I’ve recently written this as a reply to two different blogs, so I’m going to try to turn it into a blog entry in itself, modifying it a bit in the process.
It’s not where the desire to change a child comes from, that makes it good or bad. Not on its own. It’s, even more, what you desire to change.
Non-autistic people seem to have better instincts for what to change, and what not to change, in non-autistic children. Not perfect instincts, as is obvious from looking at any parent/child combination you can think of, but certainly good ones.
When confronted with an autistic child, many non-autistic parents, or even autistic parents whose belief system has been formed by a predominantly non-autistic world, have no idea what to do. They have all the good intentions they would have with their non-autistic kids, but they have fewer instincts for how their autistic kids operate. They may not know what growth looks like in an autistic kid. They may know so little about what growth looks like in an autistic kid that they mistake it for something they call regression, and panic.
When autistic people talk about not wanting to be changed, we’re not talking about wanting to remain static and unchanging throughout time. I actually have to strain a fair bit not to consider it deliberate that so many people misinterpret us that way. It’s easier to say “Well of course you want to change people, all people change,” than to look at what we’re actually saying.
When we say we don’t want to change, we’re incorporating all four dimensions in life already. We’re incorporating growth through time into our concept of the thing we don’t want changed. We’re saying “We don’t want to be changed” in the same way that a cat, faced with becoming a dog, would say “I don’t want to be changed.” The cat isn’t denying the important passage from kittenhood to adulthood. The cat is saying I want to grow as a cat, not a dog.
When people say “But all people change,” they’re acting like we’re only talking three dimensions, leaving time out, an impossibility. And quite frequently when they say that they sneak in something about making us into dogs, only they call that part of the growth from kittenhood into adulthood. “Sure, learn about stalking mice and stuff, I’ll give you that, as compromise or something, but hey, wag your tail when you’re happy, not when you’re mad. That’s the right way after all. You can’t deny change. Didn’t I just talk about important skills of the adult dog… er… I mean cat?”
No, I’m not saying autistic people are a different species. But we do have a pattern of growth and learning that has enough distinctive elements that it needs consideration in its own right, the same as being a different species would. It goes deeper than either personality or culture, that’s for certain.
It’s only recently, though, that I’ve been able to figure out that it’s not entirely deliberate that so many non-autistic people can’t imagine us saying “We don’t want to change” without meaning “We want to stagnate.” The entire model for growth is not based on our kind of growth. My own brother used to tell me he was sent for a developmental evaluation because he went through the developmental stages “in the wrong order”. I was later poked and prodded for similar reasons. If they were such truly universal developmental stages, we’d all go through them in the same order. If developmental stages were based on some of my developmental stages, instead of the ones they’re based on now, most of the world would be regarded as severely perceptually regressive. Not that that would be any better, but I do retain skills that are important to my way of functioning but lost by most people in infancy if they ever had them.
Nonetheless, what we need is to be helped to grow in a very autistic way. We need the skills it takes to be autistic in this world, not the skills it takes to be non-autistic. Some of those skills will overlap with the skills non-autistic people need. Some will look the same but be accomplished by very different means. Some of the skills we need, and have, are ones that non-autistic people don’t have, or don’t have very much of, and some of those are essential to our ability to function. Unfortunately, given that we didn’t build the language, a lot of that last kind don’t have words as far as I know. But I’m sure many autistic people know exactly what I mean.
And since non-autistic people generally don’t know about this stuff, and for a whole lot of other reasons, we need exposure to a wide variety of autistic adults, I think. Not as stand-in staff/aides/special ed teachers/etc. While that’s a widespread practice among adult autistics, the training for this, if not careful, or even the setting, can impede the kind of learning that’s necessary in more than one way. But as people we know. A wide variety because all autistic people aren’t the same.
I learned more about myself and how to deal with the world in a few months from an autistic mentor, than I learned spending most of my childhood and adolescence being taken to various counselors and programs and institutions and so forth.
A word of warning about what I mean: the word “mentor” is overused and has been turned into something way more common than it is. It has even been misused in some places as another word for staff. I view any program, no matter who creates it, that claims to produce “mentors” for young autistic people or any other kind of people, as inherently suspect. (I won’t even get into the details of the guy who told me “My mentor’s mentor’s mentor was Aleister Crowley,” suffice to say I don’t mean that either.)
