Autism diagnoses are rising at an alarming rate, but help is out there.
JEN REINMUTH remembers well the five hours she spent in the waiting room. Her 18-month-old straddled her hip, a diaper bag hung from her shoulder, and stubborn resolve filled her heart: She was not leaving without seeing a specialist. Reinmuth knew that something was wrong with one of her twin boys and was tired of being written off as an overly worried mother.
Ten minutes with the doctor, and the diagnosis was clear: autism.
Reinmuth was devastated. Unprepared, she had joined a growing wave of parents whose children had been given a diagnosis of autism spectrum disorder—a range of brain disorders that can include language and social challenges, sensory disorders, cognitive and motor difficulties, and emotional and behavioral problems. There is no proven cause or cure.
Like a lot of parents, Reinmuth worried about how her son, Mike, would get the additional help he needed. That’s where PSU’s Autism Training and Research Center comes in. The center, established in 2005, developed a comprehensive autism program for teaching strategies rooted in research. It partnered with Oregon education districts to pilot the program, and quickly demonstrated improvements for kids. The center now is testing the program in a five-year project with 350 children in 40 Washington school districts.
Jen Reinmuth reads to her 9-year-old son, Mike, who received early intervention for his autism and is at grade level. Photos by Kelly James.
The need for this training continues to grow. Since Mike’s diagnosis in 2004, numbers for autism have skyrocketed. In April, the Oregon Department of Education reported serving 8,694 students with autism, a 14.7 percent increase since 2008-09. Earlier this year, the Centers for Disease Control and Prevention (CDC) reported its latest data estimate that 1 in 88 American children have some form of autism spectrum disorder, a 70 percent increase in six years. And boys with autism continue to outnumber girls 5-to-1, according to the CDC report. This increase in diagnoses has prompted intense speculation.
Some researchers attribute the rise to increased awareness of parents and medical professionals. Others point to broadening diagnostic criteria, which include children who in the past simply might have been considered odd or shy. Debate over diagnostic criteria has been especially heated this year as the American Psychiatric Association considers possible changes in how autism is defined in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, due out next year.
In many states, a shift in the DSM definition rings alarm bells because a medical diagnosis is required before a child may receive special education services tailored to autism. Critics worry that the change will sharply cut autism disorder diagnoses, and abandon people who have benefited from services but no longer fit the narrower definition.
However, Oregon is relatively insulated from DSM changes, says Helen Young, director of PSU’s autism center. Unlike many other states, the Oregon Department of Education does not require a medical diagnosis to grant services. Instead, it follows state rules to establish eligibility for school-based programs. As a result, Young says, any change in the DSM likely will have minimal effects on Oregon families.
PSU’S AUTISM CENTER believes in early intervention, a value that most special education researchers share, says Young.
“If kids get services early, their lives can be so improved,” she says.
The PSU program includes trial training of unique language and social skills for children who are two to five years old. An example of that training might look like this: An autistic three-year-old with language difficulties wants to play with a truck on a shelf and communicates by pointing or grunting. The adult, who put the truck out of reach intentionally, coaches the child to ask for the truck by encouraging him to make the “t” sound. The child then gets the truck. Over time, the adult helps the child form the full word.
While PSU’s center focuses primarily on training educators to work with kids in preschool or school settings, it also provides training to parents through workshops.
“Parents can be doing a lot of these things at home,” says professor Ruth Falco, a special education colleague of Young. This kind of early training is inexpensive, Falco says, especially when compared to the plethora of unproven goods and services sold on the Internet for thousands of dollars.
“I’ve seen families sell their house, sell everything, to get the money to buy services to help their kid,” Young says. “That’s tragic.”
Reinmuth, who is now a graduate assistant in the autism center as she pursues a master’s degree in special education, remembers seeing ads for $20,000 sensory rooms for kids with autism. What proved more effective for her son were some of the deceptively simple strategies the center teaches, such as using pictures of food to help her son communicate what he wanted to eat. Each word was a triumph.
Alumnus and major donor Fariborz Maseeh ’80, MS ’84 is also the concerned parent of a child with autism. Frustrated with having to drive from location to location for services for his son, he created the Kids Institute for Development & Advancement (www.kida.com). Located in Orange County, it is one of California’s largest centers for autism and a place for families needing education and total treatment under the same roof for their autistic children.
Reinmuth wishes there had been more parent resources when she was first trying to figure out how to help her son. Instead, she jokes, she “got a Ph.D. from the University of Google.”
That could change for Portland area residents. In June, Young and Falco plan to apply for an Institute of Education Sciences grant to further develop parent training and create a process for parents and educators to collaborate on using the materials, Young says. The center also is looking for funds to develop the PSU Autism Training and Research Center Parent Education Unit, which would provide an array of training materials and workshops on evidence-based strategies parents can use at home. Services would be free.
“It will make a huge positive impact on local families,” Young says.
For information about supporting the center, contact Aaron Pearlman at 503-725-8020 or firstname.lastname@example.org.
Stepping in early
Parents who suspect their child may have autism can seek early intervention—from birth to three years old—through the Oregon Department of Education. The child will be screened to determine if he or she is eligible for free state services. For more information, go to ode.state.or.us or call 503-947-5747. The state has nine geographic service areas. Other resources include the Autism Society of Oregon, oregonautism.com.
Su Yim, a graduate assistant in the PSU Office of University Communications, will be graduating in June with a master’s in social work.