Do Real Men Grieve? [2019] – YouTube

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.

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64 Myths about Grief that needs to just STOP

Stop! Do you know what you’re saying and doing right now, isn’t the right way of handling the situation for others that are grieving for their loved ones?
This is just a bit of a shorter version to the reading you’re reading right now. Feel free to view this as well to gain a better understanding.

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.

“Why did you say this in the first place?” Have you heard of think before you speak? Nope, I see that you’ve clearly haven’t!

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. 

3. There is a consistent and predictable timeline for grief.

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”.

7.  If you are still talking about your loved one after ____ years it means you’re “stuck”.
8. If you still display photos of your loved one after ____ years it means you’re “stuck”.
This one here is controversial and may have many differences of opinions on this myth yet when I have been thinking is it coincidence or some form of trend to keep and/or display photos of your loved ones after passing?

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”.

11. Women grieve more than men.

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.”

Intuitive

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.

instrumental

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.

blended

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.

12. Men don’t want to talk about their 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.
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.

Note: I did a video of what to say and do and what not to say and do to a grieved one which you can see here:
* What to say and do when someone dies: https://www.youtube.com/watch?v=fSYgAxSkIdE

Men are known to be the forgetful mourners while grieving for their loss.

13. You can only grieve a death.

14. You can’t grieve something you never had.

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.

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.

15. Your friends and family will always be the best support.

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.

17.  Grief follows a similar path and timeline for everyone.

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.

20.  The only grief theory is Elizabeth Kubler-Ross’ 5 Stages because everyone knows it’s accurate.

21.  Grieving is a problem.

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.

25. Certain types of loss are inherently “better” or “worse” than other types of loss.

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:

  1. Acknowledge their presence, their importance, their opinions, thoughts, and feelings.
  2. Be patient and open minded.  Allow them to grieve in their own way.
  3. Be available – Sit with the child, listen to them, and answer their questions.
  4. 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).
  5. Let them know that a range of different emotions are normal.
  6. Validate their feelings and do not minimize them.
  7. 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:

o-1:

* 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.

1-2:

* 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.

2-4:

*  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.

4-9:

*  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.

9-12:

*  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.

12-20(ish). 

*  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.

27. Children should not attend funerals.
This is not true. We know that they’re allowed to be at funerals so that they can deal with what they need to do for themselves.

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. 

29.  Not having a funeral will hinder your ability to grieve or “find closure”.
There are many other ways that you can do if you don’t attend to a funeral.

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

30.  You grieve less when you know in advance someone is going to die.

Anticipatory Grief: the nitty gritty

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

  1. 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!
  2. 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, artphotography, 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.
  3. 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.  
  4. 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.
  5. 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).
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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.

35. People don’t grieve after a miscarriage in the same way they grieve other deaths.

36. If something helped another grieving person, it will help you.

37. If something helped you while you were grieving, it will be helpful to most other people who are grieving.

38. Keeping a journal always helps.

39. Going to therapy or a support group is always helpful.

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:

Grieving dictionary.com defines grieve as: verb (used without object), grieved, griev·ing.

to feel grief or great sorrow:She has grieved over his death for nearly three years.

verb (used with object), grieved, griev·ing.

to distress mentally; cause to feel grief or sorrow:It grieves me to see you so unhappy.Archaic. to oppress or wrong.

Mourning dictionary.com defines this as:

noun

  1. the act of a person who mourns; sorrowing or lamentation.
  2. the conventional manifestation of sorrow for a person’s death, especially by the wearing of black clothes or a black armband, the hanging of flags at half-mast, etc.
  3. the outward symbols of such sorrow, as black garments.
  4. the period or interval during which a person grieves or formally expresses grief, as by wearing black garments.

adjective

of, relating to, or used in mourning.

44. Just because someone looks okay when they are grieving it means they feel okay.

45. When you lose a spouse, if you haven’t started dating after _____ years it means you’re stuck.

46. After losing a spouse you need to start dating in order to “move on”.

47. After the death of a child, having another child lessens your grief.

48.  Being reminded that your loved one “wouldn’t want you to be sad” is helpful.

49. The best thing you can do is say something comforting, positive, or optimistic to a griever.

50. Grief is the same as sadness.

Don’t get me wrong, sadness is part of grief, but grief and sadness are not the same thing.  Grief is so much more than sadness, for so many reasons.

51. Grief is the same as depression.

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.

Clinical Perspectives

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.

Comparisons

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.

