Do Autistic Adults Have More Health Problems?

Do autistic adults have more medical problems than the general population?  Lisa Croen thinks the answer is yes.  Dr. Croen is the director of Kaiser Permanente’s autism research program, and she’s studied the health records of 2.5 million adults in the Kaiser system in California.

She presented some of her data at the opening of IMFAR 2014 – the International Meeting For Autism Research, held this year in Atlanta, Georgia.  The findings are sobering, and clearly show the need for further study. 

She found that adults with autism were . . .

• 90% more likely to have received treatment for sleep disorders;
• 70% more likely to be overweight;
• 50% more likely to have diabetes;
• 42% more likely to have high blood pressure;
• 24% more likely to have gastro-intestinal troubles.

This list of medical issues is similar to the list of issued faces by children on the spectrum, but the order is somewhat different.  Kids have more GI trouble, while diabetes usually appears later in life.  Overall, the study shows that the problems that plague many of us as kids are lifelong.

When she compared psychiatric issues the differences were even more unsettling:

• Autistic adults were 433% more likely to have attempted suicide;
• 123% more likely to have been treated for depression;
• 117% more likely to have been treated for anxiety.

This also follows the pattern we see established in childhood and teen surveys.  Autistics may grow up to be more functional, and we may get along better.  But we retain a disadvantage in overall health.  The 433% difference in suicide attempts is particularly sad and troubling.  

Looking at the bright side, there were a number of diseases and conditions that were equally prevalent between autistic and non-autistic people.  But the overall picture isn't bright. No matter how you cut it, autistic adults seemed to be treated for more health problems.  Last year at IACC we saw a similar public health study that showed autistic children had more doctor visits.  When we discussed that study one person suggested that the difference in treatment requests might be partly because the challenges of autism had made the parents hyper-aware, and they were more likely to call the doctor. Now we see something similar in an adult survey, and that makes me think the numbers are higher for the obvious reason - because we have more problems. 

This study's finding is especially relevant because the adults surveyed were part of a single health care system, one where everyone can be presumed to have similar access to services.

When filling out Kaiser profiles, most people with autism said they did not drink or use drugs.  The general population was more than twice as likely to admit drinking or drug use.  It’s not clear if the difference in answers reflects a different pattern of drug use or merely a different way of answering the question.

When we look at hard data – treatments received through Kaiser - men with autism were no more likely than the general population to receive treatment for drug or alcohol use.  Surprisingly, women with autism were more than twice as likely to have received treatment.  Why?  That's a question for another study.

The thing that’s interesting is that the admitted rates of use are lower, but the rate of treatment is the same or higher.  Does that mean autistic people are less likely to use drugs or liquor, but more likely to be addicted if they do?  Or does it mean drugs and alcohol affect autistic people the same, but they are less truthful in self-reporting usage?  That too is a question that merits further study.

She found something similar with smoking.  Autistic people were half as likely to report smoking (roughly 30% versus 60%) but the rates of cancer were about the same between the two groups.  Once again we are left wondering if we are less likely to smoke but more vulnerable to cancer if we do, or less accurate in our self-reporting.  It’s also possible that the sample size is too small to parse the data accurately at this level. 

To do this study Dr. Croen compared the medical histories of adults with an autism spectrum diagnosis in their medical record to their non-autistic peers.  She looked at the kinds of treatments people received (through insurance) and the statements they made when filling out profile forms.

From a pool of 2.5 million Kaiser patients, her team identified 2,100 autistic adults aged 18-60.  Their average age was 32. Roughly 35% of her subjects were diagnosed with traditional autism (DSM III or DSM IV); the other 65% were diagnosed with PDD NOS, Asperger’s or some other condition on the autism spectrum. Two-thirds of her subjects were men; 21% were diagnosed with some level of cognitive impairment.  The other 79% of the autistic population had intelligence that ranged from near-normal to superior.

I was struck by the seeming point that only 1 in 1,000 of the people in her Kaiser pool were actually diagnosed with autism.  But the more I thought about it, the more sense it makes.  First of all, her study looked at adults, many of whom grew up prior to widespread childhood diagnosis.  Additionally, a good many adults obtained diagnoses outside the health insurance system, and an organization like Kaiser would not necessarily know about them.    Finally, we do not know if she reviewed the whole 2.5 million person Kaiser pool 

This study reaffirms my belief that we need to be putting much more emphasis on adult autism issues.  I hope it spurs more action in that regard.  The study also raises more questions than it answers.  I hope they can be explored soon.  In this year's Strategic Plan, the IACC has called for more research into adult issues.  This latest report powerfully underscores that need.  

Thanks to Dr. Croen for coming to IMFAR, presenting her data, and answering the questions of myself and others.  Any errors in the presentation of her data are my own, and of course the interpretation is mine too.


John Elder Robison is an autistic adult and advocate for people with neurological differences.  He's the author of Look Me in the Eye, Be Different, Raising Cubby, and the forthcoming Switched On.  He's co-founder of the TCS Auto Program school and Neurodiversity Scholar in Residence at the College of William & Mary.