do. A few people in my life has come in to child shame me for it all the time. They should know to not forever shame me and guilt me over traits I have tied to a disorder that I never wanted in the first place. Instead of listening to me and trying to understand my perspective, many of them brushes it off as real lame ‘excuses.’ Everyone pulls the “excuse card”, or as some may call it a “jail free” card because they don’t want to understand or see what our world is like in our eyes.
Let me tell you something that it’s not that we cannot do the job or even want to do the job or some form specific task to do in the first place, hell no far from it. I know a non-aspie will say ‘well if anyone can’t do the job, of course, they will be fired.’ In fact, we are more than qualified or even skilled for the job. It’s just a matter of fact, our differences aren’t accepted by the neurotypicals and that we have to be doing it to a set standard or some form of expectations from the world of the NeuroTypicals. Most of us autistics when that happens will then try to blend in or mask our feelings and thoughts, just to fit in and blend in to society. The workforce that we are working for is running on neurotypical standards and we are not like the neurotypicals. We are far from it! As I said that we are wired differently and that we work on a different operating system to the neurotypicals. Yes, we are all different and unique. We all have gifts and talents to share with the world yet it’s up to us how we should go about it and how we should be treated also can come into affect. Some of the key points made will vary from person to person who is autistic or not. Not all autistics will be the same when they have their personal struggles with these but some do to an extent. How we handle our everyday struggles is truly up to us though in the long run based on the choices that we make at the end of the day- good or bad as it will bring consequences to it.
There are several reasons why job hunting is a challenge for autistics and for many others. But, before I go on here I want to make it clear that this is all about how the autistics feel through the way of trying to work in a neurotypical world of expectations, rules and their norms. There is no set reason why we struggle with job searches, landing a job and keeping it. I am just pointing out the most common reasons. If you want, you can comment on your struggles with employment that I did not talk about on this blog. The issues from some personal responses from autistics that are as follows from a survey that was made:
The Application Process!
If you are looking for a job, the first step in the process is you have to apply. You cannot just walk in and ask for a job like the movies. Hell, would it be great if we could be able to have the courage to still do this today to meet and greet with the employer?
Application screening is the first struggle for autistic adults. Most applications have a questionnaire where it gives you a scenario and you have to pick the best answer. I believe also when it comes down to the application screening process with the questionnaires that they give you that it’s not always accurate. I shared more about this in one of my videos which you can watch here titled Job Hunting with Disabilities:https://www.youtube.com/watch v=VQkxNIwJABo&list=PLD1nCoeovTZ4qAdWVBrLu9BOZrJAnwoG_&index=9
Yet, let met share a bit more to how I feel about this. You see, an autistic person or just anyone may misunderstand as to how the assessment will determine if they’re right for the job. For example, it avoids picking X too often. The applicant may not know how to answer the questions or know what the question is asking. They will not even consider you if you do not pass the questionnaire. I applied for a job a few years ago to work at a gym to clean their equipment and doing database and with their application when I applied had the questionnaire. With this questionnaire, when I applied had a series of questions to answer about who you are as a person like your traits, your personality and so on and forth. It even said I had to pass to be considered for the job. I did not know how to answer most of the questions, I did not pass the assessment, therefore, they did not want me. I felt that I was being way too open about myself and I felt that how can the database with these questionnaires determine that this is the right person for the job. If that’s the case, I can’t get hired at places that do assessments on their applications. More than likely most stores do these sort of tests. Remember, neurotypicals don’t have the issues that we have.
I have watched a video on YouTube a series called “Employable Me” where it featured someone on the autism spectrum who struggled on an assessment they need to take to be considered for the job, they did not pass because of a question they could not understand. It feels like most jobs are made for the neurotypicals and not us. One thing that was a huge issue for me is all applications ask for your work history. The person may not know what to put down if they have never had a job. I just didn’t know what to put on the work history. Yes, some parts of my CV has got some spaces in between many years of which I haven’t worked for a time and that there is a lot of reasons to why this is which I will not disclose here. Most applications require you to have references, however, the applicant may not have any friends to put down. The person may not have anyone reliable that they can put as a reference. The job will call whoever you put down so the applicant can’t just put down anyone or make someone up and add a random number. You have to tell them you’re adding them for a reference. If they’re busy, they may not be free if the job calls them.
The graphics mention how gaps in employment or if the person had several jobs that were only held for a short time can cast bad judgment on us. Gaps in employment probably refer to the person’s struggle with finding a job maybe after quitting a job that didn’t work out. The several jobs refer to how we struggle to hold down a job and is fired after X amount of time. Most likely if the interviewer/manager sees the person had 10 jobs but only had them for a month or less, this makes the interviewer think the person wasn’t fit for the jobs. That person is qualified to the tee for the job. They were fired because their differences weren’t accepted or for other reasons. For instance, my mom refuses to accept that I need a time frame and direct instructions to better understand when I need to be ready or how something needs to be done. If you just say ‘get up early,’ that tells me nothing. How early? 7am? 8am? 9am? As autistics need more information given to us so that we can be able to do the job for you and get ready for our day. As this comes into the territory for us to have a schedule in place as well as you communicating to us the right way. Some autistics will say it how it is.
3. The environment
I’ve mentioned that the setting of the job can play a big role in our ability to perform the job. People with Autism Spectrum Disorders have many different types of sensory issues. These can vary from person to person, however. Some are sensitive to light, cold, hot, unwanted physical contact, etc. If the jobs have a lot of people, it’s possible these sensory issues will be a problem. Take some supermarkets or retail stores or restaurants , it’s just too busy and fast-paced for me to work at yet I am willing to try and give a go if given the chance to work in one of these places. I know that there will be too many people, too many things happening to be able to focus on the job. It would be possible for me to focus on a job and there is a kid screaming around me as I am sure that with the skills or experience that I have that I can cope or deal with it and that I have the patience to do so. Not all of us can afford noise-canceling headphones. I feel some autism pages should have a giveaway for noise-canceling headphones or if the aspie has a YouTube channel/ blog, the page should give them the headphones for free in exchange for a review/mentioning the headphones. In my opinion, retails jobs or any job dealing with the public is not for some of us autistics not all. This is just my 2 cents. Everyone is different. Jobs that care about efficiency I feel is not for us. We do struggle on the job for not being fast enough for the employers.
4. Workplace Bullying
Due to our social differences as an autistic, we are usually the targets for bullying along with many other people with different conditions. In fact, we have issues with bullying in school by kids and adults. I got bullied for being different and I just need an alternative method. I would get called names by the neurotypicals for not understanding their language. When if you explained it in a different text, I would have had that light bulb over the head moment. Kids I had never seen before hated me all of a sudden. I wasn’t given a chance at all because these kids listened to what people told them about me.
We can be bullied to quitting the job. Employers can even harass us. Someone posted in a group that their boss made a snarky mark about their autism. They could not quit because they had no other way to pay their bills. No-one, I mean NO ONE should have to be treated badly so they can live. This is why I strongly suggest you create a savings account and put money away to have for back up. This is why I am all for self-employment for autistic adults. Self-employment for anyone really. No one should have to damage their mental health or health all together for a job that doesn’t give a rats hat about them. If you were to drop dead right now, they’d replace you in a week max.
When it comes to us autistics, you have to add more context to us when giving commands or explaining something. For instance ‘Ben, needs the tape’ will not cut it. I saw another graphic on Facebook that explains if you just leave one-liners with no context it may seem like a passive statement more than a request. For instance, my mom mentioned helping my uncle in the flea market. She did not provide context, so I just saw it as a train or thought. If I didn’t have anxiety with crowds, helping my uncle at the flea market would be something I could do. She was actually suggesting it and I thought it was just a random thought. If you do not provide context like ‘please take out the garbage in a minute’ we will not think it’s important. Everyone is different, remember that. This can be extremely problematic if the boss were to give us a task but not provide those extra details. Say the boss says ‘Joe needs help in the so and so department,’ if the boss does not say now, at 3 o’clock, etc the employee will not think Joe needs help right away and the boss gets mad that the employee did not help Joe when the boss asked. Is it really a wise idea to put someone prone to hurting themselves or think about hurting themselves when they get yelled at putting them on a job where it’s highly possible is a good idea? This is the icing on the cake as to why I cannot handle the stress and hassle of a job. If we are not fast enough they yell at us which just adds fuel to the fire.
6. Workplace Discrimination
Closed-minded employers can also make the persons stay at the job short, or stop them in their tracks. The aspie tells their employer about their autism to request the accommodations that they need to function. In most cases, the aspie is fired upon revealing their autism. It does sound like a personal attack because the worker has autism. In other cases, the person is harassed and they quit as a result. I was on Reddit and a person posted that they were fired for being autistic. I feel it’s more of their autism habits being read the wrong way, being found annoying by other workers and the boss fires the employee due to too many complaints/reports. When someone says they were fired for being X, they are probably saying the traits tied to their disorder was seen the wrong way. Not only autistic people have this problem. People with certain disorders I saw an article where a Chrone’s patient who worked for Amazon got fired because of his illness. This was due to his frequent restroom trips. This is just to show when people say they lost their job due to their disorder, they were punished for traits caused by the disorder that they can not control.
7. Not working fast enough
As we know that no matter what conditions we have that sometimes we work better with no pressure or time constraints yet sometimes some of us do have that struggle to keep up with the demands at work. I believe that we should be able to still work in the environment that we are in as I believe that in some jobs we should be able to take our time and feel that we autistics especially if we take our time and are absorbed in our work we can get the work done more efficiently. The employee not being fast enough for the employer can also make keeping the job hard for many people. Which is why we need jobs where people with Autism Spectrum Disorders can go at their own pace without being bashed for ‘moving too slow.’ Most jobs care more about efficiency than quality. Which is a messed up system. Customers can also complain about you not moving fast enough. That rules out fast-food for us (or me at least) since you need to be quick. Hence what it’s called FAST food. Some of us can handle fast-food, some can’t. I feel jobs that care about efficiency are not for some of us. I feel jobs that care about quality are for us. me personally, I rather someone take 2 hours to clean my room and it’s neat than for them to rush and do it in 20 minutes and it’s just as messy as when the person started. Not everyone thinks like that.
