Autism is a topic obscured by layers of myth, ideology, and delusion. To make progress, what we really need is not acceptance, but ACTION. That is, action based on reality.
By Jill Escher
Some are calling April “Autism Acceptance Month.” Okay, I’m not sure why we should be so accepting of a devastating disorder that plunges ever-growing numbers of individuals and families into chaos, dysfunction, dependence and poverty, but hey, I can play this game too.
If we are to “accept” autism, we should also be willing to strip away the nonsense — All with autism can gain competitive employment! Autism’s always been here but hiding under other labels! Autism is a gift! — and accept its painful truths. While Autism Month inanities endlessly pop up whack-a-mole style, I’ll discuss just three of the realities that require our full acceptance if we are to make true progress.
Terrible Truth #1: Autism is a scorching, catastrophic epidemic
It has become something like a religious dogma to blame autism’s explosive numbers on cultural factors like awareness and diagnostic shifts. Even USA Today recently reiterated the “nothing to see here” mantra in a sloppy piece (understandably) intending to refute the vaccine myth. While it’s obvious that vaccines have nothing to do with autism, it is equally true — and the evidence is painfully overwhelming — that we are nonetheless experiencing an unprecedented and torrential increase in serious neurodevelopmental pathology in our children.
The autism numbers are so horrific — edging toward 3% of all U.S. children, with no plateau in sight, up from .0466% in the 1960s according to a massive study of 30,000 children. That study found 21% of the 1960s autism cases had IQs in the normal range, and that if they used a more expansive definition including those with childhood schizophrenia and similar, the rate would have been .066% — nowhere near the 3% we’re seeing today in states like New Jersey and California.
Prevalence of strictly defined autism has skyrocketed in California’s Department of Developmental Services system, up about 3,700% over 34 years.
A new report on autism in California’s developmental services system (DDS), shows that strictly defined autism cases have climbed about 4,000% over the past three decades, with prevalence growing about 11% per year. About 1.5% of California’s 7-year-old children now have strictly defined autism. The special education data from that state suggests the broader definition autism is likely about double that.
Research has found that 59% of children diagnosed "not autistic" in the 1980s would meet today's criteria for ASD. Ok, I’ll take that, sure. Let’s attribute 59% of caseload growth to diagnostic modifications. Hey, let’s make it 100% just to be safe. What about the other 3,900%? Furthermore, repeated examinations of the DDS data have failed to show the caseload growth resulted from awareness, broadening diagnostics, or other factors like immigration. There is not an iota of evidence that our California DDS system has missed hordes of eligible autistic adults.
The CDC recently reported that in 2016 about 5% of all 8 year-old boys in New Jersey have autism, a horrific number that should send shockwaves around the country. And a new study has indicated that about 9% — 9%!!! —of all 8 year-olds in that state’s largest suburban school district have autism. Let me guess — even as special ed classes overflow with children with obvious learning and behavioral dysfunction we will continue, with no basis whatsoever, to blame diagnostic shifts.
Listen, part of me gets it. No one wants to feed the ridiculous antivaxx movement with alarming reports about ever-increasing prevalence. And who wouldn’t prefer a fairytale that autism is a benign difference rather than a serious disorder of brain development and behavior?
But unfortunately, no matter how we may try to justify the numbers with fluffy neurodiversity fantasies, the data are clear and unambiguous — we are suffering a monstrous epidemic, even if we don’t yet understand the causes of the dysregulated brain development at the core of autism. The disastrous long-term repercussions for our families and our society can hardly be fathomed.
Terrible Truth #2: Our country remains utterly unprepared for the tsunami of dependent young autistic adults
As we wallow in the toxic mudbath of epidemic denialism, we are squandering our pragmatic and moral imperative to invent an entire new system of supports for this unprecedented population of adults who cannot care for themselves. Instead of accepting reality, the popular refrain among mainstream advocates is that the answer is simple … drumroll please … “inclusion,” and to “living independently in the community”!
