Thanks for the measured response, I hear where you're coming from.

> Can you clarify what you mean?

I can try. When I say that non-Autistic people shouldn't speak over Autistic people I am referring to decades of behavior. Everyone from doctors to caregivers to parents make assumptions about what Autism is and what Autistic people need, but it's so infrequent to have those assumptions validated by other Autistic people.

Let me give you an example. In Doctor Gupta's CNN special about Autism and Marijuana he shows extensive footage of a teenage Autistic girl hitting herself and screaming while in a car. To any Autistic person watching it's obvious that this girl is in extreme distress, that she's hitting herself for _some reason_ because it's somehow better than the experience of not hitting herself.

That's what I mean when I say that no behavior is unmotivated.

When Doctor Gupta interviewed a distinguished scholar of neurology about this girl, he actually asked "Do we know WHY she's hitting herself?" and the answer that he received was a few seconds of confused silence followed a mumbled comment about "rigid and repetitive behavior".

Nothing about distress. Nothing about sensory needs. No suspicion that something is causing her to need to express or stimulate herself in that manner.

If he had chosen to interview an Autistic adult -- even a "high functioning" Autistic adult, like me -- that conversation would have gone very differently. We would have gotten into the ways that non-speaking Autistic people communicate, the ways that environmental factors that would seem harmless to NT folks can be traumatic for Autistic people, and the ways that many perfectly healthy Autistic adults learn and engage in less-harmful forms of self-harm in healthy ways to help regulate themselves.

So in that one example, do you see why choosing to interview the NT "autism expert" was a poor choice? Do you see how it perpetuated stereotypes of Autistic people in distress as "that's just Autism"? Do you see how it treated the girl as an object, instead of as a subject?

When you made your original comment here, choosing to use the phrase "severe autism" without interrogating or even acknowledging the arguments I made about that phrase, it made me feel the same way I felt when watching that interview.

It's not necessarily that you're wrong, it's not that you have to agree with everything I say, it's not that your insights into your own kid's life aren't really valueable. It's that this turned into one more instance where an Autistic person did his absolute best to say "please don't use this phrase, it hurts us" and you went ahead and used it anyway. And that's what really bothered me, because it's the same as that doctor using the phrase "rigid and repetitive behavior". It terminates all inquiry and moves on.

And to see this comment voted near the top of the discussion, well, can you see why that's frustrating to someone like me?

> My son needs 24-7 support, and will for the rest of his life.

Many people with high support needs do. That's what "High Support Needs" means. I understand that to your ear it may not have the urgency of "severe autism", but can you at least acknowledge the many arguments I made as to why that phrase is not only harmful but inaccurate?

I don't know your son, I don't know what co-occurring conditions he has. I do know that there is probably a lot of insight to be offered from the Autistic community at large about how to deal with a lot of his challenges, and that's what I mean when I say listen to Autistic Adults, as well.

I'm not saying you have to agree with everything we say -- I'm saying we have a perspective that is deeply relevant to your situation, and if you're like most parents of Autistic kids you're not really benefiting from that perspective because too many of the interactions around this point become acrimonious, to your point.

I'd like to offer you one more bit of context that may help you to contextualize why that happens: a shit ton of us have massive CPTSD. We grew up raised by the best-intentioned parents who made a lot of mistakes because they didn't know any better, and we suffered for those mistakes.

Many of us in our adult lives have turned around and tried to talk to people like our parents, to offer our insights into things that may not be obvious to them. And that would be great -- except that often, when parents push back, they do so in a way that puts us right back into powerless childhood memories and triggers that horrible emotional flashback experience.

I think the real problem here is that people like you need WAY MORE HELP than you're able to get. I am here for you and WANT to help you, I want your kid to have the best life possible, I mean that with all my heart.

But when we come to try to offer that help we're often seen as scary, weird, angry and confusing. I get it, I really do -- and I can see why my reaction here, and calling your piece "disrespectful", may have added to that problematic stereotype. I'm doing my best to build bridges, but I'd be lying if I said that some of the comments on this thread didn't put me into a defensive state, so I'm sorry if I splashed any of that on you.

Does this help explain where I'm coming from?