Joe Amon/The Denver Post via Getty Images Seven-year-old Connor talks to his father, David Bukovinsky, as they get ready to start their day.

The errors — and revelations — in two major new books about autism

This week saw the publication of the second opus-length autism history from a major publisher in the past year. Just as the autism world was beginning to absorb the bombshell of Steve Silberman’s NeuroTribes, published in August, Caren Zucker and John Donvan released In a Different Key.

As both an autistic person and someone who spends his days working on autism and disability policy, I’m fairly familiar with the history of autism (and am a minor character in each book). But both contain surprising new revelations.

Two books, two approaches

Silberman made his name as a reporter for Wired magazine. Something of a lifetime outsider, he moved to San Francisco in the late ’70s so that he could live “a gay life without fear.” In many occasions throughout his book, his experiences as a gay man support how he tells the story of the autistic community.

Perhaps more than any other non-autistic writer to date, he understands the unique frustrations so many autistic persons feel watching a core aspect of our lives presented to the public as a burden and public health risk. While there are obviously major differences between autism and LGBTQ issues — autism often encompasses more significant impairment, obviously — there are also real commonalities, which Silberman highlights. Both groups contend with public disputes over the essential nature of our conditions, whether they can be corrected by behavioral or biomedical approaches, and whether we should be considered reliable narrators of our own experiences.

Silberman’s background shines through especially poignantly in the parts of autism history that intersect with LGBTQ issues. Nowhere does this come through more so than in the chapters on Ivar Lovaas — father of the most popular modern autism intervention, applied behavioral analysis — who in addition to attempting to “recover” autistic children through brutal means, led with George Rekers the infamous UCLA Feminine Boys Project, endeavoring to do the same for young children deemed “at risk” for homosexuality.

Silberman’s book also covers more than a century of autism history, indicting some of the reputed giants of the autism world — not just Lovaas but also Leo Kanner and Bernie Rimland.

It reveals for the first time evidence that Kanner, popularly considered the discoverer of autism, took much of the underlying work from Hans Asperger, whose Jewish chief diagnostician, George Frankl, Kanner helped saved from the Nazis and would later employ and learn from.

 Leo Kanner, circa 60 years of age, 1963.

Prior to the publication of the book, most historians considered Kanner and Asperger’s discovery of autism to be nearly simultaneous and the result of independent research by each. Kanner’s friends and defenders maintained throughout his life that he had never read Asperger’s work, a dubious claim in light of the discovery of the Georg Frankl connection.

This matters in part because, as Silberman documents, Kanner laid out an overly narrow understanding of the autism spectrum, in contrast to the more inclusive vision of Asperger and Frankl’s work. Kanner, who is correctly identified in the book as an original source of the discredited idea that parents were at fault for their child’s autism, is described within NeuroTribes as acting to emphasize the rarity of the condition he identified, in part so its discovery could be credited as unique to him.

Silberman displays rare empathy for the autistic people in his narrative, describing both nonverbal teenagers and eloquent activists with a deep respect and complex characterization. The book highlights the horrifying impact of the Nazi euthanasia program and the American eugenics movement alike, and accurately ties the wide-scale institutionalization of disabled Americans to the eugenics project. Even people without a background in the autism world will be fascinated to learn about Bill Sackter, a man with an intellectual disability whose friendship with filmmaker Barry Morrow led to the movieRain Man.

While Sackter had been institutionalized as a child as a “burden on society” and faced horrific abuse till he left for life in the community, Rain Man ended with the autistic character being returned to institutional life. Silberman identifies this as the influence of Bernie Rimland, one of the leading parent advocates of the time and an ardent defender of both institutionalization and the later discredited theory that autism was caused by vaccination.

If Silberman’s NeuroTribes serves as an indictment of the past 50 years of autism history, Zucker and Donvan have appointed themselves as passionate counsel for the defense.

The authors of each book could not be more different in the life experience they bring. Donvan and Zucker both have autistic relatives, and Zucker has reported on autism from that perspective for some time, serving as producer of the PBS NewsHour Autism Nowseries in 2011.

NeuroTribes and In a Different Key clash most directly in their characterizations of Kanner and Asperger, the two figures associated with the beginning of autism history. In a Different Key presents Kanner as a much more sympathetic figure and does not include any information on Georg Frankl. It also presents Asperger as a Nazi collaborator. To date, the evidence on this question has not yet been made available to the public (Zucker and Donvan’s source, a scholar from Vienna, declined to provide his archival material to Silberman and other researchers), but it raises concerning questions that should certainly be explored in more detail.