8. Can’t get passed the interview stage
For many of us not just autistics will find this as a struggle to try and get to an interview after applying for their dream job. Why do we struggle with interviews? We all get nervous and anxious when we do go through this stage of employment. Some of us autistics will get read wrong due to us being anxious, not knowing what to say and so on. Well, there are several reasons why. The person can take the questions too literally. The question ‘tell me about yourself’ could be the reason why we struggle with the interview. This question most likely is, to sum up, your previous employment or how you feel you fit the job. The person will think the tell me about yourself question is, to sum up, some facts about them like where they’re from. When a friend wants you to tell them about yourself, they want to know some interesting things about you. We take things literally, therefore, we may answer the questions too literally.. It takes us a bit to process and understand your question. If the interviewer sees the person taking too long to answer the questions, this can count against them. Sometimes anxiety gets to the person and it causes them to mess up the interview. Sometimes an unexpected question can pop up and the person does not know how to answer it. The interviewer will not know the interviewee has autism, therefore the interviewee’s behavior will likely be read as they are not interested in the job. I know this is rich coming from someone who has never had a job due to autism, you have to think about how your behavior can be read. We lack the skills to know how someone may read our body language, voice tone, etc. Of course, if the person is not aware of how their body language, voice tone, etc is being read, this can complicate things.
Some of the other responses to why autistics find it a struggle for interviews are based on some of the autistics that responded by a survey being asked:
Why is it that we autistics can’t keep a job? It’s NOT because we can’t do the job, it’s because our differences are not accepted. It’s because of the employers’ or co-workers’ attitude towards us. The boss’s method of learning the job is too difficult for you to understand. You need to see someone do the action to better understand the job, depending on the job. However, there may not always be an option to have someone demonstrate the job for you to understand. You may need more clarity on the tasks you are given. We need a time-frame when giving a request, otherwise, we will think it’s not important. The boss does not do this when he/she gives you your assignment(s). The person does not do the job the way the boss wanted to and the boss gets mad. You’re reprimanded for taking too long to understand the job, it’s not your fault you need a different method or take longer on some things than everyone else. Or you’re yelled at for not doing the job the way the boss wanted you to do it due to missing details as to how the job needed to be done.
Again, some responses to some parts of the survey attached here to show the responses from the autistics.
End result, here is that the reason to why they can’t hold a job down or keep a job is due to having an autistic burnout or meltdown.
End note: I have mentioned a few solutions to these with giving you all some tips that may come handy if you are working with an autistic. We need to work together and be patient and allow us to show you what we can do with our talents and more. I am asking you to help us. Some of us struggle to find or hold down jobs. Think about how happy we will be that you decided to make it work for us when no one else did. For example: think about it for a second, solo/small game developers don’t have the tools that larger companies have, especially when it comes to promotion. Simply hiring someone to write articles promoting your game can really help you. Think about it, solo/small game developers don’t have the tools that larger companies have, especially when it comes to promotion. Simply hiring someone to write articles promoting your game can really help you. So, what I am asking you all is to help us. Some of us struggle to find or hold down jobs. Think about how happy we will be that you decided to make it work for us when no one else did.
As I walk through these lonely long footsteps now after hearing the tragic yet horrific news about some of the people in my life has now gone out of my life through death. That death came knocking at their door and that death has taken them away for whatever reason it may be. I am walking in disbelief, shock and anger wondering to myself, “Why?” “What did I do to make it wrong?” And so many more of these unanswered questions. I had all sorts of crazy thoughts that were running through my mind at the time. These unanswered questions and thoughts needs to be silenced once more. Time stood still when I heard this as it felt like almost a sharp dagger stabbed my broken heart as I ache to have the ones that I loved and cherished in my life to still be here. Yes, I have so many mixed feelings, emotions and thoughts right now. Yet, it saddens me that the place where some of us have been and seen is now just a memory and a place of comfort and peace. I come here often as this is a quiet place for me to sit down to think and to write as well as to reminisce all the memories that has been shared through it all. But, now it breaks my heart that the places that was shared, the laughter shared, the tears shared and more is now gone. I only have now some photos as well as some letters from the ones that wrote to me as well as knowing now that they’re only here with me in spirit.
Dear Grief as you know that despite the loved ones and friends that I had are now gone, writing in my journal gives me so much peace and comfort and it helps me alot just by pouring all my hurt, thoughts onto a page or in this case on the screen.
Dear Grief, I want to ask you how did it happen, why did it happen, why now? Why did some of my friends and family that I loved and adored had to suffer the situations that they went through and not even bother telling me about it? Why did they had to think that they were doing me a favor to end their life or even just death in itself take them away. I question myself, was I good enough to be standing by them through their hard times even if I didn’t see the signs of what was really going on in their life? Would I be able to be their superhero, or even just some listening ear or board when they needed someone the most? I feel so hurt and angry. I cry every time I hear the names of my friends and loved ones that has passed. I cry every time when I hear their name to the ones that has left some precious and special people in their lives of their parents, children and grandchildren. I cry when I now know that they’re now gone and won’t forever see the beauty of this world of what the world is like and what their future would have been like. Some of them to have their own family, grow old and learn from their mistakes and just to grow in themselves in spirit. All the while that the nevers that is said are breaking me to pieces and breaking my heart. Another day starts and that life goes on from the ones that are gone and that I have realised with them gone that I have now been given more peace, hope and inner courage and strength to continue my life. You’ve taught me that there’s one life and chance in this lifetime to make things right and if I fall down or feel that I have failed something, I just gotta keep on going and not let anything or anyone stand in my way. I feel some days that they are at a standstill because the times that has been shared is now slowing down. But, grief, I know that you’re here to stay with me for a reason. And, also grief you’ve also become a part of me into what I am going through to what I am now becoming. It makes me happy and at peace when I think about the ones that I have loved and lost along the way. I have been with them through the thick and thin and that we may have fought some times and that I have been with them with some part of the journey of where they were. Despite it all, in spirit they are with me and that they keep me going. Many of the ones that I have loved and lost along the way has inspired me to be the best me I can be and to be an inspiration to others big or small accomplishments made as well as making some of my dreams and goals a reality. With sharing memories to the world of my loved ones and friends, it brings me so much happiness. When grief is being shared, it feels less lonely and not feel that I am in the dark as there’s others out there that will need me for whatever reason it may be. When any of my loved ones or friends that I’ve lost of their names being shared, it just brings spark of joy, happiness and laughter. Doing some of the things for my loved one and friends is so precious to me to share with others do bring me some HOPE. My loved ones and friends will always be who and what they are to me. My love for my loved ones and friends will continue to shine and radiate through to others as they come on my journey and path of life to show me what life means to them. Grief you’ve completely changed my life yet the bond shared with my loved ones and friends hasn’t changed along with whatever memories that we had and shared will still be there. I have said this many of times yet now I am writing it to pen to paper as well as sharing it to the world. I am now accepting you grief! Why you may ask? As you have now been accepted as part of my life, love for everyone I’ve lost.
Hi guys, as you can see reading straight off the bat about what this topic is all about and I want to be real, honest and transparent with you. As you know that it’s hard as it is going to be for me as well as most likely any other person that has their struggles to do this to be as brave as they can be and not to fear about getting judged or misunderstood. Some of the videos that are being shared can be restricted especially in this area of sharing our life stories and experiences with Autism and many other hosts of conditions we may have which I clearly shared one of my videos which I will link here: and with that if we are all brave enough to make a stand to talk about it then I feel our job should be done. Let’s hope that we can agree to disagree or agree to disagree or whatever to what is to come of my points I would like to share today on my channel.
If any of you really know me as a person I love to try and help people and do my darn hardest to be happy regardless to what my everyday battles/struggles are
even if I do wear them either with pride or not.
So, let’s get on with the video now.
Point number 1- Representing the whole entity of the spectrum of Autism, can it be done?
Just hoping that this makes sense to many of you or hoping you understand to what I am trying to say but I will explain this to you.
I have now come to realise that despite it all that we are all different with different needs with Autism. We can’t all represent autism as a whole as it’s a whole
new ball game as well as being a spectrum of different Autism Spectrum Conditions along with us we all have a different story and life experiences etc.
I have also realise this now too.I believe that as a person with Autism or as I keep calling myself as an Aspie. This platform
is for me to at least share my stories and experiences as well as documenting as much as I can what my life is like as an autistic for others to gain a better
understanding and knowledge about who and what I am underneath autism and a few mental health conditions I have. I believe strongly that I should be able to be
express myself without the fear of being judged, criticised by others or others telling me what to do or say or think. I am my own individual self.
I am not to be born to be the same as others. I am born to be different and to stand out. I am learning to come out of my shell than I’ve ever have and am trying to
learn to love myself again and to not be hard on myself when I do have these really bad days that are thrown at me. I have learnt alot along the way while facing these
struggles and that all I can say is that I am blessed and humble to be alive and have a few small amount of people who are there with me on my journey.
