No, I'm not "Severely" Disabled. And?
This entire debate gets frustrating. The parents of "classic" autistic children meeting me today cannot imagine that my parents endured the same emotional (and financial) stresses as their families. They don't realize I'm the result of 40+ years of interventions that continue to this day.
At birth, I was labeled mentally retarded and was non-vocal (not even crying). For months I didn't crawl or move about. I have engaged in, and still do under stress, what are perceived as self-injurious behaviors. I don't intend to hurt myself, but I have bruised my legs pounding my fists against them, for example.
I've been called a "shining Aspie" and I still don't get it. I don't have Asperger's and was never diagnosed with AS. I view that label as something of an attempt to "downplay" my experiences or my value as a researcher with autism.
No, not every child can make the progress I have. I think that is an essential, honest admission. Some parents, in fact most with severely impaired children (and I don't have a better way to express that, sorry) will not be able to see their sons or daughters off to college. They might not see their children move out and live either alone or with a companion. They worry, as mine still do, that there won't be a safety net for their children as adults.
To me, that's the line. Severe autism is when there is little to no realistic opportunity for self or companion-assisted independence. (I know I'm not independent, financially or otherwise, but I have a companion who helps me succeed apart from my parents. My wife and mother both joke that I'm as independent as most men. Maybe that's true. I'd have to ask my father.)
Severe is when the person forgets medical appointments, basic hygiene, and daily routines. It is when there must be someone externally helping with daily tasks.
Mild or high-functioning? I believe that is where I am. I might never be "normal" but I know and admit that I am fortunate to be able to write and communicate with some skill. I know I am rarely unable to take action for myself, even if that action is asking for assistance.
I understand the parents of "low-functioning" children are sick of hearing from "Aspies" and the "neuro-diversity" movement. They want people to remember their children, too.
Of course, we do remember their children. We know many, far too many, children with severe autism will not have great opportunities. We know care and supports are lacking. But don't take it out on potential allies! I agree with you that it is difficult to raise a child with special needs.
My mother and father dealt with more than I will ever appreciate. I know it was hard, because I can see and hear that even today when my parents remember the medical appointments, the physical therapy, the teacher conferences.
People "like me" are not trying to change what autism is. We are not trying to claim autism for ourselves, as if autism can be "owned" by some group of activists.
Your child deserves as much as we can provide as a society, maybe more. Don't think for one moment I any other "high-functioning" person with "mild" impairments doesn't want much better for your child than we had in the not-so-distant past. We do want better for everyone.
There's a lot of rage out there, sometimes. That's a shame.