Parental advocacy has been important

Seven-year-old Connor talks to his father David Bukovinsky as they get ready to start their day.
Joe Amon/The Denver Post via Getty Images Seven-year-old Connor talks to his father, David Bukovinsky, as they get ready to start their day.
Caren Zucker and John Donvan are clearly coming from a parent point of view. Writing early in the book about Mary Triplett, mother of Donald (one of the first documented cases of autism in the United States from the 1930s), Zucker describes Triplett’s frustration in terms that seem intimately personal to her, the mother of an autistic child herself:

He had never really cried for her, never fixed his gaze on her and shared a moment of tenderness. Not once during this ride would he look up at her and smile. … That was the hardest thing for Mary — Donald’s utter emotional indifference to her presence.

The passage hints at an automatic empathy for parents that persists throughout the text. At times this is an asset, though it frequently leaves the book curiously ill-equipped to understand or accurately reflect the criticisms of the autism parent movement from the growing autistic adult community.

This reflexive sympathy becomes more concerning as the book goes on. On page 142, the authors recount a disturbing amount of justification for the murder of Dougie Gibson, a 13-year-old autistic boy killed by his father. The book characterizes the death in terms of a mercy killing, a common narrative adopted by a media quick to presume that it is not the deaths but the lives of disabled children that represent a tragedy.

In a Different Key acknowledges no stakeholder more important than parents of autistic children. And certainly parents are important. Both books reflect the extraordinarily impactful role parent advocacy played in securing educational access and debunking the immensely damaging “refrigerator mother” theory, popularized by Dr. Bruno Bettelheim, that libeled parents as the cause of their children’s diagnosis.

But autism happens to autistic people, not their parents

The unique cognitive and sensory profile associated with the diagnosis, the communication challenges, and the sense of alienation from mainstream society that struggles to understand us are all autistic experiences, not parent ones.

A decade ago, when the autistic self-advocacy movement was just beginning to enter the realm of politics, many of the early autistic activists and bloggers organized around the sense that parent leaders were writing us out of our own stories.

At the time, autism parent advocacy was particularly brutal. In 2003, the head of the Autism Society of Canada testified to the Canadian Senate, “Autism is worse than cancer in many ways, because the person with autism has a normal lifespan. The problem is with you for a lifetime.”

This was not an opinion grounded only in hyperbole — only seven years earlier, the Autism Society of Montreal had come to the defense of Danielle Blais, a mother who had drowned her 6-year old autistic son, Charles-Antoine Blais, in the bathtub. Autism Society officials took up a collection for Ms. Blais, testified for her in court, and ultimately ensured that she would serve no jail time and would enter the organization’s employ as an official representative.

Throughout the 1990s and early 2000s, disability rights advocates tried and failed to convince the Autism Society of America to prohibit the Judge Rotenberg Center — a facility in Canton, Massachusetts, infamous for using electric shock devices on children with disabilities as a means of pain-based behavior modification — from exhibiting at its conference. ASA refused to turn away JRC for years, citing the organization’s “options policy” affirming the right of parents to select virtually any intervention for their child.

At the Association for Behavioral Analysis International, the major trade association for applied behavioral analysis providers, JRC was an exhibitor and conference sponsor as recently as 2015, at the same time as it was under investigation from the Food and Drug Administration, the United States Department of Justice, and the United Nations special rapporteur on torture.

In the words of one parent advocate writing in the Washington Post in 2006, “Because autistic kids don’t much notice or care about the outside world, autism actually ‘happens’ to the sentient human beings around them.” And to these uncaring, nonsentient beings, all things could occur.

We have made progress since those days. Parental narratives are still more common, given the comparably privileged economic position and communication skills well-heeled leaders of many national autism parent organizations enjoy.

But more people are recognizing that parent voices are only a part of understanding autism — and when they refuse to cede space for autistic adults to tell their story, they can actually make the lives of autistic people (of all ages) worse.

The neurodiversity movement

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This was the point that Jim Sinclair set out to make in a seminal 1993 conference presentation that kicked off what would become the neurodiversity movement. They (Sinclair is intersex) said, “When parents say, ‘I wish my child did not have autism’ what they’re really saying is, ‘I wish the autistic child I have did not exist.’”

Donvan and Zucker disapprove of these seemingly harsh remarks to parents. “Sinclair was not a father,” they chide, and call it “jarringly reminiscent of Bruno Bettelheim’s discredited claim from the 1960s that mothers harbored a secret wish ‘that it would be much better if the child wouldn’t live’, thus causing autism in their children.”

But it unquestionably resonated with countless autistic people across the globe. The modern autistic adult community is built on the ideas that Sinclair promoted to such controversy all those years ago. Those words captured how a rising generation of autistic people felt about the unfolding conversation about autism going on “about us, without us.”

In 10 years of advocacy within that movement, I can attest that the bulk of the work I and my colleagues do is about expanding services and making more support available for autistic people and our families.

