"I was normal, for what I am."

My latest entry in my One Person Book Club is Look Me in the Eye, by John Elder Robison. Robison happens to be the brother of Augusten Burrows, who authored Running With Scissors (upon which the movie of the same name is based). However, Robison is accomplished and interesting in his right. Also: he's a good netizen.

Look Me in the Eye is a great read from start to finish. Parts of it were informative, explaining how an Aspergian thinks. But the bulk of the subject matter is a compelling story having little to do with Aspergers itself, narrated with a strong Aspergian voice. So, more often than not, he shows the reader how he thinks, rather than tells us.

Robison was not diagnosed with Aspergers until he was in his 40s. He writes, of reading about Aspergers:

Just reading those pages was a tremendous relief. All my life, I had felt like I didn't fit in. I had always felt like a fraud or, even worse, a sociopath waiting to be found out. But the book told a very different story. I was not a heartless killer waiting to harvest my first victim. I was normal, for what I am.

This passage left a strong impression on me. My journey has caused me to think a lot about what the label means. I've blogged about what I think the label means in the objective sense, and others have chimed in about how they perceive the label - some positive, others negative. Often overlooked in the debate is what the label means for the individual with the condition. What I gather from the account of Robison and others is that with the label comes a sense of understanding and a sense of community and pride.

And so while others concern themselves with the negative stigma associated with the label, I'm struck by the importance of the label with respect to identity. Imagine if you were ethnically diverse or racially diverse (in a nonapparent way), and your parents never told you to spare you negative judgement by ignorant people? This is, in part, why I think it's harmful to dodge the label.

I thank Robison for his emotional honesty.

Another entry in the one person book of the month club.

Over vacation, I read An Anthropologist on Mars: Seven Paradoxical Tales, by neurologist Oliver Sacks.

An Anthropologist on Mars is not a book about autism. Rather, it's a series of case studies which examine the brain's ability to reconstitute "self" or identity when it is injured or diseased. For example, one chapter examines an individual who suffered a severe brain tumor in his 20s. Another chapter examines Temple Grandin, the subject of Thinking in Pictures.

It's a fascinating read, with remarkable subjects. The common theme throughout the book is the nature of the injury or disease, and its relation to self. Of Tourette's, Sacks writes:

Any disease introduces doubleness into life - an "it," with its own needs, demands, limitations. With Tourrette's the "it" takes the form of explicit compulsion, a multitude of explicit impulsions and compulsions: one is driven to do this, to do that, against one's own will, or in deference to the alien will of the "it." There may be a conflict, a compromise, a colusion between these wills....

But the relation of disease and self, "it" and "I," can be particularly complex in Tourette's, especially if it has been present from early childhood, growin up with the self, intertwining itself in every possible way. The Tourette's and self shape themselves each to the other, come more and more to complement each other, until finally, like a long-married couple, they become a single, compound being. This relation is often destructive, but it can also be constructive, can add speed and spontaneity and a capacity for unusual and sometimes startling performance. For all its intrusiveness, Tourette's may be used creatively, too.

This concept of self echoes statements I've read from neurodiversity advocates. For example, autistic advocate Jim Sinclair states:

Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person.

Moreover, Sinclair rejects the designation "person with autism", preferring "autistic person". Sinclair compares describing an individual as a "person with autism" to describing a man as a "person with maleness."

As illustrated in Sacks' case studies, this concept of self is not unique to autism. In my opinion, while the "I" often fuses with the "it" in a theory of mind sense, the "I" does not negate the "it" in the biological sense. Autism - the "it" - exists independent of individual as a genetic condition. (Of course, the genetics are yet to be fully explicated.)

The analytic framework set forth above sheds light on the differences between the pro-cure and neurodiversity camps. In basic terms, neurodiversity advocates reject the separateness of the "it", while "curebies" refuse to acknowledge, or value, the impact of the "it" on identity.

I'm 0 for 2.

When I maxed out on trolling the internet, I decided to buy a few books. As fascinating as the firsthand accounts of other parents were, I realized that they weren't entirely reliable because they were, after all, just anecdotal stories. I decided I was ready for serious study and hard data.
Out of curiosity, I bought The Einstein Syndrome. Everyone knows some one who was a late talker. This can't be imagined phenomenon. But what distinguishes a late talker from a child on the spectrum at age 2? How can one make a differential diagnosis? The book answers neither of these questions. Instead, the book describes its subjects, late talkers such as the author's son, as brilliant, and disparages children with ASDs, refering to autistic savants and "idiot savants." The book is so steeped in elitism, it made me want to vomit. Gag-reflex aside, the author's elitism clouds his judgement. The book posits the theory that analytical skill, in lay terms, hogs a late talker's grey matter, thus leaving less grey matter to acquire speech. The basis for the theory is an overdeveloped lobe of Einstein's brain. (Who knew they autopsied that sucker for posterity?) But the author doesn't address that children with ASDs are smilarly regarded to have "extreme male brain," leaving me to conclude that his "research" is self-serving and biassed.

The other book I purchased was the Autism Sourcebook. Little did I know when I bought the book that the author is an ABA zealot. She goes as far as to recommend that toddlers forego nap in favor of more ABA hours. Lets consider this proposition for a moment. Sleep is essential to the development of the mind. So she advises that children with a pervasive development disorder forego that which essential to development?