How can you create a special day for hundreds of families from different backgrounds, whose common feature is having a child with Autism Spectrum Disorder? This day must succeed in providing clinical and scientific information that simultaneously delivers hope while accurately depicting only partial scientific and clinical progress in the field. Each year, this is the challenge that the clinical and research faculty from the Stanford Autism Center at Lucile Packard Children’s Hospital face, as they plan their annual update for the ASD community of the Bay Area.
The phenomenon of ASD presents an enormous set of challenges to our society by virtue of the degree of disability and hardship that accompanies it, and by the sheer numbers of children (1 in 68, according to a 2014 CDC report) who have this disabling neurodevelopmental disorder. The parents want to know everything from how to help their newly-diagnosed toddler learn to communicate, to understanding why their children have ASD in the first place, and to learn how can they find better ways to help their children have friends, learn in school, and, as young adults, become as self-sufficient and engaged in their communities as possible.
The 7th Annual Stanford Autism Update that took place at the Arrillaga Alumni Center on April 19, 2014 took on all these challenges. The parents heard talks about new evidence-based ways to improve peer social life for children, teenagers and young adults. They peered into the latest working models of the human brain to learn from a neuroscientist how the neural networks in the brains of children with ASD might be different from those of typically-developing children. They saw videos of how communication through eye gaze and shared attention between adults and children foster language development, and how toddlers with ASD seem to lack the same facility for this as other children.
Then, perhaps the highlight of the entire day, they heard a talk by a young man, Paul Griffin, from Santa Barbara, California, who described how he, his parents and a team of skilled care providers, conquered – not easily, but with great effort – the many challenges he faced as a young adult with ASD in succeeding at college. This was not a sugar-coated fairy tale that the assembled parents would have difficulty applying to their own child’s experience. This was Paul’s true story, full of the details that make a story real, about the determination, teamwork, and sheer grit that enabled a young man, not so different from their own children, to successfully graduate from college and to find a productive job.
Mixed in with the formal lectures were short talks by scientists, clinicians, and highly specialized educators about the latest promising pharmacotherapy research, studying Oxytocin and Vasopressin, how the growth of the brain is different in ASD children, the interaction of genes and environment in the origins of ASD, the techniques of tracking social skill development, and the types of resources available at the college level for the 30 percent of teenagers with ASD whose intellectual and academic potential creates for them the possibility of higher education. These breakout sessions provided parents with an opportunity to question the experts, both to be sure they understood the latest scientific progress and to hear the scientists explain the difficulties and barriers they faced in translating scientific knowledge into clinical practice.
At the end of the day, parents rated the day in questionnaires and gave us their feedback that the conference had succeeded. There was a sense of hope, as embodied in the determination of one young man with ASD to graduate from college, but it was leavened with a realization of the tremendous effort that was necessary to make it happen. Similarly, it was clear that important scientific progress was being made, but that there was much more to be done before the mysteries of Autism Spectrum Disorder are finally solved.
- Carl Feinstein, MD
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