Ah yes, the Inclusion Delusion. Of course we want all people with disabilities to be free from discrimination and have as much access as possible to jobs, housing, and community activities. But here I borrow the immortal words of my late great friend Feda Almaliti, discussing her severely autistic son Muhammed (who perished with her in a house fire last year):
“I’m a realist, and Muhammed will never live independently in the community and I’m never going to be the next Beyoncé. So, if inclusion is the only answer for Muhammed, his future will look like today: isolated inside our house, with nowhere to go.”
Let’s get real. Inclusion is a soggy little band-aid on a gaping wound for most adults with severe autism. What they need most is a robust system of programs and supports catering to their wide variety of needs, along the full continuum of care. Instead, mainstream disability advocates routinely denounce autism-friendly programs and housing as “isolating” while promoting metrics that are utterly irrelevant to the person’s actual needs, well-being and quality of life.
While I would not suggest we need “Institutions” in the classic sense, I have no doubt we a vast network of “institutions” (small i) to cater to the growing needs. By these “institutions” I mean stable, strong nonprofits — I call them Essential Care Nonprofits — and other organizations that can provide wrap-around lifespan care across a wide array of settings. Think of the YMCA, Harvard University, Goodwill. These are all “institutions” serving important social needs, per the dictionary definition of a “significant organizations in a society or culture.” Where are the institutions capable serving the lifespan needs of the new throngs of severely disabled autistic adults? We must invent them, and fast.
Terrible Truth #3: Autism research, for all its blips of progress, has been a miserable failure
As a major proponent of autism research, this is a weird thing for me to say. But, honestly. What do we have to show for two decades of intensive research? Not much. Precious little understanding of causes, despite some nice progress in understanding neurobiological phenomena. No meaningful advances in terms of prevention. A bit of marginally helpful interventions. And pretty much the same basket of medical therapies we had when we started.
People might say, “But we’ve learned autism is genetic!” This is one of the nuttiest myths in autism. If you read the literature (as I do, obsessively), you will see that emphatically research has found autism is not genetic in any classic sense. Only about 10-15% of cases can be explained by genes, and a majority of those are not inherited from parents, but rather arise from newly occurring mutations. Plus a lot of those cases are syndromes that most people don’t really consider as autism as the primary diagnosis. Genetic research has also done nothing to translate into therapies. As Bryna Siegel, PhD has remarked in her book The Politics of Autism, the vast sum poured into genetics research “is unlikely to help any child with autism alive today.”
Then people might say, “But autism is strongly heritable — look at the heritability studies and recurrence rates among siblings!” This is indeed true. But there is no reason to think all this heritability has anything to do with common genes handed down through the generations. Instead, it is becoming increasingly clear that heritability can be the result of modern disruptions to the parental germline, something I have written about extensively in the scientific literature, for example here. But this topic remains sadly off-radar of mainstream autism labs, which seem intent on hunting down nonexistent or ultra rare variants of marginal relevance.
More importantly, we have seen little progress in terms of meaningful therapies. While behavioral approaches can be helpful in a subset of children and adults, particularly when it comes to making gains in circumscribed areas of pragmatic functioning, it is also routinely overhyped, particularly with regard to its efficacy in early intervention. Not a single medication has been seen to improve the core symptoms of autism (of course, it seems impossible to undo flawed hard-wiring of the brain). Cannabis is promising as a treatment for symptoms such as anxiety and aggression, but there is still little research and the medical establishment remains largely resistant.
The current movement to “accept autism” defies all logic and sense of moral responsibility to our children and future generations. Acceptance is like throwing a beach pail of cool water on the inferno of troubles that lay ahead of us. Instead we need ACTION, a robust master plan for autism — to finally root out its causes, to find pathways toward prevention, to develop effective therapeutics and high quality lifespan care options.
Jill Escher is President of the National Council on Severe Autism, a research advocate, a low-income housing provider for adults with autism, and the mother of two children with severe forms of autism.
Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.