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.
** note ** All comments are moderated so for the people who felt it necessary to reply with vulgar language or with threats – they will not appear. You are allowed to respectfully disagree, however personal attacks will not be tolerated.
We can’t all just get along because the organization running Light It Up Blue literally doesn’t think we should exist as people? And because autistic people say “This hurts and stigmatizes us,” and people reply “but I’m just doing it to start discussions!”
That organization once put a mother on camera to talk about how she considered driving her autistic daughter off the George Washington Bridge, and only didn’t because she also had a normal daughter…and has never apologized or retracted it.
One person deciding to learn more about autism doesn’t, in fact, balance out all the harm that Autism Speaks has done to us.
Like….that’s why.
So, no matter what awareness they have brought,the colour blue is out because they used it first? Rainbow is tricky as another group has a trademark on it. I agree that some of the directions that Autism Speaks has gone are horrific, I’ve heard the story of the George Washington Bridge before and the whole video was a fraud – the director said it was staged. I think that AS can be used in the way that it has used people with Autism – piggyback off their popularity and then steal their audience. It would serve them right if blue became the colour of acceptance.
The campaign “Light It Up Blue” and the use of the color blue to represent autism, is kind of inextricably linked to Autism Speaks.
I don’t know what you mean about the whole video being a fraud–like yes, a lot of it was staged and scripted, not spontaneous…because that’s how PSA’s are made. It doesn’t change what Allison Singer said or that Autism Speaks released that video as a representation of what autism does to families…
And like…when a lot of people who belong to a marginalized group say “this is a campaign that hurts us,” and people KEEP going “but but but! It doesn’t HAVE to mean that!” or “But it doesn’t mean that to me!” I just don’t know.
How hurt do we have to be for anyone to care enough to just stop doing it instead of finding some way to justify it?
The director admitted she spliced some of it together so that in some cases people didn’t say what they said they would. They weren’t told they were being filmed, people’s usual therapists were ordered not to show up for days before the shoot to make the child less compliant.
What about families and people with autism who like the LIUB campaign. Are you saying your opinion is worth more than theirs? There is a divergence of opinion on the topic. I know many people with autism who participate in wearing blue. Why is their desire less valid?
Okay, but Autism Speaks…who runs the LIUB campaign…is the entity who spliced together that video and released it to the public. You can’t make that not true.
Family members of autistic people–quite frankly, their opinion doesn’t count on this subject. I know that sounds harsh, but they are not the people being talked about this way. They are not the target of this campaign. Autistic people are. Not family members of autistic people.
Autistic people themselves who like LIUB–I haven’t actually heard from any. There might be some, and I would be curious to hear their reasoning. I HAVE interacted with some autistic people who either support Autism Speaks’s mission or try to ride the fence about it, but I tend to find their arguments bad and their self-worth scarily low.
I’ll be sure to tell my clients that they have low self worth. I’m sure they’ll love your judgement of them.
Nope, that’s not what I said. I haven’t interacted with any of your clients, that I know of. I said that that has been the tendency among autistic people I’ve spoken with who have supported Autism Speaks.
If you have clients who do support Autism Speaks or their campaigns, I would be interested to hear *their* reasoning.
You made generalizations about a group. How do you know someone’s self worth? I have clients who like to wear blue on April 2nd. By your logic it means they support AS. I disagree, as do they. One of them, who I talked to for the post said “People understand blue for autism, so I wear blue but I don’t want to be “cured””. He chooses to meet people where THEY ARE instead of where we want them to be and help them get to acceptance. I will support him in whatever he chooses.
Your client is entitled to his position, as an autistic person (who this campaign actually affects). I believe his logic is bad, however.
“They weren’t told they were being filmed, people’s usual therapists were ordered not to show up for days before the shoot to make the child less compliant.”
Also, that is a HORRIBLE thing to do to autistic kids. Like…you’re defending the ad campaign of an organization that DID that in order to make them look bad to people who saw the video.
What? Just…what? This is an org that you’re okay with running an awareness campaign?
They claim they didn’t know that until after and the director didn’t say they did – I can’t prove they knew about it. The director lost all credibility. I’m not okay with them running a campaign, I’m okay with coopting the colour and using it without them.