The roadmap that didn’t exist in the first place.

Standard

When your child is born, you don’t have any idea what she’s going to grow up to be like. Sure, if you’re fanatically controlling enough, you might have some idea of what you want to force her to be like (I knew kids whose parents insisted they would be doctors, that’s the sort of thing I mean) but you don’t really know. You don’t know what her strengths or weaknesses are going to be. And that’s, basically, okay. Most parents are fine with finding that out, they know the approximate time schedule on which they’re likely to find out, and so forth.

When the child is autistic, that somehow changes. What does not change is that parents don’t know who their child is going to be. What does change is that they often suddenly think they know, and they think they know early, what their child will and will not be able to do. Being from an ableist society (and therefore almost undoubtedly displaying more than a little of this ableism themselves), they proceed to freak out, equating inability to do certain things with inability to live a happy enough or worthwhile enough life.

But back to those assumptions on what children will and will not be able to do.

First off, the uncertainty of what even an ordinary child will and will not be able to do, is rarely acknowledged as fully as it should be. Children do not come with specifications saying what they’ll be good at. They also don’t come with warranties or guarantees as to the fact that they will always be as good at things as they are now. They could get hit over the head, contract a disease, lose a limb, and so forth, and suddenly be unable to do things that most people can do (or most people can do at some point in their lives, at any rate). This is rarely acknowledged, though, and when it is, it’s seen as really too unpleasant to think about. Disability is so thoroughly equated with something unspeakably bad in life that most people don’t like to think about the fact that nearly everyone on the planet will be disabled at some point, including their own children.

But back to autistic children, for whom the opposite mis-estimate of our abilities is common. Not only can’t people tell what their autistic children might be able to do in the future, it’s been my observation that most people are unable to tell what their autistic child can do right now. And minus the roadmap of a schedule, a lot of people get disoriented and imagine something that they think would be the worst.

So then they get freaked out and start plugging away at trying to shove as many skills into their autistic child as possible, thinking this might cause the autistic child to somehow beat what they see as the odds, and live what they see as a better life. (All of this is on a very individual level, since our society views disability as an individual thing rather than being the product of an interaction of certain individuals with a heavily biased society.)

I think I must be a fairly prototypical example of why that approach doesn’t work very well.

I have had a lot of people try to shove a lot of skills into me for a lot of reasons. What they got, was short-term performance, if anything. After an hour, a day, a week, a year, or even several years, this performance inevitably broke down. It was the equivalent of running marathons on a daily basis, it simply could not be sustained even by someone who was used to it.

I at times very much wanted to earn the rewards (this includes the rewards offered to non-disabled children as well as the less standard ones offered to disabled children in return for certain behavior) but simply could no longer force my brain to do something that it couldn’t really do or understand in the first place. Many of the things I was doing were things I had little to no understanding of, I just knew bad things happened if you didn’t do them, and good things happened if you did. And most of the things I was doing were ill-suited to my brain and totally unsustainable.

Of course, when an autistic person can no longer sustain the unsustainable, this gets called regression, a term that itself exemplifies the “forward forward forward must always be moving forward and we damn sure know which way forward is” mentality that many non-autistic people get into around autistic people.

But, in all this, hold on a minute.

There was a lot of information I processed on my own, a lot of stuff I learned without knowing I was learning it, a lot of background information that was getting stored and people in all their effort to foreground all the wrong ways of doing and learning things, were trampling all over my ability to access.

Most of this stuff has come to light in adulthood, and I don’t think it’s totally a coincidence that a lot of this has come along with avoiding “skills training programs” (and anything resembling them, including school) and having plenty of exposure to other autistic people in natural (non-institutional) settings.

The things I have become able to do in adulthood are extremely varied. I have more understanding of my environment, including my body. I have more ability to do various things, including things that I was horrible at as a child. I have things like lasting friendships that I never really had before. And, as I pointed out, I can blow my nose now.

I learn on a different wavelength than most people. You put the information into me, you let it sit there in the back of my head somewhere, and it eventually sorts itself out. This takes time. Sometimes it takes a lot of time. Sometimes everyone is very impatient and wants to take shortcuts.

Have you ever tried to take a route that looks shorter, but ended up with so many obstacles in the way that you had to turn around and take another route that in the end took twice as long as your original route would have to take? That’s what these shortcuts people try to impose are like. They may look good to some people in the short run, but in the long run, they are the very long way around. You can succeed in pushing someone to do something well beyond their capacity, but eventually they’re going to crack under the strain and you’re going to have to work with their actual (rather than imagined) capacities.

