Neurodiversity

Am I More Than My Autism? I Refuse to Answer the Question

I’ve recently read two articles in which mothers of autistic children wrote that their children are “more than their autism.” Something about this assertion has been bothering me, and I want to explore why.

When I read the first article, I thought I’d entirely put my finger on the problem. The writer, a non-autistic mother of two autistic boys, had only negative things to say about autism, and it seemed clear to me that she was saying that her children were more than a collection of negatives. Because I consider autism a condition with both positive and negative aspects (like every other condition in life), I attempted to argue with her on that basis. I didn’t get very far, mainly because the writer kept asserting that her children were human beings, not just autistic human beings, which pretty much ended the discussion. After all, who is going to argue with the inherent humanity of any person? I didn’t see anywhere to go, even though something still felt very wrong to me.

Then, I read another article, this time by someone on the spectrum who has two children on the spectrum. She, too, asserted that her children are “more than their autism.” Like me, she sees both the positive and negative aspects of autism, and so I had a much easier time reading and thinking about what she had to say. And yet, the assertion still bothered me. To try to get at why, I decided to apply the question to myself: Am I more than my autism?

That’s when I began to understand the problem.

The term autism is itself very problematic. I agree with Amanda Baggs when she says that there is no such thing as autism, and that there are only autistic people. I don’t feel that autism has an existence separate from me in any kind of quantifiable, objective way. In fact, I’m coming to feel that the word autism is simply a social construct. After all, if it’s all about behaviors, with some behaviors considered impairments, how can it not be a social construct? In some cultures, making eye contact, especially for long periods of time, is considered rude. In some cultures, it’s perfectly acceptable to rock back and forth on a regular basis. After all, observant Jews pray three times a day, and rocking back and forth constantly is part of the ritual. We’ve been doing it for centuries. And yes, some people find it very strange, but their experience of us is a cultural judgment, not evidence of an objective reality.

Even if you move toward describing autism in terms of subjective experience rather than externally verifiable behaviors, it’s still difficult to escape the social implications of what happens to our descriptions of our own experience. I can describe, for example, my inability to filter sound, my extreme sensitivity to the emotions of other people, my lack of guile, my visual acuity, and my hunger for color, texture, and pattern. And yet, if I take those together and make them part of the definition of something called autism, I’m moving them from the realm of autistic experience into the realm of a category—a category in which my experience can be broken down into a list, in which it can be medicalized, in which other people can become “experts.” That’s a realm that the culture constructs constantly and values excessively.

So the very idea of using the word autism as though it is separate from my personal, subjective, daily reality is very fraught.

But there is something more about the question Am I more than my autism? that is very troubling. Or perhaps it’s the expected answer that’s troubling—the expected answer being Yes, I am more than my autism. I am a human being. Autism is just a part of whom I am. This answer is very problematic, for a number of reasons, not the least of which is that it threatens to divide me up into component parts: part autistic, part Jewish, part female, part this, part that. I don’t feel like a series of component parts. Everything I am is completely me: I am entirely autistic, entirely Jewish, and entirely female. If you split one of those things off, I wouldn’t be myself anymore. You can’t take away my Jewishness and think that you will recognize me. You can’t take away my being a woman and end up with a complete human being. And you can’t take away my being autistic and think that I will continue to exist, any more than you can take away all my veins and capillaries and arteries and think that my heart will continue to circulate blood throughout my body.

Even more important, though, is that my humanity is implicit in my being a woman, in my being Jewish, in my being autistic. After all, am I more than a woman? Is my husband more than a man? To say yes, we are both human beings, is to miss the point entirely. Being a woman automatically means that I am a human being. Being Jewish automatically means that I am a human being. Being autistic automatically means that I am a human being. Being female, and Jewish, and autistic, are not component parts of being human, nor is being human somehow above and beyond them. Being human saturates them. Being human is what makes being female, and Jewish, and autistic worth the effort.

And make no mistake: being a woman and being Jewish are not easy, any more than being autistic is easy. Being a woman and being Jewish are not entirely positive experiences, any more than being autistic is an entirely positive experience. For some reason, it’s easier to speak of the mixed experience of gender and ethnicity than the mixed experience of being autistic, at least in this day and age. No one but a misogynist would deny that being a woman is a wonderful experience in some times and places, and a horrendous one in others. No one but a dyed-in-the-wool anti-Semite would deny that being Jewish can be extremely joyous and extremely difficult, depending on circumstances, and often at the same time. But there are days in which I’m hard pressed to find anyone saying anything positive about being autistic, as though being autistic were in some other sort of category, as though the usual paradoxes of being human don’t apply.

Many, many people don’t really see being autistic as being fully human, and in that blindness lies the problematic basis of the original question. When people say that their children are more than their autism, I think what they’re reacting against (and rightly so) is the pernicious idea that somehow being autistic and being human are mutually exclusive. And yet, at the same time, they run the risk of playing into this idea by asserting that there is something more than being autistic, and that is to be human. Separating the categories autism and human does not always result in the two becoming mutually exclusive, but it sets up a dichotomy that can easily reinforce the prejudices of a great many people.

When you come down to it, perhaps what parents are really saying is that their children are more than the stigma of the word autism. They are more than a medical diagnosis. They are more than the cultural refusal to celebrate them. They are more than the daily reminders that there is a construct called “normal” in which life is supposed to be easy and they don’t fit.

I have no argument with any of that.

But I’m not going to answer the question Am I more than my autism? because I do not accept its premises or its implications.

I am an autistic person, and I’m deeply thankful for it, even though I struggle and find myself vulnerable in ways that non-autistic people do not. I am a woman, and I’m deeply thankful for it, even though I struggle and find myself vulnerable in ways that men do not. I am Jewish, and I’m deeply thankful for it, even though I struggle and find myself vulnerable in ways that non-Jewish people do not. I am thankful for my life, whether or not it’s painful, whether or not it’s easy, and whether or not it measures up to the dreams I once had for myself or that other people had for me.

A dream is only a starting place.  Life is where the action is.

 

Rachel Cohen-Rottenberg’s Am I More Than My Autism? I Refuse to Answer the Question first appeared at Journeys With Autism and is republished here with permission.

Rachel Cohen-Rottenberg’s recently published book is The Uncharted Path: My Journey with Late-Diagnosed Autism.

Rachel Cohen-Rottenberg on 08/17/10 in Autism, featured | 3 Comments | Read More