Stories

Kids with Autism: Better Access to Services

Part of the Solution

Dr. Sara Jane Webb and patient

Caps like these enable researchers like
Dr. Sara Jane Webb to study which
parts of the brain work together to
perform specific functions.

Seattle Children’s is taking a leadership role in making an audacious goal a reality: helping every child with autism get the services and treatment they deserve.

Autism. It’s an emotionally devastating piece of news for parents to receive. They learn their child has a neurodevelopmental disorder with an unknown cause, no known cure, and a treatment path that isn’t clear.

“There’s still a fair amount of trying on different therapies for size,” acknowledges Dr. Bryan King, who leads Seattle Children’s Autism Center. “We have a long list of strategies for specific symptoms, but it isn’t always clear which will work for whom. We are just beginning to understand how complex and varied the autism spectrum really is.”

Dr. Bryan King, Fall 2011 Connection

Dr. Bryan King was one
of 80 experts invited to the
White House in April 2011
to discuss the most pressing
needs of the autism community.

Identifying the needs

In some ways, the circumstances of autism today echo that of cancer 40 years ago before a focused national effort was launched to better understand the biology of that disease and improve treatments. Outcomes for people with cancer have improved radically since then, and the search for cures continues.

“A systematic approach to studying treatments changed the prognosis for cancer,” says King. “Now, most children with cancer are on a clinical research protocol that is the same in Boston as it is in Seattle. We’re not there yet for autism, not even in our own clinic – but we are moving in that direction.”

In April, King and about 80 others were invited to the White House to discuss the most urgent needs of the autism community, including early intervention, better treatment options, and the nationwide shortage of clinicians that result in long waits for children who need diagnosis and treatment.

“I spoke about the tidal wave of human need on our doorstep,” recalls King. “Our waiting list is unacceptable, and the story is the same throughout the country. We must swim faster – and differently – to get in front of this wave.”

New strokes being practiced at Children’s include identifying and developing more effective treatments and creating efficient ways to deliver care so it’s available when kids need it.

Children’s has one of the largest autism programs in the country, and we are considered a model for our work to deliver efficient and effective care. Establishing our autism center as a single point of entry for all clinical efforts related to autism is one of our distinguishing factors.

“People visit from all over to see how we do it,” says King. “Most hospitals our size have three or four programs that treat autism running in parallel.”

Our program is also recognized for our multifaceted approach to addressing the needs of the autism population, including a variety of treatment options, a wide range of research studies, and educational and support programs for parents and others who care for children with autism.

“There is a tidal wave of human need at our doorstep. Seattle Children’s is developing ways to swim faster to get ahead of this wave.”

Dr. Bryan King, program director of Seattle Children's Autism Center

The intersection of brain and behavior

Researchers at Children’s are studying autism from a variety of angles. Some study the genetic basis of the disorder, while others develop behavioral interventions that help children be successful in school and life. Others investigate the effectiveness of commonly prescribed medicines, and others explore the connection between brain activity and how people with autism function.

Dr. Sara Jane Webb and her colleagues at Children’s and the University of Washington are completing several long-term studies on how the brains of people with autism and other disorders differ from those of people with typically developing brains.

By measuring the tiny bits of electricity that are released when brain cells activate, they are learning how the brain works to perform a function and how parts of the brain connect to make complicated behaviors possible.

What they are learning may improve the ability to diagnose autism, provide earlier evidence that a treatment is working, and even make it possible to identify subgroups within the autism spectrum – an advance that could improve our ability to connect patients with the best treatments for them more quickly.

“The brain is where all behavior comes from,” says Webb. “Our work helps us see what areas of the brain are developing normally, what areas are delayed and what areas aren’t functioning at all.”

Information and support

Katrina Davis and Lynn Vigo, Fall 2011 Connection

Patient advisors Katrina
Davis (left) and Lynn
Vigo provide support
and services to parents
of kids with autism
.

Supporting parents as they navigate the journey of autism is a personal mission for Lynn Vigo, a family advisor at the autism center. “It’s so confounding,” says Vigo, whose own teenage daughter is severely affected by her autism. “We have developed services I wish I’d had when my child was diagnosed, and provide parents with information and resources they need.”

