Poking holes in autism's wall

Marilyn Rasmussen is mother of seven and grandmother of 19, but she has a special gratitude and fondness for Caleb, the only one with autism.

"This is the greatest gift I've gotten because it has opened me up to looking at the world in a different way," Rasmussen says of the 6-year-old who likes to stir waffle batter at her elbow. "This kid looks at the world and sees all the things we miss."

Lucky for Caleb and Washington state's other residents with autism, Rasmussen also happens to be a state senator. She has been an impassioned advocate for dealing with this mysterious developmental disability that affects how people communicate and interact socially.

The Eatonville Democrat's marvel at the sweet uniqueness of her grandson is matched by frustration. These children and adults are on what can be a lonely journey with few signposts, obscure directions from educators and doctors, and often overwhelmed parents for navigators.

In 2005, Rasmussen sponsored SB 5311, approved unanimously by the Legislature, which established the Caring for Washington Individuals with Autism Task Force. Since December, this group of 14 educators, autism advocates, parents, state workers and legislators, including Rasmussen, have been trolling for the best information and ways Washington can better help those with the disorder and their families.

Though more is being learned about autism, it remains a murky mystery. Some on the spectrum are socially awkward but have successful careers; others are unable to communicate and need constant supervision; and each is different from the next. Between two and six people in every thousand are believed to be on the spectrum in Washington state, says Leslie Carroll, task force member and family consultant with the Department of Health Children with Special Health Care Needs Program.

What autism looks like to many families, including my own, is a giant wall that blocks a child's interactions with the world. When you can't find a window in, you grope for a crack and make it bigger; when you can't find a crack, you pound on the wall in frustration. You don't know where to turn, so you turn over every rock.

Which is where the task force comes in. Members are sorting out the best research from far and wide as well as from that Northwest treasure, the University of Washington Autism Center. They are gleaning the best ideas from other states and trying to come up with new ones to fill in some of the information and service gaps. That includes problems facing adults with autism who graduate out of the school system by 21 years of age.

Among the challenges are finding dentists who will treat adults with autism or job counselors who understand how to understand them and work with their skills. The task force also is probing how to fill in service gaps in more rural communities that are not a short trip away from the autism center in Seattle or its satellite in Tacoma.

Another major challenge is getting more professionals qualified to give diagnoses, says Diana Stadden, task force member, parent and Autism Society of Washington board member. In some places it can take up to a year to get a diagnosis. That is untenable for a disorder where early intervention can make all the difference in these children finding ways to poke holes in the wall of autism.

The report is expected to be released in draft form by mid-month and will contain about 30 recommendations across the categories of infrastructure, training, treatment and funding. The task force is asking parents, advocates, educators and medical-care providers to consider the draft and make suggestions for improvement by Sept. 5. The final report is due to the governor and the state Legislature by Dec. 1.

The task force's report surely won't be a panacea, but it will be the organized, thoughtful start of an important conversation.

Kate Riley's column appears regularly on editorial pages of The Times. Her e-mail address is kriley@seattletimes.com