What happens to autistic people as we age is more of a mystery that it appears, because the definition of autism has changed so much in the lifetime of most Americans living today. Changes to diagnostic criteria (as defined in the DSM guide) in the 1990s resulted in thousands of young people being diagnosed. These diagnoses were often done in association with public schools, when kids exhibited academic or behavioral problems. The revised diagnostic criteria applied to adults too, but there was no comparable mechanism for adult diagnosis, so the surge in diagnoses was primarily among schoolchildren.
Many were bright and verbal, with social or behavioral challenges. They stood in sharp contrast to previously diagnosed autistics, who had more obvious verbal and cognitive disabilities. Autism had a fearsome reputation. Parents were frightened by the labels affixed to their children. After hearing that “there was no cure,” prompt and aggressive intervention seemed to offer the best hope. That led a push for early identification that continues to this day, with autism now being diagnosed in toddlers and even infants.
Parents asked where autism came from. Answers were slow in coming, leading parents to form their own theories. Scientists recognized a strong genetic component to autism, but not all autism is inherited. Studies showed that some maternal illnesses increased the chances of an autistic child. Other studies found connections between environmental factors and autism. Families observed dramatic changes with the coming and going of fevers, and disease was suggested as a path into autism for some.
There seemed to be many possible causes for autistic behavior. That didn’t sit well with the public, who wanted a single cause they could identify and cure. Nothing of the sort happened, and the uncertainty opened the door for talk of an “autism epidemic.” Conspiracy theories ran rampant; a problem that persists to this day.
Many scientists and a growing number of openly autistic adults believed autism had always been here. From their perspective there was no epidemic, just a recognition of what had always been. In that view, older autistics were either diagnosed incorrectly, or not at all. That was buttressed by the accounts of autistics who received their autism diagnoses in middle age.
A large number of parents refused to accept that. “Show us the autistic adults,” they said, but autistic adults were not identified in large numbers, either now or then. To some, that was evidence autism had not existed in its present form in the recent past. To others it was evidence of a massive failure of public health – the inability to identify autism in a whole generation, leading to poor life outcomes and considerable suffering.
With billions of dollars spent on autism research over the past decade the fate of adults remains an unanswered question. The British have made some headway. In 2011 a group led by Dr. Terry Brugha of the University of Leicester published a study that looked at autism prevalence among 7,274 heads of household in England. They found a similar autism prevalence in every age group, but the older people in the study were seldom diagnosed. Extensions to that original study suggested a prevalence of autism around 2% in men, or 1.1% for the overall population. That study suggests autism has not gotten more common, just better recognized.
The British researchers found a very high rate of autism among adults who had been diagnosed with severe learning disabilities in childhood. More than 1/3 of those individuals proved to be autistic. They also found much high rates of autism in communal living settings, which house people with developmental disabilities of all sorts.
A California study compared the recent rise in autism diagnoses in that state with a fall in diagnoses of intellectual disability. That study suggests the diagnostic labels have shifted because the services for autism seem more helpful to the affected population. It’s not likely that one condition has diminished and the other grown more common.
These studies support the idea that autism prevalence has been relatively stable in modern times. They show that the application of modern screening tools leads to identification of autistic traits in people at a rate that is largely independent of birth date.
Given those findings, it’s likely that somewhat more than 1% of all people are autistic. The most recent childhood prevalence data suggests the number is closer to 2%. That means there is a total autistic population of four to six million people in the United States alone – far more than are actually diagnosed or receiving services.
We know very little about the vast majority of that population, but what we do know is frightening. Studies from Kaiser Permanente and others have shown sharply increased mortality in diagnosed autistic adults. Kaiser found people diagnosed with autism die on average 16 years sooner than non-diagnosed peers. British studies have found institutionalized autistics have a life expectancy less that 50 years.
The autistic mortality data we have is mostly from diagnosed individuals born prior to 1965, which suggests their autism is at the more severe end of the spectrum. Other studies show that severity of autism correlates with severity of co-occurring medical conditions. Since those conditions are often responsible for death, we do not know the impact on less impacted autistics such as those identified in childhood in the current generation.
