One point where I think we are in strong agreement: no behavior is unmotivated. I have had a number of frustrating experiences where I've brought my son to the hospital when he was in distress and struggled to get them to take it seriously. In one example, after I made a big fuss, they finally took an abdominal x-ray and realized he was severely constipated. It's heartbreaking because he had no way to communicate that other than hurting himself, and to think about how long he must have been in pain.
The thing that is unique to my son's situation, and it really core to him, is his struggle with communication. It's not just that he can't articulate things, there's some more fundamental blocker for him. He has a talker (for those that aren't familiar, an iPad with special software that displays picture icons). He's a whiz at navigating to familiar things he wants, like asking for potato chips, but he struggles with more abstract concepts like how to say he's uncomfortable. We've spent a lot of time working on body parts with him, and he's pretty good at it, but it doesn't seem to occur to him to use it to talk about what is happening for him.
I know how frustrated I can feel when I'm trying to communicate with someone and they just aren't getting it, but I can't fathom how terrifying it must be for him to have nobody understand him. And, I would assert that you probably can't either. So, while you may have some perspective and ability to speak about aspects of my son's experience, I would respectfully submit, there are many things that you cannot know or speak for him about. And while I can't say what it is like for him, I can share our experience, and advocate for him the best I can.
I'd also say I don't think we are completely misaligned. I agree that the current ways people talk about this are not ideal, and are doing harm to a lot of people. But I think we need to find a balance between being more accepting of neurodiversity while letting people like my son have the dignity to get the care they need. I don't have the answer yet, I'm afraid. But I'm encouraged by this discussion.
I used the phrase in quotes to indicate that I also think it is not a great description. I will try to elaborate below.
> non-Autistic people shouldn't be given unilateral leave to talk over and in place of Autistic people, but that's exactly what you're doing.
Can you clarify what you mean? Are you referring to my use of that phrase, or something else? This statement feels like it leaves no room for me to make any comment on Autism, but I don't think that is what you mean.
> I see you saying that you can't possibly advocate for your son's needs without using that phrase
I don't think that's what I said. Your description of "current support needs" in particular is one that I'm having trouble reconciling. Specifically, you wrote "acknowledges that sometimes we do need support, acknowledges that our support needs can be variable, and doesn’t define us or our autism in a deficit-centered way."
My son needs 24-7 support, and will for the rest of his life. His highest functioning day still makes him incapable of self care. He cannot use the bathroom himself or tell someone he has a stomach ache. And I don't say all of this because I don't believe in his potential, or as someone who hasn't been and doesn't continue to do everything possible to help him find ways of communicating. But, at his age of almost 15 years old there are realities that I have to accept and plan for. I guess I'm saying, I feel the phrase "high support need," which technically true, doesn't really accurately convey what needs to be in place for him, and tends to group him with a lot of other people who have very different needs from him.
> All I'm asking is that you take the time to listen to Autistic adults, as well.
I don't know any other way to say this without sounding patronizing, but listening is not the same as agreeing. I did read your article, there is a lot I agree with, and I appreciate you sharing your perspective, but I respectfully disagree with this point. I think minimizing my son's level of need is harmful to him.
For some context: there is an unfortunate phenomenon where discussions between parents of autistic children and adult autistics tend to turn very acrimonious. I am a parent of a child with, for lack of a better term, "severe" autism, but I hope I can provide a respectful viewpoint.
One of the thoughts that gives me the most anxiety is who will take care of my son when I'm gone. Who will make sure his needs are being met and that he's not being abused, or hurting himself. The unfortunate reality is that services for people like my son are desperately missing. It's very easy for politicians to cut funding for services even as the need for them quickly grows. It's discriminatory.
As a parent, I feel a deep responsibility to advocate for increasing these services, for doing everything I can to hold the decision makers to account. And so I will unapologetically fight for my son until my last breath. And I also understand and care about the need to be respectful. But the reality is that, the careful language advocated for here is at odds with trying to clearly convey how dire the situation is for people like my son to people who don't have experience in this area. Also, these public forums often devolve into infighting, muddying the message even more.