As part of our 'autism around the world' series, Steve Silberman discusses attitudes towards autism in the United States in this exclusive article. Steve is the author of NeuroTribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently, winner of the 2015 Samuel Johnson Prize.
Author: Steve Silberman
Autism in the United States
Societal attitudes toward autism in the United States are undergoing a rapid, sweeping, and long overdue transformation in a very short time. For a decade and a half, the public discourse on the subject was dominated by a rancorous debate about vaccines. But now the repeated debunking of Andrew Wakefield's original MMR study, coupled with a dramatic resurgence of childhood diseases like measles and mumps worldwide, has made more parents, journalists, and politicians in America skeptical of the claims of the anti-vaccine movement.
They're also becoming more open to the idea that autism should no longer be regarded as a plague of the toxic modern world, but as a naturally occurring form of chronic disability that deserves support and accommodations across the whole lifespan -- the approach proposed by the so-called neurodiversity movement launched by autistic adults in the 1990s. This shift will have profound implications for research allocation, educational policy, media messaging by fundraising groups like Autism Speaks, and service provision in the coming years.
For a long time, the United States has lagged behind the United Kingdom in regarding autism as a lifelong disability. Several factors contributed to this delay. Until the 1980s, prominent experts in America like Leo Kanner, and the now-discredited celebrity psychiatrist Bruno Bettelheim, framed autism as a rare form of childhood psychosis triggered by overbearing "refrigerator" parents.
Mothers and fathers were routinely told to institutionalize their children, quietly remove their photographs from the family albums, and never speak of them again. This had the effect of rendering two generations of autistic people invisible to society at large as they grew into adulthood, while encouraging the tragic misconception among medical experts that autistic people are incapable of learning and social development.
Lorna Wing's introduction of the spectrum model, and the subsequent revision of the diagnostic criteria in The Diagnostic and Statistical Manual of Mental Disorders, enabled a broader range of autistic people to access services, just as Wing and her colleagues intended.
But partly because their work was relatively unknown in the United States, and because researchers are appropriately wary of drawing premature conclusions, the subsequent spike in diagnoses was framed in the mainstream media as a baffling mystery, while the notion that a runaway "autism epidemic" was underway was promoted by prominent parent-advocates like Jenny McCarthy and major fundraising organizations like Autism Speaks.
The alarms raised about the alleged epidemic had the unfortunate effect of rendering autistic people in previous generations doubly invisible. Websites committed to the anti-vaccine agenda routinely claimed that the reason there were so few resources already in place for autistic adults was that they had never before existed in history, a misconception fuelled by pervasive confusion between diagnostic labels that persisted into the 1990s. (Autistic children were often diagnosed with childhood schizophrenia, mental retardation, or minimal brain damage rather than autism, while autistic adults were frequently misdiagnosed as suffering from manic-depressive disorder or a host of other conditions).
Though the anti-vaccine movement is on the wane in the face of mounting evidence that its foundational premises were incorrect, its erasure of autistic adults from history has had an insidious aftereffect. Only a tiny fraction of federally funded autism research in the U.S. is devoted to improving the quality of life for autistic adults -- in fact, less than two percent of the total research outlay and falling, according to a recent government report. Now, even hardcore anti-vaccine advocates are realizing that their autistic children are not going to be "cured" anytime soon, and that they too need to start thinking about building long-term resources for their support.
Transitioning to adulthood
The situation that most autistic Americans currently face upon graduating from high school is commonly referred to by their families as "falling off a cliff." Though federal law requires every special education student to have a transition plan to prepare them for life after graduation, nearly half of autistic students don't. Indeed, one in four young people on the spectrum receive no services at all in their early 20s to assist them in living independently, transitioning into meaningful employment, or pursuing their education.
Those who do manage to enter the workplace tend to work only part time and/or earn much less pay than their typically developing peers. And conditions are even worse for young autistic people of color, who are offered even fewer resources for continuing education and transition after high school.
Bullying, discrimination, and exclusion from social groups remain significant challenges for autistic people of all ages. Nearly half of all autistic students in the U.S. report being bullied in high school, and the negative impact of these experiences carries forward through their lifetimes, contributing to decades of chronic anxiety, depression, and heightened risk for suicide.
Many autistic people also struggle with co-morbid conditions like seizures or overlapping cognitive disabilities like ADHD, but medication, counseling, and treatment can be very hard to come by. For lower income families, a significant number of options for early intervention in childhood -- including speech therapy, occupational therapy, and behavioral therapy -- remain frustratingly out of reach.
While more insurers have agreed to cover the cost of early intervention in recent years, often the only option available is Applied Behavioral Analysis, the quality of which varies widely depending on the training and ethics of the practitioner. Parents who would prefer to offer their children alternate forms of intervention that are regarded in a more favorable light by autistic adults, such as DIRFloortime or SCERTS, must often pay for it themselves.
Thankfully, there are signs of promise on the horizon. American media organizations that would never dream of writing a story about women's health or feminism while quoting only men now strive to include autistic voices in the national conversation. Parent-run organizations like the Autism Society of America are making an effort to feature more autistic speakers at their conferences.
Even Autism Speaks, the 500-pound gorilla of "autism awareness" in the U.S., which did so much damage in the past by falsely portraying the condition as a destroyer of marriages that "works faster than pediatric AIDS, cancer, and diabetes combined," shows signs of evolving. A senior executive from the group recently assured me that the word "epidemic" will no longer appear in its press releases, and its most recent advertisements are aimed at reducing the stigma around autism, rather than promoting it.
Democratic presidential candidate Hillary Clinton recently announced a detailed plan to provide autistic people and their families with better access to education, housing, employment, resources, and services. This would be done by broadening insurance coverage, enforcing and extending the Individuals with Disabilities Education Act and other laws, and launching an Autism Works Initiative. Clinton also proposed the first national survey of the prevalence of autism among adults, which could permanently lay the fears of an epidemic to rest and highlight the unmet needs of this vast and almost entirely overlooked population.
Crucially, Clinton's plan was drafted with input from the Autistic Self-Advocacy Network, the most effective autistic-run organization demanding a place at the table when public policy is set. Fellow Democrat Bernie Sanders and the Republican candidates would do well to emulate the depth and thoroughness of Clinton's plan -- including Donald Trump, whose anti-vaccine fear-mongering deserves to be tossed in the rubbish bin of history alongside Clinton's 2007-era recycling of Autism Speaks press releases.
The growing interest in neurodiversity in the U.S. is enormously heartening for me personally. Recently, after a presentation for my book NeuroTribes, a young father came up to me and thanked me for writing a book that gave him permission to love his son exactly as he is.
"It never occurred to me to see my beautiful boy as diseased or damaged," he told me. "But it helps to hear encouraging words."
Date added: 8 March 2016
The National Autistic Society offers international professionals a wide range of consultancy, professional development and training opportunities. For further information see the National Autistic Society website or email the training team.