By Anne Dachel
The spin never stops. These stories are proof that as the autism population ages out of school, we're going to convince ourselves that it's nothing to worry about--we've just never recognized autism in adults. John Donvan and Caren Zucker, those two compassionate advocates for the autism community are spreading this message far and wide. We didn't hear about autism until parents started to demand services and education. (The discredited claim that the MMR vaccine caused autism also helped publicize the disorder.) Donvan/Zucker are everywhere telling people autism is genetic and we can't tell if there's really more autism out there.
February 22, 2016, Spectrum News: Adults with autism face old age without much support
February 20, 2016, Santa Fe New Mexican: Autism authors, documentary maker in Santa Fe (John Donvan, Caren Zucker)
February 19, 2016, Arizona Republic: We love autistic children - until they grow up, By John Donvan and Caren Zucker
February 19, 2016, Some Autism Symptoms May Be Reversed By Gene Editing, Scientists Suggest
February 1, 2016, WBIR Knoxville TN: Autism Breakthrough of Knoxville allows adults to live independent lives
January 31, 2016, Buffalo News: Another Voice: ‘Loner’ adults may be exhibiting signs of autism
Fifty years ago, few people had heard of the term ‘autism,’ let alone known anyone with a diagnosis. Not surprisingly, many adults with autism over the age of 50 have never been diagnosed; others received their diagnoses late in life.
In either scenario, these adults enter old age facing a loss of independence that comes with unique challenges — ones that society is ill-prepared to address.
An article I wrote last year highlights how little we know about aging with autism. Since then, however, there have been a smattering of studies aimed at better identifying and understanding autism and aging, along with a spate of editorials about how sorely such studies are needed.
A parent survey released last November suggests 1 in 45 children in the U.S. falls somewhere on the autism disorder spectrum.
The official prevalence rate, according to the U.S. Centers for Disease Control and Prevention, is 1 in 68.
Whatever the number — which has been rising — it includes people with a wide range of developmental disabilities and significant social, communication and behavioral challenges — from a child who can’t speak at all to eccentric, antisocial geniuses, such as the writer and animal scientist Temple Grandin.
Some have suggested there is an autism epidemic, but that claim is in dispute, in part because the definition of autism has changed over time.
The disorder is genetic, although other factors may be involved. ...
The disorder has received a lot of attention in recent years as parents have fought for the rights of their autistic children to be schooled. The disorder also got a lot of press when a British gastroenterologist connected autism to the MMR vaccine in an article in The Lancet in 1998. The article was later retracted and the physician sanctioned.
Between now and 2026, some 500,000 younger Americans with the diagnosis will cross into adulthood, set at age 21.
Some will be capable of living fully independent lives, but a significant percentage will need support that mostly does not exist — the kind that would allow people like Nick, with moderate and even severe impairment, to hold jobs, live someplace nice, and pursue, to the maximum extent possible, the kind of fulfilled life most of us want out of our adult years.
As is said in the autism community, 21 is when a lot of autistic people “fall off the cliff.”...
In itself, this is a rather recent development, hard won by parents only during the last third of the last century, and still a work in progress in some settings and communities. But still, we have come a long way since the days when parents were under enormous social and professional pressure to keep their autistic children invisible – hidden at home, or locked away in institutions.
Key to the change in attitude was parents’ successful campaigns starting in the 1970s for legal mandates requiring public schools to educate their children, while addressing their specific challenges – challenges these same schools previously used to bar enrollment entirely.
Video: "I want to know my child is going to be taken care of when I'm no longer here. And that's a big thing. A big thing.
Some research reports that today, one in 68 children are diagnosed with autism spectrum disorder (ASD). Assuming a similar number of people would have carried the diagnosis in the past, had it been available, it is likely that today we all interact frequently with older adults who, like McNulty, are limited in their ability to engage with others....
Coleen Hanna, Ph.D., is a retired licensed psychologist with Constellation Energy in Baltimore who worked with adult employees on the autism spectrum.
Experiments carried out for four years in adult mice subjected to mutation of the gene showed for the first time that it is possible to reverse two of the main symptoms of autism: lack of social interaction and repetitive behavior