What's Next for Autistic Adults?

John Elder Robison

We don't know, because most autistic adults are unrecognized and unsupported.

Reading the news, the prognosis for autistic adults looks like a very mixed bag. On one hand are hopeful stories about Project Search, Autism at Work, and Neurodiversity in school. Those accounts portray autistic people as loyal, kind, eager to work, and wanting to make a meaningful contribution. Employers talk about superior attention to detail and exceptional caring about quality and correctness.

Then there are the downsides. One study found that autistic people are nine times more likely to die of suicide. An autism website says 80% of autistic adults are unemployed. Autistics are far more vulnerable to diabetes, anxiety, obesity, depression and a host of other serious medical problems. Most autistic adults never get married, and if they do, it doesn’t last. 

A person could be forgiven for asking how autistics could be star employees in one article, and on the next page, it says that 80% are unemployed? Media certainly doesn’t have the answer. Television programs like The Good Doctor, Boston Legal, and Big Bang Theory portray autistic adults as happy, funny geeks. No doubt there is a large made-for-television component, but it’s still hard to reconcile those portrayals with the suicide and disease reported in the scientific studies. It’s as if the narratives describe wholly different populations.

Here’s the truth: Television autism isn’t reality, but neither are many other accounts we read. We don’t know what happens to most autistic adults. All we know is what happens to a few autistic adults.

There is no question that some are unable to care for themselves and spend their lives in institutional care. There is also no doubt that some college professors and business leaders have been diagnosed with autism, as have iconic cultural figures. Those seemingly opposite depictions are both real; they illustrate the diversity of the autistic population.

They are, to a significant degree, stories of outliers. Most people don’t grow up to be movie stars, software inventors, or video game designers. On the other end of the scale, most autistic people are not so disabled they cannot take care of themselves. Programs like Autism at Work or Project Search have great dreams, but only a small number of autistics qualify for each program. 

In the general population, there are a few intellectually disabled folks and a small smattering of geniuses. Most people fall somewhere in the middle. Scientists used to think most autistic people were intellectually disabled, but now we believe they are more average with respect to cognitive ability.  But that’s about as far as it goes. We have no idea who most autistic adults are, so we have no basis for any accurate claims about the prospects for autistic adults as a whole.

Medical science tells us that autism is a lifelong neurological difference. It is not a progressive disease. Signs of autism tend to appear very early in life, and most children are diagnosed in grade school. The Centers for Disease Control (CDC) operates the Autism and Developmental Disabilities Monitoring Network (ADDM) to look for autism among 8-year-old schoolchildren. The ADDM issues an annual autism prevalence report. Last year they reported 1 in 59 children are autistic.

That number has been rising steadily, mostly as a result of better ascertainment techniques and changes to the diagnostic criteria. Medical guidebooks define autism as a communication disability. Thirty years ago, that meant a person could not speak or understand language. It still means that today, but now it also refers to a person who misses subtleties of expression or body language. Both are communication disabilities, but the degree and presentation are very different.

This diagnostic evolution has taken place over the past 20 years, and most autism diagnoses are given in childhood. That means most of today’s adults grew up without the benefit of modern autism screening. That was a key finding of a 2011 study of autism among adults in a British community—one of the only adult autism prevalence studies to exist.

Nine year ago Dr. Terry Brugha from the University of Leicester went door to door and screened 7,500 adults for autism. At that time, the childhood autism prevalence was about 1% and the researchers found the same in the adult population. Interestingly, none of the older autistics identified had a pre-existing autism diagnosis. Some had other diagnoses; many had nothing at all.

Dr. Brugha found a large population of undiagnosed autistic adults, hiding in plain sight. Those of us who inherited autism from our parents or passed it on to our kids don’t find that very surprising. There is an emerging consensus that autism has been part of humanity for a long time, and it is our ability to recognize it that is improving. That being the case, and in view of current data, we might hypothesize 1-2% of our adult population would prove to be autistic if evaluated today. 

We know who the autistic children are in schools, and researchers can study them.  We have absolutely no idea who most autistic adults are. One major study of autistic adult health looked at all the people with autism in their medical record and compared their health to a set of controls without autism in the record.  

That study looked at adults in the Kaiser system in northern California.  Out of 1.6 million adults in the system, only 1,500 had autism in the medical record. That’s 0.1% of the population—less than 1/10 of the autism prevalence known today. The health of those autistic people was strikingly worse, but what does that mean for the invisible majority?

All the current studies of autistic adult health have similar limitations—a focus on small subsets of the population. One looked at the mortality of autistics in institutions. Another looked at autistics who sought treatment for autism. Other studies drew their samples from autism support groups.

The problem is, most people don’t live in institutions, and a health study of institutionalized individuals does not describe the general population. Since most adults never seek treatment for autism, we might surmise that those who do have more health problems. The same can be said for members of autism support groups.

Within their limits, current studies do describe the health outcomes of autistics in institutions, seeking treatment, or taking part in support groups. But that’s not what we need to know to formulate research and social policy for all autistic people. We need to know about the whole population, and if there are groups needing special attention, we must identify them.  

Even if the early mortality of autistics in institutions is not predictive of autistics in the community, it is still a call to action for that subgroup. The studies we have are important, but it’s a mistake to assume their findings generalize to all autistics.

If most autistic adults don’t seek treatment for autism, it might be that the symptoms of autism (which may have been extreme in childhood) are moderate to the point of invisibility in adulthood. On the other hand, if adults are ignorant of autism, it’s possible that awareness and support would significantly improve their quality of life.

Right now, one in 56 schoolchildren really needs special assistance to get through school. Once out of school the number of adults receiving autism services drops sharply. We don’t know if they outgrow the need for service, get the support some other way, or they need help but there is nothing available. Probably all three things are true for different people and places.

I believe our public health agencies should commission a large scale study combining elements of Brugha and the ADDM the United States to identify and monitor a true representative sample of autistic adults. As ominous as current findings are, we owe it to the invisible majority to find out what applies to them, and if there are issues, how to address them.

At the current prevalence, there are some 6 million autistic people in the United States. That number makes autistic people one of the largest population subgroups; one that is deserving of considerably more attention than is given today.

I have just published a commentary expressing these views in the peer-reviewed journal Autism Research. This essay presents my ideas for the general public.

Disclaimer: I am a member of the Interagency Autism Coordinating Committee of the US Department of Health and Human Services, but the opinions expressed here are entirely my own.

from https://www.psychologytoday.com/us/blog/...