“A group of ideological extremists is trying to rewrite not only the history, but also the fabric — the very DNA — of autism itself.”
An eminent autism advocate points out the counterfactual fantasies of Neurodiversity and asks the solemn majority to remain the voice of reason: “we will get our point across in the end”
By Thomas McKean
Over the weekend I went to my usual Sunday lunch with friends. This time one of them handed me an interview from the New York Times. This was an interview with autistic journalist Adam Garcia, regarding his book We’re Not Broken: Changing the Autism Conversation. From what I read of the interview (and the review here on NCSA), it is yet another book preaching the same old neurodiversity that has been going around for quite a few years.
On my way home, it dawned on me what’s really happening here. A group of ideological extremists is trying to rewrite not only the history, but also the fabric — the very DNA — of autism itself. This has been done before with other things, and many times. It happened with slavery, women in the work place, the deaf and hard of hearing, and people in wheelchairs, just to name a few. In each case, our society rethought these things and we are better for it.
So is what they are doing a bad thing?
In this case, I would argue that yes — yes it is a bad thing. I will tell you why.
In their eyes, they are doing the same as the people above, fighting for equal rights. And in all honesty, I do support them having those equal rights. The problem here is that by claiming they speak for every autistic everywhere (which they don’t), they are also saying the more severely affected don’t matter, that they are inconsequential. They are meaningless. They don’t exist.
I disagree.
What they are saying is, “Hey, we’re not disabled, we’re differentlyabled. And by the way, we speak for all of autism.”
People are hearing them and saying, “Okay. If you are merely differentlyabled, we can cut funding and programs for the autism community because they don’t need our help.”
Well, *I* need their help. And I know your kids certainly need it.
My friend Stephen Shore once famously said, “When you’ve met one person with autism, you’ve met one person with autism.” He’s right. That really is how different we all are. To not take that into consideration is not only negligent, it borders on the criminal. But that’s exactly what’s happening here. They are literally trying to change autism from a serious neurological disorder to a social justice situation.
Now I’m not saying there are no social justice aspects to autism, indeed there are. There would be no puzzle piece ribbon, Autism Awareness Month, or autism acceptance efforts otherwise. But for more people with autism, the much greater need is for treatment and lifespan services.
Another problem is these social justice autism warriors claim to speak for everyone with autism. And they do this without taking the more severely affected into consideration. Those who are not differentlyabled, but actually disabled. How can they not understand this? How can they believe they can speak for an entire population without permission, just because they said so?
One solution to this may be the DSM. Back when Asperger Syndrome was separate, these same people were proudly thumping their chests, boldly claiming they were “Aspie.” If we could somehow separate the higher and lower functioning again — which I firmly believe needs to be done for several reasons — it wouldn’t be as much of a problem. Your kids wouldn’t be as affected by the chicanery.
But since they are, what can be done about it?
I have always felt the best way to fight extremism (extremism of any kind) is with education. For example, anyone can say these guys are wrong, that isn’t enough. We also have to say why they’re wrong. In this case, the reason they’re wrong is because they are speaking for everyone with autism and there are people with autism who are more disabled than they are differentlyabled. Their lives and their needs are different. What they are proposing will be harmful (if not deadly) to these individuals. Also they are speaking for people with autism when a lot of them don’t have autism themselves. Or if they do, it is only because they said so. As an established and valid advocate, I have problems with that. I can prove my diagnosis. Anyone who claims to be a self advocate, especially if they charge for their services, needs to be prepared to do the same. (And no, it isn’t wrong to ask. Please never think that it is. If they want your money, feel free to ask them.)
So this is what I feel we need to do. We need to calmly, without the anger or rage we are obviously feeling (and which we have a right to feel), say not only are they a bit counterfactual, but also give the reasons why. And when we do this, we need to speak only for ourselves, not for others. We need to lead by example.
Let them continue to rage and attack as we remain the voice of reason. It will be slow going, but we will get our point across in the end.
Thomas McKean was diagnosed with autism in 1979 at the age of 14. As one of the original autism self-advocates he has served on the board of Autism Society of America, has written two books on autism, has spoken at numerous conferences, has done private consulting, and has even appeared on Oprah. He currently lives in Ohio with his sister, her husband, and their pomeranian. Learn more about Thomas at www.thomasamckean.com.
Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.