This kind of relationship, I think, cannot be planned or forced. I certainly consider myself lucky to have one such relationship in a lifetime. But she and I clicked and that can’t be forced or mandated. Autistic people who are not compatible in certain ways with each other being forced into that role can be horrid. I’ve been in too many situations where someone was being forced on me or someone incompatible who didn’t know it was trying to force themselves on me in that way, and even with the best of intentions that’s bad. The opportunity for things like that to develop naturally is important, and the opportunity is there more if we’re exposed to a lot of autistic adults.
And our parents also need exposure to a lot of autistic people, in a very non-pathologized way (not just “here’s the story of my life according to the DSM-IV” kind of things), because then our ways of growing won’t seem as disturbing or mysterious to many of them, and maybe they’ll be able to learn to distinguish cat-growth from dog-growth somewhere in the process. ;-)
There is not a lot of formula in this or anything else that I have said is a good idea. That’s for a reason. What is good for autistic people doesn’t follow a strict formula that can readily be explained. That last sentence can be, and often is, taken to mean “anything goes,” but that is not true either. A lot of things are bad for autistic people, and a lot of things are just not particularly good for autistic people. But what is good for us doesn’t fit a formula, and isn’t just an eclectic tailored hodge-podge of “therapies” either (there is nothing medical about learning and growing, just because we’re autistic doesn’t change that).
It’s hard, and elusive, to describe what it is, though. Many of the skills we need and regularly use to survive in the world have few English equivalents. The shape of how we do and don’t grow is not diagrammed out as it is for non-autistic children.
The majority of books on autism, even by experts, provide bizarre and improbable explanations of surface behaviors, and perhaps how to change them, and nothing more, often missing the most important elements of our lives altogether.
Even many books by autistic people involve us explaining ourselves in their terms. Some of the reason for this is that the official terms provide some of the only language we can find to describe ourselves, it can be hard to generate entirely new words for entirely new concepts on our own, or to filter out what other people do and don’t want to hear about, so many of us use the official versions even if we instincitvely know there’s something wrong with them. It’s rare that you find an autistic person who can describe these things without referring back to dubious concepts, and I certainly don’t find myself up to the task most of the time. This isn’t because we’re mysterious, it’s because we’re dealing with a language that has few reference points for our experiences. Even the aptly named paper You Don’t Have Words to Describe What I Experience shoves and force-fits our experiences into non-autistic boxes while trying not to.
Which, I suppose, is one of the reasons that the presence of autistic adults is invaluable, provided they’re not adults who regurgitate wholesale those force-fitted views of how we work or should work, provided they’re respected as people and not zoo exhibits or constant resources. People who understand how we do grow and can tell the difference between “cat-growth” and “dog-growth” and “something going wrong” really are important.
As an example, a quote from a Usenet post by an autistic adult:
When I first read this I could tell, without going back to check which child was whose, that your son was under six years old. I don’t want to denigrate the value of early intervention, which can give autistic children a valuable head start in learning to function in the world– provided, as always, that the intervention works with rather than against the child’s natural processes. But even with no intervention at all (as long as you didn’t put him into a sterile, mind-starving institution that wold cause environmental retardation in any child), he won’t spend the rest of his life doing that. Your comment is similar to a Martian parent who had accidentally been brought a human child (by a stork with confused navigation skills), and who, without learning about the normal course of development for humans, said, “I hope that someday my child will be cured of being human. I don’t want him to spend the rest of his life crawling around on the floor and eliminating in his clothes.” Your son will develop other interests as he gets older–maybe interests that will be more comprehensible to you and maybe interests that you’ll find equally bizarre, but other interests in any case.
That’s from this post by Jim Sinclair, years ago. Xe could tell what many non-autistic people are not familiar with, which is the typical ways in which autistic people develop over time. Xe understands “cat growth” (or “Earthling growth”, in that analogy) while everyone else is expecting “dog growth” or “Martian growth”. I find this all the time in conversation with non-autistic parents, who mean well but honestly believe that for instance no speech at the age of three means their child will never talk, when many autistic people learn speech between the ages of four and seven or even later.
It’s hard to explain these things, though, when we can so often perceive them, but other people are so often seemingly unable to perceive them at all. I suspect, in the end, it’s a lot like trying to explain non-autistic social nuances to autistic people.