Dec 9, 2015 — A University of Utah research project from the 1980s finally gets an answer to the question: What medical conditions are adults with autism most at risk for? Dr. Kyle Bradford Jones briefs the project and talks about why the five medical conditions are so common in adults with autism. He also talks about ways caregivers can help their loved ones manage the conditions.

Interview

Dr. Jones: Adults with autism are prone to certain medical conditions. This is Kyle Bradford Jones, family physician at the University of Utah on The Scope Radio.

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Dr. Jones: The Journal of Autism has recently published a paper from the University of Utah that I participated in that looked at what medical conditions adults with autism tend to have. Now a little bit of background with this, this project started in the 1980s. Researchers from the University of Utah led by Bill McMahon as well as some researchers from UCLA tried to find every child in Utah that had autism.

Now since this was the 1980s it was difficult to diagnose. There weren't a ton. They ended up finding a couple of hundred people and they've followed them since then. And so a follow-up that was done a few years ago provided medical questionnaires to either the individual or their caregiver and asked a lot about their medical problems, their hospitalizations, their surgeries.

We ended up finding about 92 people of the original 200 some odd people, 11 of which had passed away, so we were able to find their caregivers that were able to provide some information. They filled out these medical questionnaires and gave us the information. And let me tell you a little bit about the population itself.

Most were in their 30s so they were originally found when they were small children and now are adults. Sixty-two percent have intellectual disabilities which is what we used to call mental retardation. And that's higher than the typical population with autism. Around the United States it's actually about 40% of people with autism have intellectual disabilities.

But like we said because of the way they were originally found in the 1980s, it's expected they'd be a little more severe. Seventy-five percent were male, which actually goes along with what we know currently in autism. It's much more common in males and most of the individuals took over four medicines a day, so they had lots of different problems they were being treated.

So some of the common problems we found, a big one, number one, seizures. This is very common among individuals with autism. In a lot of the studies of children with autism this isn't seen as much mainly because the seizures tend to start in adolescence and so this is something that often times will carry into adulthood. And sometimes they have one or two seizures and that's it. But if it's recurrent, it usually starts in adolescence.

Number two, obesity is a big one. When you look at studies in Europe they don't see that as much, so this tends to be a little bit more of American culture fitting in. But at the same time it's important to keep in mind because individuals with autism have a lot of sensory issues and tend to be a little more picky eaters. And so because of that it's something to pay close attention to.

Number three, sleep problems. Individuals with autism tend to make a little bit less melatonin in their brains which is what helps us regulate our sleep. And so because of that a lot of them have difficulty sleeping and that's actually one of the first things we try to tackle as clinicians is to try to get them to sleep if they're having behaviors, if they're having depression and anxiety. Because if they're not sleeping, they're not really able to deal with the other problems.

Number four, constipation. Now this sounds a little silly like, "Okay, that's not a big deal." For this population it can be a huge deal. If they are a little irregular with their bowel movements it can cause lots of problems in other areas. They don't eat as well, again they don't sleep as well, they're more likely to have poor behaviors. And so this is something to keep a very close eye on.

Number five, balance problems. A lot of falls, a lot of lack of coordination, and this is something to watch out for. Once it starts there are little things you can do to try to optimize their balance such as physical therapy or determining if they need a cane or a walker. But for the most part it's mostly about keeping them safe. And there isn't a whole lot that you can do to stop the progression except to optimize those things as best we can.

Now with the 11 individuals who had died but we still got information from their caregivers there wasn't any difference among their medical conditions. They had the same as the individuals who survived. Looking at hospitalizations, about a fourth had a hospitalization for a life threatening condition. The vast majority of the time it was pneumonia, that was a really big one. And that seemed to be the biggest one that caused death and so that's something that as a caregiver, as someone in the community, as a clinician to really watch out for and be careful with, pneumonia.

Almost one in five had had a major surgery. So that's a little bit higher than you would expect, so definitely lots of medical problems that are causing issues. The females among the group even though there were fewer of them, they tend to be sicker. They had more problems. Probably the most interesting finding here there was no difference between the individuals who had intellectual disabilities and those who didn't in terms of their medical conditions.

A lot of other studies have shown that the worse your intellectual disability, the more medical problems you're going to have. But we didn't find that in this group. Which is interesting and is something to keep an eye on as further research goes along.

In summary, adults with autism experience lots of common medical problems. The main ones being number one, seizures. Number two, obesity. Number three, sleep problems. Number four, constipation. Number five, balance problems. This is all research from a recent study we did here at the University of Utah that was published in the Journal Autism and is important information for anyone who interacts with these people in the community.

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