We can’t live in a world of perfectionism. You can try but I hate to say it that you will fail! Being perfect to everyone will not be easy and that we should
just be able to do what we love. I feel sometimes that whenever I do something that I tell myself, “Aspie, you got this regardless of what you been through,
you can get through your day shining brighter as a star!” I’ve come to realise that despite what others has said to me I want to speak on my terms and no one else, I
did share about this topic about this which I will link here if you wish to view what I am trying to say here. “https://www.youtube.com/watch?v=wlBD23cHcO0&t=616s”
I have learnt now that you can’t always please everyone and if anyone does attack you for doing the things that you love, you must be doing something right, right?
As you know or should know by now that my channel is about all things Autism and Mental health along with sharing you my life stories and experiences with it. Trying to understand the whole spectrum is impossible and difficult as we are all different and have different needs etc in our lives no matter where we are in life. There is a lot of learning and experimenting about the spectrum and all and just listening and watching some people share their experiences with Autism- to know that I am not alone makes it so much easier. 2 I have noticed that when I have been in groups that it’s never easy for me to try and speak the way that they want me to as we all know that we have our different styles of communication as well as just everyday struggles. For sure, I believe that I am getting better it is just a matter of hoping others can accept to how I am wired differently. I have also mentioned about this in my video of the future for the autistic community again I will link it here and in the description. When we are on the spectrum, there could possibly be some similarities of the traits and characteristics that we share yet again we need to be aware that there is never a same autistic when you meet one for the very first time. We know that there wasn’t enough advocacy for the whole spectrum. No one or anything like some businesses can represent the whole spectrum of autism. We can’t please everyone as I learnt that when I was nearing my twenties. I did spoke on pleasing everyone or we can’t forever be perfect for anyone. I did a poem about perfectionism which you can watch here: https://youtu.be/ixPDwl9PeMI. I have noticed that we have to be put in a box with some expectations that others would like to see from us. I am now accepting that I can’t please everyone and what I say or do or even when I am in front of the camera with you all that I do my utmost best to make the best content for you all to enjoy no matter what it is of a subject matter or some follow me vlogs and more. I want to be true in myself based on my life experiences to what I’ve been through and hope to share with you all and that something that I share may shed some light and hope for you all that you’re not alone and that I can relate to some situations we face in life but not all yet also being your listening ear or sound board for any advice. I will do my utmost best also to represent my side of Autism of what goes on in my life as well as just other hosts of conditions that I have yet, I know that I’ve not shown any behind the scenes footage of what goes on in my life yet I want to do what I can do for you all. I want to try and as said give back to you all as much as I can. I am really humbled and blessed to have some of you that has stood by me through the very beginning and I can’t thank you all enough. I appreciate this. I want to try and open doors of opportunities and communication on my medias where you can be safe and not be judged even if you would like to private message me that is fine with me. Most of us autistics are now trying to open doors of acceptance more than awareness as did share my thoughts about what we need which you can see here: https://www.youtube.com/watch?v=OPQcBVbW1pE (World Autism Awareness & Acceptance Month/What does Autistics want? ACCEPTANCE [April 2019])
2. Being able to help someone through my videos
I am grateful that there are times like these that people tell me that some things that I share of the everyday topics help them. I love hearing what you think or even some feedback to make my content better as well for you all. I am hoping that with the other items that I enjoy. I also admire ones that shows what we are as a person as a whole with what we share. I may not know everything about Autism and Mental Health yet we need to grow and share some interests. I love to engage with you all about mental health and autism that’s personal. I hope that with some variety that adds a bit of fun about me? Let me know in comments section.
3. Autism and mental health Advocacy
I do try to go to some events that is related to what I love to do and hoping that I can be really strong minded for what I love to do.
I believe that we can be an advocate in our rights. We all different for sure.
I hope that with whatever I share will learn from me and I learn from you.
I will hope to hear from you all of what you want to share based on this video that I am sharing.
Hey you! Were you listening to me? Why aren’t you listening or answering to me?
So many of the general public believe that autistic people don’t feel empathy towards others, and this I will say is quite the opposite really. I can’t stress it enough that every Autistic you will meet will be different to how they act, speak and think. So, this post is designed to help set the record straight.
First of all, what is empathy? Quite simply, empathy is the ability to understand what another person is thinking or feeling; but the truth is that empathy is anything but simple.
Autistic people can definitely struggle with certain aspects of empathy, but that doesn’t mean they don’t feel it at all. Sadly, despite years of campaigning by autism advocates, there’s still a widespread belief that people on the spectrum have no ability to make emotional connections or form meaningful relationships, and this really couldn’t be further from the truth.
Autistic people are often the most kind-hearted, compassionate individuals you’ll ever meet. Deeply committed to their family and friends, with an intense spiritual connection to the world around them, they really are nothing like the stereotypical, emotionless loners they’re sometimes portrayed as in the mainstream media.
However, like all stereotypes, this one has its roots in reality, and has come about as a result of the complex nature of autism, and the equally complex nature of empathy. This post describes the three main aspects of empathy – affective, cognitive and compassionate – and how autistic people can both struggle with and excel at processing and expressing them.
This is an unconscious, automatic response allowing you to feel what other people (and other living beings) are feeling, and is absolutely not something autistic people lack.
For example, it’s very common to find people on the spectrum who feel intensely connected to all species of animals, birds, insects etc. and the bonds they
form – with creatures who live free from the endless restrictions of human social rules – can be quite extraordinary.
In the case of affective empathy, rather than having too little, autistic people can often have way too much – a condition known as ‘hyper-empathy.’
Hyper-empathic people find that even the thought of anyone or anything suffering causes them intense emotional, psychological and often physical pain. They can be highly sensitive to any changes in atmospheres, picking up on the slightest tension between people, and becoming more and more upset as they anticipate things escalating.
Since processing these powerful feelings can be really hard for them, they’ll often withdraw or go into meltdown over something that’s perfectly valid to them, yet a complete mystery to those around them.
Another way this shows itself is in the extreme personification of objects: forming deep emotional bonds with everyday items like pencils or rubber bands.
There are many examples of personification in the language we use every day (time waits for no-one/the camera loves her etc.) and also in our culture, with films such as Beauty and the Beast being very much enhanced by its singing, dancing, emoting kitchenware, but what I’m describing here is something much more overwhelming. Autistic people can become extremely upset if they feel, for example, that a specific crayon or hairbrush isn’t being used as often as the others, because it might be feeling left out. I can imagine how that sounds to anyone who’s unfamiliar with autism, but believe me, to many, many autistic people, this really does make perfect sense.
This is the largely conscious ability to work out what other people are thinking or feeling, and because human beings are so endlessly complex, If you’re not
naturally wired to understand the process, it can be really, really difficult to learn. Cognitive empathy is an intricate thought process allowing you to grasp
what people really mean when they say something vague, or which emotions they’re feeling when they behave in a way you find confusing. It’s something most
neurotypical people pick up very quickly, and most autistic people have to work really hard at.
Anyone who lives with autism (whether they’re autistic themselves or are in close contact with an autistic person) will recognize how difficult it can be for people on the spectrum to guess other people’s behaviours and intentions without very precise instructions. In other words, it really helps to say exactly what you mean when you talk to autistic people, because they just don’t get the concept of ‘implied.’
A perfect example of this happened in here recently, someone mentioned about their youngest son – “When my youngest son’s girlfriend told him ‘I’ve just left work; meet me at the end of the road.’ Now, it was clearly implied that since she’d just stepped out of the office, she wanted to meet him at the end of the road she works on, but since Aidan doesn’t do ‘implied,’ there she stood, more than twenty minutes later, still waiting for him to arrive.
Aidan, meanwhile, was waiting at the end of the road where she lives, which seemed to him to be the most logical road to meet on, since they’d met there several times before. Not specifying a particular road when talking to an autistic person is what we call in here a ‘rookie mistake!’
There are a couple of terms relating to this that you’ve probably come across if you’re part of the autism community: The ability to consciously recognize what other people are thinking and feeling is known as ‘the Theory of Mind’ (usually abbreviated to ToM); while being unable to do this is known as ‘Mind-blindness’. Mind-blindness is one of the most common traits a health professional will look for during an autism diagnosis, and its effects very much work both ways.
Autistic people will often assume everyone has the same views and understanding of the world as they do, as well as the same passions and interests.
I’m sure many of you are familiar with the seemingly endless discussions about special interests which are a direct result of this trait.
They’ll also believe that if they’re aware of something, other people must be too, and this can lead to all kinds of problems. Another person mentioned about their son, ” When my son Dominic was young he almost died of acute double pneumonia because he didn’t tell us he was in agonizing pain whenever he coughed”. Devastated, the mum asked him why he hadn’t mentioned it to her , and he said simply ‘I thought you knew.’
This is both the understanding of another being’s situation, and the motivation to help them if they’re in some sort of trouble. Once again, autistic people have no shortage of this kind of empathy, even though they can sometimes struggle when it comes to offering the right kind of help.
Many people on the spectrum are hugely motivated when standing up against what they consider to be injustice, and you’ll find some of the most passionate voices
in the struggle for equality, animal rights and a cleaner environment are the autistic ones.
Autistic people see far less boundaries than neurotypical people do, which is a really positive trait when it’s applied to finding new solutions to seemingly unsolvable problems. Conversely there are many challenges for autistic people to master when it comes to giving and receiving emotional support, as they tend to struggle quite a lot with social boundaries.
Autistic people often don’t like to hug, or they hug too tightly, which is a natural way for neurotypical people to show empathy towards each other, and this definitely adds to the misconception that they’re unfeeling and lack the capacity to love. Putting your arm around someone’s shoulder or your hand on their arm when they’re sad are both automatic gestures for neurotypical people to make, but can be incredibly confusing for autistic people who have difficulty picking up social cues about how much physical contact is appropriate in each particular situation.
