“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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Supporting Neurodiversity in Autistic Kids


I was on a Facebook forum for parents of kids with Asperger’s the other day, and one post really struck me. A mom was celebrating the fact that her son went to a high school football rally. It took a while for her to convince him to go, she explained, but he went. Apparently, he went by himself and stayed for the whole rally. He reported back that it was pretty boring and that he didn’t have a good time, but that didn’t stop her from celebrating his “achievement” and proudly sharing it on our forum. I imagine she praised him for his good work as well. In the comments, a dad said that he and his wife made their son go to a dance. They dropped him off and refused to pick him up for two hours. The dad reported that he had told his son that he needed to be more social. The boy had a bad time, the dad commented; however, that was o.k., he explained, because it was a learning experience.

The more I thought about these situations, the more upset I became. I can only speak for myself, but going to a high school pep rally by oneself and being bored the whole time sounds horrible. What a miserable evening. Why was the mom celebrating it? I know. I get it; she was celebrating that her usually introverted son was getting out and being social. But, is that really a good idea? Doesn’t that send the message to her son that he should be more like the crowd, i.e., more like the neurotypical kids enjoying the rally? Likewise, forcing a child to attend a dance in the naive hope that it would make him more social says to the child that he should behave more like the other kids. It conveys the judgment that the child is wrong for being who he is.

I’ve seen similar posts about family parties and birthday parties. Aspie parents are often delighted when their kids attend these events. This is largely due to the fact that their kids tend to not want to go these functions (there are exceptions, of course; some autistic kids do want to attend parties). The parents are then thrilled when their child does participate, and they make a big deal of it. What I rarely see is parents celebrating that their kid made an awesome village in Minecraft. There is a bias toward praising kids for behaving more like neurotypical kids. I can’t imagine that this would be good for a child’s self-esteem. I would feel confused if I got back from a pep rally that I found boring and irritating only to find my mom praising me for enduring it. I would wonder: am I supposed to be like the people who enjoy these events? Why is that so special? Why does my mom prefer their more outgoing personalities over mine?

Autistic kids can be pretty stubborn when it comes to changing who they are, –as theIMG_0887y should be. It would be better to embrace their eccentricities rather than fight them. Parents are asking for a lifetime of conflict when they don’t. For example, at age five, Cam’s interests and preferences are already well defined. He is a dedicated nudist. He shuns footwear of all kinds. He hates babies, which he tells us regularly. He loves computers, tablets, phones, clocks, safes, and mechanical gadgets of all kinds. He doesn’t like dining out or going to the movies. He loves adults and sophisticated conversations, particularly conversations about paleontology. His preferences for recreation revolve around hiking, studying nature, and catching frogs. He is partial to sea creatures of the Cretaceous period, but is kind of “done” with dogs and other modern, domesticated pets. I don’t see him getting his hair cut ever again. When he is nervous, he likes to twirl his arms in large circles. And, if you really push him for a hug when he’s not ready, you might get a push instead. He likes his boundaries respected, thank you very much! Camden doesn’t just march to his own drummer; he is re-writing the music of the entire band, –which incidentally reminds me, his latest passion is swing music. This is not a kid who is likely to enjoy standing around applauding the football team. He has his own things to do. Perhaps the football team should cheer him on!

My husband and I celebrate Cam’s individuality; this is where he finds his bliss. We’re not interested in “fixing” him or curing him of anything. He is very socIMG_0881ial in his own way. We don’t care about him attending pep rallies or school dances. I could imagine him much happier in a lab or a music studio working alone or in a small group. And that would be great. We want him to be happy and proud of himself the way he is. I think this is the direction we need to move in as a community. We need to respect our kids for who they are and celebrate their achievements in the realms they have chosen as important. If we don’t embrace our kids for who they are, how can we expect the world to embrace them?

Our Experience with Professionals

I wrote the comment below on an Asperger’s forum today, and I got several “likes,” so I think it probably resonated with a lot of parents who have been in and out of therapist’s and doctor’s offices like we have. I made some minor edits to the text to clarify information, but here it is.

In response to a mom who posted about how frustrating it can be to work with professionals:

I totally feel your frustration! We’ve had mostly bad luck with doctors and therapists. My husband and I are taking a break from professionals for a while. Only a couple have been helpful; most have had no idea what autism or Asperger’s is really about. I’ve found more answers reading Facebook forums and blogs about autism and Asperger’s. I especially like Asperger Experts Private Group and their main website. Also, I get the most useful information from articles by actual researchers and specialists (see sfari.org), and reading work written by Aspies themselves (see Musings of an Aspie). It’s only people on the front lines who truly get it. People with generalist’s backgrounds who have read a couple chapters on autism are mostly guessing or applying a neurotypical lens to an autism-based issue. More and more, I feel like I have to trust myself and trust that nobody is going to work harder at understanding my very complex son than me or my husband.

~Lou