Sunday, March 1, 2015

(Sort Of) Looking Autism in the Eye

 In "To the Kid I Saw At Target Yesterday" I wrote:
[My son] is non-verbal and contorts his body regularly in an attempt at sensory perception. I sometimes imagine this as a possible superpower. We take for granted the way we see, hear and sense of world. How does my son perceive it? Does he see different images or sense subtle tones that give him special insight the rest of us, ingrained in our "normal", cannot perceive?
By profession I am a criminal defense lawyer. Among the limitations this work imposes (along with the benefits) is a work life lived a week at a time, from criminal trial docket to criminal trial docket. This contributes, at least in my case, to varied shortsightedness. One variant is I have missed a debate raging within autism community of what exactly "normal" is to those on the autism spectrum. 

The catalyst is my belated reading of the John Elder Robison bestseller Look Me in the Eye. It is an account his spectrum struggles inside of the same family that inspired Augusten Burrough's bestseller, Running With Scissors

Robison led me to read about his conflicts with Autism Speaks, perhaps the best known autism advocacy organization, celebrating its tenth anniversary in 2015. Robison resigned from the organization in 2013 because of his disagreement with its pursuit of a "cure'. This led me, in turn, to read his views on what is being called biodiversity.

Robison raises questions concerning our societal acceptance of behavioral differences of those on the autism spectrum. It also raises more fundamental questions with me about how we view and deal on a daily basis with biological gifts and limitations of any kind. 

It is the very kind of bewilderment with my son I wrote about in my blog post. 

So, from an story by Steve Silberman entitled "Neurodiversity Rewires Conventional Thinking About the Brain" published in Wired in April, 2013 (how did I miss this?):
Autistic people, for instance, have prodigious memories for facts, are often highly intelligent in ways that don’t register on verbal IQ tests, and are capable of focusing for long periods on tasks that take advantage of their natural gift for detecting flaws in visual patterns. By autistic standards, the “normal” human brain is easily distractible, is obsessively social, and suffers from a deficit of attention to detail.
I am not saying my son is imbued with special gifts, insights or powers lost on us mere mortals. I am saying for the longest time my paradigm has been, like Autism Speaks, to focus on a "cure". This prevades all aspects of my perspective, from how I speak to him (how much does he understand?) to his communication to me (does he think me a dolt for the way I speak to him?).

This includes his education experience. More from the Silberman's Wired story:   
Neurodiversity is also gaining traction in special education, where experts are learning that helping students make the most of their native strengths and special interests, rather than focusing on trying to correct their deficits or normalize their behavior, is a more effective method of educating young people with atypical minds so they can make meaningful contributions to society. “We don’t pathologize a calla lily by saying it has a ‘petal deficit disorder,'” writes Thomas Armstrong, author of a new book called Neurodiversity in the Classroom. “Similarly, we ought not to pathologize children who have different kinds of brains and different ways of thinking and learning.”
 I read this and I think of the way we view everything, not just education. 

Of course my example is what I know, the criminal justice system. It is, in fact, The King of the One Size Fits All Systems. For such an example, look no further than Reginald "Neli" Latson, who was granted conditional clemency recently by Virginia Governor Terry McAuliffe. It would not have occurred but for an outcry from influential figures such as Ruth Marcus at the Washington Post. The result was an honest debate among those in authority in Virginia about the difficulties of behavioral differences inherent for those on the autism spectrum. 

I really do not think such a debate or clemency could be had in my home state of Texas.

My son's perception of the world is different. Does it need to be cured? I have not a clue how he breaks down the world around him into the compartments that make it inhabitable for him. Does it need to be fixed? What I do know, now, is he understands things that I did not realize. Whose problem was that? Certainly not his. He comprehends beyond my conventional understanding. I feel it in the marrow of my bones. What do I do about it? How to bridge that gap to bring to flower the perception he seems so excited to communicate? 

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