When you’re autistic, joyous occasions such as birthday parties and weddings can be just as difficult to navigate as the more emotionally draining events like funerals. Understanding why it’s important to ‘say the right thing at the right time’ can be very confusing, leading to all sorts of mix-ups, but autistic people really do care, and are genuinely trying their best to be supportive, even when they get things wrong.
So those are the basics of empathy, and some of the struggles autistic people can have with them. I’ll leave you with a real-life example of one man’s version of compassionate empathy which I’m sure many wives of autistic husbands will recognise.
For several years I’d been dogged by some very serious injuries and illness, and had put on quite a bit of weight as a result. We were going out for the day so I squeezed myself into a pair of jeans I hadn’t worn for a really long time. They just about fitted but to be honest I wasn’t too sure about wearing them in public. I told my husband I felt a bit uncomfortable about how my legs looked, and rather than the standard ‘You always look beautiful to me, darling’ reply I’d expected, he spent way too long staring at my thighs and came out with the ever-so-helpful statement ‘Yes, they are pretty big. I know! Just wear a long coat.’ Yes, thank you for that, darling; problem solved. Sigh.
Don’t you just love it that you have some people that thinks that they know all about you or try to speak on your behalf regardless of what the conversation is about or the topic at hand is? Man, I tell you, this can annoy anyone and this is one of the many pet peeves I have along with my concerns that I shared about for the future of the Autistic Community and if you would like to watch more about this topic especially the link is: https://youtu.be/dbWjL_YoIBo.
*NOTE: Yet, one of the parts is what I am sharing now is safety in groups or not being able to be listened to from others. Yet, most of this is shared in about 3 minutes and something on my video that I’m sharing as above. But, back to what I’m sharing is that others speaking for us and somethings that may be shared or said to us or many others with mental illnesses that aren’t doing any good for us but may harm or trigger us. People speaking for myself or others on the Autistic community is viewed in 6 minutes and thirty-six seconds in my video. *
As an autistic person or as I would like to be called when I’ve got Aspergers Syndrome is an Aspie. I ask you to please try to understand autism from autistic people who live this on the daily and that the struggles that we face and that’s in saying that some people not all aren’t wanting to understand or are just plain out arrogant or ignorant. Don’t get me wrong as I’m aware that there’s others that has their own struggles too that are outside of the spectrum of Autism and Mental Health etc. The people who are most knowledgeable about autism are those who live as autistic everyday. Why then do non-autistic people have authority about autism and how to help autistic people? The Autistic Self Advocacy Network is an important group because we can advocate for ourselves. Although we need many people to learn from, ASAN understands autism better than parent and profession-led groups. (NO OFFENCE TO ANYONE READING THIS). People should listen to us about our experiences, needs, desires, and goals.
*Note this is just my opinions here along with my thoughts to share with you all. *
Acceptance is making each person feel valued and seeing his or her importance in society. I am helping to pave a way for more autistic people like me to be given a way to communicate meaningfully as well as being able to have a voice that they can use to share their stories, experiences and more. I believe that I have made a difference by blogging, answering any questions, and making my voice heard via through all my social medias I’ve got. People need to know nonverbal people also have feelings and intelligence as well. My voice only comes out through typing or if I chose to through my social media of YouTube and other links that you should be able to find me on. I am learning to type more independently. This might take me a long time. Please respect my voice even if it has to be supported from a trusted person. My voice is all mine.
I have a voice now. My goal is to advocate and educate others for those who communicate like me to have more opportunities in regular education and mainstream life along with just anyone that is interested. I have benefited so much from a good education and lots of activities in the community. I also advocate for people who still don’t have a voice. I blog to tell people how I feel and how communication has changed my life. I do this in hopes to convince parents, teachers, and therapists to believe their children and students are smarter than they look. I blog to show that good alternatives to speaking are possible. Meaningful communication opens a whole bigger world of connection to others and opportunities to learn and to grow in ourselves and with others around us. People become much happier. Taking away my voice would be oppression. To deny any validity of supported communication is like imprisoning an innocent person.
Autism is a neurological difference and disability. I can’t change the way I am wired based on my speech and what I am as a whole as a person. I’m built for another planet that isn’t yours and may not be able to understand this but I must live here. Please help autistic people by loving us as we are and not try to cure us. Peace comes when I am accepted and included.
I’m always grumbling or making a form of a rant about how so many people still don’t really understand it, so World Autism Awareness Week – April 2-9 – can only be a good thing, right? In my honest opinion, well, sort of and not quite. Any raising of public awareness is a good thing when it comes to Autism Spectrum Condition, so long as there are no ulterior motives behind us or that is offered to us and it’s just about helping people learn about the condition and how to support those with it.
But then there’s Autism Speaks. Yes, I know that I will get a lot of people attacking me on this yet hear me out as we all have heard of this nasty organisation for a reason. And that is? Before sharing more of this I did share my views about Autism Speaks to why Autistics don’t wish to hear about it and you can watch the video here called: Aspie Let’s Talk- Why WE SHOULDN’T support autism speaks-https://www.youtube.com/watch?v=MOdgoXz3pkg
Now, back to my opinion on this topic at hand of their ‘Light It Up Blue’ campaign as this has been so successful in the United States that it’s now pretty much ubiquitous – even major landmarks such as Niagara Falls and the White House have been known to ‘Light up blue’. The campaign has gathered momentum in the UK recently and I regularly see people posting supportive ‘I’m lighting it up blue for Autism’ memes across social media. The United Nations designated April 2 World Autism Awareness Day dated back in 2007. And the world certainly needs more awareness of autism-related issues – if nothing else, only 16% of people diagnosed as autistic in the UK are in full time employment, 10% of those people who are diagnosed as autistic in New Zealand are in full time employment, and that seriously needs to change. A much higher percentage are more than capable of working, but they simply don’t get the opportunities afforded to those we describe as ‘neurotypical’ (someone with a non-autistic brain). In the UK, World Autism Awareness Week is organised by the National Autistic Society, which has been working on behalf of autistic people and their needs since 1962. Light It Up Blue was founded in 2010 and marketed so aggressively – and successfully – that many people now assume it to be the obvious campaign to support. Most people do so in the genuine belief that they are helping autistic people. The White House has lit up blue. However, Autism Speaks are an ‘Autism advocacy organisation’ who offer a wide range of therapies, interventions and treatments for autistic children. Which is where the issues start to creep in. Up until 2016, Autism Speaks openly worked towards finding a ‘Cure’ for autism, despite the autistic community regularly explaining why trying to ‘cure’ an inherent condition was offensive. According to a video they produced – which has since been withdrawn by the organisation themselves but copies of which can still be found online – having an autistic child meant the end of your life as you know it. A sample from a transcript of the video: I am autism.
This is what is stated in the video as you watch this. Be warned that this may cause some triggers to some Autistics that doesn’t believe in all of what is shared here.
I’m visible in your children, but if I can help it, I am invisible to you until it’s too late. I know where you live. And this: I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?
Autism doesn’t rob either myself anyone that is diagnosed of their dreams – if anything, it makes our dreams more vivid, brilliant and ridiculously wonderful. Autism cannot be ‘Cured’ – it is a difference in the wiring of the brain and is permanently built into our genetic makeup.
What Autism Speaks offers is training to coax your child into ‘behaving acceptably’, in much the same way one would train a dog. Applied Behaviour Analysis is the most common therapy offered by organisations such as Autism Speaks. Again, many Autistics that I’ve spoken to doesn’t believe in this therapy/treatment that is supposed to be had for their own reasons. (I will share more later in my piece)
Their ‘100 Day Treatment Kit’ states: Treatment for autism is usually a very intensive, comprehensive undertaking that involves the child’s entire family and a team of professionals […] The recommended number of hours of structured intervention ranges from 25 to 40 hours per week during the preschool period […] ABA methods use the following three step process to teach: An antecedent, which is a verbal or physical stimulus such as a command or request. This may come from the environment or from another person or be internal to the subject; A resulting behavior, which is the subject’s (or in this case, the child’s) response or lack of response to the antecedent; A consequence, which depends on the behavior, can include positive reinforcement of the desired behavior or no reaction for incorrect responses. ABA therapy is less popular in the UK, but does have its supporters. However, as an autistic person I find it incredibly offensive that we should be required to undergo training in order to ‘fit in’ to the world – this article brilliantly explains why in more detail than I have space for here. We are not broken and we do not need to learn how to fit into your world. It is our world as well and we have every right to inhabit it just as we are. You can find endless comments from those in the autistic community, explaining how and why they disagree with the methods employed by Autism Speaks and why they’d prefer people to stop ‘lighting it up blue’:
The fabulous @NeuroRebel who I’ve been following and watching some of her videos has put out this very informative vlog, which explains just how autism can become very big business. After much campaigning and complaints on social media, Autism Speaks have actually brought two autistic people onto their board. Professor Stephen Shore is, among other things, the author of Understanding Autism for Dummies and Valerie Paradiz is an author who was herself diagnosed as autistic at the age of forty. However, this is still only two autistic people out of twenty board members, not including the founders and a ‘Director Emeritus’. That’s twenty four people, only two of whom are truly qualified to speak on behalf of autistic people. Despite Autism Speaks claiming to have withdrawn talk of ‘curing’ autism from their website, I downloaded some of their information resources while researching this feature and found the following quotes within their ‘Treating Autism’ section: Most parents would welcome a cure for their child or a therapy that would alleviate all of the symptoms and challenges that make life difficult. Is There a Cure? Is recovery possible? You may have heard about children who have recovered from autism. Although, this is so relatively rare, it is estimated that approximately 10% of children lose their diagnosis of autism. Life can be difficult whether or not a person has Autism Spectrum Disorder. No child is perfect and a child with autism does not need a ‘Cure’. Autism Speaks are savvy enough to acknowledge that there isn’t a ‘one size fits all’ treatment for autism – so they offer several. Before, I write further as you read this that the term of Autism Spectrum Disorder has been removed by some people as some people may call it Autism Spectrum, or just Autism Spectrum Condition as to not to offend anyone that are diagnosed with Autism.
