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A boy named James: The journey of autism researcher Robin Goin-Kochel

Marina Sarris
Interactive Autism Network at Kennedy Krieger Institute
Date Published: 
January 13, 2014
Drawing by James"Shoe" drawing by James

For some people, there is a moment when they realize what their vocation will be. For Robin P. Goin-Kochel, a visual reminder of that moment hangs in her office at Texas Children's Hospital. It's a large drawing of tangled black lines. In the corner, in red pen, is the name of the artist (James) and the title ("Shoe.") James was a little boy whose differences fascinated her when she was a student.

She met James while working at the Early Learning Center at the University of Tennessee-Knoxville, where she attended graduate school. Most of the preschoolers at the center were developing typically, but once in a while, a child with special needs would enroll. James was such a child, and Dr. Goin-Kochel just loved working with him.

He did not talk as clearly or as well as the other children. He also had sensory issues. The staff used a weighted vest and a technique called brushing, when a special brush is moved over the skin, to help him regulate his senses. One day in February 1998, he drew the picture that sits in her office today. She asked him what it was. He thought, and replied simply, "Shoe."

"He was so unique, and I really enjoyed working with him. I wanted to shift my attention to more atypical development in children," she said.

Starting down the road of autism research

Photo of Dr. Robin Goin-KochelWhile at VCU, she began using the internet to study families of children with autism, at the time an unusual approach to research. Today, she is Associate Director for Research at the Autism Center at Texas Children's Hospital and a top investigator for the Simons Simplex Collection (SSC) autism project, among other professional accomplishments. She has been part of autism research teams investigating medication use, genetic findings, parent experiences and perceptions, and the presence of autistic traits in families.So she did. After she enrolled in a doctoral program in developmental psychology at Virginia Commonwealth University (VCU), she decided to focus on special needs, specifically autism. (She does not believe James had autism, but the speech and sensory problems he experienced are certainly shared by children on the spectrum). A professor asked her to consider autism research, and "it ended up being a really great fit for me," she recalled.

James may have helped her choose the path of disability research, but Dr. Goin-Kochel knew from an early age that she wanted to study human behavior. While growing up in Fort Worth, Texas, she discovered her interest in psychology. "I was just so interested in why people do the things they do," she recalled. At Texas Woman's University, she majored in psychology, with a minor in sociology. Her parents fretted: psych majors rarely make much money, after all. But she loved studying and knew she would go on to graduate school. (She eventually would get two master's degrees and a Ph.D.)

Growing up in a large, extended family, she also knew she loved children. So heading off to the Child and Family Studies department at Tennessee seemed a natural next step. While in a master's degree program there, she learned about using Web-based technology to conduct research. In the 1990s, more people were beginning to go online from home, using dial-up services from their desk or laptop computers. For her doctoral degree, she decided to use this expanding technology to learn more about families raising children with autism spectrum disorder. "I was interested in gathering information from a large sample and using technology to do it," she explained.

A new tool for reaching parents of special kids

I was just so interested in why people do the things they do.

She created an online survey asking parents about the treatments they were using, the effectiveness of those treatments, their family medical histories, how many professionals they saw before their child was diagnosed with ASD — just about "everything under the sun," she said.

One of the things driving her study was her desire for more information on what treatments families were choosing, often in the absence of research on whether they were effective. Research takes time – time some parents may not have believed they had. "There are a lot of treatments out there and new ones coming on the market, but a lot of what's out there is not evidence-based. The research is not there to say it works," she said. She wondered, where do parents get their information about therapies, and what are they telling other parents?

She publicized her study to autism organizations. She received more than 700 responses in 18 months, and continued the research even after earning a doctorate in 2003.

This online effort inspired several later research articles by Dr. Goin-Kochel and her co-authors. The titles clearly reflect her interest in the experiences of parents, such as:

  • "How many doctors does it take to make an autism spectrum diagnosis?" (2006),
  • "Parental reports on the use of treatments and therapies for children with autism spectrum disorders" (2007), and
  • "My greatest joy and my greatest heart ache:" Parents' own words on how having a child in the autism spectrum has affected their lives and their families' lives. (2009).

Coming home

In 2005, she returned home to Texas to work on autism studies in the genetics lab of Dr. Arthur Beaudet at Baylor College of Medicine.

She said she was thrilled to be part of the SSC project at Baylor. "It's a great marriage between psychology and genetics – and one that was probably overdue." Families in the SSC contributed both data and genetic samples at Baylor and 11 other universities in the United States and Canada, providing a valuable database for scientists investigating everything from genetic changes in autism to the siblings of children with ASD.

She is currently interested in regression in autism – the sudden or gradual loss of skills that may occur in the toddler years – and how that may affect the child's later development. She already has published research on the relationship of regression and parents' beliefs about the cause of autism. In that study, parents of children who experienced a regression were more likely to believe vaccines or environmental toxins caused the condition than parents whose children appeared to have autism from birth.1 (The U.S. Institute of Medicine did not find a relationship between vaccines and autism.2)

After years devoted to research on children and parents, Dr. Goin-Kochel became a mother herself in 2012. She lives with her daughter and husband, a fifth-grade math teacher at a parochial school, in Texas. Being with her daughter "is all I want to do in my spare time," she said. The rest of the time, she's focused squarely on autism.

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References: 
  1. Goin-Kochel, R.P. & Myers, B.J. Congenital Versus Regressive Onset of Autism Spectrum Disorders: Parents' Beliefs About Causes. Focus on Autism and Other Developmental Disabilities. Fall 2005 20: 169-179. View abstract.
  2. Immunization Safety Review Committee, Board on Health Promotion and Disease Prevention, Institute of Medicine of the National Academies. (2004). Immunization safety review: Vaccines and autism. Washington, DC: National Academies Press. View summary.
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