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Opinion / Cross Talk

How family ties to autism frame research perspectives

by  /  22 December 2015

At Spectrum, we specialize in telling stories that are of interest primarily to autism researchers. But many of these scientists have stories of their own that reveal their deep, personal connections to autism, and that drive them to try and improve the lives of people with the condition.

We asked five autism researchers to explain how having a loved one on the spectrum has opened up unexpected avenues of inquiry or given them unique perspectives on the real-world impact of their work.

The Experts:
Expert

Kevin Pelphrey

Harris Professor, Yale Child Study Center

Daughter inspired study of girls with autism.

Expert

Ron Thibert

Pediatric Epilepsy Specialist, Massachusetts General Hospital

Daughter on spectrum revealed gaps in my understanding

Expert

James Adams

Director of the Autism/Asperger’s Research Program, Arizona State University

Frustrations motivated change in my career

Expert

Jack Gilbert

Associate Professor of Ecology and Evolution, University of Chicago

I felt compelled to help those with autism

Expert

Erik Linstead

Assistant Professor of Computer Science, Chapman University

Technology can help make lives easier

Daughter inspired decision to focus on girls with autism.

I am fortunate to be the father of a brilliant, hilarious, beautiful young woman — Frances — who struggles each day with autism.

Parents manage with whatever tools they have to understand and help their children. I apply the tools I have developed as a neuroscientist to understand the perspective, strengths and difficulties of children like Frances. My mission is, through greater understanding, to provide Frances and children like her with opportunities to live happy, healthy and independent lives.

Pelphrey2.2

Frances shapes every aspect of how I view autism. I am so grateful for her viewpoint. In fact, I feel blessed to have the privilege to work in a field of science directly relevant to helping my daughter. I cannot imagine a more gratifying, happy life.

Frances inspired my decision to focus on girls with autism in the multisite National Institutes of Health Autism Center of Excellence Network project that I lead. Within the center, leading scientists are collecting brain imaging and genetic data from a large and well-characterized sample of girls with autism. This is an unprecedented opportunity to understand the unique developmental trajectories of girls with autism. We seek to generate discoveries that will lead to more effective treatments for girls and boys with autism.

I worry a lot about Frances as she makes her way through middle school. Fortunately, she is doing well and has a small circle of close friends, each with their own delightful quirks. But I still worry, because while middle school is a trying, awkward time for any child, it can be a gauntlet of social exclusion, teasing and even bullying for a young woman with autism. Painful episodes can launch a stress snowball that drives low self-esteem, depression and anxiety.

Girls with autism may be especially susceptible to the pain of social exclusion. This is because typically developing girls use social exclusion more often than boys do. Paradoxically, girls with autism may well have intact social motivation and brain systems for social perception, making them more resilient against core social deficits but more susceptible to the impact of social exclusion.

My colleagues and I have used brain imaging to investigate how social exclusion alters brain activity in teenagers with and without autism. We found that in both groups, social exclusion activates a network of brain regions involved in the experience and regulation of negative emotions. In other words, it hurts their feelings.

I believe this is but one example of the ways in which neuroscience can help us to understand the perspectives of our children, our brothers and sisters, our friends and acquaintances with autism. I believe that through careful research and hard work, this understanding will translate into meaningful improvements in the quality of life for my daughter and for all of our loved ones on the spectrum.

Daughter on spectrum revealed gaps in my understanding

My daughter Abigail was born in June 2005, just before the last year of my medical training in pediatric neurology. She was diagnosed with autism in January 2008, six months before I finished my epilepsy fellowship at Massachusetts General Hospital in Boston.

Ron-Thibert-450

I intended to become a doctor who sees all types of children with epilepsy. But as time went on, I decided to focus on the treatment of epilepsy in children with autism, with a special focus on the autism-related Angelman syndrome, Dup15q syndrome and Pitt Hopkins syndrome.

It was never my plan to specialize in autism, but having Abby gave me an understanding of these children and their families that most doctors do not have. In fact, before I had Abby, I mistakenly thought I had a good understanding of what autism was. Becoming a parent of a child with autism showed me how much I didn’t know.

Being able to view these children from the perspective of a doctor and a parent is a wonderful gift that I would not have without Abby. It has had a very positive impact on how I approach clinical care and the clinical research that arises from it.

