{"id":292965,"date":"2016-02-02T19:21:48","date_gmt":"2016-02-03T00:21:48","guid":{"rendered":"https:\/\/policyoptions.irpp.org\/2016\/02\/why-we-should-all-embrace-the-neurodiversity-movement-review-essay\/"},"modified":"2025-08-28T15:25:13","modified_gmt":"2025-08-28T19:25:13","slug":"why-we-should-all-embrace-the-neurodiversity-movement-review-essay","status":"publish","type":"post","link":"https:\/\/policyoptions.irpp.org\/fr\/2016\/02\/why-we-should-all-embrace-the-neurodiversity-movement-review-essay\/","title":{"rendered":"Why we should all embrace the neurodiversity movement"},"content":{"rendered":"

Books reviewed:<\/p>\n

Uniquely Human: A Different Way of Seeing Autism<\/em> by Barry M. Prizant, PhD with Tom Fields-Meyer (Simon & Schuster, 2015).<\/p>\n

NeuroTribes: The Legacy of Autism and the Future of Neurodiversity<\/em> by Steve Silberman, Foreword by Oliver Sacks (Avery, 2015).<\/p>\n

 <\/p>\n

This morning\u2019s news brought me a story<\/a> about a school in Australia that thought it was a good idea to construct a large metal cage to hold one of their students, a 10-year-old child with autism, when he could no longer control himself. The cage itself was a horrifying image \u2013 smaller than a jail cell and more akin to an enclosure for zoo animals than inmates.\u00a0 I can only imagine how many people were possibly involved in this decision making or turned a blind eye \u2013 the budget to purchase it, someone to construct it, teachers and administrators supervising its use, and so on.\u00a0 Thankfully someone recognized it for the monstrosity it was and alerted higher authorities.\u00a0 The cage has been removed and new policies written -but it took almost three weeks before action was taken, before someone recognized that treating a child with autism like a deranged animal was just not ok, and was most certainly not an \u2018education.\u2019<\/p>\n

As a mother of a son with autism, I\u2019m well aware of the challenges the neurodevelopmental disability can present to a caretaker or educator.\u00a0 But I\u2019m more aware of the challenges the disorder can have on the child.\u00a0 As variations of the saying go, \u2018the child is not giving you<\/em> a hard time, he\u2019s having<\/em> a hard time.\u2019<\/p>\n

Autism is now more commonly referred to as Autism Spectrum Disorder (ASD), the official designation of the DSM, a \u2018big tent\u2019 approach to include a wide range of challenges which may present in wide ranging severity.\u00a0 Those with autism may have impaired verbal and social communication, rigid, restrictive and repetitive behaviours, uneven intellectual development, sensitivity (hypo or hyper) to sensory input, challenges with fine and gross motor skills, among other characteristics.<\/p>\n

What makes autism tricky to define is that some individuals can be more significantly impaired by these challenges than others: \u201cIf you\u2019ve seen one person with autism, you\u2019ve seen one<\/em> person with autism,\u201d goes the mantra in the community. The U.S. Centers for Disease Control estimate one in 68 children (one in 42 boys) are on the autism spectrum.<\/p>\n

Barry M. Prizant\u2019s book, Uniquely Human<\/em><\/strong>, points out that autism has traditionally been understood as a checklist of deficits \u2013 what a person on the spectrum can\u2019t do, what they lack or fail at.\u00a0 And many therapeutic approaches emphasize reducing or eliminating \u2018autistic behaviours\u2019 \u2013 from hand flapping to spinning, to selective mutism (non-responsive behaviour) and echolalia (seemingly random word repetition).\u00a0 What\u2019s more uncommon is the expert who focuses on a child\u2019s abilities and unique intellectual capacity for learning and development -what\u2019s actually useful to parents, in other words, shepherding their child\u2019s development -and what engages the individual expression of the child and prepares him to live and thrive in the larger community.<\/p>\n

