Social Interaction and Cure

I wrote a post in September about defining curebie-ism, in which I said that a parent's attitude toward his or her child determines whether that parent is a curebie, rather than the choice of any particular treatment or therapy. At the conclusion of the post, I wrote, "If you care whether your autistic child thinks you are a curebie—you're not one."

Wade Rankin responded by pointing out that all parents have to make choices that will change their children's development in one way or another, regardless of whether the children approve. At first glance, that seems like a sensible enough point, and one that is true whether or not a child is autistic. When you stop a toddler from wandering away, for instance, you don't worry about whether you're stifling her adventurous spirit. Parents are constantly shaping their children's personalities by making everyday decisions; it would be impossible to do otherwise.

I gave the question some more thought after reading Tera's recent post about the attitude shown by Alison Tepper Singer (of Autism Every Day infamy) toward her daughter and the idea of cure. Singer opined that her daughter had no abilities and that there was no reason to be concerned about squashing the child's natural personality. That's curebie-ism at its worst: a total lack of acknowledgment that an autistic child even has any feelings and thoughts that are worthy of concern.

Most parents who talk about "curing" their children are not in that category. They're not trying to change their kid into a completely different person, they say; rather, they just want the kid to have more ability to communicate and interact with society. While that's a reasonable goal in itself, sometimes it seems as if these parents overlook the fact that their autistic children already are interacting with society. Wade's post, for example, describes how he imagines his son, if "cured," might behave:

Why, my son asks rhetorically, did I ever think it necessary to “cure” him; did I consider him “defective?” Without waiting for a response, my son storms out of the house and walks outside to his waiting friends, to whom he complains about how I just don’t understand him the way his friends do. If my son would only look to the front window of the house, he would see me peeking out from behind the curtain, listening to him interacting with his friends. And he would see me grinning from ear to ear.

Wade, I have to ask: do you really believe that autistic teenagers have to be "cured" before they are capable of interacting with friends and complaining about their parents? Because if that's what you believe, I take it you haven't looked at the Aspies for Freedom (AFF) forum recently, or any of the other websites where thousands of autistic teens are venting—quite vociferously indeed—about how society and their parents have treated them. And they're not "cured" by any stretch of the imagination.

Before I go any farther on this topic, I want to make it clear that I do not share the attitudes I'm about to discuss. My parents always respected my individuality and treated me as a worthwhile human being; I have no grudges against them whatsoever. I also don't intend this post to be a personal rant against Wade or any other parent who has expressed a desire to "cure" a child, but I feel that it's necessary to bring certain unfortunate facts to their attention.

In the decade since the Asperger diagnosis came into common use, large numbers of autistic youths—mostly male—have grown up feeling profoundly alienated from society. Many of them spent their childhood sitting in segregated classrooms, swallowing daily doses of behavior control meds, going from one therapy to another, and hearing themselves described as tragically defective sufferers whose existence should have been prevented by means of prenatal testing. They are full of rage and despair at a society that they believe has not only rejected them utterly, but has also turned their parents against them. This is not the typical teenage angst that many of us remember, nor is it an irrational creation of disordered minds. It is a corrosive, soul-crushing despair that has grown out of actual experiences.

The following poem by "kai," recently posted on the AFF site, illustrates the raw depth of such feelings:

ME

it's hard for me to sleep...i fear my dreams
it's hard for me to live..i fear my life
i fear feeling too much
or at all
even the happy feelings bind with strife
and all the joy is tainted with a sting
and all the light is faded with a gray
all the drugs are based in an addiction
and hopes that they could take the pain away
and if somebody feels we call it crazy
and if i feel i tell myself to stop
if i dream i wake up kind of shaky
and if i live i tell myself to not
then i run somewhere i haven't been yet
and promise things will turn out right this time
take another pill to make it better
and find myself inside this paradigm
everywhere i go i build with dreams
and the dreams are everything i couldn't be
those dreams become a prison that i hide in
and that prison that i hide in
becomes me

Amy and Gareth Nelson, the administrators of AFF, have repeatedly stated that they do not advocate, and will not condone, any violent or illegal acts. But sometimes their efforts remind me of the story of the little Dutch boy with his finger in the dike, trying to hold back a flood. They had to talk one guy out of a suicide terrorist attack on the Judge Rotenberg Center. Someone else posted that he was thinking about immolating himself to protest society's abuse of autistics, like the Buddhist monks who committed suicide during the Vietnam War. And this was posted just yesterday, in reference to what could be done to stop eugenic abortion:

A bit of C4, some matches for the data, and some .50 cal bullets for the researchers will do the trick.

Frankly, I'm surprised that there hasn't been any terrorism committed by autistics. If any other minority group were this close to genocide, there's no doubt a "liberation army" would consider itself morally justified in fighting back by any means. Although autistics are often considered to be more analytical and less emotional than the general population, we do have a broad range of personality types, and not all of us have a natural inclination toward calmly seeking peaceful solutions.

I don't advocate or condone violence either, and I really hope it doesn't happen. (Edited for more emphasis: If anyone reading this post has been thinking about committing a terrorist act, DON'T DO IT.) But we need to face the fact that we now have a social minority underclass of angry youths with little or no hope for the future, who grew up being treated as damaged goods and who are likely to remain unemployed because of discrimination; and historically, that always has been a recipe for disaster.

Wade—I don't know anything about your family situation, and I am not claiming that this is how your son feels. I wouldn't presume to suggest that, and for both his sake and yours, I hope it isn't so. However, under the circumstances, it's likely that when he starts complaining about his life to his friends, you will not find that to be an occasion for "grinning from ear to ear."

I recommend reading the short story "Poor Little Black Fellow," written by Langston Hughes and published in 1934 as part of the collection The Ways of White Folks. It's about a young African-American man who travels to Paris with the well-meaning white couple who raised him. For the first time in his life, he finds himself in an environment where he is seen as a human being like everyone else, rather than as a "Negro." When he decides to stay in Paris, his foster parents are dismayed, believing him to be ungrateful for failing to appreciate their efforts to help him deal with his disadvantages and make the best of his status in American society.