Monday, March 28, 2016

NeuroTribes: A Reminder And Reflection of Our Humanity

M. Kelter
theinvisiblestrings.com

As an autistic, the impression I was left with after reading Steve Silberman's book NeuroTribes was one of enormous relief. The book not only avoids the usual pitfalls of fear-mongering and stigmatizing language that surround the topic of autism, but actually explains the origins of those pitfalls -- as it pieces together a comprehensive history of both the autism spectrum itself, and the various ways 'autism' has been defined over the decades.

[Image: The cover of the book
NeuroTribes, by Steve Silberman.]
Knowing this reaction to NeuroTribes had a lot to do with my own diagnosis, I became curious as to how non-autistics feel about Silberman's book. The result was conversations with two people who have different connections to autism: Michael McWatters, the father of an autistic son, and Deborah Budding, PhD, a clinical neuropsychologist.

Michael McWatters

M. Kelter: First off, just a general question: what did you think of the book? I was curious about your overall impression, and how much of the material you found to be new or interesting.

Michael McWatters: I loved it. I was familiar with many of the stories and insights covered in the book, but Silberman goes into such depth, and is such a good writer, that I was engrossed throughout. In fact, NeuroTribes has become my de facto recommendation, or gift, for anyone interested in autism

M: For me, the book has been somewhat of a revelation, because I've had a hard time understanding how to process the wide variety of experiences autistics can have. Prior to this book, I wasn't really sure how my own experiences fit in with the topic of autism. So as I'm reading this historical account that spans more than 70 years, I'm surprised at how personal the material feels, at least for me. It's the first time I've read something that helps me develop more of big picture understanding about autism and my own life. Knowing what the book meant for me as an autistic, I was curious if it had a particular meaning for you as a parent.

Michael: Shortly after my son's diagnosis, I read Paul Collins' excellent book, Not Even Wrong. In it, Collins' interweaves the story of various fascinating historical figures who were likely autistic with the very personal story of his own son's autism diagnosis. The underlying journey Collins takes -- guided or inspired by these historical figures -- is toward acceptance.

What Not Even Wrong did for me several years ago, and why I still recommend it to parents, is strikingly similar to what NeuroTribes did when I read it a few months ago: it put my son's autism in a historical context. Both books remind me that Colin’s autism isn't a unique and isolating developmental disorder or anomaly, but integral to the human condition.

NeuroTribes covers more territory than Not Even Wrong, in particular the ways in which autism and autistic people have been perceived and treated throughout history. While there are some obvious high points -- the work of Lorna Wing, for example -- most of the history is bleak, depressing. And so NeuroTribes reminded me to be grateful that my son is alive today [the modern era], in spite of the progress yet to be made.

The very name of the book -- NeuroTribes -- is evocative of a community, a movement, that deserves understanding, acceptance, opportunity. I love to think of Colin as part of that tribe.

M: What would you want other parents to take away from NeuroTribes? Anyone new to the scene will likely google autism and find a million different views about what they should think, do. Is there is anything in the book that you feel would be beneficial for those trying to sort through all of the competing information out there?

Michael: This is a tough question, because there are so many things in NeuroTribes that I think are helpful to people who are trying to understand autism, and who are sorting through all the confusing and conflicting information available to them. For example, Silberman does a fantastic job debunking all-too-common myths; he provides moving portraits of autistic people and their families; he tells of a deep, fascinating, and often troubling history; etc.

But if there's one thing I hope people take away from NeuroTribes, it's this: How we treat autism and autistic people is a reflection of our humanity. On a societal level, treating autism as something Other results in the dehumanization of autistic people, and if history has taught us anything, it's that horrible things happen when we dehumanize people. On a personal level, viewing autism as something Other reduces the opportunity for acceptance.

M: Portions of the book delved into the history of parent advocacy groups, of their efforts to gain education rights for their loved ones and fight the stigma surrounding autism, and so on. My sense is that these stories serve a dual purpose: they provide terrific examples of how to be effective as an advocacy group ... and, in some instances, they function as a cautionary tale about how group efforts can get sidetracked and lose sight of their primary goals (I'm thinking of the switch to autism pseudo-science and conspiracy theories that began in the '90s).

My sense is that any collaborative effort can succeed in similar ways or struggle in similar ways. Did this section of the book add anything to your sense of how best to be an advocate or how best to share information about autism with the public?

Michael: Unfortunately, autism can be a polarizing topic, especially among parents. For example, as much as we've debunked the vaccines-cause-autism-myth, the notion that autism is the result of injury or defect persists. Since I don't agree with that view, it would be pointless for me to participate in any group -- large or small -- that does. It would be a frustrating and fruitless endeavor.

I guess one could argue that I should participate, if only to help others "see the light," but unfortunately when one buys into the notion that there's a vast conspiracy at work, it's nearly impossible to convince that person otherwise. At least, that's been my experience.

