April is Autism Awareness Month. To review: Autism is one of the five pervasive developmental disorders (PDD) listed in the DSM 5 (Diagnostic and Statistical Manual) which provides diagnostic guidelines for mental health professionals. Autism is characterized by difficulties in social interactions, a narrow and particular range of interests and repetitive behaviors. Although it is thought to be caused by a combination of genetic and environmental factors, research has yet to identify the differences in the brain that determine what makes people with autism different from the norm.
Since the combination of attributes can be extremely different from one individual to another, autism is described as being on a “spectrum”, depending on how much a person is affected.
When coupled with other disabilities, like intellectual disability, a seizure disorder, or a brain injury, for example, it can have a profoundly limiting effect on someone’s life. Such individuals may require services of others for the rest of their life. Their severely restricted communication and/or social skills make it difficult to impossible to communicate their wants and needs. Their narrow range of interests doesn’t help them to be functional members of society. Repetitive behaviors such as finger snapping or arm flapping separate them even more from comfortable social connections.
Elly is an example of a person on this end of the spectrum. She is nonverbal. She loves to look at fashion magazines and to tear out the pages, which she then stacks and restacks in orders that make no sense to her caregivers. Although she recognizes and seems to like family members and certain staff, she makes no attempt to interact with them, preferring her internal world.
On the other end of the spectrum are people with autism who are performing services on which the rest of the population is dependent. In fact, there is research that indicates that about a third of autistic Americans may have exceptional skills.
Max is a good example. He is the troubleshooter for a major medical facility’s computer systems. He is happy to tell anyone who is interested about the extraordinary complexities of the software required to keep all systems up and humming. Yes, he is socially awkward and doesn’t seem to understand that not everyone is as fascinated as he is by the minutiae of the computer codes he works with. But does it really matter that he can’t make small talk or look me in the eye during conversation? Excellence doesn’t require being the life of every party.
Once called Aspergers, Max’s particular set of autistic traits is now seen as part of the autism spectrum and is sometimes called “high functioning autism.” People like him are quietly working in the background of our lives, making our world safer, delving deeply into problems, and inventing and/or improving systems that the rest of the population takes for granted.
I suspect that Silicon Valley has more than its share of people with Asperger’s. (“Aspies” being a familiar term used by some people on this end of the spectrum to name themselves). Others have found places conducive to their single-minded pursuit of a “narrow range of interest” on college faculties or in laboratories where their ability to hyper-focus on a problem is highly valued.
Of course, most people with autism fall somewhere in between the exceptionally abled and the exceptionally disabled — just like the range of possibilities for the neurotypical population, just like you and me. We all have both gifts and deficits. Each of us is a complicated sum of many complicated genetic and nongenetic legacies that put us at risk (or not) for any number of both positive and negative qualities and traits.
In short, being on the autism spectrum is not a sentence to a restricted life. It is but one part of the complex personality structure of a person. And just like anyone else, with adequate treatment for any co-occurring issues and with support for learning more comfortable ways to be in relationship with others, most people on the spectrum can be all they can be. That includes growing up to live independently, have jobs, marry, and have children.
Which is why people who are anti-vaccine for their children concerns me deeply. The subtext of the anti-vaccine campaign is that it is better to die of measles or to contaminate classmates and neighbors than to risk having autism. Really? First and most important, there is absolutely NO connection between vaccines and autism. That is fact. It has been proven by countless studies.
But even if there was a connection (which there isn’t), why is the concern about the possibility of autism more compelling than the certainty of what can happen to a child and the surrounding population when kids aren’t vaccinated and disease spreads? Why are those who are pointedly against vaccines frightened by the specter of a highly disabled child and not hopeful they will get an Aspie genius?
Full disclosure: I have a personal perspective on this because I developed polio before there were vaccines for it. (Yes, I’m that old.) Do I wish there had been a vaccine? Absolutely. The physical issues that were the result have limited me in ways I wish they didn’t for my entire life. I’m grateful that a vaccine has almost eradicated the disease throughout the world and dread its recurrence due to some people’s insistent belief in a fraudulent study.
As we think about Autism Awareness, let’s think about how our culture can be more appreciative of the enormous range of personality types and talents that are found within the human species. Let’s provide the services that people with complicated and multiple diagnoses need and deserve, whether they are on the autism spectrum or they are set apart by other conditions. Let’s accept and enjoy those whose autism is simply one of their quirks and be grateful to those whose autism makes it possible for them to make unique and important contributions to our world.