Defining Autism

I am taking the liberty of publishing the comments made by John Elder Robison regarding our book, “Defining Autism”. John was kind enough to read the book and send us his review.  I appreciate the time he took for this endeavor. For those interested, the book made the #1 new release in Behavioral Disorders/Special Education in Amazon.

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Defining Autism, by autism researchers Emily and Manny Casanova, is destined to be a controversial work. The community of autistic people and their families are divided by those who believe in the neurodiversity paradigm, and those who reject it in favor of the medical model of autism as disability. The authors of this new book encapsulate that dynamic in their own family, and by extension, in this book.

Defining Autism begins with new insights into the evolving tale of Leo Kanner and the creation of the autism diagnosis we know today. The Casanovas describe some Kanner observations that are largely overlooked today, but which show how many of the ideas we think are “new” actually occurred to the first autism researchers seventy-some years ago. The Casanovas, Silberman, Donvan/Zucker, and other historical writers all have different interpretations from that era, and a historian of the subject will benefit from reading them all.

From there the book moves into how autism affects the brain, or perhaps how a different brain conjures autism as a result of how it’s formed. The idea of neurodiversity posits that autism is part of a range of neurological variation that has been part of humanity forever, as opposed to being an injury or defect that happened to an otherwise ‘normal brain’. The Casanovas do a good job of explaining the many ways autistic brains differ from the typical, and what that may mean.

Every proponent of neurodiversity must reconcile the idea that there is a point where benign difference shades into pathology for all forms of diversity, including autism. Supporters of the medical model of autism (like Manny) benefit from recognizing that autism confers exceptionality as well as disability, and so presents a unique challenge to medicine, which has traditionally focused on cure.

The best approach for autistic people may eventually integrate both views, by seeking support to foster and bring out exceptionality, and treatments for the aspects that cause genuine suffering today.

Supporters of the neurodiversity model tend to believe autism pe se is not harmful; rather, the conditions that accompany it are. In chapters like Epilepsy and Regression, the Casanova book does a good job of explaining for a lay person how those things are inextricably intertwined. In a neurodivergent person we may not be able to have one without the other, and we may not be able to treat the one without treating the whole.

The Casanovas explain some of the different biological pathways into autism, which gives a scientific basis for the sometimes-dramatic differences between two individuals having the same diagnostic label.

Having known the Casanovas for some time, I have seen the ideas that form this book take shape. If read with an open mind their work will give any student of autism a lot to think about. Readers with a strong neurodiversity bent may find parts of this book lacking but the breadth of medical issues covered is something no student of autism should be blind to, however their meaning may be interpreted.

John Elder Robison

Neurodiversity Scholar

The College of William & Mary

September, 2018

 

12 responses to “Defining Autism

  1. There is the harmful dualism that see the world as divided between neuro-typical and neuro-divergent people. That is a good example of what I would call delusional dualism that see certain individual in the spectrum of autism as “different” without giving any scientific evidence of what that diversity is about. Who could actually provide evidence that support such a claim? Neuro-divergent people (and those who call themselves “autistic”) look like regular human beings to me.

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      • Agree completely. Curiously I have written a lot about evolution but also about the neuropathology of autism. You have given me the idea for my next post (the introduction to an article preprint). Hope you enjoy the same.

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  2. This book, and my own comments about it, do not really address the question of autism prevalence increase in the past 40 years. The issue is far from resolved.
    Studies like Brugha and their follow-ups show that a large percentage of the older autistic population is undiagnosed, or otherwise diagnosed. When looking at all the extant adult studies together one can make the argument that the vast majority of autistic adults are unrecognized as such at this time. If they were recognized it’s not at all clear how today’s presumed prevalence increase would stand up.
    There is also a question about severity of impact. A common argument is that there are more cases of autism with severe physical or language impairments as compared to 20-30 years ago. A common counterpoint to that is the argument that ID and some other diagnoses are going down.
    Then there is the “immune dysfunction” and autism connection argument, and the indisputable evidence that conditions like asthma and peanut allergy are far more common than in generations past.
    All I can say is, this is an unanswered question and the book and my comments don’t really go there. But no one book need cover everything!

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    • Thanks for your observations and comments on Defining Autism by Emily and Manuel Casanova.I know that statistics can be interpreted in many directions.1 in 6 ID the CDC including autism (16.6%) could be a bias statistic.How many or how much of something is not important.Why pediatric psychiatric facilities in the USA are in crisis is a more interesting way to find answers on the neurodiversity side or on the medical model of autism as a disability.

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  3. I have read this reply by John Robison.

    I would like to share my view that Manuel’s ideas are truly distinct on a certain basis to neurodiversity. You may argue the opposite of neurodiversity are the bigots against autistic individuals so common now, (“autism” has become a slur) and lump them with the medical model, but it’s the other way round.

    They share most basic beliefs or biases in common with neurodiversity, they just interpret it with a different story. Both believe mostly in purely genetic cause. One side because they cannot admit anything bad could possibly cause it or it would be a bad thing, the other to inflate their own ego as being “normal” for simply having “good” genes, both also avoiding taking fault of being part of a society that has caused increase through environmental damage.

    Both see the autistic brain as inherently complete in it’s form as a variation, one side as a good thing ignoring real problems, the other as creating some person who should be put in a death camp, while the medical view is that of a disrupted development preventing a “normal” brain and the patient requires treatment and deserves help.

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      • Most direct to the point – and most important, given the proliferation of self-diagnosis – there are people who realized that autism can convey attention in the social media and may be enabled them to have a book deal. They use that to their advantage, however, I wonder to the 99 percent who won’t become rich and famous for calling themselves “autistics” what advantage pretending to have autism could offer.

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