On Autism

The Autism PuzzleSince Amanda and I spent two GH-days waxing poetic about the benefits of vaccination, I thought it was appropriate to dedicate a follow-up article to autism. Of course, this not because autism is related to vaccinations, but because it isn’t.

At this point, I think most everyone is aware that the infamous 1998 article in which Dr. Andrew Wakefield linked the MMR vaccine to autism (as well as a host of other things) has been rather publicly debunked.

It was just one paper, with a very small population size of 12. So why was it so easy for parents to blame vaccines? Certainly the media didn’t help. Also, the average age of onset of autism symptoms is between the ages of 3 and 4, which is similar to the times when children are getting vaccines. Most significantly, though, I think the reason for the enthusiastic acceptance of vaccines as the offending party was that there was no other answer. Parents of children with autism are often plagued by uncertainty and fear about their child’s health and future potential. Those of us in the medical field aren’t really able to help alleviate that uncertainty either. Quotes about the percentage of autism that is due to a unifying genetic cause vary, but they average at about 10%. I am confident that the genetic contribution is higher than that, but due to the diverse complexities and interactions of the human genome, at this time, with our current knowledge and technology, we are left with 90% of autism unexplained.

Although the MMR vaccine has been discredited as an environmental (read: not genetic) cause of autism, that’s not to say that there can’t be other environmental factors that may contribute to the way the brain develops and functions. For example, there is a great deal of investigation in to dietary influences such as gluten on behavior and intellectual function. At this time, however, the extremely rigorous jury that is the scientific community is still out on that verdict due to lack of sufficient evidence. As more evidence is brought to the table over time, hopefully there will be more answers.

The next question is – why does autism seem to be so much more common than it used to be? I would say that it isn’t more common at all; we are simply more aware. With awareness comes an increased rate of diagnosis. In Temple Grandin’s brilliant and enlightening TED Talk, she asks the question, “When does a nerd turn in to Asperger’s? … Einstein, Mozart, and Tesla would probably all be diagnosed as autistic spectrum today”. This increased social and academic awareness over time follows the fall of eugenics and the recognition of universal human rights. One of the many blemishes on human history is the number of healthy and mostly-healthy people that were institutionalized unnecessarily. The book Icy Sparks is fiction, but it sincerely portrays the experience of a young girl who was socially ostracized and put in a mental hospital unnecessarily and against her will. An equally nasty blemish on our history is the frequency of involuntary sterilizations of men and women who either had learning and behavioral differences themselves or had children with them. Now that these two practices have significantly diminished (although unfortunately, they are not yet erased), the number of people with autism spectrum disorders that are now part of mainstream society has increased. Finally, at it’s simplest, the increased rate of diagnosis is due to, well, an increased rate of diagnosis. Physicians now know more about autism and its diverse presentations, and have better diagnostic and evaluative tools.

Now here is where I leave the relatively beaten paths of autism genetics and social justice and meander off through the mental woods. It is conventional wisdom that a “normal” brain does not have autism. Thus, one could assume that, with the increased detection and understanding of autism, that people that we previously viewed as “normal” are, in fact, not. I would rather believe that what this actually means is that our definition of “normal” must encompass more than we ever thought it would. In her TED Talk, Temple Grandin explains much of the nuance of her thought process, and how people with autism view the world in a different way from more typical people. The most significant idea in my mind after watching her talk was, interestingly, a picture. (You’ll know why that’s interesting when you watch her talk.) This diagram was once used to explain to me the benefits of getting a PhD, but I believe that I have elevated it to a much more lofty purpose. ; )

Imagine that all of human experience is a circle. Note that I’m not talking about knowledge, what we know about our world, but about how we *experience* our world. Unique experience and perspective is what really leads to unique ideas and innovation. Knowledge is just a collection of information. Experience is how you choose what information to collect, and how you use your collection to interact with the world.

So imagine that all of human experience is a circle: One Teeny Tiny Bubble

 

 

 

Then, imagine that every individual who experiences the world in a way that is just the tiniest bit new creates a bubble that expands the circle just a little bit:

 

 

When you add all the different new experiences that any number of people could have: Lots of Bubbles!

 

 

 

 

Then the entire realm of human experience increases, Whoa.subsequently expanding our ability as a species to do great things with ourselves and our world.

 

 

 

It’s important to note here that the people that represent those bubbles on the edge of our understanding are just that – on the edge of our understanding. It’s also important to understand that few bubbles will lead to great academic, social, or political breakthroughs. Most will be subtle changes, and some of those bubbles will lead to struggle and pain. Autism is indeed a spectrum. The human mind is evolving, just as it has been for countless millenia, and evolution is a path of trial and error far beyond our scope of experience. In the vast diversity of human variation, there are always changes that help, and changes that harm. The difficulty lies in determining which might be which, and opening our minds to what is different and unexpected. Temple Grandin said it takes all kinds of minds, and I agree. If we try to embrace all of the possibilities, we open the door for remarkable people to share the truly remarkable ideas that they’ve found in their respective bubbles. Everyone likes bubbles.

 

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About the Author: Sara Cherny is a board certified genetic counselor at a major academic medical center. She has been in clinical practice for over four years and has special interests in public health and family communication.

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  1. Paul says:

    What caused the correlation?  Post-hoc fallacies, and desperately wishful thinking for an easy solution to an unknown issue.

  2. Bryn says:

    I love you so much for this. 

  3. Sara C says:

    This article highlights *exactly* what I’m saying – we know so so little about the autistic mind and the human mind in general : http://www.shiftjournal.com/2011/11/30/the-obsessive-joy-of-autism/