Frustration at lack of research motivated change in career

When my daughter was diagnosed with autism at 2-and-a-half years old, it was devastating to my wife and me. We immediately began investigating many therapies and treatments but were frustrated by the lack of research on most of them.

Adams2.2-844

So, although I was an engineer, I switched my focus toward trying to understand the causes of autism and how to treat it. I began a series of research and treatment studies, often following up on treatments that we had tried for my daughter and thought had been helpful to her.

Although my daughter still has many challenges from both her autism and intellectual disability, I am very proud of how much she has learned to do. I am proud that she is now doing meaningful work that she enjoys.

Most importantly, I have learned to accept her challenges and be glad that, overall, she has a happy life. My wife and I continue to do all we can to help her lead as happy and fulfilling a life as possible.

I felt compelled to help people with autism

When my son Dylan was diagnosed with autism, I would not say that it was a surprise. We all knew that he wasn’t the same as other kids. He still isn’t. But you know what? That’s cool, too. He adds diversity to our lives. And while he can be challenging sometimes, he is never dull.

What he did was raise my awareness level of children on the spectrum who were suffering: those who couldn’t communicate at all, those with crippling bowel disorders and those who were locked in completely. I felt compelled to help these children and adults, and autism was an interesting conundrum.

When Dylan was diagnosed, I was just getting into the field. So I contacted some friends who were working in the field, cold-called some others and started up a national autism microbiome group. I found others like me who were compelled to work on this problem because of their family members, but also those who were fascinated for clinical and intellectual reasons.

I was compelled enough to fund the autism cohort in the American Gut Project, and have been working with others, including groups at Stanford University led by Dennis Wall, that are building a network of interested parties. We are still in the discovery stage but already starting to think about potential probiotic therapies for various folks.

I have never been ashamed or worried about Dylan’s condition. In fact, I am not even trying to cure or alter my son — he is perfect just the way he is. Dylan is the light of my life. Every day he amazes me, and he is doing so incredibly well with life. He is going to be just fine.

Technology can help make lives of people with autism easier

I suspect that, like most parents, I had a pretty sudden introduction to autism. When my daughter was 3 years old, she got a formal diagnosis. My first thought was, “Holy smokes, I’ve spent six years of my life in grad school studying computer science. Maybe if I had studied psychology or neuroscience, I could do something to help my kid.”

But when I started to look at technology that I thought might help my daughter with her social anxiety and things like that, I found that there weren’t a lot of good options out there. That really surprised me. And then, as we started talking with different specialists, I realized that all of them were recording data on paper. It was really hard to share data across specialists. That surprised me, too, because everyone can share what they had for breakfast on Facebook. Surely there was a better way of communicating these data to my daughter’s various caregivers than just some paper and a pencil and begging and pleading?

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So I decided to change my research focus, which has always been machine learning, to working on machine learning in assistive technology for autism. My grad students and I started working on what we thought were some important problems, and it’s just taken off from there.

People jokingly talk about my research as “the dog’s breakfast,” because it involves a little bit of everything. We have a platform called the Autism Management Platform, which lets networks of folks working with a particular child share multimedia data in real time. So if you’re seeing a particular behavior, you can upload a video clip and tag it, and other people can comment on it, and you can analyze the data in real time.

We have another project called Smart Dresser, which basically catalogs everything in your child’s closet, and then uses some basic machine learning to suggest outfits. It takes into account things like weather and personal preferences, so children can preserve their autonomy when they get dressed in the morning, but not do something like wear a raincoat if it’s 94 degrees outside.

We’re also doing some virtual reality work to help children with autism work on social interactions in a virtual world. And lastly, I’m a close collaborator of the Center for Autism and Related Disorders, a Los Angeles-based corporation that specializes in autism treatment. My team has been mining the organization’s behavioral data, collected from children with autism, in order to try to figure out how things such as treatment intensity and supervision affect how quickly the children master certain skills.

These may all seem like relatively trivial problems. But I think that if you solve them, you can actually help make people’s lives easier, better or more enjoyable. It doesn’t just have to be about finding the genetic underpinnings of autism or finding a drug to treat it. There are a lot of things that we can do with technology.


About Cross Talk
Discussions among leading experts in the field. Submit your questions to community@spectrumnews.org.
  • Ethyl

    Beautiful!

  • Michelle Sarabia

    This is indeed wonderful… and I think there’s a need to speak with autism researchers who are actually autistic themselves. For example, Markram.

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