By Anne Dachel
Looking back over the last several weeks I’ve noticed a steadily increasing trend in the news—more and more stories are coming around the country talking about the aging out of the autism generation. It’s not surprising that this isn’t a cause for alarm. Mounting numbers of children with autism have been calmly accepted for the last several decades by doctors, health officials, and the media. And of course, children grow up, so this is only to be expected.
Starting in the 1980s the autism rate began an ever-ascending climb.
Although health officials have been at a loss to explain why so many children are now disabled with something called autism, they’ve never expressed any alarm over numbers. They’ve also never speculated on what’s going to happen when all these children reach adulthood. For years the medical community has been credited with “better diagnosing” of a disability that’s always been around. In other words, we’ve always had people like this in society-- we just didn’t call it autism. This explanation has been very useful in order to buy time for officials. If autism has always been here, then there’s no reason to be worried. The ever-increasing number of vaccinations our children receive isn’t a real factor if we’ve always had autism like this.
The trouble is, no one has ever had to prove the claim of “no real increasing—better diagnosing.” No health official has ever produced a study showing us the one in 166, the one in 150, or the one in 88 adults with autism. That hasn’t stopped authorities from claiming that they’re out there somewhere, undiagnosed or misdiagnosed. It would be especially interesting to see the 40, 60, and 80 year olds with classic autism, whose symptoms are evident to all. It would be of real significance to find middle aged and elderly people whose health history also included normal development until about age two when they suddenly and inexplicably lost learned skills and regressed into autism.
Regardless of the lack of any proof for the claim of no real increase, the idea is a constant feature in autism stories. So how do reporters explain the lack of services for adults with autism if adults with autism have always been here? The strange thing is, they don’t. We’re told about the problem but there’s no explanation for the wave of young adults with a disorder we’ve never really had to deal with before in the adult population.
Here are some examples of what I’m talking about.
“Of special interest is the growing number of children being diagnosed with autism – an estimated 1 in 49 in New Jersey – who are already a challenge to school officials. Jim Thebery, director of the county’s division on disability services, points out that 80 percent of those with autism in New Jersey are under age 21, ‘There’s going to be a tsunami of people with disabilities out in the community and needing services,’ Thebery said.”
“Of special interest” sounds like this is a curiosity, not the prelude to a social and economic nightmare as we have to pay for all these dependent adults.
“In the mid-1990s, fewer than 5,000 people were receiving
state-funded services in California for the developmental disability. Now that
figure has reached about 60,000. The figure skyrocketed in Ventura County from
a little more than 100 to 1,350.”
“The average cost of serving an autistic person in the regional centers averaged almost $12,000 last year. The cost for adults has averaged in the $30,000 range, with half of the expenses for housing and day programs, according to the latest available figures from 2006.”
“‘While this has been happening our kids have been growing up,’ said Vismara, who has a son with the disorder. ‘Suddenly parents are looking around and saying what's going to happen to my kid?’
“That's a question Kris Samuel lives with everyday.
“When The Star profiled JP's struggles with autism in 2000, she predicted that she would have to take care of the then-3-year-old forever. Now that he's 16, she still believes he will be dependent. Social Security payments for a disabled adult average about $600 a month; perhaps her older son and relatives will help out after she dies, she said.”
Next the Ventura County Star argued that previously, autistic adults were put in institutions.
“The 19-year-old man is part of a wave of college-going students with autism disorders showing up at college campuses.”
And the Ventura County Star tries to explain the trend.
“It's a dramatic change from the 1960s, when many autistic people were more likely to be locked in institutions in California. The college trend is driven not only by the growing number of diagnosed people, but by early intervention programs, educators said.”
It seems that the institutionalized ASD adults of the 1960s are today’s autistic college students.Sept 27, 2012, Huffington: Young Adults With Autism Seek Out White-Collar Careers For First Time “Some researchers estimate that up to 1 percent of U.S. adults have ASDs -- about 3 million people -- but the range in severity and the historical stigmas surrounding autism have made it hard for scientists to collect population data. The unemployment estimates take the entire population into account, including those with severe symptoms.
“There is currently no established cause of autism (though theories abound), nor is there a cure.
“Another pressing mystery for researchers is why diagnoses of autism among children in the U.S. jumped 70 percent between 2002 and 2008 -- from one in every 150 kids to one in every 88. Autism Speaks, a large national nonprofit, has estimated that during the next 10 years, more than 500,000 young people with ASDs will turn 18.
“But if current trends continue, many of them won't receive the basic education required to join the competitive workforce.”
‘If the current trends continue…’? Epidemic increases in autism are reduced to ‘current trends.’
“Despite the evidence, Bell said, some educators are still unequipped to address the needs of kids with developmental disabilities and above-average IQs.
“‘We clearly have a crisis looming,’ said Brenda Weitzberg, the founder of Aspiritech, a Chicago nonprofit that employs young adults with autism. She warns that unless there are adequate jobs available, even the most effective skills training will be of little use.
‘I have no doubt that more of these kids are going to be better prepared’ for high school and college, Weitzberg said. ‘But after they finish school, then what's going to happen to them?’
