Two Views of Autism

In The Politics of Autism, I write:

The most basic questions trigger angry arguments. For instance, into what category do we put autism in the first place? In 2013, President Obama said that “we’re still unable to cure diseases like Alzheimer's or autism or fully reverse the effects of a stroke.” The language of “disease” and “cure” offends some in the autism community. “We don’t view autism as a disease to be cured and we don’t think we need fixing,” says Ari Ne’eman of the Autistic Self-Advocacy Network. “We do feel comfortable with the word disability because we understand what it means.” From this perspective, autism is difference that requires accommodation, not an illness that requires eradication. Adherents of this position liken autism to homosexuality, which psychiatrists once deemed to be a  disorder. Conversely, some parents take offense at opposition to a cure. “Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognize,” writes autism parent James Terminello. “Opposition to finding a cure is particularly hurtful to parents who still mourn the loss of the child that could have been. A line has been crossed.”

H. Holden Thorp has a piece at Science titled "Bridging Two Views of Autism."

Last week, Science, Science Advances, and Science Translational Medicine published an extensive set of papers from the PsychENCODE Consortium, a multi-institutional collaboration whose aim is to study the genetics of neuropsychiatric disorders such as bipolar disorder, autism spectrum disorder, and schizophrenia. The papers, collectively called PsychENCODE2, apply advances in single-cell and multi-omic technologies to postmortem brain tissue to elucidate factors that may help explain and develop treatments for neuropsychiatric conditions. The new insights gained from these considerable data will hopefully inspire new ways in which the clinical community can find common ground with researchers, something that is not always guaranteed in the contentious mental health field.

In autism, perhaps more than any other such condition, there is great tension between the researchers focused on the mechanisms and potential treatments of autism as a disease and the neurodiversity community that views autism as a difference to be accommodated, not a disease to be cured. As an autistic person and a journal editor, I live in both worlds and talk to folks on both sides. It is unlikely that many of the most passionate adherents to either model will overcome their disagreements anytime soon. The neurodiversity community, which believes that it is a biological fact that people experience and interact with the world around them in many different ways, views a disease model as disrespectful to the humanity of autistic individuals, whereas the medical model community is motivated by a desire to end suffering for autistic patients—especially those who require lifelong support—and their families. I take great inspiration from both camps: the exceptional neuroscience, on one hand, and the compassion and strength of the autism community, on the other. I’m also an optimist who is always looking for common ground, which does exist if you look for it.

Perhaps most notably, the continued development of a solid biological explanation for autism helps dispel early notions, propagated most prominently by psychiatrist Leo Kanner in the 1940s, that autism was a result of toxic parenting, not a biological difference, and that autism was a very narrow category applying only to individuals with considerable impairment. Kanner also claimed to have been the first to describe autism instead of the physician Hans Asperger, who had a broader vision for autism similar to the idea of the autism spectrum we consider today. Yet, Asperger referred patients to Nazi eugenics programs, which is partly why Asperger’s syndrome is no longer used as a diagnostic term for autistic individuals. Given this fraught background, it’s no wonder that there has always been tension in the field. Laura Klinger, executive director of the University of North Carolina’s TEACCH program that is rooted in the neurodiversity approach, agrees that establishing the biological basis of autism should not come with controversy. “Understanding how people become neurodiverse is an important research question,” she said.

Complicating matters, placement on the autism spectrum is often accompanied by other conditions, such as anxiety, depression, epilepsy, and gastrointestinal problems. Klinger and neuroscientist Simon Baron-Cohen, who leads the Autism Research Centre at the University of Cambridge, both told me that although autistic people may push back on the idea that there are biomarkers for autism, rejecting the notion that it is a disease that should be treated, more insight into the coexisting conditions may be welcomed. A PsychENCODE2 study suggests that further research may lead to the ability to categorize autism into subtypes that occur along with these other diagnoses. Klinger’s own research centers on therapy for anxiety, depression, and cognitive decline in autistic adults. “If there was something in the genetics that would allow me to be more personalized in my therapy,” she said, “that would be a great advance.” Such progress would help Klinger and other clinicians know when to prioritize treating autism with therapy or treating the coexisting conditions with pharmaceutical approaches.

More work lies ahead for better understanding the biological details of mental illness. At the same time, acceptance and support for individuals with mental health conditions and neurodevelopmental disabilities will hopefully continue to grow. Tension between how to respond to these two trends will persist, but the scientific community can work to find ways in which both are mutually reinforcing.

