Epidemiology of Autism: One Autist's Thoughts of Possible Reasons Behind its Surge

In many of the news reports, popular culture and talk amongst families regarding autism, I have noticed a common theme: too many times people focus on the epidemiology, what causes it, how to “cure” it and other such things.  Now, as a hyperlexic and verbal autist I may have a biased opinion, but it is my contention what the epidemiology stage is not, quite frankly, where the autism community should be focusing its efforts at the moment.  Sure, it's an interesting puzzle; I should know, I'm an analytical autist, I love puzzles.  Still, I think the focus should be on neurodiversity and integration in general; how to deal with society.  Granted, I already spoke of this in my “War on Autism?” post, so I won't wax poetic about it now.  What I will talk about is my thoughts on perhaps why people like to try to find the cause or a cure.

Personally I think there are two reasons for this, the latter caused by the former: They think autism is a net negative on the person, and the parents of children with autism want some sort of justice; by having some cause, especially an environmental cause, there is a concrete injustice done, something they can fight.

First, let me assure parents that autism is not an inherent net negative: If there are any net negative effects it's due to how society treats us, not some defect in ourselves or otherwise.  The idea that we're somehow broken does us a disservice, even if you mean the best.  We're not broken, we're just different.  Yes, we have disadvantages in many areas compared to neurotypicals, but we also have advantages over them as well.  It's a tradeoff and an integral part of who we are as people.  If we can remold society so that autists and neurotypicals work together to produce a better life for both, that should be where our efforts are focused, not trying to find out what makes us who we are.  That can be an interesting puzzle to figure out together, once we are no longer ostracized.

Second, let's assume that the many epidemiological hypotheses are false: I'm not going to say for sure that any are false, but let's perform a thought experiment here.  We're going to assume, for the sake of argument, that genetics and genetics alone is the only cause of autism.  That doesn't mean you still can't fight for justice; that doesn't mean it's your fault that your child or your grandchild has autism.  We are not geneticists playing with DNA strands knowing what we'll do; we cannot fathom what the genetic cocktail will be when sperm meets egg to make a baby.  Your fight for justice now can be to make your child's life the best it can be, rather than trying to fight some possible cause.  Autism is a tough struggle, but I view it through the lens of a civil rights struggle.  It's something that develops in early childhood, if the child is not born with it outright.  It is a facet of one's identity, like nationality, race or creed.  It is something to be proud of.

War on Autism?

Being an advocate for autism I find myself perusing a great deal of message boards and websites in general to get some idea of the zeitgeist surrounding the condition. What saddens me even more than the stories of children having to cope with the social isolation more often than not inflicted by their fellow children which society deems “innocent” and “precious” is the attitude most adults have towards autism and the wording they use for their struggles with it.

Too often the words “cure”, “defeat” and “fight” are used in terms of helping children with autism. While I am sure most of these parents and other adults mean well and only want the best for these children, the usage of these words tends to betray the stigmatization that autism has. By using these terms, there is the connotation that autism is a curable ailment, something that needs to be removed much like polio, smallpox or leprosy. Autism is more than a set of symptoms: it is an entirely different way of viewing the world. Perhaps it is a bit in the way of hyperbole, but when I hear people talking about fighting autism I cannot help but think of intolerance in the past.

For example, take the word sinister: Most people connote the term as meaning evil, untrustworthy and conniving, and due to the way language evolves, that has become the accepted meaning; however, the etymology of the word is a translation of “left-handed.” During the Middle Ages, people actually believed that being left-handed was a sign of demonic possession, something to be exorcised and cured. Even in my lifetime, being both left-handed and autistic, the schools attempted to drive traits of both from me; however, thankfully they did not believe me to be possessed by demons.

I have a feeling much is left to be done in the way of autism advocacy: I want society to eventually learn to have both parties come together in the middle, to accept the benefits autism has and cope with the drawbacks. But so long as words that divide the autists from the neurotypicals are used, words that imply autism is only bad and has nothing good to offer, that day will likely creep further and further away.

Some of you are probably asking, “Cisco, How do I indicate I want to help the autistic people I know while fostering a bridge between the two?” Well, the wording can change while keeping the intent; instead of cure, help can be used; instead of defeating or fighting autism, integrating and supporting could transmit the proper intentions. I, for one, fight for the integration of autists and do what I can to support the autists I know; what we need to defeat is not autism, but ignorance.