After a child is diagnosed with autism spectrum disorder (ASD), parents grasp at hints that might help them imagine the future. “What will my child be like as an adult?” they wonder. “How will we manage?”
UW Medicine’s new Adult Autism Clinic helps patients and families address one essential aspect of that: the transition from pediatric to adult medicine, to provide continuity of care that helps individuals reach their potential development.
“Not just autism care but coordinating specialty medical care for adults with autism,” specified Dr. Gary Stobbe, the clinic’s director and one of the region’s most experienced practitioners in the disorder. After a decade in private practice, Stobbe in 2003 co-founded Seattle’s nonprofit Autism Spectrum Treatment and Research Center. Nearly 900 families were receiving treatment there in 2009, when Seattle Children’s brought the program into its own center.
At Children’s, Stobbe recognized an acute situation: autism’s increasing prevalence among young adults.
“Much like what we saw in the 90’s with the need for early childhood intervention, now we need that same thing for teenagers and young adults,” he said.
The changes between ages 18 and 21 can bring upheaval and distress even to families best equipped to deal with a child’s autism. First, the patient must relinquish his pediatric practitioner and re-establish care with someone mostly or wholly unknown. This is doubly difficult because individuals with autism base trust in familiarity.
Second, the patient loses access to public school, an anchor of the routine so prized by individuals with autism, and the mainstay of support that allows those parents to hold jobs and maintain a semblance of normal life. Community services that might step into that role are scant, Stobbe said.
“That’s a real problem time because these individuals lose their daytime activities. Trying to help navigate and find appropriate services in the community can overwhelm families.”
Longer-term, Stobbe hopes the clinic can be an advocate in that vein, but its current focus is to diagnose and treat autism, including medication management, for patients 18 and older and to assist with transitions to new caregivers for other medical conditions that continue or develop.
“Many individuals we work with have difficulty engaging with a standard office visit,” Stobbe said. “Getting procedures done can be very difficult; some adults can’t get blood drawn unless they’re under anesthesia. We want their experience in UW Medicine clinics to be the best possible.
“Another area is mental health. Many individuals with autism take behavioral medication for symptoms of anxiety or mood instability, attention deficit or more severe disruptive or self-injurious behaviors. The medication regimen can be more complex than an internist or family-practice doctor is comfortable with.”
Care of young children with autism starts with a relatively standardized approach, which is tailored over time, based on their development. By teenage years, individuals’ needs are relatively defined, Stobbe said, and their trajectory for continued development can be discerned. Some will go on to become independent or semi-independent in their late 20s or early 30s – but that potential is more likely realized if care and counseling are not abruptly interrupted between 18 and 21, he added.
“We’re trying to get a message across to the families and medical providers that the work is not done. We don’t want to lose momentum as they move into their 20’s, we want to continue the progress that these individuals have achieved.”
Because Stobbe maintains his role in caring for young adults in Children’s program, he is well-positioned to help patients and families transition into the world of adult medicine.
To refer a patient or learn more, contact the Adult Autism Clinic at 206.598.7792 (p) and 206.598.7794 (f).