TMC PULSE

T M C » P U L S E | N O V E M B E R 2 0 1 8 16 Q | You observe that Rachel's autism is atypical but not as atypical as experts once believed. Can you elaborate? A | This is one of the sub-themes of the book. We used to say autism was 10 to 1 boys to girls, but it's probably far closer to 1 to 1 than we realize. It's just different for girls on the autism spectrum. They camouflage it better; they're more verbal, more interactive, but oftentimes in a very odd way. There are often high rates of comorbidities for girls or women on the spectrum, such as a high incidence of obsessive- compulsive disorder or attention deficit hyperactivity disorder. We're now realizing a lot of adolescent girls with eating disorders are actu- ally on the autism spectrum. It's the comorbidity that gets diagnosed, not the autism. That's the big revela- tion in the book. Q | In the book, you confess that it wasn't the autism diag- nosis that was so devastating to you and your wife. It was Rachel's low IQ: " … we came to an understanding that Rachel would have a very different life from what we had hoped for her. We faced a real possibility that she would not find a life partner, attend college, or have a meaningful career. There was a lot of sadness and sense of loss." A | If it was just her autism, per se, that's not what's so disabling. There are many men and women on the autism spectrum doing important things. It's the associated disabili- ties, the comorbidities, that are so difficult. It's hard to test her because she's so impatient. Oftentimes, her verbal IQ is pretty good, but it's the performance IQ that's just dismally low. She won't count money, for example. She can't do that. Q | What can you say about the genetic basis for autism? The expectation is that there will be 1,000 or so genes in the • Houston area's only MPH program in healthcare management • One of only !ve MPH programs in healthcare management in the nation accredited by the Commission on Accreditation of Healthcare Management Education (CAHME) • Located in the heart of the Texas Medical Center • Diverse faculty includes researchers, consultants, former executives and current administrators of major healthcare organizations • Offers degree and certi!cate programs in the fast-growing !eld of healthcare management Housed in UTHealth School of Public Health, the George McMillan Fleming Center for Healthcare Management provides rigorous training in healthcare management paired with a one-of-a-kind focus on population health. Learn more about our programs go.uth.edu/!emingcenter L E A R N F R O M L E A D E R S I N H E A LT H C A R E M A N A G E M E N T total sequencing. Where are we right now? A | We've identified at least 65 genes and that's just the beginning. One of the things that happened as I was finishing up the book is we did whole exome sequencing of Rachel here at Baylor College of Medicine in the department of genetics and we think we've identified a new gene for autism. The question is: What do you do with that information? Can you design interventions to improve especially the comorbidities associ- ated with autism? Q | These sound like questions for ethicists. A | We're already seeing, especially on social media, a lot of interesting questions about genetics from the community of people with autism. They're saying, 'What are you going to do with that information? Does that mean you're going to weed us out? Is this a form of eugenics?' So we're really going to need an unprecedented dialogue between 1 in 59 8-year-old children were identified with autism spectrum disorder (ASD) in 2014 — Of children identified with ASD: about 85% had developmental concerns by age 3, but only about 42% were evaluated for developmental concerns by age 3 — AUTISM BY THE NUMBERS Source: Centers for Disease Control and Prevention, Autism and Developmental Disabilities Monitoring Network

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