Anyone who has raised a child with autism spectrum disorder (ASD) knows how challenging it can be.
And the problems don’t end when the child grows up.
Finding and accessing services once the child graduates from high school can be a quagmire of different jurisdictions, different requirements, different rules, and different hoops to jump through.
That’s where Julie Lounds Taylor, PhD, comes in.
Taylor is an assistant professor of pediatrics and special education at Vanderbilt University in Nashville, Tenn. She wondered if training parents to be better advocates would make it easier for them to help their children access services.
She decided to test that hypothesis.
“The rules are complex, and some [services are] difficult to access,” she told Healthline in an interview.
“We wanted to train parents to be advocates for children. There was little post-high school support,” she said. “Parents got little information, so it was hard for them to plan after the transition.”
“You go to one place for income assistance, another place for health insurance, yet somewhere else for speech therapy,” she continued. “There’s no central place.”
She noted that each state — even each city or county — may offer different services according to different eligibility requirements.
Sometimes there are waiting lists.
Each child’s needs are different, and many families encounter obstacles while trying to access the appropriate benefits and services.
Learning to be advocates
For the study, Taylor’s team enrolled 45 families, all with a child with autism who was within two years of graduating from high school, or was already out.
Families were randomly assigned to either the intervention group or a control group. Members of the control group were told they were on a waiting list and could take the training a year later.
“We developed a training program with 12 weekly sessions,” Taylor explained. “Each session focused on a different aspect of services for adults.”
During each two-and-a-half-hour session, the attendees also shared tips and talked to each other about what might be helpful.
“The families enjoyed being with each other, did trouble-shooting together, and were happy to be with others like themselves,” she said.
Overall, the investigators found what they had expected. “More parental knowledge made [the parents in the training group] feel more empowered,” Taylor said.
At the end of the year the results were quantified: 61 percent of the intervention group had found more services compared to 35 percent of the control group.
The results were published earlier this year in the Journal of Autism and Developmental Disorders.
Acknowledging that her test group was small, Taylor said she wants to replicate the program on a larger scale.
“Do our findings hold up?” she asked. “We want to make the training nationally relevant. Right now it’s Tennessee-specific.”
She also wants to test if information provided in group sessions was more or less useful than providing the material on ASD online.
Taylor will present her findings at the 16th Annual International Meeting for Autism Research (IMFAR), the world’s largest autism research conference, in San Francisco from May 10-13.
Though Taylor’s research on advocacy is new, some nonprofit organizations already offer programs that support people with ASD and their caregivers to seek out resources.
For example, since 1965, the Autism Society has focused on its mission to empower people who have ASD with information and appropriate direction.
Catherine Medovich, an information and referral specialist at the Autism Society, has seen the challenges families can face.
“I talk to parents all day long,” she told Healthline. “Parents go through stages. When the child is 1 or 2 years old, the diagnosis is a big shock. With older children, it’s different. Now they’re 11 or 12 and they may have been misdiagnosed.”
“The diagnosis changes things,” Medovich added.
Her job is to point people directly to resources, such as parent support groups.
“We also work with educators, if the child needs an [individual education plan],” she said.
Autism is not a one-size-fits-all diagnosis, so strategies depend on each child’s level of ability.
“The direction can be different if a child doesn’t speak, or they lack social understanding, or have a challenge with focus,” Medovich explained.
With many diagnoses, early and intensive intervention is crucial.
Such interventions generally involve working with the child 20 to 30 hours per week with applied behavior analysis (ABA) techniques.
ABA means taking a skill and breaking it down into bits, whether it’s an academic or a social skill.
“Our calls run the gamut,” Medovich said. “Some need advocacy or help with coworkers or siblings. Some families report bullying. Sometimes the child is in the criminal justice system.”
Though children with ASD have differing needs, organizations like the Autism Society can help connect families with services and support.