If I Could, Would I? Should I?

My son was diagnosed with autism on July 22, 2010. Since then, I have been immersed in the world of autism. Autism is becoming increasingly common, although it would be more accurate to say that it is being diagnosed more frequently. Whether the spike in autism diagnoses is the result of an anamoly, a misinterpretation of the data, or an actual epidemic hasn't concerned me much, and it still doesn't. The salient point is that autism has insinuated itself into the zeitgeist, and the "fight for the cure" that accompanies any real or imagined epidemic has begun. The puzzle ribbons that advocate "autism awareness" are proliferating, and money is changing hands with the goal of eliminating autism.



At a class for parents of autistic kids that I attended, one of the other parents bristled at the word "autistic" being used as an adjective for her child. "My son is not autistic," she said. "He has autism, but that doesn't define who he is. He's just like any other kid, it's just that a lot of things are a little harder for him. But when I look at my son, I don't see autism, I see a beautiful little boy. I hate when people look at him and only see his condition. He is a boy who happens to have autism, not an autistic." I understand what she means. I also hate that people will write my son off becuase he is autistic. It's an inevitability we'll have to deal with and all the disease ribbons in the world won't change that.



At the same time, something nagged at me about what she said. I disagreed with her and I couldn't put my finger on why until I came across the concept of "neurodiversity." My classmate saw autism as a condition that was superimposed on her son's personality. She saw autism as a parasitic entity that had infected her son at conception and for which there was no cure. The underlying assumption, though, is that there is an authentic, un-autistic personality locked way inside her son by autism and that if a Djinni appeared and offered to "cure" her son's autism, her son would emerge as a normal boy. When I think about my own son, I know in my gut that that isn't true.

Autism is a total experience, even in mild cases. It is pervasive. It affects every thought and emotion a person has. For an autistic person, there is no part of reality that isn't colored by a tendency towards asociality, towards routine, or the tendency to see patterns in place of generalities. When I try to imagine my son as a "normal" boy, I can't. If he were not autistic, he would be a completely different person. He would bear absolutely no resemblance to my boy. Curing my son's autism would erradicate the boy that I know and love. I've even grown attached to some of his autistic traits. His catlike indifference to affection has become weirdly endearing. His funny tics and blunt reactions are honest in a way you don't see in most people. I admire the purity of his interactions with the world. All two year olds have that air about them, but with my son, there is a total lack of pretense. He isn't manipulative or cloying- he's incapable of that. I don't admire his "childlike wonder"- I admire his preternaturally worldly lack of wonderment altogether. He's already figured out what it takes typical people their whole lives to learn: life isn't that big a deal, and what happens in it is kind of irrelevant.

His autism isn't always likeable. More often, it is infuriating. His tantrums when some bizarre condition he could never communicate has not been met have driven me to the brink millions of times in his brief life. His total disinterest in other people has created a lot of awkwardness when I'm with him in public, even among friends and family. He barely understands the word "no", and I've spent hours restraining him from climbing on things, running behind the counters at stores, picking up other people's possessions and all the rest. This is par for the course for any parent of a toddler, but in the case of a normal kid, your patience is rewarded with improvement in behavior, however slow. I'm not so lucky.

As insane as his behavior makes me, I have grown to love him. When he is happy, he is HAPPY. The unbridled joy he derives from pursuing his odd goals is contagious, and I find myself cheering him on when he tries to carry an armload of loose sand. I don't ever want that part of him to go away, and if he were not autistic it would disappear. When I look at my son I see a beautiful little boy, like my classmate sees in her child. I also know that what makes him such a wonderful kid is his autism. If a djinni appeared and offered to cure my son's autism, he would be offering to completely change who my son is. He'd be asking me to erase my son- and I could never do that. If I could cure my boy, I wouldn't.



When I was first coming to grips with the news about my boy, this talk by Temple Grandin (above) was one of the most helpful things I saw. Not only does she convey the experience of having an autistic mind to a "neurotypical" audience more clearly than anyone else, but she makes a very important point. We need autism. She argues that if autism never emerged, humanity would still be banging rocks together in front of a cave. The computer I'm typing on and the internet you're reading this on were brought to you courtesy of autism. Einstein, Tesla, Newton and many of humanity's greatest innovators were probably at least a touch autistic. Only people with the insane focus that autistic obsessionality creates are able to apply themselves to the technical problems facing humanity in a meaningful way. Grandin makes the point that the world needs different kinds of minds- minds like my son's.