We work very closely with parent and provider groups that share our values, including the largest and most mainstream entities in the intellectual disability and Down syndrome advocacy movements, which have moved away from the fear and pity tactics that distorted autism advocacy.

Nor does the neurodiversity movement “argue that autism is not essentially a disability,” as Donvan and Zucker described us in Smithsonian Magazine this month. Actually, the very first piece of legislation the Autistic Self Advocacy Network worked on when I came to Washington was the ADA Amendments Act of 2008, which affirmed that autism qualified for disability rights protections under federal law.

Unlike the deaf culture movement, for example, autistic activists see no contradiction between being part of the disability community and believing that there are more important goals for treatment and services than “normalcy.”

However, the neurodiversity movement has serious concerns on the current state of the autism research agenda. The National Institutes of Health devoted only 2.4 percent of its autism research budget to improving services for autistic people across the lifespan and only 1.5 percent toward adult issues. (That’s according to the Interagency Autism Coordinating Committee [IACC], the federal advisory committee tasked with advising the government on autism policy, in 2010.)

A vastly disproportionate focus of autism research is on genetics, and the Autistic Self Advocacy Network and other neurodiversity groups have raised concerns about the eventual ethical implications of that research, as the technology begins to be leveraged for things like prenatal testing or sex selection preimplantation genetic diagnosis(already occurring in Australia as a speculative means to avoid autism).

Working toward any parity on investing in the needs of autistic people today will be a generational project, and that’s to say nothing of putting safeguards on research with concerning future applications.

Despite that, In a Different Key presents the neurodiversity movement as a grave threat to autism research’s future. Activists should be able to question the priorities of the current research agenda without being presented as against investing in autism science altogether.

When “therapy” is actually abuse

A researcher slaps a boy
Life magazine via Neurodiversity.org An image from a Life magazine profile on autism treatment.

Neurodiversity tries to hold the autism parent and provider worlds accountable for promoting therapies that have often crossed the line from assistance into abuse.

In the name of cure and attempting to “recover” autistic children, extraordinary abuses have been and continue to be inflicted on autistic children.

Ivar Lovaas (who In a Different Key quotes referring to autistic children as “little monsters … [with] hair, a nose and a mouth —but they are not people in the psychological sense”) was willing to inflict extraordinary abuse on those under his care. As both books recount, Lovaas was unapologetic about his methods, publishing pictures of his staff slapping children in a glowing 1965 Life Magazine profile called “Screams, Slaps & Love.”

Today autistic children are less likely to receive such draconian treatment (though it is still not unheard of), but they are often victims of smaller, more intimate abuses.

Modern applied behavioral analysis providers frequently focus on training autistic children to imitate the trappings of normalcy: eye contact, holding still rather than rocking back and forth, maintaining “quiet hands” rather than flapping and other self-stimulatory (“stimming”) behavior.

Their methods range from the neutral to the horrifying, but few are given the training or conceptual framework to question their goals. Eye contact or repressing stimming behavior can be distracting and stressful, depriving an autistic child or adult of the energy and focus necessary for academics.

Is it productive to teach a child to sit still and make eye contact if in doing so he is less able to pay attention to the conversation he’s listening to? We have a saying in the autistic community — “I can look like I’m paying attention to you, or I can actually pay attention to you.”

Many unusual autistic behaviors are important and adaptive in nature. Hand flapping, rocking, and other forms of stimming serve as important means of emotional and sensory regulation for autistic children. For that matter, there are real consequences to being taught from a young age that the way you move and interact is irretrievably wrong. Autistic adults often report lasting trauma associated with childhood experiences with behavioral interventions.

(In 2012, the Autistic Self Advocacy Network published the anthology Loud Hands: Autistic People, Speaking, collected writings from autistic adults about such experiences — the title we chose was a subversive play on the common “quiet hands” command to avoid stimming in special education classrooms.)

These interventions are often delivered in self-contained, clinical environments, depriving autistic children of valuable class or community time that might better allow them to access the general education curriculum or more fully experience family life.

To their credit, Donvan and Zucker do acknowledge Lovaas’s reprehensible use of pain as a means of behavior modification. But they seek to swiftly divorce it from modern applied behavioral analysis, which is presented as having little to do with its early incarnations.

This is not borne out by the research. A 2008 study published in the Journal of Positive Behavior Interventions surveyed leading experts in the applied behavioral analysis field and found that 26 percent view contingent electric shock as an acceptable treatment methodology, 43 percent viewed physical punishment as acceptable, and 34 percent viewed sensory punishment as acceptable.

