Billy: You have to be very careful about the idea of “treatments” for anything related to autism. Consider how well treatments work when you’re talking about a physical ailment whose mechanism is, in medical-terms, well-understood. A strep infection, for instance, where yes indeed, our friend S. aureus has been cultured. Even in these cases, when you give antibiotics, you’re going to get surprises. There’s unexpected resistance. A fungal infection takes the opportunity. There’s an allergy. Etc.

Now consider autism. We don’t know what autism is. By definition it’s a loose set of descriptions of observed behavior. Why that set? That’s a historical question. Do we know what’s happening in any single individual? No. Can two individuals show the same behavior for radically different reasons? Yes. Do we have clear and well-accepted “treatment goals”? No. Might a newly-devised treatment work, however “work” might be defined? Maybe. Will we know why? No.

There’s a big market now in this stuff, but it’s not a medical question yet. That’s the main thing to remember, I think. This is not medicine. It’s not science. It’s teaching, maybe. I’m reminded of experiments in which the aim was to civilize Indians. Anyway, bottom line, I’d be very skeptical about all of this stuff, and just take whatever looks useful for your kid, and — unless you happen to find an extraordinarily wise and sensitive therapist — keep the experts away.

The thing is that I know my son can be happy. I witness him being happy every day. Being happy doesn’t depend on any abilities or autism. It depends on his environment.

Billy: “People like you say you don’t want to prevent people from reaching their full potential, but seem to come out against every form of treatment for autistics. Treatments should be used to help them use their newly discovered abilities.”

About the only mainstream autism treatment that *some* neurodiversity advocates speak out against is ABA. In my experience, neurodiversity advocates do not reject treatments blindly. They each will have their well though out reasons for doing so. I’m sure you can find them spelled out at length on blogs and such.

Can you figure out how Harold D would cope with the core thesis in the example of Schrödinger’s cat?

It comes natural.

It sounds like your son has a fairly profound form of autism. If it’s any consolation, in my experience and in the experience of many adults I’ve talked to and read in the last several months, these things often improve as time goes by. I spent childhood nearly crippled by the intensity of surfaces, and I recall being told I took things much too literally. I was unable to understand fairly ordinary academic abstractions, despite being bright. But now the insistance of surfaces has receded and abstractions are much easier — so much easier that I’ve found myself much at odds with people who say it’s hard to learn new things after your 20s. I work as a science writer now and have no trouble following MIT lectures in chemistry and physics. Would’ve been impossible for me 20 years ago. I still have trouble with synthesis, but frankly so do most people when it comes to anything more complicated than throwing a party, so I get by. (I really don’t believe most people have the requisite synthesis skills and coordination to be out there driving.)

What you may be overlooking, though, in all of this, is the tremendously passionate experience of a world so live, however disorienting it may be. That was mine, anyway. I don’t know your son’s. But he really may not feel he’s missing much, or that the decisions other people make for him are terribly important, on the whole. (I used to very happily cede authority in jobs. I got to ignore the politics, ignore administrative worries, and bumble along while doing the thing I was actually interested in. No problem with them steering me so long as I didn’t have to let go of my book. Now I just work freelance and don’t have to deal with any of that; I’m just the hero for turning in acceptable work reliably.) For you there’s the practical problem of seeing that he gets by. But I think there’s a good chance you’ll make yourself unnecessarily unhappy if you slot in your experience and tastes for his.

I don’t see why potential should be limited, especially if there isn’t a lot in the first place. If there are opportunities to increase the abilities of someone, there isn’t any reason not to do so. People want competence, and to not have so much less of it than others. People should be given what they want if it is available.

You say its unrealistic, but many things that are common were once unrealistic. I just hope that if new opportunities come along in the future, people like you don’t hold others back. Its not about bigotry, its about the things that everyone wants. Plain and simple.

Patrick, it is kind of a long story about why I am discussing this issue. There is a large difference with me, quite an onerous one but I don’t understand it. I’ve been following this issue on and off for a few years because a while back I almost got diagnosed with something on the spectrum.

You have written long responses to me, thank you; but it has become apparent that I have not clearly explained what troubles me and why I feel changes in acceptance are of little consequence to my son.

I do not worry about cooking, or driving, per se for my son, but rather, that he lacks a myriad of underlying skills necessary to cook or drive. Until my son came along, it never occurred to me that someone could lack these types of skills; they are taken for granted as so obvious to everyone that is ‘normal’, and apparently, to some that fall on the spectrum as well.

My son does not seem to have any ability to grasp anything of an abstract nature. The fact that
the number two is greater than the number one, the difference between a green set of blocks and a
blue set, the difference between today, tomorrow, and yesterday, that voices on phones are people,
that stickers of body parts can be put together to represent people, not just lines of objects.

In my post, I used cooking as an example, but my worry is not that he’ll mix the sugar into the butter at less than room temperature; but rather, that he won’t understand the difference between setting the oven to 325 and 425 degrees, and what that means to how long the cookies stay in. Of course, you’d need to be able to read a recipe, which entails understanding not just how to read, but before that, that the letters, A, B, and C are distinct things that represent something. You also need to understand fractions, and that you can’t use any cup to measure flour, but cups of specific volumes.

If you cannot understand that 425 is more than 325, your ability to make meaningful decisions about
how you live your life is compromised in many more ways than simply your baking skills. This is why
I will not accept a future for my son where he cannot cook; because it means his ability to make
decisions for himself will be globally affected.

Sooner or later I won’t be around, if he doesn’t change, people that don’t love him as much as I do (or at all) will be making nearly all of his decisions for him.

I don’t know how to define a happy life, exactly, but I struggle to find a way where living with other people making all of your decisions could be one.

Take care.

-pD

-pD