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Research

That Matters

These are no longer theoretical questions in the U.S. classroom. As the number of children diagnosed with Autistic Spectrum Disorder (ASD) booms and the push to include them in general education classrooms gathers momentum, the public school system is being tested in ways that were unimaginable only a few decades ago.

“Thirty years ago, when I chose special education work — or it chose me — the number of kids diagnosed with autism was three to five out of 10,000. Now it’s one out of 150,” says professor Ilene Schwartz, who chairs the special education department at the UW’s College of Education. “When I first said I worked with kids who were autistic, people would ask, ‘Are those the kids who draw really well?’ Now everyone knows what autism is.”

Last year in Washington State, public schools served 6,025 children ages 3 to 21 with the neurodevelopmental disability we know as autism. In 1995, the number was less than 300. The cost of educating these students is considerable — about three times that for a typical student, depending on the support needs of the child diagnosed with ASD. Those needs vary greatly, as do the children’s abilities and behaviors.

If you’ve met one child with autism, experts say, you’ve met one child with autism — and only one. A student with ASD may be a playground athlete with a sizable vocabulary, while his non-verbal classmate is barely toilet trained and only blinks when someone throws him a ball.

One student may rock in a corner, avoiding eye contact, repeating two words in a monotone. Another may be quietly brilliant — master of the alphabet, a meticulous counter — but come unglued and burst into tears when papers are out of order or daily routines are changed.

All children with disabilities, including those with ASD, are guaranteed a free, appropriate, quality education by state and federal mandates. Unfortunately, many aren’t getting it yet, says Schwartz, who is leading efforts to build practical, proven classroom procedures that can be exported to public school districts. “I want every child with autism or with a disability to be able to go to his or her neighborhood school and get a world-class education. The question is, what do we need to do to ensure that happens?”

Schwartz is director of the Experimental Education Unit (EEU), an early childhood education center on the UW campus that was founded in 1960. The EEU now serves over 200 disabled and typically developing children, ranging in age from a few weeks to seven years old, in its integrated classrooms.

Studies show that children with ASD respond especially well to such early intervention — a significant finding as more children are diagnosed at increasingly earlier ages. While most children with ASD can be identified by 24 months of age, parents may begin noticing the signs much earlier: the baby doesn’t point, doesn’t respond to her name, doesn’t cuddle or flinches from touch. “Often parents later report that these were the ‘best’ babies, because they were so quiet and didn’t need to be picked up all the time,” says Schwartz.

Classrooms at the UW’s Experimental Education Unit are inclusive, a mix of children with and without disabilities. Staff involvement is intense, and children receive individualized instruction. Special-education services, such as speech and occupational therapy, are integrated naturally into classroom activities, and family involvement and education are mandatory.

On a typical day, a classroom of fifteen students buzzes with activity as a half-dozen adults — teachers, assistants, teachers-in-training, therapists — read to children, help them form letters, guide them in social interactions. When one young girl with autism heads for the corner and folds her arms around herself, re-entering her own private world, the teacher joins her, finds a play toy, and starts a game. Slowly, the three-year-old girl joins in. Her nanny watches through a one-way window at the EEU. “She has become so much more talkative and social since she came here,” says the nanny. “She’s gaining confidence every day.”

The EEU, funded by Seattle Public Schools and private donations, has evolved into a go-to center for researchers and educators around the country, and a training ground for future teachers, social workers, speech therapists and other early education providers. EEU staff and researchers have worked with school districts in more than half the United States, including at least 20 districts in Washington State. The demand for EEU expertise is tremendous. “We can’t go to every school district. We don’t have the personnel or the time,” says Schwartz. “What we try to do is help school districts develop their own expertise.”

One important model being developed for districts focuses specifically on children with autism. Schwartz and other project leaders on Project DATA (Developmentally Appropriate Treatment for Autism) consulted with everyone from parents and teachers to school administrators and transportation providers to create a usable program that would be sustainable in the classroom.

Project DATA focuses on children ages three to six, with mild to severe autism. The children spend half their day in an inclusive EEU classroom. They also have an additional 20 hours of intensive separate intervention each week that targets the goals of their Individualized Education Program (or IEP) — the legislatively mandated plan developed by family and educators to meet a child’s individual needs.

The combination of intense instruction and social interaction works on multiple levels. “What we know about children with autism is that we can take them in a small room and teach them a boatload of things,” says Schwartz. “But that doesn’t help the children at school, at Grandma’s, at childcare, or at the dinner table. The learning, living, talking community — that’s where I want each child to be successful.”

The program includes technical and social support for families, with monthly home visits. Project DATA educators also coordinate with services such as home therapy and, when a child is ready to leave the program, they work with preschools and schools to make sure the child’s transition is smooth. That can mean something as simple as learning how to carry a lunch tray, or meeting new teachers before the first day of school.

“Project DATA is a million little things done right every day to help this child succeed, and let me tell you, those things add up,” said the parent of one participant.

Careful tracking of the children in the project shows that all have made gains. Most children increase their vocabulary, learn to follow directions, and the majority are toilet trained by the time they leave the program. Follow-up studies show more than 50 percent of the graduates make the transition into inclusive kindergarten placements.

The project has already been adapted by three districts in the Puget Sound area. “It is one of the few early intervention models for children with ASD that was designed to be implemented in a public school setting,” states Schwartz.
Despite the project’s success, it raises some difficult questions.

Which child in the broad range of Autistic Spectrum Disorders benefits most from early intervention? The child with the high I.Q.? The child too shy to speak? “We don’t know all the details yet,” says Schwartz.

How many hours of early intervention are appropriate? Project DATA suggests at least 16 hours a week. The average in Washington State is three hours a week. Some parents, citing early research in the field, are demanding 40 hours a week or more. “We’re still trying to figure out the magic number. How much does a child need for a meaningful outcome?” says Schwartz.

Finally, who pays for early intervention, and how? Washington State currently ranks 42nd out of 50 states in public funding for education. Formulas for special education funds are based on general education funds, so increasing funding for general education will increase funding for special education.

“These programs are not something that can be done on the cheap,” says Schwartz, “and I don’t want to try to do them on the cheap.”

Having seen the results of these programs for children and families, Schwartz knows a good investment when she sees it.

For more information about Schwartz’s research see:

Boulware G., Schwartz, I. S., Sandall, S. R., & McBride, B. J. (2006). Project DATA for toddlers: An inclusive approach to very young children with autism. Topics in Early Childhood Special Education, 26, 94-105.
Schwartz, I. S., Sandall, S. R., McBride, B. J., & Boulware G. (2004). Project DATA (Developmentally Appropriate Treatment for Autism): An inclusive school-based approach to educating children with autism. Topics in Early Childhood Education Special Education, 24, 156-168.