April 2nd is WAAD – which stands for either World Autism Awareness day or World Autism Acceptance Day depending on who you ask. My Facebook, Twitter, and RSS feeds were full of posts saying either “Light it up Blue” or “Don’t Light it up Blue, Walk in Red instead” or “wear rainbows for acceptance”. It seems there is a schism in the Autism community, and I’m here to plant myself firmly on the fence. I fully understand that Autism Speaks (who started the light it up blue campaign) has some very troubling policies / research interests. I do not agree with funding anti-vaccination research (particularly in the past 5 years when the link between vaccines and autism was already scientifically debunked). I strongly dislike how they portray autism as something deserving of our pity, and their characterization of people with autism as miserable or that having a child with autism leaves you living a “life of despair” as Autism Speaks co-founder Suzanne Wright wrote in 2013. It’s not okay that Autism Speaks doesn’t have anyone in the senior leadership of the organization who actually HAS autism. It’s tragic that the organization is so blinded by the negatives of having a child, friend, or loved one with autism that they cannot see some of the positives that autism can bring – such as a different way of looking at the world.
My biggest issue though, is that Autism Speaks sees autism as only a disability that needs to be “cured” instead of a part of what constitutes the identity of someone with autism. They spend a lot of money trying to cure something which, in my humble opinion, does not need to be cured. In my work, I strive to find ways to help the kids I work with live, thrive, and succeed in a world that is sometimes set up against them. I try to empower them to be able to be independent, to ask for help when necessary, and to gain the skills that are needed to be able to live a happy and productive life. I do not attempt to cure anyone. Nor do I think that all ‘autistic’ behaviours are something that need to be eradicated. When I discussed sensory issues in an earlier post, I did so because many sensory issues are a negative experience for the person who is dealing with them. I wanted to bring awareness to some of the sensory issues that people with autism and sensory processing disorder face, and give suggestions that can help those living with sensory issues have one less obstacle in their life.
All of that doesn’t mean I don’t think some good has come out of the awareness campaign that Autism Speaks started. If even one person has chosen to learn more about autism because of the light it up blue campaign, then I think it’s great. To all the people who say “we’ve had 10 years of awareness, people are aware of autism”, I’d like to respectfully disagree. In my experience, many people aren’t aware of autism beyond the word itself. They don’t understand it, and what isn’t understood is feared, or worse, made fun of. Yes, the light it up blue campaign was spearheaded by Autism Speaks and buying the official merchandise does help fund the organization. So I don’t buy the official merchandise. You can be in favour of awareness and acceptance without giving money to Autism Speaks. You can wear blue and not support Autism Speaks. You can choose to wear blue because it has become associated with autism awareness.
Which brings me to the other groups, the “walk in red for autism acceptance” and the “rainbows for acceptance” groups. I love that people want to move from awareness to acceptance. What I dislike, however, is the idea that it has to be one or the other. That you have to pick a side. I understand, acknowledge, and share many of the concerns that the Autism self-advocacy network have with Autism Speaks but I don’t think it is an all or nothing deal. Yes we need to move towards the acceptance of autism as part of the spectrum of neurodiversity. Yes we need to encourage people who haven’t had much contact with people who have autism to reach out and not judge. Yes acceptance is much more than just being aware, it is something you actually have to work at doing. But there is no reason that acceptance and awareness cannot coexist.
On April 2nd I wore a blue shirt with a sticker that said “ask me why I’m wearing blue”. It gave me the chance to talk about autism and raise real awareness about it. I also wore my red running shoes and a rainbow bracelet. Why? Because with all of this infighting in the autism community, I feel that we are losing sight of what really matters. We are spending so much time and energy fighting with each other when we should be a community, and united to fight those who would discriminate against people who have autism. The autism community is strongest when we band together and present a united front instead of multiple voices asking for the same things for different reasons. Let’s stop all the infighting and focus on what really matters – improving the quality of life for those who live with autism and those who care for and about them. If you want to donate your time and / or money, do some research and find a group that aligns with your beliefs – maybe a local chapter of the Autism Association, the Geneva Centre for Autism, or an organization like the Special Olympics. If you know a parent with a child who has autism, a friendly smile or an invite for coffee can go a long way too.
To me, this is what autism awareness and acceptance month is all about. This is my friend’s son Jacob. He loves Spiderman and building towers out of blocks. He likes playing in the ocean. He adores his siblings and dotes on the family cat. He also has autism, and while it does not define him, it does mean that he needs some extra help negotiating the world and that his parents needed some extra support so they they could understand him. Let’s not get so caught up in our own fights that we forget what is really important here: people.
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