Does this mean that every therapist who offers families support is a modern-day Marquis de Sade? Of course not. Even the most radical of autistic and neurodiversity activists support some form of early service provision for autistic children. Some, like myself, benefited as children from more wholesome approaches to educating autistic kids, like speech and occupational therapy. Others had positive experiences with progressive providers of all kinds, including some who come from behaviorist backgrounds.

Most of the Autistic Self Advocacy Network’s work is about advocating for expanding the availability of services, to assist families who might otherwise face significant costs in accessing them.

But the days of pain disguised as treatment are by no means over. The Association for Behavior Analysis International still articulates protocols for and defends the use of aversives, contingent food programs, seclusion, and planned restraint as a form of treatment (as distinguished from its emergency use to prevent imminent risk of harm). Disabled children — especially autistic ones — are subject to abysmally poor standards of ethics and human rights by many providers.

I recall being told by an FDA official some years ago, when we approached the agency to ask for a ban on the Judge Rotenberg Center’s contingent electric shock device, that we should first consider research randomly assigning children between contingent shock and positive educational methods, to see who had the best outcome. I somehow refrained from asking if he planned to volunteer for that particularly joyful experiment.

Different standards for autistic and non-autistic people

One bird sitting on a wire far away from many other birdsShutterstock

At times, I cannot help but feel that Zucker and Donvan hold autistic people to a higher standard of interpersonal behavior than they do their non-autistic protagonists. Lovaas, who overall is one of In a Different Key’s heroes, is described as “entertainingly reckless in the language he used to dismiss anyone who questioned his research methods or findings.” These traits are seen as charming quirks that only strengthen Lovaas’s role as one of the book’s central protagonists.

In contrast, the authors paint a very different picture of a 2009 exchange I had with Elizabeth Bell, an activist and the wife of Peter Bell, Autism Speaks’ then–executive vice president, at a public forum. Both Elizabeth and Peter Bell have been ardent critics of the overwhelming scientific consensus that autism is not caused by vaccination. They have also been two of the leading voices in the cure movement since the 1990s. I respect their passion but disagree with their views on both the nature of autism and the appropriate agenda for autism research.

…His determination and his integrity as a campaigner were unassailable. He refused to mince words, fudge facts, or make plays for the affection of his audience. Even face-to-face with an autism mom, whose total love for her child and despair over his future should have been evidence, Ne’eman was unyielding. He did not flinch, offer empathy, or soften his tone. Experiencing that, Bell went home thinking that people who still seriously doubted that Ne’eman had true autistic impairments were wrong. The total imperviousness she had witnessed appeared to her to reflect not simply Ne’eman’s convictions, but also an inability to take on a point of view other than his own. This, she knew, was considered a classic autistic trait —one that Simon Baron-Cohen had referred to as “mindblindness.”

I can’t speak to what empathy I did or did not offer Elizabeth Bell in July 2009. If memory serves, the exchange was a polite disagreement, one of many I have had with Autism Speaks’ leaders over many years.

But reading the description of the exchange, I’m left with a feeling that Bell, and, by extension, the authors who carry her words, feels a strange sense of entitlement to define the public conversation on autism without interference from autistic voices.

They seem almost scandalized that someone is disagreeing with them in public.

One is left with the impression that an autistic person expressing a strong contrary opinion is mind-blind, whereas a researcher or parent who does so is merely passionate.

The neurodiversity movement cannot be ignored

"NOTHING ABOUT US WITHOUT US"
Autistic Self Advocacy Network A screenshot from the website of the Autistic Self Advocacy Network

 

I would be remiss if I let my personal distaste for how Zucker and Donvan characterize my community get in the way of acknowledging that their book is a part of a promising trend of growing interest in the history of autism and autistic people. In a Different Key does have a few unique gems, not all of which made it into the generally superior NeuroTribes. I learned a great deal about many admirable leaders in the parent movement who played an integral role in the fight to open up public schools, to whom I — who benefited from special education services as a child — owe a vast debt.

And while Zucker and Donvan wear their allegiances on their sleeve, I can hardly fault them for doing so, as I certainly do the same. Like Autism Speaks, the National Autism Association, and other parent groups associated with the cure perspective, Zucker and Donvan are capable messengers of a very particular perspective in the autism world.

It is not my perspective — but unlike a decade ago, it can no longer pretend to be the only one in the autism conversation.

Patronized to and disliked though we may be, the neurodiversity movement’s presence inIn a Different Key is indisputable. The members of the parent culture that dominated the public vision of autism with an exclusive focus on young children and a cure are awakening to a reality in which they must share power with autistic advocates and the growing number of parent and professional allies of the neurodiversity movement. Yesterday, they ignored us, today they laugh at and fight with us, but tomorrow? We will just have to see.

Ari Ne’eman is the president of the Autistic Self Advocacy Network and served as one of President Obama’s appointees to the National Council on Disability from 2010 to 2015.

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