by Simon Huebner
In or Out? Autism Speaks and everyone else can’t make up their minds.
I’d rather not repeat myself on my site but Asperger is an obstacle course . I already recorded a podcast about groups such as Autism Speaks and the Autistic Self-Advocacy Network. I’m not going to imitate what feels like everyone else who seems hung up on each public move Autism Speaks makes when I know I have a job to do which takes long hours in addition to all kinds of interests, places I’d like to go, and people I hope to chat with on my show.
A family friend recently told me one of the greatest challenges his youngest daughter, diagnosed PDD-NOS, faces is how to navigate the separate worlds of her friends who are diagnosed as high-functioning and those who are diagnosed as needing more special assistance. When I started learning about the relevant issues facing autism/Asperger’s on my own, I felt the same way. I can remember an occasional classmate who could have used assistance and a support system like I had. And the more I look around, the most visible faces around these issues don’t look like they know what they are talking about especially when they use blanket terms. They’re not alone; even I struggle to define what Asperger’s is when people ask me. The largest autism nonprofit organization, Autism Speaks, gives me the impression that they see everyone diagnosed with autistic anything is broken and disabled. This article published a while back by The Daily Beast discusses their claims based on their mission as well as criticizes them (finally) for spreading scare tactics.
The fact is, Autism Speaks’ board was founded by and is comprised of powerful VIPs. Their war chest and influence gives them a massive advantage in the reach of their footprint over any other advocates or therapists dealing with autism spectrum disorders. Browsing over their bios on the websites, I think it’s safe to guess they each have incomes larger than anything I can imagine unless I become an executive somewhere down the road. Now, I was never a deprived child by any definition, but the greatest asset I or any other kid could have is people who spoke to them like intelligent beings. My parents and grampa were able to afford the therapies I received when I was little, long before Autism Speaks formed and grew its way into the public consciousness like the virus they see low-functioning kids as. Between sensory integration/speech therapy, occupational therapy, physical therapy as a kid, and looking at what others are doing/not doing for their kids, I can forget more than a lot of people are ever going to know about which therapies are most effective, and I’m an expert about the right culture to put around a kid struggling with a world who perceives the world is a more intense (intense-world link) place that it actually is.
My philosophy about Asperger’s is simple: it’s an obstacle course, not a disability. Muscular dystrophy, ALS, or cerebral palsy are disabilities, and if you know someone who has a similar problem, it’ll give you a different perspective. More and more, I feel an increasing amount of resentment towards anyone who implies that Asperger’s is a disability, or that we’re all stock characters (TV tropes). Having a throwing arm like a heat-seeking missile that sometimes forgets to seek heat is a better comparison. It’s not the throwing arm that needs work, it’s stuff like muscle memory, aim, and footwork that you should look at. I keep saying that people like me aren’t broken but many times it feels like I’m talking to myself. It’s hard to know who’s out there listening, or who is motivated enough to claim their place in a world that can crush their spirits.
We need as many poster boys and girls as we can get.
I will always feel something that’s hard to pigeonhole. Many observers who know me well enough can also tell that I have a few more quirks than most people they interact with regularly. But many parents with kids in the autism boat might not even include Asperger’s or even high-functioning autism. For example, Allison Singer, who once served as the vice president of fundraising for Autism Speaks, walked away from her job and started the Autism Science Foundation, had this quote when comparing her daughter to Ari Ne’eman, who started a nonprofit called the Autisic Self-Advocacy Network as a college student:
“I think when Ari [Ne’eman] talks about autism and I talk about autism, we’re talking about people with different clusters of autism. I know he doesn’t like the word ‘cure.’ If my daughter could function the way Ari could, I would consider her cured,” says Singer. “I have to believe my daughter doesn’t want to be spending time peeling skin off her arm.”
I work, I write, I have other fulfilling ways of filling my spare time such as traveling. According to Ms. Singer’s definition, she’d consider me cured even though I still fend off foggy and confused states. All parents really want is to be able to take one step back at a time so that their kids can handle more and more responsibility. It took me longer than it should have to see that parents worth their salt are on the same page as me and others capable of standing up for themselves. At one time, I felt that everyone was scrutinizing my every move instead of letting me be. As for Ms. Singer’s daughter, I assume that children who do repeated actions like that see more than I did as a kid, and they’re trying to see what happens once they get their head into performing any action. And I mean any action, more that can be imagined.