Even if you are one of the ‘Lucky’ parents whose child ‘loses’ their Autism Spectrum Condition diagnosis, that will only be because they have been forced into adapting their behaviour in order to appear neurotypical. But however well you train them to hide it, they will still be autistic. The suggestion that autism is something that can be ‘recovered’ from is offensive. Most people never lose their Autism Spectrum Condition diagnosis for the simple reason that autism is part of us – it cannot just disappear. Autism is as much a part of me as my grey eyes – they can be temporarily disguised, but they’ll always be green underneath. We do not need a cure – because autism is not a disease. I can’t be the first autistic person to wonder whether this is heading into eugenics territory, in much the same way as those considered at risk of having children with Down’s syndrome have had to consider.
Oh, and one last note to end and make you think more about what I am sharing right now– the ‘Blue’ element of the campaign comes from the outdated belief that autism is a ‘male brain’ condition, a theory that has now been widely disproves.
More and more girls and women are now being diagnosed as autistic, largely due to research into how autism ‘presents’ differently in females. For all these reasons, I will never ‘Light It Up Blue’. If you want to show your support for autism awareness, that’s great! You can ‘Light It Up Gold’ with Autism Acceptance Month.
April 2 was World Autism Awareness Day. There will be plenty of people that will be relatively new to being “autism parents,” or “autism advocates” and so on. I am all for awareness, acceptance and generally increasing education for those who don’t know enough, or are starting out to wanting to know more about Autism in general and so much more. As you are aware I’ve been a voice/advocate on my channel for four years and only been blogging for almost two years.
World Autism Awareness Day was brought into being on December 2007 by a United Nations General Assembly resolution, under the more general auspices of improving human rights around the world. The resolution was met with acceptance from all member states, and first celebrated on April 2, 2008. For 2018, the U.N.’s program for the day includes a special focus on women and girls with autism; recent analyses estimate that 3.25 boys are diagnosed for everyone one girl (down from 4:1), but when looking for autism in girls (who often presently drastically differently than boys), that ratio can drop even more.
Autism Speaks, perhaps the most well-known of autism-related organizations, uses the tag line of “Light it Up Blue,” and encourages supporters (of its organization and of those with autism) to wear blue on April 2 and to use outdoor lighting with blue light bulbs. It’s a nice symbol of solidarity, really, it is, but here’s the thing: it’s blue because they operate on the outdated assumption that it’s mostly boys who are autistic. On the one hand, let’s overlook the old science, and the gender stereotype of “blue is for boys,” because the large majority of people and organizations lighting it up blue are simply trying to be supportive of the autism community. On the other hand, doesn’t education go hand in hand with advocacy? Don’t we want people to actually be supportive of those with autism, and not just pay some lip service to an Autism Speaks marketing campaign? And full disclosure: the last few years, many people may have been wearing blue, I have used #lightitupblue on my social media, and I, too, thought I was doing a good thing — in support of friends and family who live with autism.
I have shared some views why Autistics don’t want to share much of what Autism Speaks shares which you can watch this video here:
When you know better, you’re supposed to do better, though, so this year, I didn’t wear blue. I am being educational, instead by sharing some autistic related videos for you all to watch to gain a better understanding and educating you all about this.
I have been reading about Autism Speaks for a week or so now. Reading articles, blog posts, rants, comments on articles, etc. From my purely unscientific assessment, it seems like those who support the organization do so because it’s “the autism organization,” or in other words, they either don’t know any better, or they don’t care. The folks who fall into the anti-Autism Speaks camp almost universally support the Autistic Self-Advocacy Network instead, and they recommend use of the hashtag #redinstead.
Other catch phrases include “Nothing About Us Without Us,” which perhaps is directly aimed at Autism Speaks, who controversially had no autistic people on their Board for many years. When they finally put one on the board, he resigned over the organization’s practices. Currently, Autism Speaks has two autistic members of their Board, which is a tiny step in the right direction, but for many, it’s not enough.
Autism Speaks portrays autistic children as a burden. We honestly don’t know what my son’s future and development are going to be like — only he will be able to clue us into that. For now, we should focus on advocacy work and educating others as well as also if we have kids to teach them how to live their lives accordingly. I can’t fathom any child to be a burden as each and every one of them is a blessing with their own unique gifts to share to the world.
Autism Speaks is perhaps most controversial for their support of finding a cure for autism, or a pre-natal test similar to what’s available for Down syndrome and other genetic conditions. Some autistic adults see this as a direct affront to their existence — how can Autism Speaks possibly claim to represent them, when in effect, they seek to end the possibility of children like them existing? They even partnered with Google to launch a genome-sequencing project, MSSNG, which aims to sequence ten thousand complete genomes and “will identify many subtypes of autism, which may lead to more personalized and more accurate treatments.” While this may sound “great,” it’s reasonable to believe that if they can identify what causes autism, they can identify how to prevent it. Even the project’s name, MSSNG, is a twist on “missing,” one of many negative ways the organization has referred to autistic children in the past.
There is a push by some in the autistic community to make April Autism Acceptance Month, rather than focusing on awareness; but there is wide debate within the community itself as to just what constitutes “acceptance.”
I believe with everything that has come to light so far on this that there is still a long way to go based on Autism Awareness or Autism Acceptance.
In the end, we still have a lot to learn — no matter what it is by being an advocate or a voice for others to understand us better. Because of all that I have read so far, regardless of how we choose to approach autism advocacy in the future. So, to end this I shall say may many of you choose to wear #redinstead.
This video idea or topic has come about from some of the Autistic YouTubers I’ve been watching recently of the likes of IndieAndy and Invisiblei. While watching them two as well as reading some blogs about this topic, I thought to myself shall I really share my thoughts on this topic? What does need to be addressed is so much here in this. So, just bear with me as this is only based on my opinions as well as to what I’ve seen and experienced in some Autistic Groups I’ve been in. This is a matter of fact, in response to them both of their concerns/worries for the Autistic Community as a whole. I want to say that both of these people are brave and courageous to speak their opinions or concerns about this. It does take a lot of guts and thanks for sharing this with us. You are amazing and you’re honesty is real and that it is now time for many of us Autistics should be able to speak out about it all. Just as a side note before I continue to write or share this video (which will be shared during the month of Autism Acceptance and Awareness month) that will come out during the week of Autism Awareness and Acceptance month, that you can agree or disagree to what I am saying and vice versa if you were to share this with others, I would totally do the same in which is respecting your opinions and views. I love to hear what you think of somethings even if I don’t always agree with you, I will still engage with you somehow. I want to be able to try and talk to some of the topics that maybe uncomfortable for some people on the Autistic community so that we can be able to connect and feel included in some way.
Let’s be real here I don’t wish it to come across as a lecture or a rant. So, let’s try to avoid it in that retrospect and also to respect our opinions of this matter that need to be addressed. What I’ve seen or heard in the autistic community has really affected me emotionally as we all should be there for one another and that we should be including as much people in our community,accepting one another based on our differences and so much more. Some of the reasons are listed as follows:
1) Some autistics aren’t being heard or listened to what is going on and that some places now are starting to not feel as if it is a safe place or haven for them to talk to others or even just posting what they’re going through without the fear of being judged or excluded from the group just for saying what is going on or even if they’re struggling to use the right terms etc.
Some of this that been hearing or seeing, has given me mixed emotions and feelings through all this as well. Sometimes, when all this is going on inside the groups, it’s just makes me feel not to be involved in the Community. I am trying to support others as it is a shame really as am sure that there’s others out there that feels the same way or come to some agreement of what I am sharing right now. It’s like that despite it needing the feels to be safe, some days I just take a step back or try to do some other things in my day and conserve that energy for other matters that need to be shared or thought out. Before, I want to continue to share this, I will hope that I can have this conversation open in the discussion/comments section for you all to share what it is that concerns you of the Autistic Community and what you think you would like to see changed. As you are aware that ever since I’ve started writing my blog or even started my channel that I’ve been as real and honest with you guys and inviting you guys on a journey with me as a whole to see what life is like and that I am always willing to try and open up the floorboard to many discussions of different topics and I do my utmost best to answer any questions or concerns.
2) Is having others to try and speak out for or behalf of the Autistic Community- Yes, I believe that many are autistic themselves. Regardless of the connectivity that we are in of the spectrum for Autism and how close we are by having some similar interests to one another yet we are all different and unique souls that I feel right now it’s not right or not even anyone should have the place to at least for anybody to speak on behalf of every autistic person regardless of how autistic or not that they are and how involved that they are in based on the experiences that they may have as every experience we have is different to one another. There are a few people that try to speak on behalf of the autistic community that I may not agree with and vice versa and it is about respecting each others different opinions when it is shared and not to slap it back in our face if you wanted our opinion. Sure, I may see it from a different angle yet sometimes some things need to be met somehow I may say or think differently even if they think that they are right all the time or try to correct me with a few things and that is fine to point but what I am getting at is just they will want to correct you and I know that there are some autistics that are still learning about themselves and others around them.
3) Another scenario right now I’ve seen and heard about is the language preferences barrier between us all.