Which is why Prizant\u2019s book is so refreshing \u2013 and constructive.\u00a0 It should be required reading for all educators and practitioners working with autism.\u00a0 Prizant turns the typical understanding of autism on its head with a simple, yet profound central message: \u201cAutism isn\u2019t an illness. It\u2019s a different way of being human.\u201d\u00a0 Prizant suggests that instead of treating the individual with autism as a \u201cproblem to be solved,\u201d we should instead focus on each as \u201can individual that needs to be understood.\u201d Strange or troubling behaviours aren\u2019t simply manifestations of autism that need to be extinguished, but forms of communication that we must first learn to read in order to better understand and support the individual.\u00a0 Prizant argues it\u2019s more productive to ask what\u2019s motivating a behaviour and discover the purpose it serves rather than viewing it as non-compliance, willful or uncooperative behavior.<\/p>\n

Prizant\u2019s focus is on establishing pragmatic supports that will help the individual lead a fulfilling and self-determined life.\u00a0 His therapeutic approach \u2013 after 40 years in the field as a clinician and researcher \u2013 is breathtakingly simple and profoundly positive: \u201cThe goal shouldn\u2019t be to fix the child or make the child \u201cnormal\u201d but rather to help the child develop the ability to make his own decisions, to exert control over his own life.\u201d<\/p>\n

Too often, Prizant notes, experts try to control the behaviours of the child first and educate and communicate after.\u00a0 Prizant argues this approach doesn\u2019t work and often makes matters worse.\u00a0 In the extreme, this approach could explain bizarre ideas like putting children in cages instead of classrooms.<\/p>\n

Instead, Prizant puts an emphasis on discovering what makes a person with autism \u2018dysregulate\u2019 in the first place \u2013 that is, what makes them lose emotional control, what gives them discomfort, anxiety (which generates a fight or flight response) and causes confusion.\u00a0 It\u2019s\u00a0 an ironic twist, he believes, that most of the behaviours commonly thought of as autistic (and problematic) aren\u2019t actually deficits<\/em>, but strategies<\/em> that help the person with autism cope and self-regulate.<\/p>\n

Science journalist, Steve Silberman\u2019s epic and often shocking history of autism, NeuroTribes<\/em><\/strong>, similarly challenges the idea that autism is an aberration or deficit.\u00a0 More controversial is his claim that neither is autism a \u201cunique disorder of our uniquely disordered times.\u201d\u00a0 Instead, he champions what\u2019s come to be known as the \u2018neurodiversity movement\u2019 which argues that autism is part of the continuum of being human, and should be considered part of the valuable legacy of our genetic past.\u00a0 He does not dispute or downplay the disabling characteristics of autism for many, but highlights the unique evolutionary advantages autistic minds have offered humanity in the past and present.<\/p>\n

Instead of putting our energies into finding autism causes or cures and handwringing over an \u00a0(Silberman believes, false) autism \u2018epidemic,\u2019 we should invest more time and funds helping autistic individuals in the here and now address the real challenges they face by providing strong community supports so they can be productive, happy and healthy members of the community.\u00a0 Not only will this benefit those with autism and their families, Silberman convincingly argues, but communities that embrace and interact with autistic individuals and their unique and creative ways of thinking and being, will be enriched too.<\/p>\n

If you like the short way round a story and for an author to get to the point, Silberman\u2019s book is not for you.\u00a0 He\u2019s a story-teller\u2019s story teller, always taking the long way round, each anecdote presented with fulsome characters and plenty of rich historical detail.\u00a0 It\u2019s a delight to read in other words, and after 500 or so pages, he left me wanting more.\u00a0 Everyone with an interest in the history of science and medicine -how it has failed us, surprised us and benefitted us \u2013 should read this book.<\/p>\n

