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Caring for Adults with Autism

A working group based in the KP NCAL Division of Research seeks innovative ways to address the health care needs of adults with autism.

Steve Rich, MD, chief of Family Medicine for Kaiser Permanente Santa Rosa, with his son Scott Rich. Both are members of the ASD in Adults Workgroup at DOR.

The prevalence of autism spectrum disorders (ASD) has increased dramatically over the last three decades. From an estimated 1 in 2,500 in the 1980s, a recent report from the Centers for Disease Control and Prevention (CDC) estimated that 1 in 50 school children today has been diagnosed with an ASD.

Autism is a developmental disorder that often appears by age 3. It is recognized and diagnosed by impairment of the ability to form normal social relationships and communicate with others; at times it includes repetitive behavior patterns. The broad range of autism disorders are characterized as a “spectrum.” As children diagnosed with autism grow up, they are entering the health care system as adults in larger numbers.

“All these children with autism are turning into adults with autism,” said Scott Rich, a community member of KP NCAL’s ASD in Adults Workgroup, who was diagnosed with autism at age 3.

At KP NCAL’s Division of Research, the Autism Research Program has launched a broad effort—funded in part with a grant from the Special Hope Foundation—to address the health care needs of adults with autism. The ASD in Adults Workgroup, led by Lisa Croen, PhD, and Ousseny Zerbo, PhD, includes medical professionals from throughout KP NCAL, including physicians, mental health providers, psychiatrists, case managers, and social workers.

Their first task was to estimate the prevalence of ASDs among adult members of KP NCAL. Preliminary data puts that number at about 1 in 500 adult patients, Zerbo said; that translates into nearly 1 percent for members between 18 and 24 years old and 0.23 percent for those between 25 and 34 years old.

“Now we are looking at the prevalence of other medical conditions in this population, such as diabetes, hypertension, and psychiatric illnesses, so that we can evaluate health care utilization by our adult members with autism and inform doctors about any particular needs,” Zerbo said.

In the coming weeks, the workgroup will collaborate to send a short survey to Kaiser Permanente physicians and other health care providers in Northern California (via their chiefs) to assess their knowledge of ASDs and evaluate training needs for those providing medical care to adults with autism.

Rich, 30, of Santa Rosa, said the challenges facing adults with autism as they navigate the health care system may include heightened anxieties about lab tests and medical procedures, discomfort with removing clothing or being touched, and difficulties with following through on needed tests or medications.

“People may simply be afraid to walk into the office or to have a different technician every time,” Rich noted. “If I don’t have a reason to go to the doctor, I won’t go.”

Steve Rich, MD, chief of Family Medicine for Kaiser Permanente Santa Rosa and Scott Rich’s father, said the physician survey will inform efforts to raise awareness and address training needs across the Kaiser Permanente health care system in order to provide high-quality care to the members.

“Physicians may have a few adults in their practices who are on the spectrum, but not understand why they can’t connect with that patient,” said Dr. Rich. “Kaiser Permanente has a mandate to care for patients all along the spectrum. We will be developing tools and networks to care for this population.”

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