I’m going to apologize ahead of time, because I know this is probably going to sound disjointed. I hope it make sense in the end.
Also, quick definition time. Allistic = not autistic. Please don’t confuse this with neurotypical/NT, which means non-neurodivergent at all. Some common neurodivergences that aren’t autism are depression, bipolar, ADHD, borderline personality disorder. If it’s in the DSM, it’s probably a neurodivergence. Allistic is specific to the autism community and is an easy way to say not autistic.
I have been an active part of the autism community online for four years if you count my time as a parent, and about a year and a half if you count my time as an autistic person. I keep hearing a few phrases that bother me, and I need to explore them here. They are the following:
“We all want the same things”, “we are on the same side”, “we all want what’s best for our kids” and “but my kid isn’t like you.”
If you say any of these phrases as a way to assert your role as a parent of an autistic person as equally important as an autistic person, well, to put it mildly, this raises my hackles.
“We all want the same things” makes me believe that you don’t listen to autistics often, even if you interact with us. Also, we do not all want the same things. Even among autistic people, there is a difference. But saying parents want the same thing as autistic people is ridiculous. Many parents want a cure. Many parents want easier ways to deal with us, to make their lives easier. Many parents want us to behave in a less autistic way. Many parents want to forever infantilize autistic people through guardianship and institutionalizing. Not some, not most, not all. But many.
“We all want what’s best for our kids” is something I hear a lot. That is a matter of perspective, because what an allistic parent wants for their kids may not be what’s best. There are all sorts of ideas about what is important for an autistic child, but rarely do parents consult autistic adults. Instead, they talk to teachers and therapists and pediatricians. Where are autistic voices in that?
Another thing I’ve seen is “this infighting is terrible!” It isn’t infighting when allistics fight against autistics. While not the same form of oppression, it is like a parent of an LGBT+ person claiming they have as much of a voice in the LGBT+ community as the LGBT+ person themselves. In what other group besides developmentally disabled people is this acceptable? It is infighting when autistic people fight against each other. And it is terrible when an autistic person is telling you how they feel about x, y, z autism topic and you shut them down, and “not my child” them. It is demeaning for you to shut down the argument of an adult autistic because you assume they are “too high functioning” to count or that your child could never be like that. What you see when you interact with me online is very different from what you’d see if you spoke with me in person. In addition, I will be turning 32 early this year. I am a much different person than I was at 7, 17, and even 27. I have grown up, and I’ve adapted.
Not every person you encounter who is on the spectrum will resemble your child. This is, in part, specifically if your child is nonverbal, you will see autism through your eyes, not theirs. If your child were to encounter someone who is autistic, yes, even an adult, they may see “wow, this person is like me, and maybe because they exist and they’ve been through what I have, I might be able to do those things, too.” Despite your protestations to the contrary, they may see a bit of themselves in me. You never know.
I may not be like your child. I do not neatly fit into your low or high functioning categories, nor into many of your other stereotypes regarding autistic people (which seem to change by the hour, the more is understood about autism). Your ideas about who I am is based on your own idea of autism. I’ve had people diminish my struggles and say they didn’t think I was really autistic (because I’m not Rain Man, I guess?) until I was slamming my palms over my ears, rocking and crying because someone decided to play a maraca next to my ear. And even then, they didn’t immediately think “autism” when that happened.
I’ve never read a story about someone like me, except through the blogs of other autistic people. Even those books that address people who are like me tend to forget that LGBT+ autistics exist, that POC autistics exist, that intellectually disabled autistics exist, and so do gifted autistics. There are autistics who always look autistic, and those who can pass for allistic/NT. I fall somewhere in the middle, where people see me as odd/weird, but because their ideas about autism are skewed, they don’t think “autistic” until after I tell them, and maybe not even then.
The point is, we are all different. Assuming we must all fit some ever changing stereotype of what it is to
be considered “autistic enough” to comment on autism-related topics and if we aren’t (according to outsiders), then it’s acceptable for parents to speak over us, to tell us we don’t count is ridiculous, insulting and invalidating.