Silberman scours historical documents to find possibly undiagnosed cases of autism in several critical thinkers of human history.\u00a0 He makes a convincing case that Henry Cavendish, an 18th<\/sup> Century natural philosopher who influenced a range of important scientific disciplines and who was known for being the first person to \u201cweigh the earth\u201d -was quite possibly autistic. As was Paul Dirac, a theoretical physicists who won a Nobel prize in 1933 and whose work on the relationship between matter and energy helped usher in our modern digital revolution.\u00a0 These speculative after-the-fact diagnoses are part of Silberman\u2019s claim that autism has always been with us, and that even with many debilitating aspects, autism as a spectrum has also offered humanity evolutionary advantages, manifest today in the number of individuals with ASD in the tech and engineering sectors.<\/p>\n

But Silberman\u2019s book is a harrowing read too, and made me relieved that my own son was born in this time and place in human history \u2013 where the discovery of a cage in a classroom for a boy with autism is an anomalous barbarism and not the norm.<\/p>\n

In tracking the history of the diagnosis of autism, Silberman takes us to 20th<\/sup> Century Germany where Hans Asperger taught, studied and wrote about children with \u2018autismus\u2019 who \u201cdisplayed a similarly striking cluster of social awkwardness, precocious abilities, and fascination with rules, laws and schedules.\u201d\u00a0 Some were severely developmentally delayed and warehoused in asylums while others were intellectually gifted in specific domains.\u00a0 Asperger, Silberman shows, was really the first to fully understand the \u2018spectrum\u2019 aspect of autism \u2013 the wide ranging expression in each individual -and recognized that it was more common in the general population than originally believed.\u00a0 Asperger also recognized, even in those with extreme challenges, an \u2018autistic intelligence.\u2019<\/p>\n

This depth of understanding helps explain why Asperger struggled to keep the autistic children in his care from the crematoria created by the Nazi regime; they were built next to hospitals, clinics and long-term care facilities for children with physical and intellectual disabilities, transforming the care institutions into \u201cfactories of death.\u201d As Silberman notes, \u201cmore than 200,000 disabled children and adults were murdered during the official phases [of the program] and thousands more were killed in acts of \u2018wild euthanasia\u2019 by doctors and nurses on their own initiative.\u201d\u00a0 Jump to recent modern history, and Silberman\u2019s brutal descriptions of warehousing asylums, experimental shock and drug therapies, and imprisonment for those with autism, and it\u2019s pretty clear that as far as we have yet to go in understanding autism humanely, we\u2019ve at least come this far.<\/p>\n

Let\u2019s hope both Prizant and Silberman\u2019s landmark books help us take the next giant step forward in viewing those with autism as valuable members of our community that we have yet much to learn from.\u00a0 The full potential of our humanity may depend on it.<\/p>\n

 <\/p>\n

 <\/p>\n

A version of this essay appeared in the Chicago Tribune.<\/em><\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

Books reviewed: Uniquely Human: A Different Way of Seeing Autism by Barry M. Prizant, PhD with Tom Fields-Meyer (Simon & Schuster, 2015). NeuroTribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman, Foreword by Oliver Sacks (Avery, 2015).   This morning\u2019s news brought me a story about a school in Australia that […]<\/p>\n","protected":false},"author":913,"featured_media":292963,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"content-type":"","ep_exclude_from_search":false,"footnotes":""},"categories":[],"tags":[],"article-status":[],"irpp-category":[],"section":[],"irpp-tag":[],"class_list":["post-292965","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry"],"acf":[],"yoast_head":"\nWhy we should all embrace the neurodiversity movement<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/policyoptions.irpp.org\/fr\/2016\/02\/why-we-should-all-embrace-the-neurodiversity-movement-review-essay\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Why we should all embrace the neurodiversity movement\" \/>\n<meta property=\"og:description\" content=\"Books reviewed: Uniquely Human: A Different Way of Seeing Autism by Barry M. Prizant, PhD with Tom Fields-Meyer (Simon & Schuster, 2015). 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