I read Kamran Nazeer's book Send in the Idiots: Stories from the Other Side of Autism shortly after it was released, mostly because it was highly recommended by Paul Collins. I liked the book very much, but decided not to blog about it right away. The truth is, I wasn't quite sure what I wanted to say about it. I thought I'd let some time pass and see which elements of the book stayed with me.
I'm ready now.
The premise of Send in the Idiots is intriguing: as a small child, Nazeer attended a school for autistic children in New York City; now, as an autistic adult (and PhD policy adviser), Nazeer has tried to reconnect with some of his former classmates to find out how and what they are doing today, and what life with autism has meant for each of them. Through Nazeer we get a glimpse not only into their lives as autistic adults, but also into his own. It is a fascinating view.
There are two concepts upon which I've found myself reflecting in the months since I read the book. The first is the idea of "local coherence," which is a theme that runs throughout the narrative. Nazeer describes local coherence as
the preference that autistic people frequently demonstrate for a limited, though immediate, form of order as protection against complexity or confusion
quirks...small, obsessive behaviors that provide some sort of encolsure from the world.
He provides many "typically autistic" examples of local coherence: echolalia, perseverative language and behavior, strict adherence to routine and order. He also provides examples of more subtle examples: spinning ice cubes in a glass while at a party, playing with a cell phone while trying to make conversation, brushing imaginary things off one's shoulder.
Nazeer likens the need for local coherence in an individual to the need for rules and order in a society. He writes,
One of the bars we went to had a sign that read "No Dogs Allowed." This was a statement of a rule. The strategies that autistic individuals use to negotiate the world of others...are also like rules. Like all rules, the barkeeper's rule had some problems... It was overinclusive... Not all dogs are a nuisance, and so the rule covered animals it didn't need to cover in order to achieve its purpose. The rule was also underinclusive... Clearly, there were other animals that might be a nuisance. Despite these problems of form, though, the rule probably tended to work. It achieved local coherence. We could make sense of it.
The strategies that autistic people use to achieve local coherence, Nazeer says, provide a similarly imperfect means of control, sense-making, and distillation of chaos. By responding to a potentially overwhelming situation by focusing on a smaller task, behavior, or item, they are able to reduce the overwhelming situation to one that's more manageable. It's not a flawless plan, of course: spinning ice cubes may reduce your anxiety at a cocktail party, but it will not necessarily make you a sparkling conversationalist. He writes, of one former classmate,
He can't pull the entire...experience into a coherent ball of dough, but he can do these other, much less ambitious things, and when he does them everything else becomes background...This is called local coherence.
I certainly recognize this coping mechanism in Bud. The Teletubbies provide local coherence for Bud in stressful situations - as do his scripts, his iPod, his pacing, his 3D works of art.
I also recognize this tendency in myself. I can think of times in my life when I've been consciously aware of my need to create local coherence: driving to a job interview, feeling the stress mounting, and playing a Paul McCartney CD as I thought to myself, "No matter what happens during this interview day, when I get back in the car this music will be same;" working through the depths of grieving by breaking my days into 15 minute units - How can I get through the next 15 minutes? I can water the plants. - not allowing myself to consider the next 15 minutes until I'd made it through the first; marking the greater passage of time during that same period by religiously eating the same breakfast - a buttered English muffin and a glass of cranapple juice - every morning. These things, too, provided local coherence.
What strikes me, of course, is that though Bud and I both have a similar response in the face of something that is overwhelming and frightening, the circumstances that prompt our needs for local coherence differ dramatically in scale: for me, the loss of a child or a high-stakes interview; for him, a visit from his cousins or the barking of a neighbor's dog. Despite that, recognizing our shared need for local coherence helps me to have empathy for what Bud is feeling when he "retreats" to his comfort zones and, as a result, to be a little more patient with him when it happens.
The second thing from Send in the Idiots that has stayed with me - that, in fact, I have thought about often since I finished the book - is a vignette toward the end in which Nazeer meets with his former teacher from the autism program. He is nervous about the meeting; he wonders what she expects him to be like and how he will compare to her expectations. He writes,
I was afraid I might not have come far enough. Had I beaten the curve identified by the studies? Might she have expected me to do better than I had? It was also becoming obvious to me that (she) had no intention of easing my discomfort. She had spotted it, for sure; perhaps she thought that I was grown up enough to manage, that she was allowed to toy with me. I grinned as I realized that this might be the explanation.
"You're a mean person," I said.
"You're not autistic," she replied.
She and another former teacher make similar comments twice more. I waited anxiously to get Nazeer's take on the comments: What did "you're not autistic" mean to him? What did he think it meant to her? Was she paying him a compliment? Did he take it as a compliment? Did he agree with her assessment that he was no longer autistic? Had this been his goal? And though Nazeer addresses these questions to an extent, he never builds up to the final denouement I expected, in which he addresses these issues directly and reveals his own conclusions about what it means to be autistic.
Instead, in the final chapter of the the book, Nazeer discusses many of the current philosophies and perspectives about autism. He presents few absolutes and talks in vague terms about several schools of thought. Though he refers to neither by name, he appears to reject the biomedical perspective, citing studies of the genetic roots of autism, as well as the neurodiversity perspective. He writes, of a former classmate,
The premise was that you could be extraordinary and distinctive purely on account of being autistic, that this was a creative and valuable way of being... Craig didn't accept that. He felt that it was exactly the same as believing that all autistic individuals were retarded or that all autistic children were savants... I agreed with Craig.
The conclusion Nazeer draws, it seems, is that while there are some advantages to the way that his autistic mind works, he is able to be successful because he has remediated the more problematic aspects of his autism: perhaps most significantly, he has found socially acceptable ways of achieving local coherence. He writes,
What I found myself arguing...was that it was arrogant to believe that I was better because I was autistic; perhaps it did equip me well for certain things, perhaps some of these were not trivial, perhaps, for example, something of my intelligence was related to being autistic; however, I had only reached the threshold beyond which I could even have this discussion with them Thanks, surely to professional help... and a lot of consideration, and work, and care.
In sharing his own journey, and those of his former classmates, Nazeer appears to be making a case for the remediation of autism. He does not claim to have "recovered" from autism; instead, he seems to show by example the ways he has enhanced and preserved the aspects of his autism that have moved him forward, and minimized and overcome those that have held him back. He writes,
(My former teachers) were teasing me when they told me that I wasn't autistic anymore. But there was more to it: they also meant that I didn't display as many symptoms as when they last knew me... and that I no longer had all the same limitations. I got better, to say it that way. And so did all of my former classmates... We became this way through exposure to the world that lay beyond the horizon of our own selves... Our autism eased, in each case, because of other people, our parents, friends, and our teachers, of course. This realization sometimes expands inside me until I feel as if my organs are going to bruise one another.
I think I understand this feeling of organ expansion; Nazeer's assertion almost leaves me breathless. It makes me think of Bud and me, of course, but it also makes me think of so many other neurotypical parents I know who are blogging about their fears, hopes, and questions about the ends as much as about the means as they raise their autistic children by trying to connect, connect, connect, connect, connect, connect. And though Nazeer can't speak for others on the spectrum, his is one voice that tells us we are on the right path.
And sometimes, for me at least, one clear voice is all it really takes to gain a little local coherence.