CPD clinic offers interdisciplinary evaluation of autismNov 30, 2012
By Sue Reeves
Often, the diagnosis of autism comes from a single professional—a psychologist, a medical doctor, a social worker—and parents are left with that diagnosis, but no clue about what to do next. Who should they see, where should they go to find the help their child needs?
The Autism Spectrum Disorder (ASD) Evaluation Clinic at Utah State University’s Center for Persons with Disabilities is taking a different approach.
“We realized that one of the complaints of parents of kids with ASD is that they have to go six different places to get help,” said clinical psychologist Marty Toohill. “We asked, ‘Can we do this under one roof?’”
Sue Olsen, CPD Director of Exemplary Services and the clinic’s administrator, said that in addition to the “gold standards” of autism testing—the Autism Developmental Inventory (ADI) and the Autism Developmental Observation Schedule (ADOS)—the clinic evaluation team also conducts speech/language evaluations, occupational therapy evaluations including sensory processing and overall motor development, and medical evaluations through the CPD Biomedical Division to determine if there are any genetic or other health reasons that can contribute to the diagnosis.
“We used the best practices from each discipline to build the clinic,” said Vicki Simonsmeier, assistant clinical professor in USU’s Communication Disorders and Deaf Education department. She coordinates speech-language evaluations and, with Toohill, coordinates the clinic’s operations.
The ADI, an 80-page scripted interview that can take as long as three hours to complete, is often the first experience parents have with the clinic, said nurse practitioner George Wootton. The interview gathers information on the three main areas of deficit seen in children with autism: social, communication and behavior. Wootton and Simonsmeier each administer the ADI. Toohill administers the ADOS and cognitive testing, which includes direct observation of the children as they play and interact with others.
Pediatric occupational therapist Ryan Winn also observes and engages in pretend play to determine how a child responds to sight, sound, touch and movement. Some behaviors might not necessarily meet the criteria for autism, he said, but instead may suggest a sensory processing issue.
Dennis Odell is the director of medical services and co-director of the CPD’s Biomedical Division, and is in private clinical practice in pediatrics. In the autism clinic, Odell performs the health evaluation and developmental screen, looking for diagnostic signs and symptoms of autism and its associated problems.
“I’ve been working with kids a long, long time,” Odell said. “We’ve been seeing kids with autism for years in the medical clinic and always needed help from the allied health professions. It’s really nice to have it all under one roof.”
As part of his 2009 Utah Regional Leadership Education in Neurodevelopmental Disabilities (URLEND) project, Wootton researched autism clinics across the country with the goal of finding a model on which to base the CPD’s clinic. He found 18 that claimed to be multidisciplinary or interdisciplinary programs.
Multidisciplinary means several disciplines are involved in the process and contribute to the final report, although they operate independently and there is no real communication between them. Interdisciplinary clinics include multiple disciplines, but the decision-making is done as a group. Often, the process is derailed by lack of funding and what Wootton calls turf issues—professionals who don’t “play well together.”
“I never did find a model we could build our clinic on,” he said.
A true interdisciplinary approach involves a great deal of time to problem-solve and prioritize interventions, and is absolutely the best way to do an autism clinic, Wootten said.
In many clinics, the children are seen by one person who administers one test, Simonsmeier said.
“We really feel they are best evaluated by a group of professionals … Our evaluation takes two days, so everyone sees the child on multiple occasions,” she said. “We see them at their best and we see the things they struggle with.”
In addition to interacting with a child, Winn goes over the standardized assessment questions with parents, asking for specific examples to really pinpoint what is going on with the child. Often without realizing it, he said, parents have created accommodations to deal with a child’s quirky behaviors without triggering a meltdown.
“They’ve kind of created this world they and their children can survive in,” he said.
As the parent of a child who has several challenges, Winn can empathize—and sympathize—with the parents of the children he evaluates.
“I really know what it’s like,” he said. “I know what the emotions are. I think it makes me a better diagnostician and a better therapist.”
Filling a need
The clinic evaluated its first patient in March 2011 and has seen about 150 children since then, according to Olsen. Simonsmeier said they recently started seeing two clients a week instead of one.
“There’s just such a need, a really huge need,” she said.
Fees for a clinic evaluation are assessed on a tiered, income-based scale, Simonsmeier said. The current cut-off is age 15, said Wooton, but plans are being made to expand the evaluation services into early and middle adulthood.
“Clinics are hard to get into, and expensive,” Simonsmeier said. “We wanted it to be accessible and to offer the best services, and then to develop interventions.”
Logan, Utah, the home of Utah State University, is situated in a mountain valley about halfway between Salt Lake City and Pocatello, Idaho. The relatively remote location, however, has not deterred parents from making the trek to the clinic.
“We are getting families from outside the area who want that broader evaluation and are willing to travel for it,” Olsen said.
USU students also are involved with the clinic, Simonsmeier said, another way in which it differs from others across the country.
“This is a training campus, so we felt compelled to have student training,” she said. Students normally learn only what is required in their fields, and are not usually exposed to an interdisciplinary approach. Many portions of the evaluations are conducted by graduate and doctoral students, under the direct supervision of both Simonsmeier and Toohill.
“This is a really cool training thing for our students,” Simonsmeier said. “When they leave, they will have a skill many others won’t have.”
Putting it all together
After all of the evaluations have been completed, Toohill and Simonsmeier meet to discuss and work through the findings, prioritizing interventions according to the child’s needs. They then meet with the family in a feedback session to provide the diagnosis and make recommendations for the treatment and education of the child. Often, parents will offer new information during the feedback session that can still be incorporated into the clinical findings.
“Parents just want to talk,” Wootton said. “They’ve been waiting for months to talk about their child they’re concerned about.”
The feedback session is helpful for the parents, Simonsmeier said, because it helps them see the all pieces of information that led the team to its recommendations.
“We share with parents in a way that helps them see how we got there … this is what we’re diagnosing and this is where we’re going,” said Simonsmeier.
The reports generated by the interdisciplinary team are often more than 20 pages long, and are written without a lot of medical and academic phrases that can be confusing.
“We want the parents to be able to take it home and read it later and understand it,” said Simonsmeier. “We take out the jargon to make it easier to understand. We could make it shorter, but it wouldn’t be as useful. We try not to overwhelm the parents.”
In addition to the extensive report, the clinic maintains a list of community resources so parents have a better idea of what their next steps might be.
“When people walk out of here, they know where to go to get services,” said Toohill.See all featured stories