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Autism in the United States: Steve Silberman

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.

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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.

“Refrigerator” parents

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.

Anti-vaccine movement

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.

Interventions

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.

Autistic voices

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.

Political initiatives

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."

Further reading

Silberman, S., NeuroTribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently (Allen and Unwin, 2015)

Steve Silberman (website)

Steve Silberman (Twitter)

Date added: 8 March 2016

Comments

Thu, 17/03/2016 - 15:31

Fascinated by Mr. Silberman's article.  My dad was born in 1898 and I cared for him until he died at my home in 1993.  He served in the Royal Navy throughout WW1. After a discussion with our mutual G.P. he agreed that Dad had the classic symptoms of autism.  My son was born in 1853 and I could not speak until he was 9 or 10 and I was told by doctors that he was a 'write-off' in those days, yet eventually he graduated from University in computer studies.  One leading psychiatric nurse referred to my son as suffering from  childhood schizophrenia and was I a refrigerator mother?  I told him I was a 'smother-mother'. I was born in 1926 and knew I was 'different' but had successful careers as a police-sergeant and 30 plus years as a social worker.

AutismAdvocate

Thu, 17/03/2016 - 16:13

Although Dr Andrew Wakefield was scapegoated and very unfairly demonised.  Please see this video in which he is interviewed by Dr Joseph Mercola for the truth: https://www.youtube.com/watch?time_continue=1037&v=d40suCKnjbI

I know it's very hard for people to step outside the perceived safety of mainstream, but until they do they will not see the reality.

And yet another new study has found a connection to vaccines: http://www.newstarget.com/2016-03-09-polish-study-confirms-what-mainstream-medias-been-trying-to-hide-all-along-vaccines-are-dangerous.html

Autism is thought to be epigenetic.  Until full disclosure is available on all environmental elements that are contributing, science will not have full understanding.  There is a reason it is proving so hard to identify autism genes despite multiple attempts.  They are speculating that suspected autism genes have a cumulative effect and the ones they are fairly sure are implicated, only account for a tiny percentage of cases.

There are a variety of types of autism, they don't all have the same cause.  Some are syndromic and others are not.  You might be interested in US reported Ben Swann's video about the CDC cover-up of clear evidence of autism correlating with the MMR in 'isolated autism' (existing without any other condition, such as cerebral palsy) of all ages and of a particular age group of black children:

https://www.facebook.com/BenSwannRealityCheck/videos/1043476625717287/

There was also a study that busted the myth that better diagnosis was responsible for the increased rate of autism:

http://vaccineimpact.com/2015/new-study-dispels-myth-that-better-diagnosis-is-responsible-for-increase-in-autism/

And you may find these interesting too:

Vaccines trigger the immune system and prompt inflammation. http://hub.jhu.edu/2014/12/15/autism-brain-inflammation (Look at the excellent comments below that article too).

"Relevance of Neuroinflammation and Encephalitis in Autism"

"In recent years, many studies indicate that children with an autism spectrum disorder (ASD) diagnosis have brain pathology suggestive of ongoing neuroinflammation or encephalitis in different regions of their brains. Evidence of neuroinflammation or encephalitis in ASD includes: microglial and astrocytic activation, a unique and elevated proinflammatory profile of cytokines, and aberrant expression of nuclear factor kappa-light-chain-enhancer of activated B cells. A conservative estimate based on the research suggests that at least 69% of individuals with an ASD diagnosis have microglial activation or neuroinflammation."

That the immune system is often dysfunctional in autism is not disputed.  You have to ask why?  We are not intended to be born in nature with a dysfunctional immune system.  There will have been a trigger.

Going back to the official statistics of autism: http://bjp.rcpsych.org/content/194/6/500.long

"Prevalence of autism-spectrum conditions: UK school-based population study" 2009 study by Simon Baron-Cohen et al.

"By adjusting the estimate derived from the SEN register (that is, based on whole classes and not a 29% response) for the additional number of cases that would be expected if all the children were directly observed, the prevalence estimate is 157 per 10 000 or 1 in 64 (95% CI 99–246).

Overall, for boys and girls together, for every three known cases, there are at least two undiagnosed cases of autism-spectrum conditions in the primary school population, or a ratio of 3:2 (known:unknown). There is no evidence of a difference in the undetected estimate of cases for boys and girls, despite a clear difference in the overall ratio of boys:girls with autism-spectrum conditions."

These research findings of 1 in 64 are not the 1% epidemiology that official figures claim, it's getting close to 2%. And when you see the 2nd paragraph about all the undiagnosed children out there too, it's clear the official statistics given are inaccurate.  There is an increase of autism - the so-called autism epidemic. Clearly there is an environmental cause of autism causing these rising rates.  Also see:

http://www.ageofautism.com/2016/02/adult-autism-data-fabrication-in-the-united-kingdom-part-1.html

and http://www.ageofautism.com/2016/02/adult-autism-data-fabrication-in-the-united-kingdom-part-2.html

and http://www.ageofautism.com/2016/02/the-true-data-revealed-adult-autism-data-fabrication-in-the-united-kingdom-part-3.html

Even the NAS were pointing out the discrepancy in statistics in their 2002 report "Autism in schools crisis or challenge?"

AutismAdvocate

Thu, 17/03/2016 - 16:17

Just to add, there isn't really such a thing as "anti-vaccination".  People just want safe vaccinations (not containing fetal cells, animal cells, retroviruses and toxins like formaldehyde and mercury).  Even Dr Wakefield isn't anti-vaccination.  Watch the above video and you will see.