The preferences to what you wish to be called like I hear alot of people saying what they want to be called. I talked about this in one of my videos which will link here and in the icard and description for you to gain more understanding here to what I am trying to say. Example for this to gain a better understanding is that someone may tweet something like, “I met a person who has autism today.” Then you may have someone that is autistic and is again trying to speak for the whole of the autistic community something like, “On behalf of the autistic community, we’d prefer you to say autistic person.” Yes, I do understand that this is an opinion that alot of people on the spectrum may share but I have preferably have no preference to a point yet I like the feel of the term Aspie for me to be called. I did share some of the terms that maybe are being used in one of my videos which I will link here: https://www.youtube.com/watch?v=YKGJu0C9Ygg&t=1s We need to be patient and be able to guide them the right way. Sometimes, somethings that are being shared with the ones that are trying to agree with you at all cost. It is okay to not agree with a few things. Here I am saying, “Please stop and think to what you’re saying and doing as not all autistics may want this or like this or even agree to some of this to what you are saying to me.” We need to respect each others differences of opinions and thoughts etc.
I don’t force my opinion on others as I just accept others to how they want or what they want to be called autistic, aspie etc. I don’t like people from some of the Autistic Community to speak on my behalf as I am able to speak my opinions and thoughts on different matters that may matter to me and may not matter to you and vice versa. This also goes to trying to speak on my behalf to share their opinions and views and trying to force it upon me to believe that also when I have come to the point of my life I do my own research etc to line up to what I believe in of my views and opinions. It is again a matter of respecting our differences of opinions and differences of our thoughts. Just differences in general as well. Some people may have a preference of the language that is fine with me absolutely and others don’t in my case myself and maybe a minority of us that don’t. This isn’t a bad thing. It’s not a right thing or wrong thing. Preferences to language if you do or you don’t is totally cool with me. I will respect that and that goes the other way too. I don’t usually have a preference with language and that sometimes if you’ve watched some of my videos that I may say a few things out of my mouth, like blah blah and sometimes, I don’t filter my language properly and sometimes as you know that when it comes to my speech yes, I speak fast as sometimes my mind is engaging before my mouth or vice versa. I don’t usually police my own terms that I use. As you’re aware I use the variety of terms that are usually used example, Aspie, Aspergers Syndrome, Autism, Autistics and so on. I know that this can be a bad thing when you’re in an autistic community as I see that most people have a rigidiy of preferences and I try to care and then again not to care as we should be able to express ourselves and be ourselves in the community that we are in. For people that are trying to speak on my behalf telling me how I should be addressing others in the community and not very often I will speak about this due to the fear of being judged, fear of getting a backlash from them etc. For having some form of language right now, it’s a big thing in the community right now at this given moment. And, you may be seen as you know why isn’t this important to you as it is to us? It should be important to you! I’m like trying to say what I want to say and mean and then I get a few handful of people that will attack me and then I am like needing to have to apologise when it shouldn’t have to be necessary or even trying to validate my feelings or thoughts if they’re valid. I will be like sorry I can’t forever change how my brain is wired and how it is working like a strip of film having to act a certain way etc and that is coming to the term of “Shapeshifing” which again I discussed this and you can view it here: https://www.youtube.com/watch?v=5yrNF9_jG6A
I shouldn’t have to change something about me or say turning on and off a switch just to be on the right side of you. I would rather try and be as open, honest and transparent to the point of the important topics/matters that I wish to share with you will as well as promoting an open honest conversation with you all that doesn’t involve policing language and that for others to be able to feel safe and be able to express themselves and openly be able to feel what and how they are really feeling like they’re saying something wrong or not saying it correctly. I’ve rather invite and promote these type of conversations than promoting conversations that you have to say everything one hundred percent correct all the time. Yes, we may have some weaknesses in some areas of either communication or some form of language that needs to be had/shared. I may see or hear someone saying something that isn’t right or even about to offend someone but not me but maybe to the person who they’re talking to or addressing some form of topic to that person then if it does get to the point where it may feel it is on the edge of getting a bit controversial or political – if I can and will I will try my hardest to politely correct them and will address it like, “I totally get what you mean, you made a really good point and thanks for contributing to the conversation – just a heads up this tem or this way of wording what you’re wording can be a little bit offensive to some people. Or even some people may even not like this at all so in future this is something that you should think about before contributing or sharing your thoughts. How about we go about saying this instead and guide them through that process gently and not in a judgemental way. I will carry that conversation yet I won’t totally shut the conversation down despite that there has been a few instances in some of the groups that has happened to me and some fellow Autistics. Just as the conversations we have are flowing and that they’re going okay and that it’s still open and we should be able to not be triggered to what others may say.
4) When I have been in the autistic community that sometimes, as shared earlier or just now that some of the conversations that are being had either that they’re being shutdown or they are just like getting bullied or even removed from the group from the admin/moderator
A huge example to illustrate to get a better understanding about how we work as Autistics that there is someone that’s outside our community group and that they want to know more and are curious, ask some questions or just one question to start that conversation of a topic that they may want to know more of like a person with autism as opposed to someone who is autistic. Yes, for many of us who are autistics we aren’t all experts in the field of Autism even though we live with it we share our life stories and experiences to what we go through on a daily with it. We know for a fact that there has been so many myths/misconceptions and this is still a mystery to the puzzle. Some people in the group that may be policing the language that needs to be said and that some may say, “You shouldn’t say that on behalf of this community, you should say autistic person.” And then they may not respond to the question or don’t like invite a continuing conversation and then the conversation stops or ‘ shutdown and then the person who’s trying to learn and get involved somehow, will end up leaving having a negative response or negative thoughts of what the community that they’re trying to be a part of is really about. I feel as if somehow some of us on the community is preventing people that are interested to learn more about us and the community to come to some understanding about us as well as us we should be creating awareness and acceptance of each other. Maybe to better understand someone that they may know of that has autism or someone that they’re maybe being their support person to understand how they go about things in an everyday situation. Whatever the reason, again I can’t stress it enough that we should be able to feel included and accepted. We know that we are sometimes misunderstood when we are autistics. Yes, we are always going to ask questions and be the mister Curious George. Yet, the ones that are in the community are solely focusing on the way of how some words are said and how they approach that matter or address these different topics at hand. I have seen in some autistic groups for some that are wanting to know more about us that there are statements, curiosities, questions and so much more that is coming from a lack of understanding yet isn’t malicious as these type of people are just trying to be friendly and may be cautious at the same time. With that lack of understanding then some of the autistics in the community will lash out at them in a negative way. You see some of the autistics in the community will put up a wall of defense or a guard up and expect others to know what to say and how to say it to them and then it is like “Don’t say anything to us until you get these terms right!” This really hurts me when I see or hear others that goes through some experiences like this as we should all be about inclusivity and trying to gain a better understanding about us a bit more and so on and so forth. Please don’t go bashing me as don’t get me wrong that there are a minority of people in the Autistic community that’s not like this at all. I know that there are loads of people that are willing to open up and answer any questions that you may have and open up for conversations regardless of language. They’ll talk from their own personal experiences as opposed to talking on behalf of everybody.
To end this afterthought: Let’s be real I am worried and concerned about the long term effects and consequences of this because the more the conversations that were to be had and that they’re being shutdown along with the refusal of not involving people or including others that may not know about the Autistic Community from when they didn’t do it correctly or with the right language. I feel that we are separating ourselves to the point of no return and that there are some Autistics in the community that their main goal in terms of advocacy and awareness is inclusion and acceptance. We need to bridge that gap between people who are and who are not on the spectrum and this is sadly as I can see isn’t happening at the moment because of the way certain members in the community is acting and behaving towards others. Like shutting each other down or even just some topics down and refusing to talk because it’s not seen as correct in their eyes. Or their opinions/views has gone in a way of having a very open and honest discussion to educate and advocate. From my experience at hand, I know firsthand with the many conversations I’ve had with people that may want to have an autistic friendly environment, or to open up some services to us Autistics, and that they’re worried it may not be deemed good enough or seen as good enough in our community and that they may get backlash from it. Because, everything that they do, will not appeal to everybody. Or be deemed as not suitable for everybody based on their needs and so much more. They may have others judging them for not being autism inclusive and it’s not autism friendly. This really upsets me to see or hear this as there are some people that are willing to open their doors to many of us Autistics and giving us a chance in employment as well as just wanting to learn more about our community in general as well as in terms of their business as well as being worried to how we are going to react. People are afraid of us as we are monsters or something or just scared of our community as a whole and scared of opening doors up to us for a chance or an opportunity to work with them. I just want to try and share my thoughts or opinions and actually say to these one that are trying to give us that chance to not be afraid of us. I am in this community and that I wouldn’t blame them for being scared of us as I am scared to just being in a community that we still have a lot to learn and educate in ourselves.
This is a letter to all of the women who’s watching this video today who knows better than the Scarlet Letter (a letter that was worn by a person convicted of adultery)than their sisters.
Dear sisters, In my whole life and existence even when I began to talk and breathe that I struggled every day to trust wholeheartedly men and women especially men. From what we come to terms and face every day from bullying to body shaming to even a slut shaming other woman today.
I heard so many things from girls and women from a young age till the age they are at right now saying things like “I love her but she’s a dirty hoe,” “She’ll be much prettier without that type of mouth or nose,” “She’s not at all talented.” “She’ll never make it!” Think of the ratio. These are your sisters. We do not exist yet we try to really exist somehow in our own existence but not in silos.
I’m proposing you right now thst you are outgrowing your own team and opposition to one another. Your own experience or lack of each other. If we are all standing in belief for fighting for one another and equality. There has to be some form of camaraderie and bravery. So, this is a letter to every women who is watching who thinks they know or knows better than their own sisters in general to whisper about one another and backstab or showing such pure jealousy of their own sisters. There is no in progress when we march to a different beat of a song. There is no progress when we march in different directions. Correction here – listen up and listen closely! There’s no progress when we march in discriminatory sections.
