I’m always grumbling or making a form of a rant about how so many people still don’t really understand it, so World Autism Awareness Week – April 2-9 – can only be a good thing, right? In my honest opinion, well, sort of and not quite. Any raising of public awareness is a good thing when it comes to Autism Spectrum Condition, so long as there are no ulterior motives behind us or that is offered to us and it’s just about helping people learn about the condition and how to support those with it.
But then there’s Autism Speaks. Yes, I know that I will get a lot of people attacking me on this yet hear me out as we all have heard of this nasty organisation for a reason. And that is? Before sharing more of this I did share my views about Autism Speaks to why Autistics don’t wish to hear about it and you can watch the video here called: Aspie Let’s Talk- Why WE SHOULDN’T support autism speaks- https://www.youtube.com/watch?v=MOdgoXz3pkg
Now, back to my opinion on this topic at hand of their ‘Light It Up Blue’ campaign as this has been so successful in the United States that it’s now pretty much ubiquitous – even major landmarks such as Niagara Falls and the White House have been known to ‘Light up blue’. The campaign has gathered momentum in the UK recently and I regularly see people posting supportive ‘I’m lighting it up blue for Autism’ memes across social media. The United Nations designated April 2 World Autism Awareness Day dated back in 2007. And the world certainly needs more awareness of autism-related issues – if nothing else, only 16% of people diagnosed as autistic in the UK are in full time employment, 10% of those people who are diagnosed as autistic in New Zealand are in full time employment, and that seriously needs to change. A much higher percentage are more than capable of working, but they simply don’t get the opportunities afforded to those we describe as ‘neurotypical’ (someone with a non-autistic brain). In the UK, World Autism Awareness Week is organised by the National Autistic Society, which has been working on behalf of autistic people and their needs since 1962. Light It Up Blue was founded in 2010 and marketed so aggressively – and successfully – that many people now assume it to be the obvious campaign to support. Most people do so in the genuine belief that they are helping autistic people. The White House has lit up blue. However, Autism Speaks are an ‘Autism advocacy organisation’ who offer a wide range of therapies, interventions and treatments for autistic children. Which is where the issues start to creep in. Up until 2016, Autism Speaks openly worked towards finding a ‘Cure’ for autism, despite the autistic community regularly explaining why trying to ‘cure’ an inherent condition was offensive. According to a video they produced – which has since been withdrawn by the organisation themselves but copies of which can still be found online – having an autistic child meant the end of your life as you know it. A sample from a transcript of the video: I am autism.
(Link to this you can watch here: https://www.youtube.com/watch?v=9UgLnWJFGHQ)
This is what is stated in the video as you watch this. Be warned that this may cause some triggers to some Autistics that doesn’t believe in all of what is shared here.
I’m visible in your children, but if I can help it, I am invisible to you until it’s too late. I know where you live. And this: I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?
Autism doesn’t rob either myself anyone that is diagnosed of their dreams – if anything, it makes our dreams more vivid, brilliant and ridiculously wonderful. Autism cannot be ‘Cured’ – it is a difference in the wiring of the brain and is permanently built into our genetic makeup.
What Autism Speaks offers is training to coax your child into ‘behaving acceptably’, in much the same way one would train a dog. Applied Behaviour Analysis is the most common therapy offered by organisations such as Autism Speaks. Again, many Autistics that I’ve spoken to doesn’t believe in this therapy/treatment that is supposed to be had for their own reasons. (I will share more later in my piece)
Their ‘100 Day Treatment Kit’ states: Treatment for autism is usually a very intensive, comprehensive undertaking that involves the child’s entire family and a team of professionals […] The recommended number of hours of structured intervention ranges from 25 to 40 hours per week during the preschool period […] ABA methods use the following three step process to teach: An antecedent, which is a verbal or physical stimulus such as a command or request. This may come from the environment or from another person or be internal to the subject; A resulting behavior, which is the subject’s (or in this case, the child’s) response or lack of response to the antecedent; A consequence, which depends on the behavior, can include positive reinforcement of the desired behavior or no reaction for incorrect responses. ABA therapy is less popular in the UK, but does have its supporters. However, as an autistic person I find it incredibly offensive that we should be required to undergo training in order to ‘fit in’ to the world – this article brilliantly explains why in more detail than I have space for here. We are not broken and we do not need to learn how to fit into your world. It is our world as well and we have every right to inhabit it just as we are. You can find endless comments from those in the autistic community, explaining how and why they disagree with the methods employed by Autism Speaks and why they’d prefer people to stop ‘lighting it up blue’:
The fabulous @NeuroRebel who I’ve been following and watching some of her videos has put out this very informative vlog, which explains just how autism can become very big business. After much campaigning and complaints on social media, Autism Speaks have actually brought two autistic people onto their board. Professor Stephen Shore is, among other things, the author of Understanding Autism for Dummies and Valerie Paradiz is an author who was herself diagnosed as autistic at the age of forty. However, this is still only two autistic people out of twenty board members, not including the founders and a ‘Director Emeritus’. That’s twenty four people, only two of whom are truly qualified to speak on behalf of autistic people. Despite Autism Speaks claiming to have withdrawn talk of ‘curing’ autism from their website, I downloaded some of their information resources while researching this feature and found the following quotes within their ‘Treating Autism’ section: Most parents would welcome a cure for their child or a therapy that would alleviate all of the symptoms and challenges that make life difficult. Is There a Cure? Is recovery possible? You may have heard about children who have recovered from autism. Although, this is so relatively rare, it is estimated that approximately 10% of children lose their diagnosis of autism. Life can be difficult whether or not a person has Autism Spectrum Disorder. No child is perfect and a child with autism does not need a ‘Cure’. Autism Speaks are savvy enough to acknowledge that there isn’t a ‘one size fits all’ treatment for autism – so they offer several. Before, I write further as you read this that the term of Autism Spectrum Disorder has been removed by some people as some people may call it Autism Spectrum, or just Autism Spectrum Condition as to not to offend anyone that are diagnosed with Autism.
Even if you are one of the ‘Lucky’ parents whose child ‘loses’ their Autism Spectrum Condition diagnosis, that will only be because they have been forced into adapting their behaviour in order to appear neurotypical. But however well you train them to hide it, they will still be autistic. The suggestion that autism is something that can be ‘recovered’ from is offensive. Most people never lose their Autism Spectrum Condition diagnosis for the simple reason that autism is part of us – it cannot just disappear. Autism is as much a part of me as my grey eyes – they can be temporarily disguised, but they’ll always be green underneath. We do not need a cure – because autism is not a disease. I can’t be the first autistic person to wonder whether this is heading into eugenics territory, in much the same way as those considered at risk of having children with Down’s syndrome have had to consider.
Oh, and one last note to end and make you think more about what I am sharing right now– the ‘Blue’ element of the campaign comes from the outdated belief that autism is a ‘male brain’ condition, a theory that has now been widely disproves.
More and more girls and women are now being diagnosed as autistic, largely due to research into how autism ‘presents’ differently in females. For all these reasons, I will never ‘Light It Up Blue’. If you want to show your support for autism awareness, that’s great! You can ‘Light It Up Gold’ with Autism Acceptance Month.