Where are the adults with autism?

One question that crops up during discussions of autism prevalence is “If autism isn’t on the rise, then why aren’t there more adults with autism? Where are all of the autistic adults?”

There are plenty of adults with autism, but I think these are some of a few reasons for this question.

1. Confirmation bias
Autism is a hot topic these days, but kids are the focus much more than adults. I think this is partly because current discussion misguidedly centers around vaccines (largely irrelevant to adults) and partly that children generally provoke more empathy/sympathy for a cause. But, for example, a sample of people with autism in the UK suggests that autism rates are steady across age groups at around 1%. Other studies that account for changing* diagnostic criteria (for example, the addition of Asperger syndrome to the DSM-IV in 1994), the reduction of stigma for certain disorders, and other factors also suggest that autism rates may be relatively steady.

Interestingly, the UK survey also noted that the autistic adults in their sample tended to live alone and not make use of existing support systems (such as mental health and social services) any more than other groups. Compounding the problem is that previous lack of diagnosis (like I said above, Aspergers wasn’t in the DSM until 16 years ago) possibly increased the chances of being diagnosed with other disorders – such as OCD, social anxiety disorder, etc. Further compounding the problem sometimes is a lack of records. So the perceived imbalance may be due to the simultaneous focus on children while adults (and the undiagnosed) fly under the radar, lending to the appearance of few autistic adults and many autistic children. The two extremes taken together seem like a gross imbalance.

2. A lack of understanding of adult autism
Autism is quite variable among children; this is also true for adults, even within the same person. Symptoms can change over time or appear as other disorders, autistic people vary in their skills and preferences throughout their lives as much as anyone else, adults have different responsibilities and support systems than children, etc. The number of resources available for adults with autism demonstrates that there are a need for services, and there are better outcomes than previous years. But, from the Ontario Adult Autism Research and Support Network:

Those who probably had classic autism as children may suffer from general assumptions that they have a poor prognosis as adults. It may not seem to professionals and policy-makers that they are worth much in resources. In recognizing other subtypes of autism disorder, we may tend to overlook the needs of adults with the most distinctive and severe forms of the disorder.

By adulthood, in any case, symptoms of the disorder may be masked by the person’s life and treatment experiences, the effects of drugs, and her/his own efforts to cope with the disorder. Each person of whatever age should considered as a unique individual. This is especially true of adults who were diagnosed with autism as children. Their challenges cannot be understood purely and simply in terms of autism. On the other hand, knowledge of the autism and past treatments may help in assessing their abilities and challenges as adults and in considering helpful approaches — including adult versions of therapies and strategies that may have been mainly designed for children, but too recently for today’s adults.

Adults have many complicated life issues to deal with on top of their autism, perhaps contributing to false impressions. Conversely, some people’s autism is very mild and barely affect their lives. Could this be perceived as never having had autism in the first place? Is this a situation where doing well is one’s own enemy (at least to the groups that are underestimating the numbers)? It’s irresponsible to assume that there aren’t (or are very few) adults with autism simply because they aren’t packing mental hospitals and special housing.

3. Stereotypes
1% of autistic people doesn’t mean 1% of severely autistic people requiring constant care – this estimate refers to ASD, autism spectrum disorder. Many adults with autism live independently and work to support themselves and/or their families, particularly excelling in jobs that make use of preferred skills. But if, for example, you go out, you’re probably not going to take the entire medical history of every person you come in contact with. For all you know, anyone you interact with could have some form of autism. People can have many things going on in their lives that you would never know about, because you typically wouldn’t notice. So the assumption “they’re not there because I don’t see them” is fallacious and makes generalizations, likely based on assumptions and imagined stereotypes.

So it seems that the question of “where” is more than simple numbers and appearance. The question seems to come from errors in logic: arguments from personal incredulity (I can’t believe that there are that many autistic adults), confirmation bias (there appears to be more autistic children now), and arguments from ignorance (I’m not aware of autistic adults, so they’re not there). Before drawing conclusions about adult autism, think logically about the complicated variables that are at play. Also think sensitively. Is there an increase in autism? The evidence so far suggests probably not, but either way, the many adults with autism deserve better than to be ignored or marginalized due to ignorance and lack of critical thinking.

*Addendum: The DSM-V is now online for review and it looks like autism diagnoses will be updated.

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  • Kim Hebert

    Kim H├ębert is an occupational therapist. She is interested in the promotion of science and reason, particularly regarding therapeutic health interventions. She blogs occasionally about occupational therapy and other health topics at Science-Based Therapy. Her hobbies are art and astronomy. **All views expressed by Kim are her personal views alone, and do not necessarily reflect the opinions of current or former employers, associations, or other affiliations. All information is provided for discussion purposes only, and should not be used as a replacement for consultation with a licensed and accredited health professional.