Launched in April, The Autism Blog provides information for parents raising a child with autism and a forum for comments and questions. It’s written by clinicians and staff of the autism center, a feature that distinguishes it from other blogs on the topic.

“There’s a lot of information out there about autism, and it’s often conflicting and confusing,” notes Vigo. “Our goal is to provide objective, credible information so parents can form their own opinions.”

Andrea Thibault and Sam Mroz, Fall 2011 Connection

Andrea Thibault, with son
Sam Mroz, 9, attends the
teleconferenced Autism
200 classes
at the public
library near her home
on Bainbridge Island,
Wash.

Autism 200 is a series of monthly classes for parents and caregivers that covers a variety of autism-related topics. A speaker presents and then leads a question-and-answer session. The classes are held on the hospital’s Seattle campus and teleconferenced throughout Washington state and Alaska.

“The telecasts are a blessing,” says Andrea Thibault, of Bainbridge Island, Wash. “I’ve learned a lot about helping my son, and I’ve met others in my community who are dealing with the same things we are.”

Marcus Wainright and Marlene Vasquez Fall 2011 Connection

On-site childcare for
Marcus Wainright, 4, makes
it possible for mom Marlene
Vasquez to attend ALLY
(Autism, Living Life and
 You)
, the monthly support
group for parents of children
severely affected by autism.

support group for parents of children significantly affected by autism was started at Children’s four years ago to fill a void in the community: groups already existed for parents whose children were more mildly affected by autism. Vigo initially received a grant to provide childcare during the meetings so single parents and couples could attend. Parents are now asked for a small donation to help cover the cost.

“I’m a young mom and still trying to figure out how to deal with autism,” says Marlene Vasquez, a single mother whose 4-year-old son, Marcus, recently began saying basic words like "mom," "hug," and "car." “I get a lot of great tips and see that others are facing similar challenges. It’s like a shoulder to lean on. I can share any emotion and it’s accepted.”

Continued support is vital

As the center evolves to meet the daunting needs of the autism community, philanthropy makes a vital difference in supporting the development of our innovative model of care, expanding our facility, increasing our team of providers and laying the groundwork for our adult transition program that will enable us to care for people throughout their lives.

The work is paying off: the center provided 17,000 patient visits in 2011 – more than double the number of visits it was able to provide during its first year of operation. Even so, more than 1,500 families remain on a waiting list.

“It feels like we’re doing a lot, but also like we’re not doing enough,” says Vigo, evoking the image of the little boy with his finger in the dike. “There’s so much we still don’t know. The best parents and providers can do is help guide and support each other until we have some clearer answers.”

Challenge Grant Spurs Giving: It's About Hope

Carl and Chrissie Bradley Fall 2011 Connection

Philanthropist Carl Bradley
with daughter Chrissie, who
began riding when she was
about 8 years old.

When his daughter, Chrissie, now 19, was diagnosed with autism, there were few services available in the community. “We got the diagnosis and then had to find our own way,” recalls Carl Bradley. “We don’t want others to experience that.”

So the John Spencer Bradley Foundation, of which Bradley is a trustee, created a $500,000 challenge grant to benefit Seattle Children’s Autism Center.

“It’s a fun way to get others involved,” says Bradley. “Challenge grants are like a big lever in the community.”

It’s already working: the challenge grant helped inspire the Guild Association board to designate the autism center as a beneficiary of a $1 million Funding Focus over the next two years.

“The Funding Focus supports a pressing need at Children’s that matters to our guild members,” says Aileen Kelly, leader of the Guild Association. “We are blown away by the needs of the autism population. Everyone on our board knows someone on the spectrum. We’re proud of what our center has done, and we want to advance their work more quickly.”

These gifts – and the additional philanthropy they hope to inspire – are accelerating facility enhancements and increasing our capacity to support families on our waiting list and those already receiving services.

“It’s about hope,” says Bradley. “We want to inspire others to establish long-term relationships with Children’s and to support the autism center.”

To learn how you can help, email Jennifer Lowe or call 206-987-4831.