Similarities

Grief has several symptoms in common with the symptoms of major depressive disorder, including:

  • Intense sadness
  • Insomnia
  • Poor appetite
  • Weight loss

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:

  • Intense sadness
  • Anger
  • Irritability
  • 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.

Differences

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).

52. Grief is a single emotion.

53. Once someone dies, you can no longer have a relationship with them.

54.  When someone dies you will always feel their presence if you are attuned to it.

55.  If you have faith in God it will lessen your grief.

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.

57. You cannot grieve someone who is still alive.

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!

59.  If you avoid grief and keep a stiff upper lip, it will eventually go away.

60.  If a widow or widower has photographs of their late husband or wife up around the house it means they aren’t ready to get involved in a new relationship.

61.  When kids are involved, it’s important to stay strong and focus all your attention on their grief.

62.  God never gives us more than we can handle

63.  After a death, you will always feel a rush of strong emotions.  

64.  Eventually you will stop noticing and/or being affected by grief triggers.

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:

Time to debunk some of these myths and misconceptions along with the pet peeves! Are you ready?

Leave a comment below to keep the list going with your contributions! 


[Collab] Introducing Diamond from DiamondInTheRough (Spina Bifida)

Today, as a special guest to talk about her condition is Diamond from DiamondInTheRough which you can see her channel by visiting here: https://www.youtube.com/user/DiamondT…. I would like to thank her for coming onto my channel and that she will be talking more about her condition of Spina Bifida to us today. If you like this video, be sure to let me know if you’re interested in collabing with me to raise awareness and educate others about your condition. #collab #introducingdiamondintherough #spinabifida #spinabifidaawareness

What do Autistic People need now is ACCEPTANCE – (World Autism Awareness and Awareness Week,April 2019)

April 2nd 2019, was the day of Autism Acceptance or Awareness Month. I want to be real and honest with you all that I do tend to struggle with this month of what we
do for people with Autism as there’s been so many different opinions of what this month should be called. Question is that we need to ask ourselves should
it be called, Autism Acceptance Month or shall it be called Autism Acceptance month?
I believe that now in 2019 that there has been a lot more of Autism Awareness more than basically Autism Acceptance.I believe wholeheartedly that a lot of people are now aware about Autism or should be at least knowing what Autism is really about as there
has been so many people advocating for this and much more. There has been as I am aware that alot of awareness has been spread around on social media and many other ways as well.

As I have shared in one of my videos about an organisation that many autistics and anyone that has heard of Autism Speaks that has been dehumanising us Autistics by
trying to find cures and creating fear on some parts to what they have been trying to send as messages like Vaccines causes autism and yet, it is now been proven
that this isn’t the case anymore as more studies has been researched about this. I have also shared this in one of my videos which you can watch here.
(Reference: Autism and Vaccines/Is there a link? )https://www.youtube.com/watch?v=KANmvPfxrE4.

*Reference: This is a quick brief history of Autism and Vaccines to gain a better understanding as well.*

Especially with the ones such as Autism Speaks that many autistics don’t wish to hear about to raise money to “raise awareness” on this day. I won’t try and get into too much detail to why this is as you can watch this video I made above me to find out more to why that is: (*reference: Aspie Let’s Talk- Why WE SHOULDN’T support autism speaks- https://www.youtube.com/watch?v=MOdgoXz3pkg).

I don’t light it up blue like many of you that may do but that is okay as that is your choice as I decide to try and go for a color like red or gold to light up or wear as a form of acceptance in April *that is if I can find my clothes in these colors- little laugh.I would like to try and allow this month for me as an Autistic as a month of Autism Acceptance because yes we all do have a lot to do with Autism Awareness and that there’s a lot of it being spread.
I believe now is the time is the best time as any to have as acceptance. I believe that this month should be shared of Autism Acceptance not just in April but all year round. I believe that we should now start to accept others that are on the spectrum no matter where they are in their life and to accept everything about them in who and what they are not just as autistics but as a person. After all, we all have our strengths and weaknesses – just like you neurotypicals. I believe it is time for us to start accepting that are going to grow as Autistic Adults and for some that will need to stay away from some of the dangers of certain testing of empty promises of cures. There are often times that as we know that there are some dangers and that sometimes I have found that some people still maybe in oblivion
that people with Autism needs to be get rid of as if we are a disease, we are broken and can’t be fixed etc. Yet, again that goes back to what I was saying about being accepted as a whole of our everyday flaws and imperfections.

