It’s become pretty clear to me that there is another dichotomy in the autism community, and that I have to talk about it: the high-functioning autistics vs. the parents. This split is as lethal as the melting ground in a volcanic eruption. I am not talking about it to piss people off, though. I’m writing about this because I am sad about Nat and this question is like a moldy lump inside me that needs to get some light. I do not want to hurt people by saying this stuff out loud but I have to talk about this.
I have many friends in both worlds, needless to say. This is a passionate community where friendships are forged from the deepest of despairs: the idea that something is wrong with your child. For the parents, having a child with autism means lifelong worry.
That statement alone is enough to inflame many autistics, however. So many of the high-functioning and Asperger’s group feel that autism is not the problem. Autism is a different way of being, of perceiving. If the autistic person is given the right supports, therapies, and education, and a chance to succeed, then there is no problem. The problem, to the autistics (I’m generalizing for simplicty’s sake), is with society. Society does not fund autism interventions or therapies nearly the way it should. Society discriminates, by insisting there only be one standard, one way of showing intelligence — mostly through being verbal. Society (going by what the media reflects) insists that people focus on what the majority focuses on — love, friendship, career, health, attractiveness, popularity. But these may not be what autistics focus on. If an autistic’s very perception is different from a neurotypical (NT) person’s, then by definition the autistic will be excluded, discriminated against, thought of as inferior.
If you can’t do what the majority can do, you are different. Different is usually not liked. Again, I’m not saying I feel this way, I am trying to reason out what I think happens out there. Different is usually disliked. The deeper the difference, the deeper the int0lerance. The more resentment. And yet we as a country legislate compassion — and rightly so — with programs like Medicaid, Welfare; we legislate fairness with Affirmative Action, and the Americans With Disabilities Act. And so, because we legislate and fund help for the different, the different then have a chance to become less so. But what happens when they do?
Should autistics be trained to some degree to lose their appearance of autism in the name of having a “better” life — or would their lives be better without the attitude that different is bad? The divide is whether you believe that autism is an inherently good or bad thing. The divide is about who can speak for whom. Should a parent push their autistic child to be as NT as possible (suppress stims, learn to speak) in order to live a better life? (“Better” meaning more like the mainstream, or at least more independent of others’ help) How far is too far? We all agree that we should do no harm. But how do we define harm? Many parents feel that you should do everything you possibly can to mitigate the autism: education, speech therapy, SI, behavior mod, biomed interventions. And many high-functioning autistics feel that if you do this with the underlying assumption that autism is something to be rid of, you are abusing the child because you are giving him the message that he is inferior. Because autism, to many autistics, is a part of them, and not a bad part. To the parents, the autism, the autistic behavior, these are problems that should be fixed to whatever degree possible, because they are getting in the child’s way of a better life.
The divide is about not knowing where the truth lies, if there is even a universal truth.
My truth is pretty much only about Nat. My need — the purpose of this post — is to admit that I don’t know what he knows, and that is a huge source of pain for me. If I see him sitting around doing nothing except move from to chair to chair throughout the day, I feel bad. I look at him in his fullness and his clear, complicated eyes and I ask myself, “What kind of life is that?” Yet to give him a chain of activities, even to have him choose between a few, feels like I’m forcing an agenda on him. The choices don’t usually make him smile, but is that because he doesn’t know to smile, doesn’t smile socially, or because he truly is not happy about the choices?
Many high-functioning autistics and Aspies will tell me to presume competence. Assume that Nat understands pretty much everything around him, everything he hears, but he does not communicate that. He chooses not to, or he cannot. Either way, assume that he is at roughly a 22 year-old’s level of comprehension. Remember those who suddenly speak at 30 and say, “Don’t treat me like a child.”
But the parents experience their child differently from this. Or I should say, I do. Only sometimes can I see that Nat is understanding what is being said. Many other times that is not at all clear. Ned says I read meaning into what Nat does, that I project. Ned’s attitude is — to simplify it a bit unfairly — work with what we got, work with what we see, make the best of that. Don’t make shit up.
But I often feel that I am intuiting what Nat feels and connecting with him and enabling him to do more and grow. My attitude is more like: what if Nat does know close to everything that is going on around him; then shouldn’t I be treating him as if he has Asperger’s, and taking him to Aspergers Association of New England meetings, to Autistic Self Advocacy Network meetings? Talking to him all the time, the same way I talk to Max?
But what if he needs a slower, more simplistic way of talking? If I presume competence, I may end up talking over his head and excluding him!
I think that the more negatively you see autism, the less you can believe that there is someone there. In effect, you experience him as less, as different, as not fully able.
Or is it that the more you hate the autism, the more motivated you are to build the child’s strengths and make him more successful — and perhaps “less “autistic?