Too often, the autism label obscures the individual, says Ricki Robinson, M.D., M.P.H., today’s keynote speaker at the Autism Speaks conference Treating the Whole Person with Autism: Providing Comprehensive Care for Children and Adolescents with ASD, in Columbus, Ohio. Both healthcare providers and parents need to look beyond the label to get to know the individual child, she argues.
Dr. Robinson is a clinical professor of pediatrics at the University of Southern California Keck School of Medicine, with over 20 years’ experience working with children and families affected by autism. She is also author of Autism Solutions: How to Create a Healthy and Meaningful Life for Your Child.
“By knowing the individual child, we can help him lead a more meaningful, productive life,” Dr. Robinson says. Admittedly, autism’s core features of social difficulty, language impairment and repetitive behaviors can make it more difficult to see the child behind the label, she adds. “You have to look beyond the behaviors to figure out what’s going on with your child.”
Similarly, parents and healthcare providers often lose sight of the “whole person” as they struggle to address autism’s many associated concerns – from irritability, anxiety and sleep deficits to immune dysfunction, GI disorders and more.
“Whole person” medical care aims to meet each individual’s unique set of needs and challenges. This is particularly true with autism, which varies tremendously from person to person in both core symptoms and associated medical conditions.
In tailoring treatment regimes, Dr. Robinson urges caregivers to view a child through a wide array of “lenses” that together paint a picture of the child’s life. These lenses include the child’s physical and mental health, behaviors, intellectual interests and creative pursuits. Are a child’s needs in these areas going unmet? If so, caregivers need to reevaluate and adjust their strategies to ensure that the child is receiving the support needed to find fulfillment.
Based on this philosophy, Dr. Robinson urges parents and healthcare providers to collaborate in creating treatment plans that embrace a lifetime of goals for each child. As partners in this treatment team, physicians can recognize and treat medical conditions, while parents closely monitor their child’s response during the course of daily life.
In her own practice, Dr. Robinson says, she begins by working with parents to identify their child’s major challenges. From this outline, she begins building a personalized treatment plan. This plan may include medical therapies as well as behavioral interventions.
If something isn’t working, Dr. Robinson urges parents and physicians to think like detectives. This includes searching for the root of problem behaviors and addressing each potential cause until the issue resolves.
The behavioral and medical issues that often plague children with autism seldom exist in isolation, she adds. Physical symptoms and emotional challenges intertwine. As a result, solving any one problem involves simultaneously addressing other issues.
“If your child isn’t feeling well and can’t focus, behavioral therapy isn’t going to deliver the full bang for your buck,” she says.
Reflecting on her experience as a pediatrician, Dr. Robinson says, “In working with families and kids I came to understand that their needs change over time, and that we have to be flexible and keep treatment plans dynamic.”
Dr. Robinson began working with children with autism 20 years ago, when she met Ryan, the newly diagnosed son of a family friend. “It was shocking how little hope there was,” she says. “His therapists said it wasn’t realistic to have hope.” Inspired by Ryan, Dr. Robinson built a career on working with children and families affected by autism.
“We have to work with families in the ways that are best for them, not for the system,” she says. “I want to empower parents to show them that they should be expecting this level of service from their healthcare practitioners.”
Her philosophy, she says, is built on a foundation of respect and inclusion. In her practice, for instance, she talks directly to the children she sees, regardless of whether they lack language. In her interactions with the family, she strives to instill positive expectations for a child’s development and progress.
“Hope and expectations are so necessary to progress in this field,” Dr. Robinson concludes.
Autism Speaks Autism Treatment Network (ATN) is dedicated to the mission of “whole person” care for children and families affected by autism. For more information on the ATN and the location of your nearest ATN medical center, see the ATN homepage on the Autism Speaks website.