Advocacy as you know by now from me is what I am aiming and striving for as much as I can on my channel to remove the stigma and stereotyping along with creating a platform of mine that is based on acceptance and inclusion from all people in all walks of life
especially with people like me with Autism. I have heard from some parents, carers and more that there hasn’t been much of a way of us Autistics
being included and accepted in everyday life. I have heard that many people are saying either autistics that are either high or low functioning gets all the
attention and I believe that not many people are aware or educated enough about the more severe cases of the ones that has autism. The ones for whom that they can’t
seem to speak for themselves so that they have their parents or carers to speak on their behalf.I believe that there are a lot of people that should be now aware of that there was a diagnosis for people that was under the umbrella or spectrum called Aspergers Syndrome which this is what I was diagnosed with but
now it is classified as Autism as well.I mentioned a little bit about the Diagnostic Manual in this playlist which you can watch here:
( Reference: *https://www.youtube.com/watchv=Z5SXTqMHEXs&list=PLD1nCoeovTZ410885hWwrshBsfIFbqvXC)

Image:
https://www.growingyourbaby.com/scientists-develop-genetic-formula-for-detecting-autism-earlier/asd/

The four different types of autism

Note: Not all children, young adults and adults will have the same characteristic traits.*

I have also mentioned about the differences about Autism Spectrum Disorder or as what others wish it to be called Autism Spectrum and Aspergers which you can check it here too- Reference- High Functioning and Low Functioning Autism/What is the Difference https://www.youtube.com/watch?v=gSmhWW4gZ1c.

I am forever grateful that I’ve spoken to some autistics in the community to hear their stories as well as watching some of them on my channel. I am forever grateful that I can relate somehow in some way to what they go through of their everyday struggles. I know
that we all have our own struggles that we have to face and that this doesn’t mean others that aren’t autistics go through struggles of their own. Heck! Of course,
we all do. It is all about how we go about it in our everyday lives about how we act and think about it all. We need to ask ourselves or each other what can we do to help others on the spectrum. Some of the advertisements, posters etc that are trying to raise awareness isn’t helping many autistic adults,children transitioning into adults or even families that has children on the spectrum yet mainly it is the autistic adults or teens especially that need to be focused on more.I believe that there’s a need to do more in that area of awareness as we grow into adults that some of us autistics does require more help and assistance.
I believe that we need to teach people that having autism or autism in general isn’t that scary. It isn’t a disease. Teach others that people with autism aren’t monsters or that they aren’t broken as that need to be removed of that way of thinking.We need to teach parents to get a diagnosis of Autism early and having that label is an actual great aspect. Because, it can open doors of opportunities if we are given that chance to shine and to prove to the world of our gifts that we have as autistics. This can also help open doors to many resources that we may need to assist us in our everyday life as well as meeting our full potential. I believe that as shared earlier to remove, smash the stigma and stereotyping that comes with having Autism. That won’t happen until other people’s attitudes and thinking about us Autistics starts to change and again accept us for who and what we are!
I can’t stress it enough that we all need to try and find a way to smash out the stigma and breakdown walls of stereotypes once and for all. We are in 2019 and there’s a need for change in everything that we do and say towards one another. I believe that we need to help one another and to be kind to one another to understand and accept each others differences no matter who and what they are – Autistic or not! We shouldn’t have to live in a world where we should think and act the same way.
We are all born different and that we all have a voice and that we were all born to stand out if we choose to live our lives differently. Yes, it can be difficult
for us autistics especially trying to live in a world of expectations of how others wants us to be. We all have gifts, talents and a purpose in life. It’s all about
what it is and what we are going to do with it all. Not all brains work the same way. Maybe, we all should band together now and focus more on acceptance than awareness.
But, if you are spreading awareness let others know that autistics are awesome! People on the spectrum often will and have faced challenges in life no matter what.
Like with some of the characteristics of autism communication difficulties, socialisation difficulties, making friends, reading body language. This is just some of the
traits that they may commonly show yet not all autistics will. We shouldn’t ignore the difficulties that they face yet to embrace them as well as their flaws and so
much more. We are a part of your community regardless of this label. We are here and we are a part of you! We deserve the right to be here as well as you guys.
As the quote some of us live by “No different, no less!” rings true.This has been touted by the autism community as a widely recognized mantra as to what autistic individuals have to offer to the world. Children and adults with autism look at the world differently.
Autistic individuals may have different strengths and weaknesses than the general population, but it does not make them any less.
If anything it makes them more! I have shared my view about if anyone wants to cure me and I don’t wish to be cured as yes, I may have some faults and flaws, so,
don’t you all but the truth of the matter is that we should be able to accept them and I don’t wish for a cure as this is who I am and what I am today.
(Reference: Should there be a cure for Autism- https://www.youtube.com/watch?v=SbjMKpwbUWU). Short answer in conclusion is NO.

