It took too long, but recently I had an epiphany.
It came when I was on the website for autism’s new-kid-on-the-block, the National Council on Severe Autism. Its title is self-explanatory.
It’s also depressing, because it shows how the autism world has become so divided that we even need a site to address specifically the needs of severe autism.
But we do.
I know that many autistic people want to live as independently as possible. I’m all for it.
But the problem has become the “as possible” part.
Here’s where some people will get mighty annoyed, but my epiphany is this:
Many in the high-functioning autism community are no more aware of what “severe autism” is than are typical, non-autistic people.
“Autism Awareness” has been uneven, with different autisms described by different people and organizations. Many people — neurotypical and autistic alike — see only the miraculous recovery stories or tales about the high-functioning world.
But here’s the big Catch 22: Those who can self-advocate mistakenly believe they are speaking for all, including those who cannot – the severely autistic. And loved ones and caretakers must take care of the needs they can’t — massive, lifelong needs.
Does anyone think this is what parents like us want? I am constantly pushing my son to expand his abilities as much as possible. But I am aware of his needs beyond what he can take care of. If many of the ideas and demands put forth by the high functioning autism community were adopted across the board, it would be tragic for people like my son, Ben.
Twenty five years old and living in a group home (aka “congregate care,” an obscenity to many in the high functioning autism community), Ben is doing well.
His mother and I are his advocates. I could go on (and on and on) describing Ben in detail, painting a picture of why he can’t make many decisions about his own life or live independently. But I’ve already written plenty about him and us (google my name and “autism” if interested, or just look around this blog), and these days, as opposed to twenty years ago when I started, there are countless scribes and bloggers doing the same. (Autism Daddy, for example, is among my favorites.)
The National Council of Severe Autism (NCSA) is a desperately needed organization dedicated to “Pursuing recognition, policy and solutions for the surging population of individuals, families and caregivers affected by severe forms of autism and related disorders.”
Not surprisingly, the brickbats are already out. The autism newsletter, Spectrum, just published an article about the NCSA, quoting several people from the high functioning autism community.
About the kind of residence Ben is in: “The danger of such housing…is that autistic people will be segregated and lose the autonomy to make decisions about their lives, from what they eat to when they socialize.”
In Ben’s case, and for the guys he lives with, this is absurd. Ben’s needs, wishes and desires, to the extent that he can articulate them, are addressed with commitment and conviction by a dedicated, caring staff. His foods are his favorites. He socializes all he wants, which is very little when it comes to his fellow residents. He enjoys his relationships with staff, and interacts with them all the time.
He can never be in the house alone or be out of sight for any length of time. Left on his own, Ben, literally, would not survive. This fact is not subtle if you spend ten minutes with him. And I mean in his house. Go into the community, and it’ll take about three seconds, beginning with crossing the street.
But far from segregated, Ben is well known in both of his communities — his campus is one community within a larger community. I’ve lost track the number of times we’ve been somewhere with him and a stranger, a bagger, a cashier, a burger-flipper will say, “Hi Ben.” Half Price Books, Walgreens, Five Guys, even just walking down the street in another part of the neighborhood. We’ve had people recognize him while we’re in the car and wave as we cruise by.
High functioning people are out there in public, visible, interacting, in school, at jobs, on TV. The severely autistic are much less visible. When you do see them, they, like Ben, are with caregivers of some kind. They are not by themselves, and you are less likely to interact with them than you would “typical” people.
The high functioning autism community believes they are advocating for choice, that living “independently” offers you choices otherwise unavailable. But the big irony is — what about the choice a person makes to live in whatever kind of setting is best for them? Yes, that choice might ultimately be made, or at least signed off on, by guardians, and that is by necessity. We are driven by practical reality and need. Not dogma.
Actually, Ben does self-advocate. “Go to McDonald’s” is one way. “”No walk” when he doesn’t want to get out of the car for a stroll, is another. This is his autonomy. We are always eager to hear what he wants, and what he is thinking.
High-functioning autistic people are experts when it comes to high-function autism. Not surprisingly, the general public assumes that they always know best for anyone labeled autistic.
In many cases, they don’t. And like it or not, when it comes to Ben, we do.
I strongly believe that this, perhaps paradoxically, is because very few high-functioning autistic people have ever known someone like Ben, or have had any significant, first-hand experience with the severely autistic.
But, I have devised a way to address this problem.
It’s cheap. It requires no insurance. It seeks no government funding. It needs no review of research methodology.
It is one simple, even obvious thing that I am asking every member of the high functioning autistic community to do:
SPEND SOME QUALITY TIME WITH A SEVERELY AUTISTIC PERSON.
Then get back to me.
