Much of what I write is a direct result of things that are said on the Internet. That’s less true for things related to Autism, where non-Internet “real life” tends to “trump” things I see and hear online. This post is no exception.
I write this particular piece as a result of a conversation I had with what I assume was the parent of an Autistic boy at a “local hangout” my son and I frequent (The Wonder Place, by name).
We were coming to “closing time” for the facility in question, and I was performing my normal task of “calling time” for my son. There were a couple of parents around me, and one of them made the offhand comment that—essentially—“We’re all dreading those minutes’ expiration.” I commented back that Garrett was Autistic, and that it was very possible there would be a “full-on screaming and crying session” when the time arises because of his Autism.
The person making the original comment looked at me, unclear exactly how she ought to respond (not that there is a “stock response” that’s either desired or expected, mind you), but looking almost like, “poor you.”
The other person said something I have heard more and more over the course of time, “My charge (don’t recall whether she said ‘son’ or not) is Autistic as well.” As is often true in such circumstances, we talked a bit about Autism, its diagnosis and what it was like dealing with the specific individual with whom we each had to deal. As is pretty usually the case, we had some things in common, but probably as much not so as so.
Her charge had begun reading at a very early age, my son has yet to really begin to get letter recognition down (and was the same age or older). They both were prone to “meltdowns” when not given “fair” advanced warning on things that would be expected of them (and sometimes, even then). Both were not great socially, neither terrible, as far as I could tell. I would have guessed both to be somewhere in the “moderately Autistic” range, Garrett (my son) probably closer to severe (though probably on the “low side” of moderate, I.e., closer to mild than to severe).
The end of our conversation was a polite, “Have a good day, and good luck,” sort of thing.
As the place was closing though, she came up to me again and gave me a post card sized “advertisement” for an “Autism walk” of some sort. You know, one of those things to “raise awareness.” I politely informed her that I really don’t support such things—and the less where Autism is concerned than for many other purposes. She was polite, and didn’t take me for saying anything I wasn’t as far as I’m able to tell.
You see, I believe folks should be able to support such things just as much as not, so I have no problem with the idea that she was in support of such a thing. As for me, I have a different approach, which for the most part says I must do everything in my power to prepare Garrett for the World he will face, and as little as possible to insulate him from it. It is further my contention, that Autism is not some sort of “disease” to be cured, but a difference or set thereof that is or are to be dealt with. By this, I don’t mean that the person is to be “changed” in terms of who they are by nature.
Don’t get me wrong, I don’t think they should “stay the same” for ever and ever, but I don’t think desired changes should be a matter of the child’s Autism, so much as the expectations that society will place on that one as a person.
The difference may seem subtle, but the point is, the Autism itself is, in my humble opinion, not a “problem.” The resultant behaviors may be problematic, but not the Autism itself.
This, to me, shifts my perspective from one where folks are trying to “cure” the person, to one where they are working to help the individual to act in ways that allow him or her to be looked as as “in conformance with” society at large.
You may argue that, particularly among folks with severe Autism (or moderate Autism that is closer to severe), the parents or guardians can use “help,” and I don’t inherently disagree. In my mind though, that’s not something that should be “handled by” some entity that deals strictly with Autism.
I can make an argument for the idea that “specialists” in dealing with Autism could be of aid to those dealing with Autistic family members or other charges, but for the most part, I don’t believe that’s as necessary as a lot of folks seem to assume.
When it all comes down to brass tacks, I don’t see the need for “raising Autism awareness” being such a critical thing. Nor mostly, do I see most people not dealing with Autism, being interested in “having their awareness raised.” The result is that it’s hard for me to support, “walks for Autism” and things of that sort.
I have a niece who had a “micro-preemie.” The cost and medical treatments associated with such a thing appear to be gigantic, particularly if the care given is good (not what happens in some facilities, as I get it). For such a thing, I can see support being far more necessary.
I’m one of those folks who feels that people are unrealistic, in that they expect that premature birth will ever cease to exist. But the fact that I feel pretty well assured that it won’t go away, is more reason to think it reasonable to raise awareness and continue to work on improvements to the way we deal with premature births. That’s not the case for Autism in my opinion. Not because it won’t go away mind you, so much as that it’s not some sort of defect of problem in my view.
Those of us dealing with it, need to learn to do so better, and more importantly, we need to help Autistic folks with it, to achieve as normal a set of interactions as is possible. Maybe training will help some folks with that, as for me, I don’t see it. As such, I’m not generally in support of events to “raise awareness” or to “help prevent or treat” Autism. That doesn’t mean I hold it against others who do support such things, just that I’m not “in that group” as a rule. Hope this helps to clarify.
So here I am again, out of “time and space.” As usual, allow me to wish you the best of times, and thank you for reading.