White women show up for your sisters of color. Straight women show up for your sisters in the LGBQT+ community. Every women, yes you who is also watching this. Show up and have the guts to look at the differences in all women because this seems relate like the difference is thag it drastically of the question we ask ourselves is: ls it really progress? We need to question ourself or no progress at all? We can not afford to divide each other since right in the early days of what we were taught was to compare each other and to compete with one another no matter what it was or who it was. We will compete with one another to the very end to our own death. You are forever not devalued even if the woman you are sitting at or next to right now is to be perfect. But, let’s be real right now, there’s no such thing as being perfect.
We need to accept ALL our faults, our imperfections once and for all. You are forever not devalued if your sisters are achieving greatness and achieving much more than you. You are always of a greater price and value but don’t look at it as a price tag. If you value yourself,value you and only you.
Again, dear sisters, take a deep look and breath right now and look around you as well as in the mirror and see yourself a little clearer. Question: What type of woman do you represent and show for? Do hold yourself accountable for your own actions, sayings, and doings. Show up for the sisters that you might not know or even understand. Show up for those sisters who you might not even like you at all or even they may not like you at all. Show up for all of us.
For the unity and the choices, you will make, begins with you and you who you choose to stand up for. And, the choices in unity, you stand up for, ends with you also …. ….
CONTENT TRIGGER WARNING: This is only based on some of the people on the autistic community about this delicate topic yet I have done my own research and would like to share my own personal opinion on this.
CONTENT TRIGGER WARNING AND DISCLAIMER
I am no medical doctor, I am just your normal Jo Blogs, so if you see anything out of the ordinary, do seek professional help for yourself or your loved one or seek second opinion for yourself or your loved one as I don’t condone self-harm.
Without a doubt there has been cause of concern and cause to question about Applied Behaviour Analysis therapy largely by some parents with autistic children along with the autistic advocates, largely because of a fiercely articulate and vocal community of adults with autism. These advocates, many of them childhood recipients of Applied Behaviour Analysis , say that the therapy is harmful. They contend that Applied Behaviour Analysis, is based on a cruel premise — of trying to make people with autism ‘normal,’ a goal articulated in the 1960s by psychologist Ole Ivar Lovaas, who developed ABA for autism. What they advocate for, instead, is acceptance of neurodiversity — the idea that people with autism or, say, attention deficit hyperactivity disorder or Tourette syndrome, should be respected as naturally different rather than abnormal and needing to be fixed.
Sure, it may be working for some children with Autism and not for others. I will have to say myself that what you do decide for your child is up to you. This into what I am sharing is just based on some of the research I’ve done as well as talking to some autistics on the autistic community to share what and how they feel about it all.
“Applied Behavior Analysis has a predatory approach to parents,” says Ari Ne’eman, president of the Autistic Self Advocacy Network and a prominent leader in the neurodiversity movement. The message is that “if you don’t work with an ABA provider, your child has no hope.”
What’s more, the therapy has a corner on the market, says Ne’eman. Most states cover autism therapy, including, often, Applied Behavior Analysis — perhaps because of its long history. But in California, for example, parents who want to pursue something else must fund it themselves.
Whether Applied Behavior Analysis is helpful or harmful has become a highly contentious topic — such a flashpoint that few people who aren’t already advocates are willing to speak about it publicly. Many who were asked to be interviewed for the article of SpectrumNews declined, saying they anticipate negative feedback no matter which side they are on. One woman who blogs with her daughter who has autism says she had to shut down comments on a post that was critical of their experience with an intensive ABA program because the volume of comments — many from Applied Behavior Analysis therapists defending the therapy — was so high. Shannon Des Roches Rosa, co-founder of the influential advocacy group Thinking Person’s Guide to Autism, says that when she posts about Applied Behavior Analysis on the group’s Facebook page, she must set aside days to moderate comments.
Strong opinions on both sides of the issue abound. Meanwhile, parents like Quinones-Fontanez are caught in the middle. There’s no doubt that everyone wants what is right
for these children. But what is that?
A new view on Applied Behaviour Analysis:
Before the year of the 1960s, when autism was still poorly understood, some children with the condition were treated with traditional talk therapy. Those who had severe symptoms or also had intellectual disability were mostly relegated to institutions and a grim future.
Against this backdrop, Applied Behavior Analysis at first seemed miraculous. Early on, Lovaas also relied on a psycho-therapeutic approach, but quickly saw its futility and abandoned it. It wasn’t until Lovaas became a student of Sidney Bijou, a behaviorist at the University of Washington in Seattle — who had himself been a student of the legendary experimental psychologist B.F. Skinner — that things began to click.
Skinner had used behavioral methodologies to, for instance, train rats to push a bar that prompted the release of food pellets. Until they mastered that goal,
any step they made toward it was rewarded with a pellet. The animals repeated the exercise until they got it right.
Bijou contemplated using similar strategies in people, judging that verbal rewards — saying “good job,” for instance — would serve as adequate motivation.
But it was Lovaas who would put this idea into practice.
In 1970, Lovaas launched the Young Autism Project at the University of California, Los Angeles, with the aim of applying behaviorist methods to children with autism. The project established the methods and goals that grew into Applied Behavior Analysis Part of the agenda was to make the child as ‘normal’ as possible, by teaching behaviors such as hugging and looking someone in the eye for a sustained period of time — both of which children with autism tend to avoid, making them visibly different.
Lovaas’ other focus was on behaviors that are overtly autism-like. His approach discouraged — often harshly — stimming, a set of repetitive behaviors such as hand-flapping that children with autism use to dispel energy and anxiety. The therapists following Lovaas’ program slapped, shouted at or even gave an electrical shock to a child to dissuade one of these behaviors. The children had to repeat the drills day after day, hour after hour. Yet, as we we know that it’s important for us autistics to stim as this is an outlet to reduce stress and anxiety. I have shared more about stimming and its importance etc where you can watch here:
In these early years of the 1970s, videos of these early exercises show therapists holding pieces of food to prompt children to look at them, and then rewarding the children with the morsels of food.
Despite its regimented nature, the therapy looked like a better alternative for parents than the institutionalization their children faced. In Lovaas’ first study
on his patients, in 1973, 20 children with severe autism received 14 months of therapy at his institution. During the therapy, the children’s inappropriate behaviors
decreased, and appropriate behaviors, such as speech, play and social nonverbal behavior, improved, according to Lovaas’ report. Some children began to spontaneously
socialize and use language. Their intelligence quotients (IQs) also improved during treatment.
When he followed up with the children one to four years later, Lovaas found that the children who went home, where their parents could apply the therapy to some degree, did better than those who went to another institution. Although the children who went through Applied Behavior Analysis didn’t become indistinguishable from their peers as Lovaas had intended, they did appear to benefit.
In 1987, Lovaas reported surprisingly successful results from his treatments. His study included 19 children with autism treated with Applied Behavior Analysis for more than 40 hours per week – “during most of their waking hours for many years,” he wrote — and a control group of 19 children with autism who received 10 hours or less of Applied Behavior Analysis
Nine of the children in the treatment group achieved typical intellectual and educational milestones, such as successful first-grade performance in a public school.
Eight passed first grade in classes for those who are language or learning disabled and obtained an average IQ of 70. Two children with IQ scores in the profoundly
impaired range moved to a more advanced classroom setting, but remained severely impaired. In comparison, only one child in a control group achieved typical educational
and intellectual functioning. A follow-up study six years later found little difference in these outcomes.
The methods promised parents something that no one else had: hope of a ‘normal’ life for their children. Parents began to demand the therapy, and soon it became the
default option for families with newly diagnosed autism.
“ Applied Behavior Analysis has a predatory approach to parents.” Ari Ne’eman
Lovaas’ Applied Behavior Analysis was formulaic, a one-size-fits-all therapy in which all children for the most part started on the same lesson, no matter what their developmental age.
Michael Powers, director of the Center for Children With Special Needs in Glastonbury, Connecticut, started his career working at a school for children with autism
in New Jersey in the 1970s. The therapist would sit on one side of a table, the child on the other. Together, they went through a scripted process to teach a given skill
— over and over until the child had mastered it.
“We were doing that because it was the only thing that worked at the time,” Powers says. “The techniques of teaching autistic kids hadn’t evolved enough to branch out yet. ” Looking back, he sees flaws, such as requiring children to maintain eye contact for an uncomfortably long period of time. “Five seconds. That was one skill we were trying to establish, as if that was the pivotal skill,” he says. But it was artificial: “The last time I looked someone in the eye for five consecutive seconds, I proposed.”
I also shared a few videos about autistics doing eye contact is it worth it or not? (Video reference: Autism/Why Eye Contact is hard for people on the Autism Spectrum)
Doubts grew about how useful these skills were in the real world — whether children could transfer what they’d learned with a therapist to a natural environment.
A child might know when to look a therapist in the eye at the table, especially with prompts and a reward, but still not know what to do in a social situation.
The aversive training components of the therapy also drew criticism. Many found the idea of punishing children for ‘bad’ behavior such as hand-flapping and vocal
outbursts hard to stomach.
Over the years, Applied Behavior Analysis has become more of a touchstone — an approach based on breaking down a skill and reinforcing through reward, that is applied more flexibly. It’s a broad umbrella that covers many different styles of therapy.
Among the many variations now in practice include pivotal response training, a play-based interactive model that sidesteps the one-behavior-at-a-time practice of traditional Applied Behavior Analysis to target what research shows to be ‘pivotal’ areas of a child’s development, such as motivation, self-management and social initiations. Another is the Early Start Denver Model (ESDM), a play-based therapy focused on children between the ages 1 and 4 that takes place in a more natural environment — a play mat, for example, rather than the standard therapist-across-from-child setup. These innovations have in part stemmed from the trend toward earlier diagnosis and the need for a therapy that could be applied to young children.