The Luck of Donald Triplett

In The Politics of Autism, I discuss evaluation, diagnosis, and the uncertainty of prevalence estimates.

At NYT, Maggie Jones remembers Donald Triplett.  The first person to have a formal diagnosis of autism, Triplett passed away this year.  

His mother was loving and determined, and she was from a prominent family in Forest, Miss. Her father was a founder of a local bank. Beamon was a top lawyer. They had money, and they had connections. In his law office soon after Donald came home, Beamon dictated a 33-page letter about his son’s medical and psychological history, his behaviors, aptitudes and challenges, to Dr. Leo Kanner, one of the world’s leading child psychiatrists, at Johns Hopkins Hospital.

Kanner met with the Tripletts and spent two weeks observing Donald, whose history and constellation of behaviors didn’t fit anything from the textbooks or the patients he had treated. Over the next few years, Kanner saw 10 more children who were similar to Donald in their “powerful desire for aloneness and sameness,” Kanner wrote. His article on what became known as autism was published in April 1943. Donald T. was Case No. 1: the first child formally diagnosed with the disorder.

Back home, Donald’s mother had pushed the public elementary school to allow him to attend, as Caren Zucker and John Donvan detail in their book, “In a Different Key: The Story of Autism.” He eventually graduated from high school and went on to a nearby college.

That was in stark contrast to the outcomes for many others at the time. There was no federal legislation mandating that children with disabilities had the right to public education until the 1970s. It would take years longer for the public to understand, through writers like Temple Grandin, that many people with autism had particular talents and intelligences and that the disorder was not rare. In the United States today, about one in 36 children have been identified with autism spectrum disorder, according to the C.D.C.

Donald Triplett had something else going for him.  He was white.  If he had grown up as a poor black child in 1940s Mississippi, his outcome would have been grim. 

Donald Triplett, RIP

  In The Politics of Autism, I discuss evaluation, diagnosis, and the uncertainty of prevalence estimates.

In a Different Key, by John Donvan and Caren Zucker:

Nearly seventy-five years ago, Donald Triplett of Forest, Mississippi became the first child diagnosed with autism. Beginning with his family’s odyssey, In a Different Key tells the extraordinary story of this often misunderstood condition, and of the civil rights battles waged by the families of those who have it. Unfolding over decades, it is a beautifully rendered history of ordinary people determined to secure a place in the world for those with autism—by liberating children from dank institutions, campaigning for their right to go to school, challenging expert opinion on what it means to have autism, and persuading society to accept those who are different.

  WLBT in Jackson, Mississippi:

 He’s the subject of a popular book, a PBS documentary, and countless magazine stories and medical journal articles, and his name has its own entry in the Encyclopedia Britannica
But to employees at the Bank of Forest, he was simply, “Don.” 

Donald G. Triplett, 89, who worked 65 years at the bank in Scott County died Thursday morning, three months after collapsing in an airport. Triplett was known worldwide as “Case 1″ - the first person to be diagnosed with autism.

Autism Books

In addition to The Politics of Autism, there are other new books dealing with autism.

Steve Silberman's Neurotribes:

Going back to the earliest days of autism research and chronicling the brave and lonely journey of autistic people and their families through the decades, Silberman provides long-sought solutions to the autism puzzle, while mapping out a path for our society toward a more humane world in which people with learning differences and those who love them have access to the resources they need to live happier, healthier, more secure, and more meaningful lives.

And most recently, In a Different Key, by John Donvan and Caren Zucker:

Nearly seventy-five years ago, Donald Triplett of Forest, Mississippi became the first child diagnosed with autism. Beginning with his family’s odyssey, In a Different Key tells the extraordinary story of this often misunderstood condition, and of the civil rights battles waged by the families of those who have it. Unfolding over decades, it is a beautifully rendered history of ordinary people determined to secure a place in the world for those with autism—by liberating children from dank institutions, campaigning for their right to go to school, challenging expert opinion on what it means to have autism, and persuading society to accept those who are different.