To end this with you all that are reading or even watching this as it goes live: I will continue on my channel and anywhere you see me to share my life stories and experiences with autism and some mental health conditions to advocate and educate as this is what I love to do. Most of the videos I hope to do is all based on Autism Acceptance more than Awareness as well because that is what the world needs as well as us autistics as a whole needs!

Update – February 2019

Hi all,

I know that this has been a long time for me to write in this blog of mine which a lot has been happening since last year.

You see I have been busy trying on my own to raise awareness as well as acceptance for Autism Awareness month and that at this moment of time where I am in NZ I have been trying to source out some funds to make this happen as well as many other future projects/plans for myself and my channel of what is hopefully to come that I hope to bring onto my channel yet I am needing your help if you are reading this.

As you are aware if you have been following me I create videos on Mental Health and Autism and not only does she creates them, I also advocate and I as said briefly earlier need our help in any way possible.

Aims & Goals

  • To advocate, educate and mentor others on and off the spectrum as well as mental health.
    • Advocacy: As per what it reads above in my purpose as an advocate, I will do my utmost best to achieve everything that is required of me to do of the duties at hand.
    • Educating: As for educating others, I will lead by example and to give my intellectual, moral, and social instruction to (someone), typically at a school or university.

Or to give (someone) training in or information on a particular subject. For example, in this case, I will plan to educate others that are interested in learning more about Mental Health as well as Autism Spectrum Disorders and also to raise some awareness around this along with the understanding of it all.

  • Mentoring: With all of this that has been shared so far, I believe that I should be trusted along with giving sound advice based on my own experiences in what I’ve been through that others are willing to learn and grow from what they go through to be or to become better people in the future.
  • By supporting others that it will be my duty to do my utmost best to find the right means of support through myself or the organization that I am working for and assisting others to be sure that every need is met.
  • To remove the stereotyping thinking that Autism Spectrum Disorders is a mental disorder.
  • To remove the myths about Aspergers Syndrome & Autism.
  • To create an understanding of what Aspergers Syndrome is really about for me while living with it.

I would also hope that with our help that with Autism Awareness coming up if anyone of you are interested who are in the same niche or not to wear a t-shirt of hers as support during Autism Awareness month and that have the hashtag of #autismawareness2019#nolessnodifferent in their videos or what have you. As well she is trying to find anyone that does live streams that do support this for now and hopefully with whatever amount she makes via through the stream as well as selling her shirts to the viewers that a certain percentage goes back to the organization as well here in NZ.

Before Autism Awareness month if anyone is willing to help design a poster to place on my Facebook page as well as many other social media/pages as well as anyone that could be interested in spreading the word about this and much more. I know that this is a bit of a stretch but we believe that with your help and teamwork anything is possible.

I have also been trying to get some collabs done as well but this can wait after the first week or two of April to begin them again if any interested based on some of her icebreaker questions to get to know you and your condition and spreading awareness that way and then also if brave enough to share your story more about this in a documentary format style video. You can view her channel here: https://www.youtube.com/channel/UCWKw1HpNsu_EyAhhEJrayyw…

The videos that she has created are in this playlist which you can watch here: 
https://www.youtube.com/playlist…

She has also just recently put her website she wishes to get done on hold unless anyone is willing to assist with this and as a return you can get a shoutout on her channel and word of thanks via through her Patreon page to raise funds. Her site for what she has been using as a blog page to become a website is: https://lifeofanaspieweb.wordpress.com/

My store she has just created and is now live is www.spreadshirt.com/life-of-an-aspie. Feel free to check it out to show your support. I have also just created a few other items that people may wish to have in their collection for either my branding or even just a form of Autism Awareness which you will see when you do visit the above link.

Another support is my patreon page as mentioned to raise funds and there should be something for anyone at any cost. Show some support by visiting and sharing most of these links to others visit it at: https://www.patreon.com/AspieAnswers

Other places that you can reach her is: 
Discord:Mini_Aspie #4666
Facebook:AspieAnswers
Twitter: @aspieanswers
Instagram: @aspieanswers

Thanks for your time and feel to reach out to me for any more questions or would like to assist me! Also, I will be sharing more of this via on my live videos as well on my social medias later tonight or tomorrow as well as on my channel for this and other videos too. Do keep an eye out on this and also spread the word to others!

