Parents Help Revamp Autism Treatment Center

In Portland, Oregon, a “Family Advisory Committee” helps autism specialists deliver more accessible care.

July 19, 2012
By Kristina Grifantini

Laura Wilson’s son was diagnosed with autism spectrum disorder when he was 5 years old at the Oregon Health & Science University’s Institute on Development and Disability. Her experience, she says, wasn’t ideal. “It was a comprehensive clinic that did a great job of evaluating, but after families left the clinic they had no support,” says Wilson, whose son is now 15. “You had this big bomb drop in your lap with no resources for where to go or what to do.”

Since then a lot has changed, Wilson says. Four months ago, the center decided to restructure their autism program by consolidating clinical treatment and research efforts. Healthcare practitioners have bolstered their paperwork and website to provide parents with more resources and accessible information. They are making other improvements too, such as reducing wait times and reaching out to the community more, according to site coordinator Lisa Voltolina.

The center is part of Collaborative to Improve Care for Children with Autism Spectrum Disorder, an initiative led by NICHQ in conjunction with the Autism Treatment Network (ATN). 14 participating autism treatment centers across North America are using quality improvement techniques to improve care. What’s more, the centers are partnering with parents of children with autism to get an inside perspective on what improvements the centers should make.

“A lot of stuff we had prioritized weren’t really that important to families coming in for a diagnosis,” says Voltolina. The center’s Family Advisory Committee, consisting of 18 volunteering families, ranked different areas to improve, some of which surprised the clinicians. “Rather than focusing on clinical things, like having our medical records flawless in every way, we really needed to focus on our recommendation plans so that a family could read them and use them at home. Having the parent perspective really revamped our process,” says Voltolina.

Wilson is now a Family Consultant at the center, hired two years ago to be a resource for parents. She meets them before their appointments and calls after to get feedback and see if they needed help.

“The autism care has been improving every year,” says Wilson. When the center first brought in a family consultant, parents gave poor feedback. They felt clinicians did not connect well, recommendations were too brief, and no direction was given on where to go after receiving a diagnosis, says Wilson. “I rarely ever get negative feedback anymore. Clinicians call families by their first names and spend time with each family at the end of the evaluation making sure that recommendations are understood,” she says. After appointments, clinicians follow up with families to answer any questions.

Wilson and the Family Advisory Committee have also improved the resources families get after an initial diagnosis. Some of the resources included in an informational folder weren’t helpful, according to parents on the committee. So they added more up-to-date and relevant recommendations, and reviewed informational brochures and websites to make sure “they’re written in a way that’s meaningful for the parents and not necessarily in a way that’s meaningful to clinicians,” says Voltolina.

The Family Advisory Committee has been “a blessing,” says Kerry Brownridge, a mother of twins with autism and parent participant. “It’s a group of dynamic parents whose main goal is to improve communication within the community, with clinicians and amongst ourselves, to make the autism journey for parents easier,” she says.

“Autism is on the rise and there’s still a lot of education that needs to be done,” Brownridge adds. “I think if we can bridge the gap between community, clinicians and families it’s going to make the diagnosis of autism much more livable.”