Thanks Mykola,
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.
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.