“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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Conversations in My Head about School

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Collecting Rocks

I have begun thinking about next year. Cam will not be going back to school. We get that now. He still has difficulty processing relatively quiet days. So, the overstimulation and social demands of school, coupled with his high anxiety, would mean disaster. Please don’t tell me to “just try it.” Please don’t say, “all kids have to go to school.” Don’t say, I’m “isolating” him. Don’t tell me how hard it is going to be “on me.” My husband and I thought of all of this. For long stretches, it seemed like all we thought about. When people offer this kind of advice, I want to reply: “Use your imagination. Of course, we had these thoughts. We considered the obvious drawbacks. This was not our first choice.” This is not something we decided lightly, on a whim, as if it was on the menu at the pancake house.

The stakes are high. Cam’s mental health is at stake. And, we wouldn’t be so far outside the box, so very outside that we miss the box, if we hadn’t thought everything through. Cam has autism, not a cold. We believe asking him to tough it out in school is beyond his capabilities right now. Yes, I know some kids with autism do o.k. in school. Of course, I know that. But, a lot don’t. A lot are hurt, psychologically damaged, and broken. Trust me when I say Cam is at risk for that kind of outcome. Don’t ask me to pretend that isn’t the case, so everything can seem fine. It isn’t fine.

So, what do we do? People sometimes look at me as if I don’t know what I’m doing when it comes to raising Cam. I want to yell, “Bingo! I don’t know.” That’s just the problem. I don’t really know.

Yet, I do have some information. I have studied this stuff. I am past the period of reading several hours of research a night, but I’m still current on all the recent thinking. And, of course, I know Camden.

I know when Camden is happy, and I know when he is not. And, by unhappy, I don’t mean simply crying or whining or expressing displeasure. I mean very bad things: hurting himself, hurting us, hitting the dogs, throwing furniture, tearing up his room, kicking the door, banging his head, screaming, and cursing like a sailor. When a child hurts like that, you re-evaluate everything. Everything is on the table. Conventional expectations lose their importance. Happiness is not simply a pleasure; it is a marker of mental well-being. Learning to read seems trivial. I know that sounds strange, but it truly is. Keeping Cam safe, safe from the disorder in his head, from an inability to process a world that is often experienced as threatening, chaotic, and nonsensical, is all that matters. Learning about Pilgrims, finger-painting, duck-duck-goose, making maps and pie charts, all comes second. I wish I could explain that in a compelling way to concerned family members and disapproving teachers and therapists.

IMG_1736So, the plan is to keep Cam home next year. We will give tutoring a try again. If we could add one hour of tutoring a week each year, Cam will gradually gain a solid academic base. Our main goal will continue to be happiness and stability for Cam. As he grows more comfortable in the world, more trusting of people, and more confident in his ability to be present in groups, we will add to his education. And, at that point, we will re-consider school.

School is Not a Quiet Place

Camden hated school. It wasn’t just stressful for him, it was traumatizing.

Still, strangely, he went without a struggle, without tears. At first, I didn’t know what to make of it. The teachers loved him. He was in a preschool for kids with special needs, and he didn’t seem to present any special needs. He sat quietly. He obeyed all the rules. He didn’t speak unless spoken to. At recess, he silently ran around by himself or stood quietly near the teacher. Surely, he presented a nice break for the educators who seemed overstretched and weary with all of the other kids.

puzzleBut, Cam did have needs. And, those needs were not being addressed. How did we find out? Well, that will take some unpacking to describe.

Camden was only in school a short time last year. He began in April and finished in June. He would ask me not to make him go, and that was it. He frequently told me he hated school, but once he got in the car, he became quiet. I now realize that his silence was a cue to the beginning of the shutdown process.

Cam always walked quietly into school. He never fussed, but he ignored the other kids, and drew back from them if they came too close. His behavior was easy and agreeable, but disconcerting. Despite all the assurances from Cam’s teachers that he was doing great, I finally went into observe him during the last week of school (Cam’s seventh week in the program).

On the day of observation, Cam did not seem to recognize me. I came right up to him to say hello, and he just looked at me blankly and went back to looking down. I was shocked, and said “hey, sweetie.” After some blinks, he seemed to wake up. A big smile and look of utter relief formed on his face. I, on the other hand, held back tears.

The following August, school started again. Cam told me all summer that he didn’t want to return. Family and friends countered that Cam had to be in school, that “it was the best thing for him.” Family and friends always say this; it’s common on parenting forums, too. The idea of life without school for a child is unacceptable in our culture. I’m not sure why, but it is. I always loved school and stuck around for two master’s degrees, but it never struck me as necessary. Alternatives always seemed equally plausible and acceptable. Historically speaking, large public schools are a relatively late invention. Before that, accomplished, well adjusted people also studied our world independently, in small groups, through tutors, or with their parents. Schools existed, but a variety of methods thrived in parallel. But, I digress.

