I’ve been thinking about autism a lot lately, mainly because in the last few months I finally decided to give seeking an official diagnosis one last chance. It was a highly emotional process, one that alternately drained me and made me hyper for weeks, but I did finally receive a diagnosis of an autism spectrum disorder. Since receiving that report (which made me laugh in several places because these supposed oddities have been a normal part of my life forever), I’ve been trying to figure out what happens now. I have a paper to prove I’m autistic, but what do I do with it? Shove it in a drawer and move on? Frame it and hang it on the wall as evidence of my lifelong struggle to get an official diagnosis?
Within the last couple of weeks, I decided to put that diagnosis to good use. Up to now, I’ve never had any kind of credibility to write about autism or write autistic characters. I don’t have any kind of degree, I don’t work with people on the spectrum all the time, and even though I was self-diagnosed (and had several people agree with that self-diagnosis) that didn’t prove to anyone that I know what I’m talking about. Thanks to that official diagnosis, I now have the confidence to speak out about a topic that my family is probably sick of hearing me talk about: curing autism.
Warning! The remainder of this post is likely to anger some people. I apologize if you’re offended. Curing autism is a controversial topic with people on both sides of the issue feeling strongly about it. My views are not what the media tend to focus on, but they are shared by many other autistics. Feel free to comment at the end of the post whether you agree or disagree, but please keep your comments clean. Foul language or personal attacks will make me seriously consider deleting the comment.
Okay, back to the post.
As I’ve said, I am autistic. Autism is not a disease, scourge, or even a terrible tragedy in a lot of cases. Autism is a different way of life. Personally, I don’t want to be “cured” of autism, mainly because there’s nothing to cure. Autism is a huge part of who I am, what makes me…well, me. A lot of autistics feel the same way, including those who are high-functioning and live independently and those who are non-verbal and need someone to help with basic needs. We are not miserable because of autism. Actually, I find autism fun a lot of times because it allows me to see things in ways neurotypicals likely don’t.
Note I said “neurotypical” and not “normal.” Honestly, I detest comparisons between autistics and “normal” people, becuase it implies there’s something wrong with me. There’s nothing wrong with me; I’m not broken or in need of a cure. I’m different, plain and simple. Diversity is a great thing. It makes the world the exciting, interesting place it is. It’s also the way God designed it. Diversity in race, religion, creed, etc. is widely accepted and encouraged. Now the world needs to focus on and accept neurodiversity. My favorite way of describing autism is that my brain is wired funny. That’s really the only logical way I can describe a neurological difference, which is all autism is.
All of this explains why I get annoyed when people call for a cure for autism. The majority of those people are neurotypicals. Many of them have children on the spectrum or know someone who does. But I have to wonder how many of them have actually communicated with their child, either verbally or through some other means like a computer or sign language. Many autistics have spoken out, through writing and verbally, against curing autism. I have to agree with those who equate curing autism with a death sentence for autistics. The best way I can explain it is to offer an example.
As I’ve said, autism is a way of life and a huge part of who I am. Curing autism, taking it away, would turn my world upside down. It would be like “curing” a neurotypical of having a sense of humor or a left-handed person of being left-handed. It doesn’t make much sense, does it? So why do people persist in calling for an autism cure?
I can understand wanting to teach autistics how to cope better in the world and helping them live as independently as possible. I’m all for it. But that doesn’t “cure” autism. It just teaches them life skills…the same as every other child has to learn. The big issue here is acceptance. Do you accept autistics and all their differences or do you pity us for something the majority of us embrace?
This leads me to the “charitable” organization Autism Speaks. Let me say right here, Autism Speaks does NOT speak for me or any other autistic. Their literature, commercials, PSAs, etc. make it clear they don’t support autistics. They call for getting rid of autism, blame autism for marital problems, and basically imply that autism is a scourge on society. It gives me chills just thinking about the way they make it clear they hate autism. They don’t appear to like autistics much better. Watch the PSA they put out not long ago titled “I am Autism” and try to view it from the persepctive of an autistic, someone who views autism as inseparable from their identity. I think you’ll understand why that video made me cry and want to put a stop to the hate this organization is spreading. For another perspective on the “I am Autism” PSA, check out this video (also called “I am Autism”). There area remarkably few edits to the Autism Speaks script, which makes the Autism Speaks message all the more chilling.
Last year, Autism Speaks recieved more than sixty-five million dollars. The president of this supposedly charitable organization was paid over four hundred thousand dollars. The chief science officer was paid over half a million dollars. Those are ridiculous salaries for people working for a non-profit organization. Half a million dollars is definitely profitable. For a simple break down of where the 2008 money went, check out this video. If you prefer looking at detailed tax forms, here’s one on the Autism Speaks website.
As far as I can tell, very few actual autistics are helped by Autism Speaks or involved in running it. In fact, the organization was asked why there aren’t any autistics on the board. The response? Autism Speaks feels it would be “inappropriate” to have anyone on the spectrum helping run the organization.
How on earth is an autistic helping run an organization called Autism Speaks “inappropriate”?
This organization has also been known to sue or threaten to sue autistics who speak out against them or parody anything they produce. The saddest example of this I’ve come across to date is a 14-year-old girl on the spectrum who created a site called NT Speaks. It was a parody of the Autism Speaks site, and therefore perfectly legal since parodies are protected by law, but Autism Speaks sent a letter to this girl threatening to sue her. This letter scared her so much she took her site down and destroyed the code behind it. Autism Speaks had no legal leg to stand on, since what she’d done was legal, but that didn’t stop them from throwing their corporate weight around to scare a teenager.
It wouldn’t surprise me if I get a letter threatening to sue me for libel because of this post, but I feel it necessary to warn anyone who wants to help autistics that the autistic community is not helped by Autism Speaks. As a member of the autistic community, I actually feel rather threatened by this huge, frightening organization that claims to be speaking for us while doing us a great disservice by perpetuating myths about autsim.
There are a great many autistics writing about their experiences, opinions, etc. all over the internet. If you want a true view of autism from people who live it every single day of their lives, I’d recommend checking out Autistics.org, Aspies for Freedom, the Autism Self Advocacy Network, or any of the myriad blogs and personal websites maintained by autistics. Be warned, you may not like what you find, but you can be assured they’re the true views and opinions of real autistics.