At The Smithsonian, Donvan and Zucker write of Samuel Gridley Howe:

As far as we can determine, we are the first to suggest the diagnosis for Howe’s numerous cases, who appear to constitute the earliest known collection of systematically observed people with probable autism in the United States. We came across them during the fourth year of research for our new book, In a Different Key: The Story of Autism, by which time our “radar” for autistic tendencies was fairly well-advanced. Granted, retrospective diagnosis of any sort of psychological state or developmental disability can never be anything but speculation. But Howe’s “Report Made to the Legislature of Massachusetts upon Idiocy,” which he presented in February of 1848, includes signals of classic autistic behavior so breathtakingly recognizable to anyone familiar with the condition’s manifestations that they cannot be ignored. Plus, his quantitative approach vouches for his credibility as an observer, despite the fact that he believed in phrenology, which purported to study the mind by mapping the cranium, long since relegated to the list of pseudosciences. Howe’s final report contained 45 pages of tabulated data, drawn from a sample of 574 people who were thoroughly examined by him or his colleagues in nearly 63 towns. The tables cover a wide range of measurements as well as intellectual and verbal capacities. Howe, extrapolating, estimated that Massachusetts had 1,200 “idiots.”

Autism, Eugenics, and Euthanasia

In The Politics of Autism, I write about the dangers of eugenic solutions.

At The Independent, Mathieu Vaillancourt writes of forbidding autistic people to donate to sperm banks.

The other problem is the whole concept of eugenics behind this. It's indeed true that autism is a complex and umbrella-like condition which may seems scary at first glance. Many with autism face massive challenges - but others who have dyslexia, autism (or any other neurological disorder) are able to have great, fulfilling lives and possess a sense of responsibility, loyalty and precision that lots of people would do anything to have. To label people with dyslexia or Asperger Syndrome as impure makes this look like a dodgy remake of an era not so long ago, when some governments wanted a ''purer'' race and sought to sterilize people against their will, or even ''euthanize'' them.

He is not exaggerating.  In Buck v. Bell (274 US 200), the US Supreme Court upheld involuntary sterilization. Writing for the majority, Justice Oliver Wendell Holmes declared:

It is better for all the world if, instead of waiting to execute degenerate offspring for crime or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the Fallopian tubes. Jacobson v. Massachusetts, 197 U.S. 11. Three generations of imbeciles are enough.

And "respectable" thought leaders wanted to go even farther, to the killing of defectives.   A 1942 debate in the American Journal of Psychiatry focused on on whether the government should eliminate the  "feebleminded." Neurologist Foster Kennedy argued in the affirmative.Leo Kanner, who would soon publish the landmark article launching the study of aut ism, argued against killing.  An anonymous editorial sided with Kennedy’s position.

This debate was hardly a "one-off."

Consider William G. Lennox.  He was not some random nut, but a distinguished neurologist who did important work on epilepsy.  (To this day, the American Epilepsy Society bestows an annual William G. Lennox Award.)  In an article in autumn 1938 issue of The American Scholar, the official publication of Phi Beta Kappa, Dr. Lennox wrote of people "confined in institutions where they are never seen by the public."

They are the congenital idiots or monsters, the result of some slip of the hand of Him who made them; lumps of matter in human form but without human mind. What should be done with these? Of many defectives it can be said that human judgment is subject to error and that cures sometimes occur when least expected, but for this lowest group there can be no such plea. A clockcase without works can never tell time. Physicians are bound by inherited ethical standards and the motto "They shall not die." Raymond Pearl, the biologist, has this to say:

These unfit organisms are kept alive by the rest of society for no realistically demonstrable reason other than that they were once born, and by being born, somehow placed upon the rest of mankind what has gradually come to be regarded as a permanently binding obligation to see that they do not die. It is difficult to convince a biologist that a social philosophy will endure for any great length of time that deliberately and complacently loads upon the already weary backs of the able and fit an evergrowing burden. . . . No species or variety of plant or animal has long survived that was intrinsically incapable of making its own living. There is somewhere a biological limit to altruism, even for man.3

"Very well for another person's child," says the objector, "but what if it's your own? " Memory flicks past rows of writhing, incontinent, vacant-eyed, speechless bodies, distressing to the point of nausea, and I answer "I should rather see a child of mine in its coffin."

Dr. Lennox proposed actual death panels:

Decisions involving life and death are, however, reached daily by legal processes. The selection of the congenitally and hopelessly mindless for elimination would offer no more difficulties than their selection for lifelong incarceration. A court-appointed medical committee would be sufficient. Laws would of course need to be revised, and prior to this public opinion would need to be awakened. The essential prerequisite to human progress in any field is willingness to face realities and to work out fundamental rather than temporary solutions of problems.