I can see why the way so many autistic people do learn is not very popular. There’s no quick results. There’s no snazzy teaching style with a cool-sounding name or acronym. There’s no money to be made in this. There’s no nifty theories backed up by bizarre notions about our development having got off-track at some point and needing to be pushed back on track. And there’s not even an illusory guarantee of normalcy at the end. In short, there’s nothing in this learning style for money-makers to capitalize upon or parents to feel like they’re doing something doing something doing something doing something doing something “for their child”.

Plus, it’s slow. You won’t have your imagined timetable for development, we may even learn things in a totally different order than you expect (my brother was even seen at a developmental disabilities clinic for “going through the stages of development in the wrong order”). You have a child who’s quite possibly going to be learning, in adulthood, things that non-autistic babies know when they’re born, and you’re not going to be able to speed up that process.

But it’s also notable that we do often learn these things in adulthood, provided we’re not prevented from doing so. (Self-fulfilling prophecies can be really interesting things.) And provided we do these things at our own rate.

I’m sure someone’s going to come along and say, “She’s anti-intervention, she’s for doing nothing, etc.” in response to this. I have another post coming about which parts of that are and are not true.

Whether or not we acquire certain skills does not determine our happiness. Otherwise I would be much more unhappy about who I am, and some people I know who fit a much more “functional” stereotype would be much more happy about who they are.

But regardless of whether these skills are tied to happiness, childhood estimates of our skills are not only inaccurate but ridiculously so given the amount of time we spend learning these things in adulthood, and the fact that we are synchronized to a totally different rhythm (of learning and nearly everything else) than the rest of the world. I’m currently going through a period of a lot of things “clicking” that had never “clicked” before (some of which “click” for most people at a very young age), and it’s becoming apparent to me yet again that all the forced-training in the world can’t override my natural learning style, and that common estimates of what we will become like in terms of skills are out of touch with reality.

(I now have a very bad toothache, so I’m going to follow up on this in other posts later after I can think again.)

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

8 responses »

  1. I remember a conversation I had with a friend of mine whose son was recently diagnosed with autism. She was talking about how maybe he would be a garbage man now and joking about it. I told her she couldn’t tell WHAT he would grow to be at 3 years old. Even a “normal” kid can grow to be a grabage man. And who cares!
    Sure, I wonder where my boys will be as adults. But I know I can’t force them into any image I may have of them. The only thing I can do, is find the best way for them to healthy and happy. That’s all you can do for any kid.

  2. My brother couldn’t even get a job as a garbage man when he applied, too much competition. Actually todays garbage man requires a fair amount of technical knowlege including health and safety legislation.

  3. For us, the best reason for realising that my son is autistic when he was only 2, was so we could have some early intervention…on us, his parents!
    I learned to observe him better and figure out his sensory preferences. I learned to drastically reduce the amount of spoken language I used when interacting with him, instead of talking ‘at’ him, and not giving him time to process things.
    My husband worries about his future though, whereas I’m optimistic that he’ll find his niche and get along fine with whatever help he may need.

  4. I figure my son will be “fine” for some value of “fine” as an adult.

    I have no idea what that value will be. I’m looking forward to finding out.

  5. I was glad to find out from [http://www.kevinleitch.co.uk/wp/home.php] who you are, having devoured your “gettingthetruthout.org” and planning to show it to my students.

    If it’s not too personal a question, I am curious about how you got them (whoever “them” was) to teach you how to read and type, or did you teach yourself, and at what age this happened. I keep thinking, if you had not managed to get that to happen, what insights would the world be missing out on, and what self-expression you would be missing out on as well. Please excuse if you have already written about this somewhere in your blog (but if I could get the link?). I have only found this blog today and have only read about 4 or 5 posts/articles so far.

  6. Reading and typing were both mostly self-taught, but I was also raised in an environment where self-teaching those things was possible, and had the motor skills to handle that.

    It is not easy for me to give an exact age on assorted communication-related questions, because of the complexity of what communication entails and the fact that I learned it piecemeal and forgot and relearned several things over and over again, as well as at times having appearances of some things that were not real. It certainly was not as simple as learning all the different things necessary to reliable word-based communication all at once and having them come together immediately. I once wrote a 10-page paper on that (and yes, I consider some of the information in it private, so only a few people have seen it) that still didn’t fully capture the complexity of it, so I’ll just leave it at the fact that it was an incredibly complex process.

    I will say though that exposure to a wide variety of autistic people was crucial in many stages of that.

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