“‘Some people refer to it as the autism tsunami,’ said Bell. Unless more employment opportunities are created for people with autism in the coming years, hundreds of thousands of young adults with autism will join the ranks of the unemployed or underemployed.”
“Yet there is a ‘tsunami’ of people who have been diagnosed with autism in the last decade.
“‘From my research on the state Department of Elementary and Secondary Education website, 282 kids with a diagnosis of autism are now in the Cape and Islands schools,’ Bob Jones said.
“These children will be graduating from the system within 12 years, he said. Particularly for those with more severe forms, they'll need a community, he said.
“‘We want a place for our son from now until he's a senior citizen,’ Bob Jones added.
“The couple found out their son was autistic when he was 3. At the time, in 1988, such a diagnosis was rare, about one in 10,000, he said.
“By 2008, one in 88 people was diagnosed with some form of the disorder, which can range from mild disabilities to severe and can include mental retardation.
“Today, one in 54 boys is diagnosed with autism, according to the U.S. Centers for Disease Control. And that costs the United States $90 billion annually, according to the Autism Society of America.”
“…But he's also autistic, part of the generation of young adults who were born during the first big wave of autism cases in the United States two decades ago and are now struggling to strike out on their own.”
“It was in the late 1980s and early '90s that rates of autism
started skyrocketing in the United States. A condition that once was considered
rare, with fewer than 2 cases per 1,000 births in the United States, is now
thought to afflict 1 in 88 children, according to the Centers
for Disease Control and Prevention. It's unclear exactly what has caused the increase, but
factors could include greater awareness and better diagnosing of the condition,
as well as an actual rise in cases, perhaps related to
“It's not just a problem for the autistic children and adults, but for their families - especially for the parents, many of whom worry they won't be able to care for their adult children much longer.
“‘I hear from parents in the Baby Boomer generation who have kids in their 30s now,’ said Kurt Ohifs, executive director of Pacific Autism Center for Education in Santa Clara. ‘They come to me and say, I'm afraid to die, because who's going to care for my son or daughter?'”Oct 5, 2012, Springfield (MO) News Star: New job program in Springfield prepares clients with autism
“Autism has become an increasingly used identification for determining eligibility for services under the Individuals with Disabilities Education Act. Meanwhile, the first wave of children diagnosed in large numbers with autism in the early 1990s is growing into adulthood.”
"’The tsunami of autistic adults is beginning to arrive. We'd better be ready or we will continue to have tragic outcomes in these situations,’ wrote Sherry Cook, a Lexington, KY, parent of an autistic child,…”
"’You can say it's more children being diagnosed. You can call it a tsunami or an epidemic, but nobody is really questioning that the CDC is wrong in their prevalence rate,’ said Debbaudt, a Florida private investigator, whose son's diagnosis prompted him to form a company that specializes in training on autism.”
“With the passing of time, there are more autistic adults who need to find jobs, housing and social opportunities like all adults, according to Phillip Hain, west region director of Autism Speaks. He has an adult son with the developmental disorder.”
"’I am petrified for my son when he gets older,’ says Sara Kelly of Corona. ‘He will be 200 pounds (when he's 18), and he's still having extreme outbursts. How am I going to handle that?’”Finally, on Oct 26, 2012, I found the story, Lexington's Lurie Center focuses on autism research and care In the Lexington (MA) Minuteman.
“While the diagnostic criteria for autism spectrum disorder continues to evolve, a generation of people diagnosed as children in the 1990s has grown into adulthood. With autism research primarily focused on children, adults on the autism spectrum are left with fewer options for health care services.
‘‘There are very few places in the country that take care of adults, even though there are more adults with autism than children with autism,’ said ‘Lurie Center Director Dr. Christopher McDougle. “We believe in taking care of people for life.”
When McDougle, a clinical psychiatrist, started working with autistic patients in the late 1980s, the occurrence of autism was only two to four people in every 10,000. Today, one in 88 is diagnosed with autism spectrum disorder.”
The only way this story makes any sense is if you totally accept that changes in the diagnosis account for the epidemic numbers of autism among children everywhere. Dr. McDougle said, “There are more adults with autism than children with autism.” If that were really true, then there’d be no concern about all the coming adults with autism. They would go where autistic adults have always gone. The problem is no one has ever been able to show us the one in 88 adults with autism.
So will we happily accept the autism epidemic among adults as these children age? Will taxpayers willingly support the increases that will be necessary to support all the group homes and the services autistic adults will need?
If things continue
like this, no questions asked, autism will become a fact of life for all age groups and we won’t remember a world
where a significant part of the population wasn’t autistic. The autism
puzzle piece will become a common feature on stores, restaurants and other
places to show where people are trained to deal
with those with ASD. We also have to
remember, looking at the current rate, if one in every 88 Americans has autism;
the other 87 are going to have to pay for that person.
And if we accept that the costs can range from $3.2 million to $7 million per
individual, the price tag will be huge.
Anne Dachel is Media Editor for Age of Autism.