Even those people who believe that much of the condition's increase is due to things like diet or immunizations- people who believe that autism is a curable condition- will have to concede that not all cases fit this description. I'm trying my son on the autistic cassien- free gluten-free diet. I've heard stories about it changing people's lives, but the research data indicates that there is no demonstrable positive effect of the diet in a large sample of cases. Maybe it will work, maybe it won't. Even if it does alleviate some of my son's problems with communication and emotional regulation, there is near incontrovertible proof that in many cases, no intervention could "cure" autism in everyone with the diagnosis. It's just not that simple.

Autism is a fact of life for many people and it is one that can never be "cured". If curing autism means anything, it means eliminating those genes from the world somehow. If we could do that, if we could make it so that no one was autistic- should we? Aren't the contributions autism makes to humanity and the richness autistic people bring to our lives too valuable to lose? Grandin seems to think so. There is a school of thought that says we need to embrace a model of "neurodiversity" Neurodiversity is the notion that all the variations in our cognitive constitutions are important and should be accepted instead of "eliminated."

My aversion to the idea of "curing" my son made neurodiversity appealing to me, but neurodiversity made me feel uncomfortable, too. In his book Against Depression, Peter Kramer refutes the idea that psychopathology has some sort of redemptive value. Kramer is best known for his first book, Listening to Prozac. In that book he looked at the implications of Prozac's huge impact on depression. The wide-eyed optimism about SSRIs and the near eradication of depression that had taken over when that book was published has dissipated. At the time, however, it looked like we might have found a pill that could eliminate clinical depression altogether. When he spoke and lectured, Kramer was often confronted with the question, often couched as a challenge: "What if Van Gogh had been given Prozac?"

The assumption behind that question is that depression and melancholia are valuable experiences and that removing their clinical manifestations would sterilize the human condition. The contributions mental illness sparks its sufferers to make- paintings like Starry Night- are invaluable parts of being human and if they were gone, the world would be a dry, lame place. In Against Depression, Kramer makes the case that that isn't true. He alludes to Kierkegaard and evolutionary psychology to make the point that suffering in and of itself has no redemptive value. Suffering is evil- and as any depressive will tell you- depression means suffering.

So does autism. My son probably cries a lot more than he laughs. We have spent hours trying to console him when he has a fit, to try and reign in the impulses that seize over him, and he has suffered struggling against our efforts to just get him to behave. It is rough going. At the same time we recognize that autism has some value- especially for people who don't deal with it directly- we are also keenly aware that it is horrible. Grandin admits that half of autistic people never communicate at all, and that she had to struggle through a lot of her life. What does all this produce?

We assume that innovation is a byproduct of the autistic mind, but we can't know that for sure. Kramer points out that Van Gogh painted starry night from the window of a sanitarium, and that it was during the periods that his depression and psychosis were in remission that Van Gogh produced his greatest work. Kramer argues that if Van Gogh had been given Prozac, we might have hundreds of Starry Nights. Could that be true of autism as well? The idea that Einstein's discovery of relativity had something to do with his being a tad autistic is actually an assumption. For all we know, he might have figured out the meaning of life had he been a neurotypical person. Autism is pointless suffering if we look at it the way Kramer looks at clinical depression. If that's the case, my attachment to my son's autistic personality is selfish sentimentality, and the concept of neurodiversity is a cop out. If autism is as worthless as that, then I should cure my son, even if I'd prefer not to.

To a degree, this is all academic. Autism is a complex pathology that implicates dozens of entangled neurocognitive systems. It would probably take a djinni to "cure" those who have it or prevent it in coming generations. The way we look at this academic question is important nevertheless. It begs the question of how autism should be handled. Should we be "fighting for a cure" or should we be "fighting for acceptance"? I think the deciding point is how we look at autism itself. Kramer argues that depression is pointless, but autism is a different animal. Autism, like Down's Syndrome, is inborn and written in the DNA. It is, as I said, a total experience that never passes. Depression is a pathology that imposes itself on the personality. Autism is not. Maybe the fact that autism can't be cured is an indication that it shouldn't be.