The Four Kingdoms

NIMH director Thomas Insel writes:

In the spirit of mapping the autism landscape and finding some common ground, I suggest four perspectives that currently separate the communities interested in the autism spectrum. The language, assumptions, literature, and societies that have grown up around each of these perspectives are so distinct, they have begun to represent different countries or kingdoms. Each has its own truths. And each too often fails to understand or even recognize that their truths may not apply to all kingdoms.

Illness
Autism was first described as a developmental disorder by Leo Kanner, a child psychiatrist, in 1943. In the 70 years since, research on autism has largely focused on autism as an illness. The illness kingdom is largely populated by clinicians, researchers, parents, and some people with autism. They view autism as a brain disorder in which the language of medicine applies, with a focus on improving diagnosis and interventions, and cure as the ultimate goal.
...
Identity
Self-advocates with autism, like self-advocates in the deafness community, have replaced the medical model of illness with the language of diversity and identity. They, along with many in the educational and disability communities, view autism as a difference in need of accommodation, not a disorder in need of cure.
...
Injury
One of the more heated arguments surrounding autism has been on the purported role of vaccine injury as a cause. This kingdom was founded by parents who report marked regression after the 18-month vaccination series, when their previously interactive, communicative toddler withdraws and stops speaking.

... 

Insight
Just as scientists have studied blindness to understand the visual system, scientists in the kingdom of insight assume that the study of people with social and communication deficits is a remarkable opportunity to understand the social brain. This kingdom belongs to social neuroscientists, using tools from cognitive science, neuroimaging, and neuroanatomy.

The First Diagnosis

In The Atlantic, John Donvan and Caren Zucker find the first person who ever received the formal diagnosis of autism:

The authors use the surprisingly happy story of Donald Triplett to make some observations about adults with autism, most of whom do not fare as well:

[Dr. Peter] Gerhardt, who is a former president of the Virginia-based Organization for Autism Research and is now developing a program focused on adolescence to adulthood at the respected McCarton School in New York, is considered among the top experts in the country working with adults who have autism. But he jokes that this is chiefly because he’s never faced much competition. “I have an entire career,” he says, “based on people not wanting my job.” Child development is the hot area in autism research; working with adults, Gerhardt says, “is not a career move.” Adults present greater challenges: they are big enough to do real violence in the event of a tantrum; they are fully capable of sexual desires, and all that those imply; and they’re bored by many of the activities that can distract and entertain children with autism. “People want to treat these adults like little kids in big bodies,” Gerhardt says. “They can’t. They’re adults.” As such, he argues, they’re equipped, as much as any of us, with the recognizable adult aspiration of wanting to “experience life.”

...

This leads to the question of where they will live. As it is, 85 percent of adults with autism still live with parents, siblings, or other relatives. But what happens when that is no longer an option? Large-scale warehousing is gone—and good riddance, most say. An obvious alternative is residential arrangements offering multiple spaces to people with autism, who can share support services under one roof in a setting that really is a home. At present, however, given both start-up costs and resistance from neighbors, the number of spaces in such homes is limited, and landing a spot can be extremely difficult: nationally, more than 88,000 adults are already on waiting lists.

All of which leads to an unsettling answer for those parents asking what happens, after they die, to their children with autism. We don’t really know.

Autism Clusters

The San Jose Mercury News reports:

Silicon Valley's concentration of autism cases has triggered a spate of theories, from neighborhood contamination to a "geek gene." But a team of researchers from the University of California-Davis has found one factor that unites this and nine other California clusters of cases of the developmental disability: parental education.  College-educated parents of autistic children are more likely to fight for a diagnosis — and seek the state-funded services that accompany it — than less-educated parents, according to the team.

See the MIND Institute release here.

Belief in a link between parental intelligence and autism goes back to Leo Kanner, who first described autism in 1943.  As Laura Schreibman explains in The Science and Fiction of Autism (Harvard University Press, 2005, p. 82):

[T]here may have been a sampling error in Kanner's first group of parents.  It is certainly more likely that an intelligent, well-educated parent would have been aware of Leo Kanner, the leading child psychiatrist of his day, and that a parent who could afford to take his child to Johns Hopkins University to be seen by Dr. Kanner must have had above-average financial resources.