She also said in this same article criticizing Autism Speaks based on her own experiences:
Her departure was precipitated by her decision as an IACC [Edit: Interagency Autism Committee] member to vote against more funding for studies on vaccine safety. “We had a disagreement about scientific research,” Singer tells The Daily Beast. “[Autism Speaks] felt in their heart vaccines were the cause, despite dozens of studies. When you start talking about what you believe and not what data shows, you’re talking about religion and not science.”
I’d rather talk to someone who believes the Earth is flat than someone opposed to vaccines, which are a public health concern above all else. Just know that thimerosal, the active ingredient in these vaccines, was first approved by the FDA back when my mom’s parents were in elementary school and my dad’s family didn’t know a lick of English (trying to find a link). If you want to talk about activities people shouldn’t do at certain ages, television and electronic screens have been shown to underdevelop children’s brains, inhibiting their ability to paint a complete picture in their head than if they play outside or read regularly (need a link for this one). If Autism Speaks, or any entertainment personality, implored everyone to turn off their TVs, I would be impressed.
Now before you think Ms. Singer is a hero for walking away from Autism Speaks, you should know about her part in the documentary “Autism Every Day,”…where she said she considered driving off the George Washington Bridge with her autistic daughter in the car as she sat in the same room during this clip but decided against it because of her other daughter who isn’t autistic.
As for a voice interviewed that proudly affiliates with Autism Speaks, Stuart Spielman, their senior policy adviser, said, “We believe the IACC to be broadly represented and serve the diverse community. I’d like to answer the question that way.”
Autism Speaks claims they want to unite the autism community as one strong voice as quoted from their mission statement, but that sounds like Mr. Spielman is deferring to the IACC. This is a copout, especially considering the fact that if you’re reading this, you’ve heard of Autism Speaks but likely not the IACC. I hadn’t even heard of them until I read this article, which referenced that particular government agency.
Mr. Spielman also stated, “I have a 20-year-old son who has an intellectual disability in addition to his autism. He can’t speak, and he can’t really take care of himself. He sleeps in a diaper,” he explains. “If you buy into this argument [about cure], I want my son eradicated. That’s crazy. I don’t think there’s a fundamental opposition to looking at autism as having tremendous gifts and at the same time recognizing people with autism, including my son, have tremendous challenges.”
Again, I assume Mr. Spielman’s son sees more than Ms. Singer’s daughter, who sees far more than I ever did and for whatever reason doesn’t screen out unnecessary sensations. You’d have to ask my mom to make sure, but I’m pretty sure I learned all this when I was tiny. When Autism Speaks talks about a cure, what it sounds like to me is that those particular parents don’t want their child to act so quirky, and to have every chance to stand on their own feet as much as other kids without the unique quirks that make parents wonder not only if they can take them out in public, but also maybe follow in their parents’ footsteps as they work in high-powered settings with high-powered social groups. For any faults I had as a kid, ask my parents and their social circle (royal bagel link from Atlanta Sidestreets) if I behaved myself in public. If Mom or Dad ever complained, at least they kept it away from me.
I’d be worse about letting Autism Speaks into my head if not for a lesson I learned when I was eight. Back in the third grade, several classmates trash-talked each other, and eventually, they tried to get a reaction out of me.
Anyway, a girl who sat right by me piped up and said, “Uch. Just ignore them.”
She moved away the next year. I doubt she remembers this moment, but it’s one of the best pieces of advice I ever received. You can replay moments in your head, and guess what you could do differently, but to learn how to cope and shrug things off, the last tip I recommend is letting someone live in your head without paying rent. (link to reconciliation)
I’ve already written down how I feel about most awareness campaigns, especially about autism. I won’t ask for anyone’s sympathy. I’ve recorded a podcast criticizing Autism Speaks and other public figures who make appearances to throw pity parties, talking about what an awful challenge autism is, blaming everything around their situation for the way my and others’ brains are wired. No matter how many autism traits their kids project, it looks like they want to lump me in with someone who shows dozens upon dozens more autistic characteristics than I did. As a matter of fact, there are 2000 possible combinations of autistic traits (link needed). I know that anytime you define yourself as part of a group, you are only as good as your weakest member, but if we’re going to play that game, my mom and dad are the franchise players as far as parents are concerned, the captains of an abysmal team who can’t cover the flaws of all their sorry teammates.
Now that I’ve put my thoughts in writing, I’ve said all I have to say. I’m not a cow; I’m not chewing my cud any more times. Especially when I’m pondering where I should go from here instead of getting stuck and letting these people, who wouldn’t be able to make up their minds about me, in my head. If you want to take poison and hope someone else gets sick, be my guest. Just include me out. I have bigger fish to fry.