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.

Sensory issues: A Clarification

As an autist, I have sensory issues, much like most people on the spectrum. There have been a few efforts by fellow self-advocates on the spectrum to attempt to recreate the experience of overstimulation, but I find it may give neurotypicals the wrong idea of what the autistic experience actually is. It captures the essence of the experience, to be true, but it forgets nuances that may be critical to understanding what is going on.

Contrary to popular belief, most of the senses are not in themselves magnified at all levels; while sounds, smells, sights, etc. may be more apparent to us than to a neurotypical, this does not mean that everything is simply magnified. In other words, it is not exactly the hallucinatory experience many of the videos show.

However, the reason certain stimuli cause issues and the reason we can sometimes perceive more than normies can is because of perception thresholds being lowered. That is to say, it can take less intensity to percieve something for us than for a neurotypical. Conversely, some stimuli can take a higher threshold, and are less apparent, but generally a lack of perception does not cause a sensory issue.

It is this lowered threshold that also lowers the upper limit of pain for some stimuli; we may see the sun as bright, or hear the crowds just as loud as a neurotypical, but since it takes less for us to hear it, it also takes less for us to be caused pain by it. So sounds are not amplified at an upper limit, but we can tolerate less of it before it starts causing us pain. To summarize, it's not that we hear it louder, smell it more potently, or see it more brightly at the upper limits, but the upper limit for us to tolerate before it causes pain or frustration in general can be lower than normies.

Strongholds, Throne Rooms, and the Wilderness

In my experiences as a person with autism, I have found that there are certain areas and situations that strike me as certain archetypes. No matter the particular nuances of the situation, they ultimately fall into one of these three: The Stronghold, the Throne Room, and the Wilderness.

Everyone, no matter if they are on the autism spectrum or not, has a stronghold: a place where they go to retreat, to get away from all of their troubles and undo their stress for a time. For an autist, however, this stronghold is of even more importance. The world around them has so much more stress than a neurotypical's world, and a place where they have total control of their

The Throne Room is an area where an autist feels comfortable. This area need not be a particular physical location, but it usually is. The important thing, however, is that there is an air of acceptance; that they will not be ridiculed or shunned for expressing themselves. A throne room could then be a particular group of friends, or a topic of conversation that the autist has expertise in.

Finally, there is the wilderness; an alien land, both fascinating and frightening. Neurotypicals can experience the wilderness as well, but for an autist, it is a matter of everyday life; the sensory overstimulation can be maddening at times. Keep this in mind when you talk to an autist; they may not be consciously ignoring you, but simply trying to make sense of the world around them.

Hopefully knowing more about how the environments are seem to us will help neurotypicals understand how to approach conversations, which will, in the end, help everyone coexist in relative harmony.

Autism and Speaking: Speeches versus Conversations

Growing up, I never had an issue with public speeches like most of my peers did; I prepared my speech, got up and read it aloud for everyone to hear. I was never nervous, never thinking about the judgment people might place on my words (At the performance anyway; writing the speech, however, was a different animal altogether.) I simply spoke the words and asked for input after the fact.

Conversation, however, was a different animal altogether; if I wasn't anxious, I would stutter, I would not know what to say or how to respond to a question. For years I was a poor conversationalist, even with a high vocabulary and command of several subjects. Now, one may be asking, how could someone who is so good at speeches be a poor conversationalist?

The answer lies in the fundamental difference between a speech and a conversation. A speech is a prepared document, something where the presentation has been practiced and polished. In speeches, interruptions are rare and frowned upon, the signal to start is clearly given and the end dictated by the completion of the material presented. More often than not, the speaker has a decent command of the field of study presented in the speech as well. Finally, speeches are structured, and people on the autism spectrum do very well with structure.

Conversations, however, are random discourses of words, phrases and nonverbal cues, each having to be interpreted to see which idea is being conveyed. The opportunities to speak are often not seen, and interruptions are quite frequent. Trying to find that opportunity to speak becomes a chore in itself and the thought the autist may have had as well as whatever ideas the other people in the conversation may be conveying are often lost in the focus on that moment to speak. In short, a conversation is the worst way for an autist to convey an idea.

Unfortunately, most of the world operates in the conversation manner of speech, and this will be something that ultimately will take work on both sides to bridge. The autist can benefit from training in discerning nonverbal cues, and the neurotypical can benefit by verbally announcing when they have finished communicating their idea. Both sides, of course, benefit from allowing the other side more opportunities to speak in general.

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.

Autism and Entrepreneurship

One of the complaints I often had lobbed at me while I grew up with autism is that I wasn't conforming, that I didn't like what the other kids did, or that I wasn't wearing the same fashions.  Conformity was and to a lesser extent still is something alien to me, and once I realized the fallibility of authority this extended into challenging social norms outright.  I would often ask why something had to be the case and more often than not I could not find an answer that suited my curiosity.

Naturally, this lack of conformity can cause strife in social situations, including a traditional work environment.  However, one must remember that true innovation often comes from people willing to take risks and buck the status quo in order to pursue their dreams.  Autists, with this lack of conformity and obsession with a subject of interest, are perfect entrepreneurs.  Granted, the social and economic aspects of running a business may escape them, but a great many companies now focus on HR and accounting for other companies; the autist need not take those aspects into their own hands anymore.

I personally have found great joy in going into business for myself; the idea that ultimately I have full creative control of where my business goes is a relief, even if it is slightly pressuring at times.  I would encourage anyone with a child or young adult with autism to help them follow their dreams; if an employer or investor is willing to hear them out, so much the better, but if they have to break out on their own, support them all the way; after all, they might be the next great innovator.  Above all, enjoy life and all the crazy twists and turns it gives you.

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.