Jul 29, 2015 — Many have wondered if different treatments are needed when someone with autism also suffers from gastrointestinal problems, epilepsy, and sleep disorders. Dr. Daniel L. Coury, Medical Director of The Autism Treatment Network of Autism Speaks, tells us what the research says when it comes to treating these common conditions and what else we can learn about autism from their research on autism’s comorbid conditions.

Interview

Interviewer: The most common health issues for individuals with autism and how to treat them, next on The Scope.

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Interviewer: Dr. Daniel L. Coury is the medical director of the Autism Treatment Network of Autism Speaks. What is the mission of the Autism Treatment Network?

Dr. Coury: So our mission is to improve the medical care for individuals with autism everywhere and to develop evidence-based medical practices for treating their comorbid conditions. We're discovering that autism really affects many parts of the body, perhaps every part of the body, and it's these other medical problems that have been overlooked in many research studies and in clinical care. So we're out to try to shed better light on what these problems are, and how best to manage them.

Interviewer: What are some of the conditions that the Autism Treatment Network is concerned about?

Dr. Coury: So one of the most common areas has to do with GI disturbances. Many parents of a child with autism say that their child has a lot of GI problems, with abdominal pain, or excessive constipation or diarrhea, or reflux. A variety of GI problems. And for a long time people wondered whether these parents complained more, or if there was really more of this medical problem. And it turns out that they do have medical GI problems than people who don't have autism.

And that second part of that question is, are these GI problems different from the GI problems that other typically developing people have? And so we've been looking at that, and we find that it looks like they're the same GI problems. They occur more frequently, but they do respond to the traditional GI treatments in the great majority of cases.

Interviewer: And to some people hearing this, they might chuckle and go, "Well, of course they're the same." But there are concerns that a disease might manifest itself differently in different people, I suppose, and you want to really find out for sure if that's the case.

Dr. Coury: Well, that's correct. And what has happened with many primary care providers over the last 20 years or so is that parents of a child with autism come with information that they found on the internet about a diet that they should be trying, or some treatment that they should be trying, and many family doctors can't keep up with the variety of things that are published on the internet.

As a result, I think that a lot of these doctors started to lose confidence in their clinical skills, and started thinking, "Well, maybe this is more complicated than I can manage." And so they would refer them to specialists, or specialty centers, and not do the things that they actually were capable of doing that would help children. So I feel that we've done a lot to demystify that.

Interviewer: Yeah, that'd be very helpful for a physician. And also for the patients as well, to know that yes, I can go to my regular family physician and any advice or information they would have would help my child, just like it would help anybody else.

Dr. Coury: Yes, it would, because especially when the specialty centers are really overloaded and have long wait lists. And to wait a long time to see a specialist when in fact it was something that your primary care provider could have managed, is just a much more efficient way of getting services to families, and getting these children the help that they need.

Interviewer: What are some of the other conditions that you're concerned with?

Dr. Coury: Well, another one that I have known for some time has increased, is epilepsy. Seizure disorders occur in people with autism at a much higher rate than the general population. Most studies show that over the course of your lifetime, a person with autism is about 19% of the population is going to have a seizure disorder compared to less than 1% of the general population.

So again our question is, is there anything about this that we could have tried to predict? Are there certain kids with autism who are more prone to have this? And then, what is the best way to treat these seizures? Do we treat them the same as we do in typically developing individuals, or do they respond better to different medications?

Interviewer: And what did you find out when it comes to epileptic seizures?

Dr. Coury: Again, so far we haven't found that there is anything particularly different. They do respond well to the regular epilepsy medications. And, like people who don't have autism but have epilepsy, there are some who have very resistant seizures that are difficult to treat. And so there are all sorts of treatments being examined to try to help that population.

Interviewer: So once again, good news for parents or somebody with autism, that the regular standard procedures all seem to apply.

Dr. Coury: Yes, it does.

Interviewer: Are there any other things that you're concerned with at the Autism Treatment Network, as far as those comorbid conditions?

Dr. Coury: Well, the third most common one has to do with sleep. A large majority of parents of a child or a family member with autism complain that their family member has problems falling asleep or maintaining asleep, and getting up in the middle of the night, or is rising early in the morning. Some of these families report that their child only sleeps three or four hours a night. And so we've been very interested in that. At first it was thought that, well, because this person has a neurodevelopmental disorder, perhaps other parts of the brain affecting sleep have been affected, and that we need to use a medical treatment.

In fact, we've found that non-medical treatments, good behavioral habits surrounding sleep are effective about two-thirds of the time. What we also found is that it's very difficult for families to carry this out. At the end of the day, a parent of a typically developing child who has sleep problems still has the energy to engage in the behavioral changes that we recommend. But our families with a child with autism are often worn out from dealing with their child's behavioral and developmental issues all day long. So with a lot of support we can improve their sleep without medication, but it is difficult.

Interviewer: And it takes a team, it sounds like, not just a couple of parents. Other family members need to be involved in that.

Dr. Coury: They really do. And one of the things that we've really found with managing these children is that they really require team management from the medical side as well. The families need help with care coordination to get the services that they need, they need help with keeping those appointments, a variety of things, because it can be a pretty overwhelming experience, parenting a child with autism.

Interviewer: Are there any of these types of things that you do want to treat differently with somebody with Autism? We've already talked about how your GI problems, or epilepsy, or sleep can be treated in conventional ways. Is there anything that you need to use nonconventional ways to treat?

Dr. Coury: Not at this point. We're finding, again, it's maybe difficult to use our conventional treatments. So for example, we have difficulty treating constipation because the sensory problems that many people have with autism have, makes it difficult for them to take the medication. So we look for other ways that we might be able to get around that, or we look for ways to make the medicine more acceptable so that the patient can take it.

But so far the fortunate thing has been that we've found that these medical problems look very much like what they are in other people. We're still not sure what is causing them. We haven't identified if there is a different root cause that is part of the autism, but the good news is it looks like whatever that root cause might be, they respond to our traditional treatments.

Interviewer: In addition to learning that traditional treatments for those ailments do work for individuals with autism, does this research tell us anything else?

Dr. Coury: Well, another area of study that is just now becoming of greater interest has to do with immune problems, and we have found that the families of people with autism have a higher rate of autoimmune disorders. These are disorders like arthritis or diabetes, and we have found that people with autism have a higher rate of diabetes than the general population. These, again, give us an idea of what might be going on that causes autism.

So what we're doing with the network, the more we learn about these other medical problems, as we trace back what causes those problems, we feel we're learning more about autism, and eventually what causes it, and how we might be able to better treat it, or even try to prevent it. So these are exciting times.

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