Autism in the United States
When I was 13 or 14, I always ate alone in the cafeteria. I kept to myself, pacing around the halls until it was time to return to class. I had always been like that. I always got along with my schoolmates, but I preferred my own company most of the time. It was nothing personal. I was the same way at family gatherings, and my family was relatively close and loving. I have always been a natural born loner, plain and simple.
One day, a good-intentioned pair of girls a year above myself approached me and began trying to make small talk. I reciprocated as best I could (poorly). The pattern repeated itself over the weeks that followed. Finally, one of the two clarified that they did not want me to become one of those individuals “who comes to school and shoots people.”
At that time, I would simply have explained that I was an introvert. Later, when in college I became familiar with the work of Susan Cain (whose book Quiet: The Power of Introverts in a World that Can’t Stop Talking I always recommend, not to mention Party of One: The Loner’s Manifesto by Anneli Rufus), I further categorized myself as an extreme introvert. Not until I was 25, when I finally sought out professional adult therapy, did I discover the positive correlation between my lifelong behavioral, psychological tics and the condition known as Autism Spectrum Disorder (ASD).
There is no medical solution for autism. The organization Autism Speaks explain on their website that ASD “refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication.” At present, the most effective treatment for autism symptoms seems to be responsive therapies and other approaches designed to improve social skills. Scientific studies have yielded some evidence that stem cell transfusion therapy, as well as blocking production of a particular protein, may help reduce autism symptoms, but “such research is only exploratory and not definitive.”
Should we be looking for a “cure” for autism? Is behavioral therapy enough? Are these questions more pressing now that autism is (arguably) on the rise in the United States? I cannot say for sure but, having lived most of my life with the burden of a condition I could not put a name to, and could therefore not explain to others despite the almost unendurable pain it sometimes caused me, I think it is important we begin to contemplate these questions.
Why should we address the rise in Autism?
There is some debate over whether autism is becoming more prevalent, or simply becoming more widely recognized as awareness increases. “Increased awareness of autism has undoubtedly contributed” to its public visibility, but a variety of biological and environmental factors may also be contributing to its growing prevalence.
For instance, more women in the United States are having babies in their thirties than in their twenties, for the first time ever. What does this have to do with autism? One of the potential causes positively associated with autism in children is being born to older parents. If parental agedness is indeed a cause, it is reasonable that autism should be on the rise (my own mother and father were 36 and 42, respectively, when I was born). According to the Mayo Clinic, autism is also associated with a child’s sex (boys being approximately four times more likely to develop autism compared to girls), family history, other disorders, and being born preterm.
The Mayo Clinic goes on to list some of the usual complications associated with autism: problems in school and with successful learning; employment problems; inability to live independently; social isolation; stress within the family; victimization and being bullied. There are, of course, additional complications associated with these issues. As I once retorted to a radical feminist who accused me of being a “typical male incel [involuntary celibate]” because I support sex work, sexual frustration typically goes hand in hand with communicative disorders like autism.
Growing awareness of the nature and symptoms of autism is the only way to begin tackling the societal problems associated with the issue. We live in an interconnected world, one in which cooperation is essential to healthy work environments and human relations. The neurodiverse are at a disadvantage in these arenas, and this fact must be recognized among those in a position to make important decisions concerning the development of autistic individuals, including but not limited to employers, teachers, and parents.
How should we address the rise in Autism?
What can be done about all this? Raising awareness and funding for research and care is an important step, but what can be done to address the root causes? Perhaps research to address those “other disorders” associated with ASD, among them fragile X syndrome, tuberous sclerosis, and Rett syndrome. Addressing factors which lead to preterm births (for instance diabetes and high blood pressure) could likewise be beneficial. Further research is necessary in all these areas.
Regarding the older parent syndrome, a different approach is required. There is a widespread consensus that women are having children later in life because of career planning. Indeed, women are not having as many children as they would like, writes Olga Khazan, “potentially because women who have children between the ages of 25 and 35 suffer a wage penalty they never recover from.”
Perhaps this should be construed as an argument for improved childcare in the United States. Making it easier for parents to go to work without worrying about their kids would make it easier for them to start becoming parents earlier in life, and lead to a better quality of life for all involved. Evidence suggests that families with adequate support “are more likely to be employed and have longer employment spells than families who do not receive support.”
The most important thing, however, may be simply increasing awareness and understanding of autism itself. It is too easy in an extrovert-centric, conformist society to dismiss the neurodiverse as freaks. This perception extends to those who are autistic: “I thought it was simply me — that my personality was just odd — and I would need to learn to cope with the fact that I did not fit in well with most people. Then, at age 28, I was diagnosed with autism,” writes Donald McCarthy. “But I can only imagine how much better my life would have been if I had been diagnosed as a child and had the chance to understand myself at a younger age.”
Being a genetic issue, autism will probably never go away entirely, and it is debatable whether it will ever be possible (or even desirable) to develop a cure, with the organization Autism Speaks having removed “cure” from its mission statement in 2016. But one organization can never speak for the entire community it represents. If behavioral therapies are acceptable, should this be equated with a “cure”? Curing always carries with it the possibility of stigmatizing the cured, and behavioral therapies inherently normalize the neurotypical. On the other hand, defining autism as a spectrum disorder implies that there is some need for a cure.
In my own life, autism has been a burden, but it is a burden from which I have learned a great deal. My present sense is that there is much to be gained both from responsive therapies and from further research into the neurobiology of autism. In the meantime, by addressing important socio-economic issues that compound autism’s prevalence and raising awareness among the neurotypical of the struggles faced by the many in their midst who cannot outwardly conform to their standards, we can perhaps begin to effect a positive way forward.