Back Cam went to school. Again, he entered the sterile and bright halls, quietly and without a fuss. He looked down and dutifully switched hands for the hand-off to his teacher. I was beaming. “Cam would be fine. I worry too much. That strange moment last spring wasn’t real,” I told myself. “Surely, Cam would do great.”

But this time it was different. After school, the first day, Cam was a wreck. He ran around the house, hit the dogs, charged into me and his Dad, jumped on us, and talked non-stop. He swore at every little annoyance. He grimaced at corrections and could barely take in anything we were saying. His echolalia seemed to double overnight. He compulsively climbed the counters and furniture. He would climb up on his playhouse, swing-set, or fort, anywhere with some height, and jump down as hard as he could. He wanted impact, –impact against the ground, against the dogs, against us, against everything. And, that was just the beginning.

Every day after school, Cam’s aggressive behavior escalated. He threw toys, food, pots, and pans. He hit me, his Dad, and the dogs. But, what broke our hearts, what made us cringe, was when Cam started to hit himself. For me, that was a turning point. I had never seen that before. I had probably decided at that moment to home-school, but I wasn’t ready to admit it. It was only the first week of school. Surely, things would calm down.

But, they didn’t. At night, Cam had nightmares, usually one or two a night. His sleeping patterns were tormented. He would awake several times a night and call for me. His moods were volatile and angry. The second week I kept him home several days just to catch up on sleep and to break the pattern of increasing aggression and irritability.

In the second week, we also reached out to the school with increased alarm. They reported back that Cam was a perfect student. They didn’t think he had autism, and they even recommended he start taking the bus and entering the school by himself. They expressed concern that I was babying him too much.

I was livid.

Clearly, there was a disconnect. I contained my anger and sent several emails pleading with the teachers and principal to help reduce Cam’s anxiety levels and to implement autism protocols to reduce sensory overload. We met with the principal, the school psychologist, and finally had a big group IEP meeting.

The consensus was unanimous among the educators: Camden didn’t have autism; He needed to be challenged more (i.e. we were coddling him), and any problems we were having at home were simply parenting issues that we needed to address. This was my favorite part (insert sarcastic tone): the teachers suggested we add more “structure, discipline, and consequences” and, of course, a sticker chart! I couldn’t believe it. We had just come off a summer where Cam was happy. His behavior had been steadily calming and improving with each week. Clearly, school was the issue. And, regardless, how could I exert more “discipline” on a child who was already hitting himself? How would a sticker chart help with the nightmares and insomnia? My son was not just a little anxious; he was in full melt-down, toxic stress mode. Stickers and discipline were not the solution.

HeadphonesThe school, for its part, said they would make Cam’s headphones more readily available (they used to make him ask for them). And, they would add a visual schedule. But, because they didn’t believe Cam had autism, they refused to consult with the district autism specialist or implement autism protocols to reduce sensory overload.

My husband and I walked out of the IEP meeting silently. Like Cam, we lowered our heads and quietly stared at the floor as we slinked out of the building. We were devastated. Our school district was supposed to be one of the best in the state. We had moved to our town for the school district. Still, once we got to the safety of our car, we realized we had a big decision to make. We could listen to the experts and stay with the status quo, hire an advocate and fight for a better IEP, or leave the school altogether.

I hit the autism forums with a vengeance. I asked for advice and support from everyone. All the autism parents agreed that the school was wrong and probably acting illegally for refusing to address Cam’s medically documented autism diagnosis. We got a ton of support, information, and legal advice. The autism forums are amazing. If you have a problem with the schools, reach out to the autism community; they will help you.

In the end we decided to take Cam out of school. The teachers didn’t understand Camden. Not even the best IEP in the world can make a teacher understand a complex kid like Cam or care about their success. And, maybe it wasn’t the teachers or the IEP, after all. Maybe it was school. Maybe it was the structure of school. Perhaps, it was too noisy, too crowded, too chaotic, too bright, and just too much for our little guy. Some kids with autism are not going to fit into that environment, EVER. Period. Case closed. Camden is probably one of those kids.

So, after just three weeks of school this past fall, three weeks of trauma, we took Cam out. It took him a few weeks to recover and for the nightmares to stop, but now he is happy. Once in a while, he will still ask if we intend to make him go back, and we reassure him that we’re not. He is now in private tutoring, occupational therapy, and other quiet activities. And, he is happy again.

But, you ask, what about socialization? “Socialization is so important at this age!” “He NEEDS to play with other kids.” I can see the comments already. . .

Well, that is the subject of another post . . .Hang on tight; this ride is just beginning!

~Lou