As a developmental pediatrician specializing in autism, I find it difficult to leave my work at the office. Autism is everywhere these days: in front-page news, on late-night TV, as a topic at parties and on the minds of family and friends.
So it was not at all surprising to me that on Thanksgiving, while I was in mid-chew of a large bite of turkey and eying the stuffing, a relative asked what I thought about a particular theory of autism. The question deserved a considered response and I gave it my full attention because of an experience I had had earlier in the week.
Pushing my kids out the door, battling traffic over the George Washington Bridge and the Cross Bronx Expressway, I was rushing to work earlier than usual for a meeting of the Combined Molecular and Clinical Genetics Conference. This was the fourth meeting of the interdisciplinary group organized by my boss, Dr. Robert Marion, but the first I was attending. I was a little afraid that the interdisciplinary meeting I was racing toward would be lightly attended. After all, it was early on a Monday during the week of Thanksgiving, and on a topic that was esoteric enough to be of intense interest to perhaps only a few stalwarts in the fields of autism research and clinical care.
But when the elevator doors opened on the fourth floor of Einstein’s Price Center/Block Research Pavilion and the conference room came into view, I stood with my mouth agape. The room was filled to the brim with people—I got the last seat in an outer circle of chairs ringing the large central table—all discussing ways to promote specific research questions, many pertaining to autism. Despite my 20 years as a developmental pediatrician at Einstein, working with children with autism and their families, I had never even laid eyes on the majority of the people in the room. Yet as I listened to each speak, it was clear that they were not newcomers. We had been living parallel lives: clinicians and researchers devoted to the treatment and study of autism.
The overarching topic at hand was the need for collaboration; the researchers spoke about recent advances in their particular areas of interest and their current questions. The next step for many of the researchers was connecting with clinicians who have patients with these conditions who might be willing to donate their blood, their saliva or perhaps their skin cells, hair or teeth for study.
I heard about single-gene conditions and rare variants, epigenetic causes of autism and new technology. I looked around the room and saw other researchers who I knew studied children with autism spectrum disorder (ASD) to understand how their minds work—their sensory functioning, auditory processing, eye tracking and stereotypic movements—and still other researchers who carry out drug studies, develop novel interventions and look at animal models of autism. The room pulsated with creative energy on the topic of causes of autism.
The standard of clinical care for the child with autism and his or her family requires a “banquet table” of clinicians: our multidisciplinary team includes developmental pediatricians, psychologists, speech therapists, special educators, behavioral specialists, social workers, nutritionists, audiologists and occupational and physical therapists, at a minimum. When a child toe-walks, we reach out to physiatrists and orthotists. We consult with our genetics colleagues to help answer questions regarding etiology and recurrence risk, and with psychiatrists for difficult cases relating to behavioral issues. To evaluate and treat the comorbid medical problems many children with ASD experience, such as seizures, gastrointestinal (GI) symptoms and sleep problems, we call upon our neurology, GI and pulmonary colleagues. We now welcome our research colleagues to the table.
At this table in the Price Center/Block Research Pavilion, I began thinking of the role I could play in the collaboration. Different families came immediately to mind: a family with two children with autism, one albino; another family with two children with ASD as well as neonatal cataracts; another with ASD and long QT syndrome, a conduction problem of the heart.
Does the co-occurrence of these uncommon conditions with ASD provide clues to the etiology of ASD in these children, or—even more exciting—to its treatment? When I am working with families of children with autism, there are inevitably assorted unanswered questions about causes and what the future holds that loom large. On this inspiring morning, I had the sense that there were many great minds belonging to the passionate, well-spoken, impressive and early-rising researchers who filled the room where I sat. I know that they belong “at the table” of clinical care as well.
These are exciting times: for both clinicians and researchers, there is power in numbers and a coalescence of interest and talent.
When I answered my relative at the Thanksgiving table who asked about the causes of autism, I called upon the energy and optimism that I had felt just days before. It was worth missing the stuffing.
I will now look forward to these early monthly meetings with my new colleagues—teaming up in order to play an active role to help children with ASD and their families get answers to those big, unanswered questions.
Oh—and we will certainly need a bigger table.
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Totally agree. This is a situation like so many others in our society that is multifaceted and needs to be examined with a large scale view. Too often people try to back themselves in a corner in their efforts to understand.
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keep up the good work and sharing your base with others will make the difference.,