Other adult outcome data suggests high rates of unemployment or underemployment among older autistic people. But if most older autistics are not identified we may be misled by data subsets that measure only the more obviously impacted adult population. We have no way to know the outcomes of the rest.
There is casual talk about tech companies and accounting firms being full of undiagnosed autistic people. If that were true, the average outcome for autistic adults might be better than current suggested. Corporate initiatives like Autism at Work are currently trying to build upon that idea. But we do not yet know if it’s true, or just wishful thinking.
The limited adult outcome data we have is alarming enough that we should find out more. Unfortunately, it’s not clear how we would do that, particularly in America. People are resistant to participating in lengthy medical surveys. Ascertainment of autism prevalence in adults would require extensive autism screening, with many people subjected to hours-long evaluations with ADOS or a similar tool.
In an informal survey on social media I received many similar responses to the idea:
· Why should I spend half a day on an autism study? There’s nothing wrong with me.
· I’m not going to let you evaluate me and tell me there’s something wrong. I’m fine.
· If I let you evaluate me who knows how the data will be used against me. No way.
· You have no right to ask me to do anything.
Outside the autism community the enthusiasm for a project like this appears to be near zero.
That is why we have detailed autism prevalence data in children but not in adults. Children have problems in school, or their parents have behavioral concerns, and they are evaluated at parent’s request. Parents have an incentive to evaluate their kids as that is the path to get them services they feel will help them succeed.
There is no comparable incentive for most adults to seek evaluation. Few adult services exist, and many adults are aware that any medical diagnoses may exclude them from employment opportunity, cause them to be denied licenses, and subject them to higher insurance rates and other forms of discrimination. Taken together those things form a strong disincentive for adults to seek evaluation – precisely the opposite situation presented by children.
It has been 20-some years since the diagnostic surge prompted by the DSM IV redefinition of autism. The young people who were diagnosed in that 1990s and 2000s wave are now adults, and they are able to speak about their diagnoses and the interventions they received, which were more aggressive than those given to autistics in earlier generations. There is surprisingly little statistical data on this group, even as there is a great deal of anecdotal data in personal accounts from books, blogs, and social media.
The vast majority of accounts are harshly critical of childhood interventions, particularly ABA (Applied Behavior Analysis) therapy. These adults decry the attempts to “normalize” their behavior and force them to be someone they are not. Some autistics compare modern autism therapies to discredited gay conversion therapy. Parents sometimes have a different view, believing therapy gave their kids essential skills to succeed.
With hundreds of millions spent on autism therapy in schools every year, it would behoove us to collect and listen to the words of autistic recipients. Yet that is difficult, because educational records are generally sealed, and researchers have no way to find those young adults. The online accounts are a tantalizing clue that society’s interventions are not having the desired effect, but we lack the data to drive constructive change. ABA remains the primary autism therapy for kids despite a near-total absence of support from the alleged beneficiaries in adult autistic community.
Today’s autistic adults also question the role society plays in autistic mortality. Some say an absence of adult supports and services increases the likelihood autistics will die of disease or accident. They also point to the presumed isolation of many older autistics and suggest loneliness and depression reduce lifespan. Those are all reasonable arguments, but we lack statistical data to put them in context for policymakers.
In the past two years the Interagency Autism Coordinating Committee (the top-level autism committee for the US government) has shifted its focus from childhood and adolescence to lifespan issues. IACC members have called for more adult studies, and good data that Congress can use to make decisions to benefit the autism community. Until that happens we will remain in the dark with respect to autism’s impact on adults.
As long as autism carries a stigma, and people are ashamed or afraid of it, individuals will remain reluctant to step forward. That is a tragedy, both because we need the data to figure out how to best help our population, and because younger autistics need adult role models to look up to. Every group needs its older adults – the wise men and women – and autistic people are no exception.