Each type of Applied Behavior Analysis is often packaged with other treatments, such as speech or occupational therapy, so that no two children’s programs may look alike. “It’s like a Chinese buffet,” says Fred Volkmar, Irving B. Harris Professor of Child Psychiatry, Pediatrics and Psychology at the Yale University Child Study Center and lead author of “Evidence-Based Practices and Treatments for Children with Autism,” a book many consider the go-to reference for Applied Behavior Analysis
As a result, when asked whether Applied Behavior Analysis works, many experts respond: “It depends on the individual child.”
Today, Lovaas is viewed with the same kind of respectful ambivalence afforded Sigmund Freud. He’s credited with shifting the paradigm from hopeless to treatable.
“Lovaas, may he rest in peace, was really on the forefront; 30 years ago, he said we can treat kids with autism and make a difference,” says Susan Levy,
a member of the Center for Autism Research at the Children’s Hospital of Philadelphia. Without his passion, says Levy, many generations of children with
autism might have been institutionalized. “He has to get credit for going out on a limb and saying we can make a difference.”
Testing Applied Behavior Analysis
Given the diversity of treatments, it’s hard to get a handle on the evidence base of Applied Behavior Analysis . There is no one study that proves it works. It’s difficult to enroll children with autism in a study to test a new therapy, and especially to enroll them in control groups. Most parents are eager to begin treating their children with the therapy that is the standard of care.
There is a large body of research on Applied Behavior Analysis , but few studies meet the gold standard of the randomized trial. In fact, the first randomized trial of any version of Applied Behavior Analysis after Lovaas’ 1987 paper wasn’t published until 2010. It found that toddlers who received ESDM therapy for 20 hours a week over a two-year period made significant gains over those who got the usual care available in the community.
That year, a report from the U.S. Department of Education’s What Works Clearinghouse, a source of scientific evidence for education practices, found that of 58 studies on Lovaas’ Applied Behavior Analysis model, only 1 met its standards, and another met them only with reservations.
Those two studies found that Lovaas-style Applied Behavior Analysis leads to small improvements in cognitive development, communication and language competencies, social-emotional development, behavior and functional abilities. Neither of the high-standard studies evaluated children in literacy, math competency or physical well-being.
The following year, the U.S. Agency for Healthcare Research and Quality commissioned a stringent review of studies on therapies for children with autism spectrum disorders, with similar results. Of 159 studies, it deemed only 13 to be of good quality; for Applied Behavior Analysis -style therapies, the review focused on two-year, 20-hour-a-week interventions.
The review concluded that early intensive behavioral and developmental therapies, including the Lovaas model and ESDM, are effective for improving cognitive performance,
language skills and adaptive behavior in some children. The results for intensive intervention with ESDM in children under the age of 2 were “preliminary but promising.”
There was little evidence to assess other behavioral therapies, the review’s authors wrote, and information was lacking on what factors might influence effectiveness and
whether improvements could carry over outside of the treatment setting.
Levy, who served on the review’s expert panel, says although the evidence in favor of Applied Behavior Analysis is not all of the highest quality, the consensus in the field is that Applied Behavior Analysis -based therapy works.
“There is a lot of good clinical evidence that it is effective in helping little kids learn new skills and can appropriately intervene with behaviors or characteristics that may interfere with progress,” says Levy. There are also other types of Applied Behavior Analysis that might be more appropriate for older children who need less support, she says.
Broadly speaking, the body of research over the past 30 years supports the use of Applied Behavior Analysis , agrees Volkmar. “It works especially well with more classically challenged kids,” Volkmar says — those who may not be able to speak or function on their own. These are, however, exactly the people that anti-ABA activists say need protection from the therapy.
Most experts acknowledge that there is a segment of children for whom Applied Behavior Analysis might be less appropriate — say, those who don’t need much support. One active area of research is scanning the brains of children to try to understand who responds and why. “Probably, as we go further down this path, we’ll see kids whose brains don’t change in response to treatment. They’re going to emerge as an important group,” says Volkmar. “We don’t know enough about them.”
Being able to identify those children who don’t have the expected neurological response — or being able to classify those who do into meaningful groups —
might make it possible to fine-tune therapy.
“One day, it would be nice to match the treatment approach based on more information from these profiles rather than one-model-fits-all treatment,” says Karen Pierce,
co-director of the Autism Center of Excellence at the University of California, San Diego, who uses imaging to study people with autism. “If we’re more informed,
the treatment will be more successful.”
In December 2007, a series of signs in the style of ransom notes started appearing around New York City. One read, in part, “We have your son. We will make sure he will not be able to care for himself or interact socially as long as he lives.” It was signed “Autism.” The sign and others were part of a provocative ad campaign by New York University’s Child Study Center.
The campaign unintentionally provoked an onslaught of criticism and rage from some advocacy groups against the center, which offers Applied Behavior Analysis . Many of the vocal activists once received Applied Behavior Analysis , and they reject both the therapy’s methods and its goals.
Ne’eman, then a college student, was at the forefront of the pushback. One major criticism of Applied Behavior Analysis the continued use of aversive therapy including pain, such as electric shock, to deter behaviors such as self-injury. Ne’eman cites a 2008 survey of leaders and scholars in the field of ‘positive behavior interventions’ — Applied Behavior Analysis techniques that emphasize desirable behaviors instead of punishing disruptive ones. Even among these experts, more than one-quarter regarded electric shock as sometimes acceptable, and more than one-third said they would consider using sensory punishment — bad smells, foul-tasting substances or loud or harsh sounds, for example. Ne’eman calls these numbers “disturbing.”
He and others also reject what they say was Lovaas’ underlying goal: to make children with autism ‘normal.’ Ne’eman says that agenda is still alive and well among Applied Behavior Analysis therapists, often encouraged by parents who want their children to fit into society. But, “those aren’t necessarily consistent with the goals people have for themselves,” he says.
The core problem with Applied Behavior Analysis is that “the focus is placed on changing behaviors to make an autistic child appear non-autistic, instead of trying to figure out why an individual is exhibiting a certain behavior,” says Reid, a young man with autism who had the therapy between ages 2 and age 5. (Because of the controversial nature of Applied Behavior Analysis and to protect his privacy, he asked that his full name not be used.) The therapy was effective for Reid. In fact, it worked so well that he was mainstreamed into kindergarten without being told he had once had the diagnosis. But he was bullied and picked on in school, and always felt different from the other children for reasons he didn’t understand, until he learned in his early teens about his diagnosis. He had been taught to be ashamed of his repetitive behaviors by his therapists, and later by his parents, who he assumes just followed the experts’ advice. He never realized these were signs of his autism.
Reid says he worries Applied Behavior Analysis forces children with autism to hide their true nature in order to fit in. “It’s taken me a long time to not be ashamed of being autistic, and that only came because I got the chance to learn from other autistic people to be proud of who I am,” he says.
“There is a lot of good clinical evidence that it is effective in helping little kids learn new skills.” Susan Levy
The middle ground There might be middle ground between critics and supporters of Applied Behavior Analysis , says John Elder Robison, bestselling author of “Look Me In The Eye,” who was diagnosed with Asperger syndrome at age 40.
Because of his late diagnosis, Robison did not receive Applied Behavior Analysis himself, but he has become involved in the issue on behalf of those who did. He envisions a place for Applied Behavior Analysis for people with autism — as long as it’s done well. That means a focus on teaching skills, rather than efforts toward normalization or suppressing autism-related behaviors: helping a child who could not communicate begin to talk and engage with other kids at school, for instance. “That is life-changing in a good way,” he says. Ditto an Applied Behavior Analysis therapist who helps a high school or college student become more organized. The emphasis should be on learning to function in areas the individual chooses, not on changing who she is, Robison says.
This approach will require oversight from people with autism, says Robison. “ Applied Behavior Analysis programs and practitioners are going to need to accept guidance from adult versions of people they propose to treat,” he says. “What was not clear in the past is that we are the clients; we [should] have a say in what happens.”
Advocates say scientists also need to be open to the fact that Applied Behavior Analysis might not work for all. There is increasing evidence, for example, that children with apraxia, or motor planning difficulties, can sometimes understand instructions or a request, but may not be able to mentally plan a physical response to a verbal request.
Ido Kedar, who at 16 published his own memoir, “Ido in Autismland: Climbing out of Autism’s Silent Prison” writes on his blog that he spent the first half of his life “completely trapped in silence.” Kedar received 40 hours a week of traditional Applied Behavior Analysis therapy, in addition to speech therapy, occupational therapy and music therapy. But he still could not speak, communicate non-verbally, follow instructions or control his behavior when asked, for instance, to pick up the correct number of sticks. Kedar understood the request, but was unable to coordinate his knowledge with his physical movement. He was humiliated when the Applied Behavior Analysis therapist reported that he had “no number sense.”
Many researchers who study Applied Behavior Analysis welcome input of voices like Kedar’s. “I feel like it is the most wonderful, amazing thing to be able to talk with adults with autism about their experiences,” says Annette Estes, professor of speech and hearing sciences at the University of Washington in Seattle. “We all have a lot to learn from each other.” Estes led two studies of ESDM for children with early signs of autism. She says the worst stories she has heard are not from people who had traumatizing therapy, but from those who got no therapy at all.
“They have horrible memories of being bullied at school and [having] no one to help them or include them or help them make friends or handle tricky social situations,”
she says. “I get letters from people begging us to expand services to adults to help them learn how to date and be less lonely and isolated.”
To end this: there is not likely to be an easy end to this discussion, and in the meantime, parents must do the best they can.
This is my next video for the grief and loss series on my channel. Feel free to view my channel and share my videos and channel link to your friends and family. Thanks for many of you guys that has been supporting me in the past few years.