Scott Wright, a researcher at University of Utah and the editor of the book "Autism Spectrum Disorder in Mid and Later Life," talks about the different factors in health care and the challenges individuals with autism have in the health care system. The lesson learned might mean a longer and better quality of life for those with autism.">

Apr 11, 2016 — A recent study shows the life expectancy for individuals with autism can be 10 to 30 years less than those without it. But why? It might have to do with inadequate health care. Scott Wright, a researcher at University of Utah and the editor of the book "Autism Spectrum Disorder in Mid and Later Life," talks about the different factors in health care and the challenges individuals with autism have in the health care system. The lesson learned might mean a longer and better quality of life for those with autism.

Interview

Interviewer: A new study just came out indicating shorter life expectancy for those with ASD. We're going to find out what you should take away from that next on The Scope.

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Interviewer: Scott Wright is a researcher at the University of Utah and the editor of the book, "Autism Spectrum Disorder in Mid and Later Life." A recent study just came out that indicates that life expectancy for those with autism spectrum disorder is actually shorter than what we previously expected. Tell me a little bit about that study first of all, and then eventually I want to get to what's our takeaways from this.

Scott: This is a relatively new study in the British Journal of Psychiatry, and that the perception was that autism would affect the lifespan, average life expectancy, as equivalent to like Down syndrome that most individuals would not reach mid-life or perhaps even the 20s or 30s. But the perspective changed in the last two decades that autism is indeed a lifelong condition, and we have examples of individuals like Temple Grandin, Donald Triplett. These are individual that are pioneers. They're into their 60s, 70s, and 80s with autism.

Then comes this study. This study has indicated that premature mortality is a very, very important characteristic of the overall health, well-being, quality of life for individuals. In effect, the researchers in Sweden discovered that there is a loss, on average, for some groups in the autism landscape, up to the course of 30 years less than the general population. This says a lot about two factors.

Is it a biological vulnerability of individuals? Or is it the fact that the context, especially in the healthcare settings, has a lot that needs to be worked on so that individuals on the spectrum can interact with the healthcare system to deal with their healthcare challenges?

Interviewer: What I understand that you're saying is that it could be a genetic cause that individuals with autism just are going to live 20 to 30 years, on average, less. Or it could be they're not getting the adequate healthcare that they need in order to have a full life like the rest of us?

Scott: The article and the analysis of this data is indicating that many individuals are simply left to the side of the advantages that we find in healthcare settings for the general populations.

Interviewer: And I should also say a lot of the times individuals with autism could be a little medically complex as well.

Scott: Yes.

Interviewer: And they're not completely always understood by physicians or the hospital system, not able to necessarily communicate what their conditions or concerns are. Do you feel like that's where it's kind of happening?

Scott: I think that's exactly . . . it's an interaction effect. If we think about the challenges of an individual in the autism spectrum, a premiere characteristic is social communication. And let's just use the term, there can be a degree of awkwardness of interacting with other individuals. And an individual that is very reluctant or hesitant, or has stress or anxiety about interacting with the healthcare system, is going to be very reluctant to even go.

So that's another added factor that I think physicians, healthcare professionals should be aware of, that the individual in the spectrum, might be having difficulty in expressing the challenges that they're going through.

Interviewer: What's the takeaway for somebody that might have an individual with autism in their life or an individual with autism? Is it, "Boy, go to the doctor, find a physician that understands where you're at, that you feel comfortable communicating with"?

Scott: I think that would be a very important issue is to find a primary care physician, specialist, who can show that they are aware, they have empathy for the challenges that are associated with autism. The other takeaway message would be, I think that we also need a greater level of training, training for healthcare professionals to be aware of the characteristics of autism so that it is realized, recognized in a clinical setting. I really think that the training has just started. We have a long way to go.

So that'd be the other aspect, the other side of the coin, is training of healthcare professionals, to be more aware of autism issues because we just said that it's not just a pediatric issue. It's an internal medicine, it's a primary care, clinical setting, it's a geriatric. It's a life course issue that we should all be aware of.

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