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.

The Passport: A New Symbol for Autism?

Imagine if you will a person in an environment unknown to them.  The sounds are strange and amplified, the people unaccustomed and aloof, and the environment foreign.  Imagine further that any attempts at communication are failures: People simply cannot understand what they say, and they do not seem to understand what the other people are telling them.  There are two types of people that suffer from this form of alienation.

If you guessed a foreigner, you would be correct on one count.  The other type that may not occur to most is someone on the autism spectrum.  For those of us on the spectrum, we often feel like strangers, even in our own hometowns.  It feels like being in a foreign country every time we exit our house.  This feeling of alienation, in my opinion, is why we are such fans of routine: Going to the same places, having the same rituals and knowing the same people lessens and dulls the sensory overload of new stimuli.

Many associations related to autism seem to use the puzzle piece as a symbol, with such slogans as "Until all the pieces fit", or displaying a missing piece; this, to me, is a gross misrepresentation of the autistic experience. There is nothing inherently missing or misfit in our own minds; we simply operate in a different manner than the established norm.  A better symbol would be the passport; we are constantly experiencing culture shock with every person we meet, and this experience will never end.

The passport, to me, also represents the intended goal of myself as well as many other autists and autism advocates: Integration.  We do not want to be cured or fixed outright; sure, some aspects of our experience could be changed for the better, such as the sensory overloads not being so severe, or education techniques to help us communicate more easily and effectively with neurotypicals, but above all, we want to be embraced and accepted for who we are, not changed to fit into some mold.  An immigrant does adjust over time to the culture of their new country, but most do not lose their native culture either.  Such should be the same with autism.