Ettina, thanks for pointing that out! This is the pride and joy I feel when I see my son developing new skills and abilities, and though I can’t speak for every other mother of an autistic child, I know I’m not the only one.

I only wish I could help my son appreciate his own achievements and stop constantly comparing *himself* negatively to other kids.

One is the sense of ‘in comparing this person to some standard of achievement, he/she came up higher than some other people do, meaning he/she is better, and I’m happy about this’. I think that’s what you’re criticizing.

The other is the sense of ‘this person can do something they used to be unable to do, or can do something valuable in some way, and the beauty that is them can be seen through this achievement, and I’m happy about this’. Notice no mention of what others have achieved. This attitude doesn’t mean you don’t *know* how their achievement compares to others, but you don’t really care. That’s good pride, because it doesn’t take away from others.

I’m proud that two months of karate has made me stronger and better coordinated. I’m still clumsy and weak, and I’m not learning karate as fast as an NT would with similar practice, but I am learning, and I’m proud. I’m also proud that I’m very flexible, that I can put my heel behind my head, kick high enough to hit someone’s chin, have my arm twisted hard behind my back without it hurting much. My father’s not as flexible as I am, even some of the black belts aren’t, and I don’t feel better than them because I’m so flexible. I’m proud of my father for finally getting flexible enough to touch his toes without bending his legs, even though that’s easy for me, because I can see it’s not easy for him and he’s making progress. And I know that getting more fit will make both our lives easier, that my father is less likely to have a heart attack and die soon if he does this, and that learning karate might help me do what I want to do in my life, and I’m proud of both of us for making this effort.

I haven’t been able to shake the fear that somewhere, deep-down, the non-disabled people in my life see me as a second-rate substitute for the imaginary non-disabled version who is more perfect, more love, and more wanted than anyone real could ever be. That they’ll always see me as the unfortunate replacement for someone who never existed. That my existence is a tragedy and a burden for them, and they’re only putting up with me because they can’t trade me in for the hypothetical non-disabled twin. That they’d trade me in a heartbeat if they could.

I try to tell myself that they don’t think like that, but I see so many parents of disabled children saying the same things over and over again, and that’s what it sounds like. It’s good to know I’m not the only one who gets this feeling.

We’re not sure he understands that other people are other people, understands the idea of “communication” — he often seems to think of humans as unreliable machines which *usually* refill the juice glass when you thunk it on the table, or *eventually* fix more food when you open the fridge door enough times. (He is much better with computers and TVs; they’re much more predictable.)

I don’t know if he’s happy relating to the world like that or not; he can’t tell us. He *seems* happy a lot of the time, but he also gets bored and sometimes intensely unhappy when there isn’t enough going on — and we can’t tell him what the options are, what’s planned, or what we *can’t* do even if we would like to, much less explain why… and he can’t tell us what he needs, what he would prefer to be doing, or what would be acceptable from the currently available options.

We can’t explain to him that *this* time when we take him back to school, he won’t be going back to the “therapeutic foster home” we pulled him out of two weeks ago — which we think he now really hates, for understandable reasons, but of course we can’t be sure.

If, in fact, he hated it, and could have told us this, we would have pulled him out much sooner. We weren’t sure if his resistance to getting out of the car was just resistance to change, or if he was specifically unhappy about the Home. The signals were mixed. And we were desperate to be able to go out of the house (one of us always has to stay with him when he is here, and taking him out places has always been very stressful for us because of our difficulties in communicating with him).

And last Wednesday, we couldn’t tell him that the place we were going to be taking him (a) was *not* the Foster Home, (b) was *not* the hospital (we had to have him under a general anaesthetic to get his teeth cleaned, because he won’t hold his mouth open; it wasn’t a pleasant experience for anyone), and (c) seemed like a much better place for him than our house, never mind the Home, and one which we thought he might actually enjoy. We couldn’t tell him any of the reasons for (c), either, much less engage in meaningful dialogue about it and get his input.

The most I could do was sing “we’re off to see the Wizard”, hoping there was a faint chance he might get the metaphor: we’re going to a place where we hope we will get what we need, though it will be a long trip and possibly quite scary at times. (We don’t know if he understands the plot of The Wizard of Oz, or just knows all the songs.)

Nor can he let us know if he doesn’t like it there; we can only watch his behavior and listen to the reports from his caregivers and see if it sounds right — does it sound like a Happy Josh or a Not-Happy Josh?

And of course we hope that they will be able to teach him some ways of communication that work for him and those around him. Maybe then he *will* be able to express opinions about hypothetical future events.

I don’t think he is achieving what he wants in life. He is certainly capable of a great deal more, and he certainly shows plenty of signs of dissatisfaction. We don’t know what his limits are, though we suspect his condition (labeled “autism” but I suspect that is more a best-fit pigeonhole than a useful diagnosis) will sharply limit him in some ways. However, we do not know for certain which of his apparent limitations are inherent and which are circumstantial, so we try to keep his options open as much as possible.

If I look into his bedroom at night and hope that one day he will be able to be himself and feel pride in his accomplishments, is that ableist? Or affirming?