Autism is autism. Autism is a spectrum. Even though Asperger’s/”high functioning” autism/ASD1 is different than “Classic” autism/ASD3 it is still different shades of the same thing. It seems strange that I would have to specify that. However there is a commonly held belief among a portion of the Autism Community (that being the neurotypical/allistic/non-autistic parents of autistic kids) that insist that Asperger’s should never have been included with Autism in the newest DSM. They say it is not the same thing at all, and that a currently communicating, self advocating autistic can not say at all what it is like to be autistic in a way that applies to their non-verbal child. This is what I refer to as The Great Divide. As a mother of both ASD level 1 boys and an ASD level 3, minimally communicative child, I find this idea completely false. I am living with examples of both ends of the spectrum and I am telling you: it is the same thing.
I have seen just a few examples of this online. It was heavy-handily implied in In A Different Key, which is a recommendation against the idea rather than for it. The sad and frustrating thing about this idea that one is not like the other is that parents of children who can not communicate their experiences are ignoring the words of like people who can communicate. And as a result they are missing out on really helpful information.
If my child were deaf, that would be out of my experience. I could guess and imagine what’s going on with my kid, but until we’re good at signing to each other, I’m going to be somewhat in the dark. The best person who could explain to me what my child is experiencing would be a deaf adult who can read lips or write and communicate with me. * That’s just common sense to me, and if I did have a child who could not hear I would be seeking the advice of those like her. So why is it so controversial or rejected to do the same thing with autistic adults? Or another example: who is best to tell me, a woman, what it is like growing up as a male: a man, or the mother of boys?
I’ve been in the World of Autism for two years now and The Great Divide is causing a gulf between the Autistic Community and the Autism Community. The Autistic Community is autistic adults; self advocates who have developed a culture and community based on a shared neurotype and common experiences. The Autism Community is the neurotypical(NT)/allistic/non-autistic parents of autistic kids. There is overlap as you can be both, and I have joined facebook groups in both and am privy to things being said by each camp. But that’s just it: they’re in two separate camps. The Autistic self advocates have been dismissed and rejected and told, “you’re too high functioning to understand.” So they have understandably retreated to safe, autistic only spaces online. NT parents with newly diagnosed kids are being trained in an echo chamber by the parents who drove the actual autistics out.
Autistic adults advocate both for themselves and for other autistics. They embrace neurodiversity positivity and reject the idea that they are defective or broken people that need to be “cured” of their autism. NT parents need to seek out the blogs and vlogs and opinions of the neurodiverse so they can have access to vital information. But as long as some parent insist autism is a disease that needs to be cured, a damaged brain that has stolen away their “real” child, or curse out something that is integral to their child’s personality while insisting they love their child and just hate autism, that divide that that doesn’t have to be there will remain. Be the change. Listen to neruodiverse voices. If you don’t agree, that’s okay, but don’t silence the autistic voices.
*Edited to add: When I wrote this I did not think of the hard of hearing and the rest of the spectrum of deafness. The blogger of Subtly Autistic wrote a response pointing this out in a blog post linked here, and I am very grateful that they did.