Let’s make my dream a reality!

The Need for More Autistic Advocates in the Autism Community

Why we need more autistic advocates?

We need to change people’s perspectives and ideas of what Autistic People really are or how they do things in their everyday life that can really make people angry or misunderstand us as a whole!
(Image: GEEKCLUBBOOKS.COM)

Everyday is a struggle for many of us autistics as well as our fellow peers that are going through something of their everyday mental health problems or just something
that they need to try and fight the fight. We are therefore lacking in some parts of the world people who can advocate for others that are in dire need.
It’s a shame really when you look at this as something need to be done yet sometimes there are reasons to why people doesn’t want to help each other nowadays as
the world or mostly people are there for themselves and not others.

Just recently I heard about the hype for a movie that is called, “Please Stand By”.
It is about an autistic young woman living in California. I won’t give any spoilers in case you have or haven’t watched it as for myself.
I have heard good things about this movie but it got me thinking about why advocacy is so necessary.
Attitudes toward the autistic woman were very much that she had no capability to live
independently and little to add to the world but as the film unfolds it becomes clear that the young woman is highly talented and resourceful. I was impressed to hear about a female that is portraying Autism of what her everyday life is like as an Autistic. Don’t get me wrong.
There need to be more showing of female roles that acts as autistics as there is a long way to go for doing so. As we know that there are many male roles that has been portraying Autism.
Not trying to sound biased or sexist here far from it. Just speaking my thoughts or in this
case writing down my thoughts on this topic.
I’m not sure of the disability politics of the filmmaker but I will hope to watch the movie trailer or something and share my thoughts and reactions to the movie. TBA. One person, mentioned that it had Applied Behaviour Analysis
which were very hard for them to watch. Yet, there will be varying opinions on this topic alone which I may talk about or write later. When the film finished I said to my move night visitors
‘I need to write a blog post about this.’

In fact my blog post is a bit broader than the film in itself. I am not a movie reviewer! No, far from it. I am your normal everyday Autistic/Mental health creator sharing her thoughts and experiences based on some important topics that hasn’t been shared before or may have but thought to share my very own insights as well as a little bit of my experiences. Take them or leave them. Yet, this is how I see and feel the world differently to others and am sure that many of my fellow Autistics in the community may agree.
The thing which struck me the most about the film after someone shared with me briefly trying not to giveaway too much about what it is all about from start to finish is that it demonstrated quite well why advocacy is so important.

The film showed this through:

Highlighting that many people view autistic people as incompetent and like perennial children
There are ‘therapies’ for autistic kids which essentially mirror training a dog. This needs to stop. Why does it need to stop? Because we are still humans and that
how it depicits about us Autistics that we are almost like nothing to others. That this is demeaning us to who and what we are as Autistics and to some of the
Autistics in what we may stand up for into what we believe in.
Autistic people often have so much to offer the world but this is not noticed or understood by many people due to some lack of knowledge and understanding of what
autism is and how the people who has Autism really function on a day to day basis. As I shared before, I can’t stress it enough that every autistic you
meet will be different.
There is still a view that autistic people have no feelings or empathy.That folks ISN’T ALWAYS TRUE. Many autistics do feel more deeper than others
and that they take on a lot more from others too. This viewpoint about us with no empathy towards others also has to stop.



Image: GEEKCLUBBOOKS.COM) This says it all about us Autistics. Once, you’ve meet an Autistic, you’ll be amazed to what they can share with you. NEVER ASSUME THAT WE HAVE NO OR LACK OF EMPATHY WHATSOEVER.

In terms of the ‘real’ world, I have been advocating and educating others on YouTube since 2013. Things have certainly changed since
then boy has it ever and it’s really daunting and disgusting after hearing to what other
fellow autistics go through on the daily and that they don’t get heard. Even if they did try to speak out they get slammed down from either their peers or just the Neurotypicals but there are still things which really need attention.
I myself – and presumably other autistic speakers – used to only be viewed as a token or the ‘colour and light’ when I have now had the courage to speak with the help of the Social Media along with networking with other Autistics but now there is a
growing knowledge that autistic people are the experts in autistic experience (I know hey, who would have thought??!). There are autistic-led organisations like Yellow Ladybugs and the I CAN Network doing great work in empowering autistic young people along with maybe a few more that I can’t think of right now but just to name a few.
Autistic viewpoints are often featured in the news media and not only as ‘human interest’. I see these developments as good things.

