Social science  |  UW and the community

April 13, 2012

Your child gets diagnosed with autism – what now?

Parents of children newly-diagnosed with an autism spectrum disorder face a bewildering list of recommendations meant to nurture children’s social and communication skills, such as special diets, a variety of behavioral therapies and what to look for in pre-schools.

But parents usually have to figure out for themselves which strategies to try. Many feel isolated and overwhelmed. And while early interventions can remediate some developmental delays, the waiting lists for clinical services can be several months long.

Clinicians at the UW Autism Center realized that training parents to do behavioral interventions with their kids could bridge that waiting time and give kids with an autism spectrum disorder a quick start in learning skills in advance of enrolling in clinical services.

They designed a half-day program, Stepping Stones, to teach parents, grandparents and other caregivers of kids up to 5 years old who are recently diagnosed.

“We’re teaching parents how to work with their kids on skills during typical family routines,” said Robin Talley, a behavior and education consultant at the UW Autism Center. “We give them tips for how to set up their home environment to increase opportunities for communication.”

Talley and Ashley Berger Penney, also a behavior and education consultant at the UW Autism Center, led the inaugural Stepping Stones workshop on March 31. Other Saturday workshops are planned for July 14 and Oct. 13. To encourage interaction and participation, registration is limited to 14 individuals per session (see sidebar for more details).

The workshops focus on four types of critical skills:

–          Requesting, such as how to appropriately ask for a snack.

–          Protesting, such as teaching a child to appropriately convey that he does not want apples as a snack, but prefers raisins instead.

–          Social communication or joint attention, including how to share interests, like saying “Look!” and pointing to an airplane overhead. “Children with an autism spectrum disorder often require specifically designed instruction to demonstrate this skill,” Berger Penney said.

–          Encouraging playtime that is social, functional and interactive.

“For a child with autism, play can sometimes only be about them and an object, not about sharing the experience of play with other people,” said Berger Penney. She explained that a child with an autism spectrum disorder might just spin the wheels of a toy car rather than making the whole car roll.

“Teaching children to play with objects the way that they’re meant to be used means that kids with autism will be better able to interact with other kids who play with a toy in the same way,” she said.

The strategies taught in Stepping Stones are based on Applied Behavioral Analysis, an autism intervention that has the most evidence demonstrating gains in play, communication and social interactions and behavioral changes, Talley said.

Parents attending Stepping Stones also learn from each other, sharing strategies that have worked for them and their kids. They share their frustrations too.

“Not only have the hopes and dreams you may have had for your child changed, but your life has changed,” Talley said of parents coping with autism diagnoses. Their communities often change too, as friends and family may distance themselves because they don’t know how to respond to the challenges of autism. She recommended a story called “Welcome to Holland” as a way to explain how expectations change with autism.

“It’s such an upheaval for parents to get an autism diagnosis for their child,” said Wendy Stone, director of the Autism Center. “Early intervention makes all the difference, and parents generally want to get as much information as possible. We hope our workshops not only help parents guide their child’s social and communication development, but also show them how to have more fun with their child.”

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For more information or to register for Stepping Stones workshops, contact Berger Penney at 206-221-5232 or aberger2@uw.edu or Talley at rtalley@uw.edu.