From reactions ranging from “You don’t look autistic.” and “How are you able to use a computer if you’re autistic?”, to abuse and insistence on trying to find a “cure” for autism, autistic people go through a lot of ableism in society, mainly because of ignorance caused by stereotypes propagated in popular media and the lack of information and awareness about Autism Spectrum Disorder. Autism is not an illness or a disease, it’s not “curable”, and it shouldn’t be treated as such. There is no definitive autism experience or “way” of being autistic, as autism affects each of us in different ways.
Autism is one of the three widely recognized disorders of Autism Spectrum Disorder (ASD) – the others being Asperger Syndrome and PDD-NOS. ASD is a neurodevelopmental disorder that affects communication, motor coordination, sensory processing and intellectual ability, and these can affect each autistic person differently. This means that the autistic brain is differently developed from birth, and autism is just a different way of seeing the world around us. We live in an ableist society, and autism is disabling due to the fact that society is not designed to include autistic people.
It’s very important to remember that autism is a spectrum disorder, and many autistic people find the terms “high-functioning” and “low-functioning” offensive since the manifestations of ASD vary hugely. For example, an autistic person might have problems with communication, but not have their sensory processing affected too much. There are cases of people with ASD who only found out about their autism when they were adults. Due to misinformation, many people believe ASD can be caused by vaccines, or even food, when it’s actually caused by genetics.
Why is trying to find a cure for autism a bad thing? As was said before, autism is a neurodevelopmental disorder which has an influence on someone’s entire life. Society tends to invalidate this idea by believing that autism is a single bad element, a disease, and that it’s “impossible” for someone to live normally while being autistic. ASD does affect the personalities of most autistic people – the way they think and the way they live – but that’s not a bad thing. The daily lives of autistic people are fundamentally different because of autism, and by trying to remove autism, you are trying to remove autistic people. And not only that, but also the fact that the majority of autistic people don’t want a cure, is being ignored; ASD can be hard sometimes, but many autistic people simply wouldn’t want it to be gone.
In this process of trying to find a cure for autism, many autistic people are abused and subjected to harmful treatments for their autism: awful things ranging from shock therapy to bleach enemas. In the light of the ableism in our society, many organizations claim to help raise the voice of those who have disorders. Autism Speaks, a North American organization, is one of them. Many people might automatically think of them as an organization that puts a lot of effort into research and “helping” autistic people, but these assumptions are challenged when you examine how they are actually involved with autistic people.
Autism Speaks only had an autistic person as a board member once. His name was John Elder Robinson, and he resigned from his position in 2013. You can read about his experience in his blog. Their board otherwise consists of the parents of autistic people, including the founder of SafeMinds, an organization that has contributed to the anti-vaccination movement, and a board member who used to be a member of Cure Autism Now. The organization spends only 3% of the money it raises, into helping autistic people and their families. This help can come in various forms, and not all of it has the goal of actually helping people with autism.
While some of it is aimed at funding the development of communication devices for autistic kids and teenagers (which would definitely prove beneficial), much of the money is used to provide Applied Behaviour Analysis (ABA) therapy, an intervention that many people in the autism community oppose. Autism Speaks also say that they’re “[d]edicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism.” and that they “[…] take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle.”
The problems in this statement are manifold. They say they aim to find a cure for autism, but don’t actually involve autistic people in this process or asking autistic people for feedback. It is wrong to state that autism is an “urgent, global health crisis” and that there are “missing pieces of the puzzle”, when many autistic people have said, countless times, that we’re not broken, autism is not a puzzle, and that we do not have missing pieces. Among the organisations that Autism Speaks are connected to is the Judge Rotenberg Center, an institute that routinely uses shock therapy on autistic people. The end of this article has some useful links for those interested in learning more about these issues.
Autistic people also live in a society with racial and gender biases and stereotypes, and they too suffer from the effects. Even doctors can be biased in their diagnosis; this is one reason that ASD is less often diagnosed in girls and people of color. We need to change the way we think about ASD, stop spreading misinformation about it and raise awareness of its nature. Not that we can stop there – society still needs to hear people with ASD speak about the things we’re put through and the ableism and abuse many of us face. It’s time for people to truly understand what being autistic means, and to leave behind stereotypes like the idea that there’s only “one way” to be autistic. Autistic people need to be heard too. We are not broken.
Learn more about it: “What is autism?”: http://www.autismacceptancemonth.com/wp-content/uploads/2014/03/AAM-What-Is-Autism.pdf
Autism Speaks “masterpost”/information: http://goldenheartedrose.tumblr.com/post/89338501188/autism-speaks-masterpost-new-updated-6-20-14
Autism resources/information: http://neurowonderful.tumblr.com/autismmasterpost
A simple presentation on ASD: http://shit-in-the-autism-tag.tumblr.com/post/115901864877/i-made-a-presentation-about-asd-the-whole-thing
Autism Speaks: http://en.wikipedia.org/wiki/Autism_Speaks
Autism Speaks and the Judge Rotenberg Center: http://www.autistichoya.com/2013/11/an-unholy-alliance-autism-speaks-and.html