However, there are many areas where things require significant work. These areas include:

Employment.

We are mournfully underrepresented in employment numbers and in Australia they are almost six times more likely
to be unemployed than the general population. Less than 10 per cent of New Zealanders who have been diagnosed with autism are in full-time employment –
but a new programme hopes to change that. She estimated there could be about 80,000 New Zealanders on the autism spectrum who were looking for work.

The figures were in line with international research which found about 2 per cent of the population had an autism diagnosis
but only about 20 per cent of those people were in full-time employment. Yet, there is hope for us NZ Autistics as there’s something that may assist us. I will
discuss and write more to what I said/wrote later but back to this at hand. Reasoning behind this is not usually because we are unskilled
or unemployable but due to a range of factors some structural and others related to the attitudes of individual employers and there being a load of unwritten rules at work that we do not understand or notice. This means our skills and talents may be overlooked and employment can be difficult or impossible when in fact this does
not need to be the case.

Education.

We have far lower education attainment levels than the general population. Our children often leave school due to bullying or other
issues and simply never go back due to alot of reasons as fear of rejection, fear of getting
bullied again and so much more. Higher education can also be a fraught place for autistics. While schools seem to be getting a bit better at
inclusion there is still a long, long way to go to address these issues.
Some autism organisations have what I term legacy thinking, meaning that they once had a good message but now have outlived their usefulness.
These are often the organisations who have no autistic representatives on their board or who promote ‘awareness’ events which are exclusionary
such as ‘light it up blue.’ Which I won’t discuss here the reason as that again can be saved for another video or blog post.
Organisations supporting autistic people really do need to be genuinely inclusive themselves.

Healthcare:

Accessing healthcare is a real utter nightmare for many autistic people and families. Health settings such as hospitals can be terrifying and exclusionary
and medical professionals can be ignorant or even arrogant about autism and do more harm than good. I’ve heard so many stories
from other autistics in the autistic community to how they are treated when in hospital etc. It is so bad that many of us elect to not access
treatment even when we need it. At the very least, training for medical and psychiatric staff needs to include some autism training as
part of accreditation and qualifications.

Gender diversity and sexuality:

Gender diversity and sexuality are a significant consideration for many autistic people. However, attitudes around sexuality and gender
diversity can be stuck in the dark ages a lot of the time, especially for Disabled people. Some believe that we are all cis gendered
and asexual or heterosexual or whatever sexuality that they chose to become. This goes across all the items listed here –
in employment, education, healthcare etc. There needs to be much more
advocacy and understanding in this space to ensure young people grow up safe and autistic people are seen as who we are in terms of our whole identity,
whatever that may be.
Wider society has a lot to learn about autism and autistic experiences. Sensationalist pieces in news media and stereotypical autistic characters
on TV do nothing to help. We need more representation of autistic experience and also autistic characters in TV dramas who are not white cis gendered
heterosexual middle class men. Attitudes around disability and other differences need to be improved on a societal level too.
That’s adds up to a lot of advocacy needed! Thankfully there are now quite a lot of us working on these things. When I started, there were a handful of us in Australia and in other parts of the world but at this point in time there are so many autistic advocates and activists and also some genuine allies
coming from a place of respect and listening, supporting this work in supporting others as well as including others in the group or niche.

Neurotribes author and someone I consider a very awesome human being, Steve Silberman, described the Neurodiversity movement as
‘the civil rights movement of our time’. I like this analogy. I think drawing parallels to civil rights is a useful way of looking
at the way forward. I absolutely long for the day that I will not be needed as an advocate along with many other Autistics that has raised their hand up
to spend their time helping others because we will have achieved all we need to.
It is important to understand though that nothing is set in stone. This stuff is all up for grabs, making it so important to advocate and
be a strong presence fighting ableism and discrimination. We don’t know the future but we can help to shape it.

  • Applied Behaviour Analysis (ABA) is a ‘therapy’ for autism that is discredited by many and
    has been known to result in post-traumatic stress for some of those it was used on. Based in a rewards and punishments model,
    it seems more concerned about making children look somehow ‘less autistic’ than actually supporting their development.

Behaviour training focuses on making kids stop stimming and often forces eye contact. We definitely do not condone ABA in the Autistic Community whatsoever.
We as autistics should be able to be able to be ourselves and be able to stim etc. After all, we are still people not animals!