NeuroTribes describes groups of people who were able to make great progress, but it also describes groups that became mired in endless debate or -- worse, were misled. Since I'm not a joiner by nature, and since large groups give me the willies, I tend to avoid them for the most part. But, if I do participate in a group, large or small -- and sometimes I do -- I like to agree with the shared values or guiding principles of that group.

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Deborah Budding, PhD

M: What did you think of the book?

Deborah Budding: I loved it; it made me so happy to see a comprehensive consideration of the history of autism without over-pathologising or avoiding the difficult truths about the ways people were (and still are) being misunderstood and mistreated.

I very much dislike the way "low functioning" and "high functioning" considerations are pitted against each other currently in larger society, particularly by parents and the treating professionals upon which they rely. I have seen parents of autistic children treat adult autistics very poorly. I have to remind them that how a child currently "looks" can be very different from how they will look as an adult, or not very different. Developmental trajectories can vary widely. I recently had a copy of NeuroTribes with me at a local jail when I was evaluating someone, and lent it to the supervising staff to read while they waited for the inmate. They thought it was incredibly helpful information.

M: I wanted to ask a few people about the book because my sense is that it will likely mean different things to different people.

Dr. Budding: It should mean different things to different people. Autism Spectrum is not a monolith, any more than is any neurodevelopmental difference.

M: When I first starting writing personal stories online, I had a hard time understanding where I fit in with the bigger picture of the autism spectrum. And I did receive (and still receive) a lot of negative feedback from people who want to define autism more narrowly. So, for me, NeuroTribes has meant having a better feel for what the historical record really says about autism. I was wondering what the book means for you, as a neuropsychologist. Did it add anything to the way you think about autism, be it historical or diagnostic information?

Dr. Budding: It definitely renewed my anger about the profound disrespect many "helping" professionals demonstrate toward people with neurological differences and disabilities. The way people develop "treatment" is in many ways shaped by ideas about what areas of function are to be considered important and beliefs about how "people learn."

Most mental health professionals are not trained with a robust understanding of neurodevelopment, or between-species evolutionary links in behavior, and most are trained to have a very narrow understanding of what "executive function" and overall cognitive function encompass.

M: In terms of how we define autism, NeuroTribes felt like a big pause button on all of the competing arguments. Certainly it offered support for the concept of a spectrum, but more than anything, it felt like an effort to say, “Let's step back, take a breath and just carefully examine where all of these different viewpoints came from.”

After reading the book, where do you think we're going, in terms of understanding what autism is and how we should be using diagnostic categories?


Dr. Budding: Neurodevelopmental disorders are complicated and we don't yet have any really good consistent ways to categorize and conceptualize them apart from the DSM, which is very limited. The DSM was created pre- fancy brain imaging and genetics studies, and uses rather rigid behavioral definitions that aren't brain based.

Nevertheless, aspects of DSM categories remain useful. At this point, ADHD, Autism, OCD and Schizophrenia (to name a few) are all understood to be highly heterogenous in nature, with a good deal of co-morbidity and overlap. The Research Domain Criteria (RDoC) approach was supposed to assist with this but has also been mixed in terms of results and level of acceptance. I think these things will continue to evolve, as things do.

The larger, macro diagnosis of Autism Spectrum Disorder (ASD) remains useful. The concept of a spectrum is very consistent with my training and my personal experience of people. Clinically, I prefer to approach individual cases in terms of trying to as fully as possible understand communication skill differences, to assess various areas of self-regulation and attention capacities (level of comfort/discomfort with novelty, etc.) in order to further guide treatment approaches. I tend to favor addressing and supporting "bottom up" challenges with sensorimotor/regulatory function and sorting out and supporting communication strengths and weaknesses before jumping right to "top down" (and sometimes too rigid) behavioral training of "wanted" behaviors.

M: Looking at your bio, it says you specialize in "subcortical contributions to neurodevelopmental and psychiatric" conditions. Was there anything in NeuroTribes that resonated with your particular area of study?

Dr. Budding: My approach to development emphasizes the importance of sensorimotor development/function and the links between this and cognitive and emotional development. Many autistic people I have seen have been characterized as "oppositional" or "stubborn" because they had trouble formulating a response to someone in the time expected, or in the way expected. Or were rigidly forced to make eye contact without sensitivity to the fact that perhaps eye contact made it difficult to focus on what was being said.

I think it is important to understand that disability is in many ways contextual. Some differences are disabling for people, and they deserve support and assistance. I have found following Real Social Skills on Twitter very helpful in keeping me aware of the importance of respecting communication differences, and not imposing my own interpretations on other peoples' behavior.

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Michael McWatters can be found on Twitter, as well as Medium, where he writes about fatherhood and the autism spectrum.

Deborah Budding can be found at her website, is active on Twitter, and runs the podcast Neurocurious.