Friday, July 28, 2006

Send in the Idiots

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

and

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.

13 comments:

Kristina Chew said...

Every single passage you point out is one I've been thinking on in writing my two posts at Autism Vox. I have yet to the organ-bruising analogy in my own thinking about this.

I too kept waiting for that dénouément, when there would be a, the, statement of "I am autistic." And the writer dances around this, or maybe ducks, or teases out the idea as he seems to like to do in talking politics or, indeed, in conversing.

I sensed a not-totally identified yearning in him for, yes, connecting. Perhaps he does not express it as such, but there is a force that drove him to find his former classmates, that is behind him laughing with Craig on the lawn of some Long Island estate after they've "crashed" a Republican fundraiser. But Nazeer does not state this longing in himself. I found his presentation of theories biomedical and otehrwise of autism's aetiology in the chapter in which he meets Ira and Rebecca an intriguing way to present topics we have all heard a great deal of.

I'm looking forward to a sequel, should Nazeer write one.

And to more "tales of Bud" in your voice, and his.

kirsten said...

i'm putting it on hold at my library right now. thanks for the review - will re-read it after i read the book.

Tara said...

"Our autism eased,in each case, because of other people,our parents, friends and our teachers of course."
Nazeer has crystallized my mission in this excerpt. If nothing else I intend to ease the autism in my son.

Jannalou said...

"Central coherence" - that sums it up nicely.

That's what I'm missing as I struggle with this move.

It's what I will settle back into once it's over and my things are settled into their proper places, finally.

I have no coping mechanisms for this kind of disruption, is all... *sigh*

Lisa/Jedi said...

I felt sad when I read your excerpt in which the teacher stated that Nazeer was "not autistic". She seemed to award this designation as a long hoped-for medal. This is not what I want for my son. I want him to be fully & happily his own self- which includes autism. Yesterday in the car (on the way home from our very stressful grocery shopping trip) I mentioned a slogan I'd seen on CafePress' Autism page: "I have autism... autism doesn't have me". We talked about what this means, & decided that it means that he defines who he is, not the autism. It made me feel happy & peaceful to hear my son state: "I'm autistic mom, it's part of who I am". I hope that B will continue to feel this way. I also hope that Nazeer will come to a sense of acceptance of himself & not need to look for these sorts of medals from outside of himself.

Joseph said...

Nazeer also did an interview in NPR which was interesting.

Amanda has said this of his opinions on anti-cure:

His whole perspective on anti-cure autistics is the tired cliche that we believe that autism is "hopeless", it's unclear whether he's actually ever talked to any of us at length.

From your post I also get the sense that he's not that familiar with the neurodiversity movement or the anti-cure perspective. In fact, his view that "it was arrogant to believe that I was better because I was autistic" is quite in line with neurodiversity. But a more important aspect of neurodiversity is also self-acceptance, i.e. that it's self-defeating to believe that you're inadequate because you're autistic.

He appears to characterize neurodiversity as this:

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.

That's not an accurate characterization. Being extraordinary is not a precondition for being valuable.

He appears to favor medicalizing autism on the basis that he's gotten as far as he has through hard work and support. Well, any NT would also need hard work and support to get to where he's at. Education is important in autism. I should say, education is important, period. Medicalizing autism, on the other hand, is arguably detrimental to autistics.

kyra said...

oh! thank you for this post, MOM-NOS! i have that book on my nightstand along with about 5 others and i've been wondering which one to pick up next. now i know!

MOM-NOS said...

Joseph and Lisa/Jedi, I may not be doing Nazeer justice here. He is not single-minded in his philosophies or conclusions, and I hope I didn't paint him that way. L/J, I don't think he did wear that comment as a badge of honor, nor did he seem to agree with it. Joseph, I did get the impression that he had a very limited (and inaccurate) view of the neurodiversity perspective, but I don't think he was advocating the medicalization of autism. He was certainly a proponant of education, which, as you say, we all need to succeed. For another perspective on this book, I strongly encourage you to check out Kristina's recent posts on AutismVox. http://www.autismvox.com/do-you-think-that-im-autistic-anymore-growing-up-with-autism-in-kamran-nazeers-send-in-the-idiots/

laurentius rex said...

I'd like to meet this Kam guy some day.

Perhaps I will, he is a literary critic in his alternate incarnation isn't he, something autistics are not supposed to be, which makes him philosophical kin to me.

He won't be familiar with "our" dialogue I suppose, because he does not internally need to be, he is in a postmodern world of his own. I think me and him would get along just fine :)

Daisy said...

My 14-year old son has Aspergers syndrome. I struggle with denial -- not ours, but his teachers'. Because he has developed excellent coping mechanisms, they don't accept that he has autism, and then he doesn't qualify for services that could help him "ease" his autism and successfully work his way into the real world.

Daisy said...

I ordered a copy of the book from Amazon. After I read it, I'll add my two cents by reviewing it on my blog. Thanks for the review!

Amal said...

I just heard about the book on KFOG FM out of San Francisco.. then I did a google search finding you.. wonderful blog.. I am researching this subject and plan to buy the book today.. Thank you :)

Peace and Love,
Amal

My blog.. http://www.myspace.com/_amal

Lyn said...

I liked that book. It was rather fascinating.