“Autisms,” The New Thinking on Autism

IMG_1875 (1)When I first learned about autism, I imagined a nonverbal child rocking in a corner, –cognitively impaired and socially and emotionally unreachable. Later, I learned about Asperger’s. I had met a handful of eccentric students when I was in graduate school. They were clearly brilliant, but they seemed to lack social skills. One student in particular, Rodrigo, had become a friend of mine. He was the smartest person I had met in my program, but he seldom made eye contact, was unusually loud, often abrupt, and had a hard time keeping friends. Yet, he was also generous and loyal. He loved to talk, and we sometimes spent hours discussing philosophy. The thing we bonded over was trouble with the library; we both had excessive fines. I had somewhere around a hundred dollars in fines. Rodrigo had over a thousand dollars! He had never returned one book in the full year he had been at school!

I didn’t know the term Asperger’s back in 2001 when I met Rodrigo, but as soon as I learned of it years later, I knew he had it. Upon reflection, I realized I had met several other people with Asperger’s at school as well. Some time between 2001 and 2010, when my son Camden was born, autism and Asperger’s had begun to enter into our cultural consciousness. Around the time of Camden’s birth, I still thought autism was an affliction of the mind that rendered children devoid of emotion and communication, but I imagined that Asperger’s was more of a charming personality quirk. Both conceptions turned out to be completely wrong.

Today, researchers are increasingly using the term “autisms” or “autism spectrum disorders.” We now realize that autism has so much variety and so many different manifestations that it is impossible to see it as one entity. There is no one gene or genetic mutation that causes autism. We don’t have one environmental pathogen we can point to that changes an infant’s development in the womb. There isn’t even a real distinction between Asperger’s and autism. In fact, Asperger’s was dropped from medical terminology in 2013. Asperger’s is really just short hand for autistics who are highly verbal. But, a highly verbal autistic can have more severe social struggles than a nonverbal autistic.

The unifying factor for diagnosing someone with autism comes down to two main criteria: social impairment and a need or preference for sameness or repetition (and/or resistance to change). An acute vulnerability to sensory overload also seems to be a defining characteristic, but that is not a required condition for diagnosis. There is nothing about a lack of empathy or emotion or an inability to make jokes or have a sense of humor. Those old ideas of autism are rooted in misunderstandings, myths, and bad science.

IMG_1869Under this new way of thinking, countless varieties of autisms exist. There are nonverbal autistics who are highly intelligent. Some of them have brilliant blogs and communicate beautifully, –just not through speech. There are autistics with average intelligence and high creativity. There are cognitively impaired autistics who have low IQ’s but are less impaired socially. Anxiety disorders afflict many autistics, but not all. Many have ADHD, seizure disorders, or Tourette’s; others don’t. Some seem to have savant-like abilities in music, math, or art. It is impossible to list all the variations; neurodiversity is endlessly diverse.

As a culture, we are just starting to absorb this information. I have had dozens of people including therapists, teachers, and doctors tell me that my son Camden could not be autistic because he is so talkative. It will probably take a while for the generalists to catch up with the specialists. I have found neurologists and university researchers to be the best people to go to for a diagnosis and assistance. Camden was diagnosed by a pediatric neurologist at a children’s hospital.

It is kind of funny to me now that people used to say that Camden was too talkative to be autistic. He was actually what is now called “hyperverbal,” a subtype of autism that tends to correlate with high anxiety and high intelligence. For the first few years of his life, Camden talked non-stop. I don’t mean this casually; he talked and asked questions in a manner that seemed compulsive. It was exhausting and amazing at the same time. At age three, his vocabulary tested at the first grade level. Later, as Cam’s anxiety decreased, so did his compulsive talking. Now that we are careful to keep Cam’s stress levels low, he still talks an above average amount, but he is no longer hyperverbal.

There are different degrees of social impairment among autistics, and different environments can impact an autistic’s ability to function socially. For example, Cam functions well socially with his family, or with one or two people at a time. In those contexts, Camden seems relatively “normal” or neurotypical. But, Cam finds conversations with three people difficult or, quite often, unmanageable. Moreover, parties, large groups, and crowds are almost impossible for him to navigate. Those environments will cause him to shut down completely, act out, or melt down. The sensory overload or overstimulation is too much. This is not something he can get used to. His brain is set up differently. His brain may mature out of it to some degree, but it is not something we can rush. Other autistics have social challenges but still function relatively well in group settings. A friend of mine has a great blog, Tales From the Butt, that describes her autistic son. He is much more easy-going socially than Cam and has found great success being mainstreamed at school. School was a non-starter for Cam. He does better learning on his own at home.

It is not hard to imagine that the new conception of “autisms” has huge implications for education. Given the variability of autisms, autistics’ needs are bound to be as diverse as neurotypical children. One program, one type of school, or one special education classroom is unlikely to be able to adequately serve all types of kids with an autism diagnosis. If one considers the prevalence of co-morbid conditions existing with autism such as ADHD, Tourette’s, anxiety disorders, mutism, speech impairment, or seizure disorders, one sees even more challenges to making the school experience tolerable for autistics, never mind successful. It is no wonder that specialized schools, online education, and homeschooling are so popular among families with autistic children.

“When you meet one person with autism, you’ve met one person with autism.” This is a popular saying in the autism community. The stereotype of an unreachable child rocking in the corner is not helpful. Although, some autistics do like to rock to self-soothe, and some children do retreat to a corner when feeling threatened, that anachronistic image cannot begin to accurately describe the incredibly diverse autistic population. Furthermore, the notion that autistics lack empathy, a sense of humor, or are devoid of emotion is equally problematic and cruel. Those are myths that reduce autistics and Aspies to inhuman caricatures unworthy of love and respect. The stereotype of a quirky, eccentric genius is limiting as well. Autistics who identify as having what used to be called Asperger’s are diverse, too. And, being quirky doesn’t do justice to the struggles some endure from being easily overstimulated and overwhelmed by social situations and sensory demands. When you meet one person with autism, you truly have gotten to know one experience, one perspective, and one kind of autism.

Further Reading

‘Autisms’ a More Appropriate Term than ‘Autism,’ Geneticists Say

National Institute of Mental Health, Autism Spectrum Disorder

Neurotribes, The Legacy of Autism and the future of Neurodiversity

 

 

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