Author: Gary A. Stobbe, MD

Celebrating 10 Years at the Autism Center – A Trip Down Memory Lane

As we celebrate the 10 year anniversary of the Seattle Children’s Autism Center being open, Dr. Gary Stobbe shares his reflection on the evolution of our programs, and his hope for the future:

I think back to when the Seattle Children’s Autism Center was first launched in 2009, I still remember one of our first staff meetings where clinicians from backgrounds in psychology, psychiatry, neurology, developmental pediatrics, and speech therapy were all in attendance. All of us had been providing services for people with autism, but we had been doing the work in “silos.” We had dreamed of the day of working as a team, learning from each other, and coordinating care for people and families impacted by ASD. When that day was realized, it was an even better experience than we had imagined! The complexity of ASD makes this multidisciplinary approach to care essential, and Seattle Children’s Autism Center was built with this in mind. Since our beginning, we have welcomed over 4500 families through our doors, offering over 22,000 visits annually.  

Another important feature in autism care is recognizing that support needed often falls into the “uncompensated” care category. This uncompensated care is one of the reasons why Seattle Children’s is the organization in the Pacific Northwest best suited to provide autism care, as this is at the heart of Seattle Children’s mission. Partnering with our community through philanthropy and outreach means that we are on this amazing journey together, providing care for all people regardless of their ability to pay.   We simply would not be where we are today without the belief, commitment and support from our community, and for that we are eternally grateful.

We are fortunate that ASD care seems to draw a special type of service provider and clinician. The team work, the willingness to go the extra mile, the positive attitudes, and the unselfish goal of providing service and care to those in need, all brings the staff at Seattle Children’s Autism Center closely together. We feel privileged with the gift of being invited into the lives of so many individuals and their families.

In 10 years, we have accomplished so much together, yet we have so much unfinished work still ahead. I have seen so much progress towards the goal of getting everyone with ASD the care they need, yet we clearly have not met many of our goals, including the most glaring challenge of access to diagnoses in a timely fashion. Initiatives underway to address the unmet needs excite me as much as when we first launched Seattle Children’s Autism Center. I feel the future is brighter than ever, and I am thrilled to be on this journey with my colleagues, the families, and our amazing Pacific Northwest community!

A special acknowledgement and heartfelt thanks to the following staff who have been with us at the Autism Center since the very beginning;

  • Carola Meyer
  • Anita Wright
  • Jen Mannheim
  • Amber Persons
  • Katrina Davis     
  • Gary Stobbe
  • Jan Bersin
  • Felice Orlich
  • Dora Hall
  • Stephanie Pickering
  • Lindsey Miller
  • Mariam Araujo
  • Sara Webb
  • Raphe Bernier
  • Deb Gumbardo

A Tribute to Charlie Burnett

It’s hard for me to recall where I first met my friend Charlie Burnett. It may have been in an office visit with his then young daughter Alyssa, or it may have been at a charity fundraiser. Through the years, and whatever the setting, Charlie was always kind, soft spoken and thoughtful, and never wavered from his principal mission – to do what was necessary to see his daughter Alyssa happy.

 

Alyssa is now a beautiful 30 year old woman with an infectious smile that lights up a room when she enters. Alyssa has lived with a developmental disability – in her case, a form of autism that prevents her from using words, and is associated with other medical issues including intractable epilepsy. Charlie and his wife, Barbara, have been first-hand witnesses to the challenges facing people with developmental differences – in everyday life, in school, and even in institutions such as Seattle Children’s Hospital.

A story I will always remember is recalled by Charlie and Barbara, an occasion a number of years ago (well before we launched Seattle Children’s Autism Center) when Alyssa was admitted to Seattle Children’s through the emergency department for a change in her behavior. It was clear to everyone that something was physically wrong with Alyssa, but because of her communication deficits, she expressed herself through violent behaviors. The hospital personnel were ill-equipped to deal with the situation. With Charlie and Barbara’s persistence, Alyssa ultimately received the necessary medical care, but in the process it became clear that much needed to change and improve in our system of how we were providing care and support for individuals and families impacted by autism.

Charlie was not the type of person to sit around and accept these societal failures. Recognizing his position of influence as a Senior Vice President at Costco (Charlie founded the pharmacy division for Costco), he and Barbara took aim at one of the biggest gaps of support for people with developmental disabilities. In 2004, along with a close-knit group of friends and advocates, Charlie and Barbara started the nonprofit Northwest Academy for Exceptional Children, later renamed Tessera. Tessera’s mission was to provide lifelong learning experiences for individuals with autism and other developmental disabilities so that they might realize their fullest potential.

In 2008, Charlie and Barbara took charge with influential voices in the ears of Seattle Children’s leadership – supportive voices that helped us take the leap of faith necessary to see the Seattle Children’s Autism Center become a reality. This was no easy feat at the time – I can honestly say, that without the commitment of the Burnett family, the likelihood of us launching the Autism Center would have been seriously compromised.

In 2014, Charlie and Barbara again changed the face of services in our region for people with autism. The Burnetts and Tessera donated $7 million, including Tessera’s space in Bothell, to launch Seattle Children’s Alyssa Burnett Adult Life Center. In collaboration with other community providers, it offers year-round classes for adults with autism spectrum disorders and other developmental disabilities, helping to fill the enormous gap in services that occurs when other programs’ enrollment ends at age 21. Charlie and Barbara’s combined philanthropic commitment, along with Tessera, now totals about $8.5 million and is nothing short of incredible. While it was not easy to plan for and launch the center, once again, the vision of Charlie and Barbara to see a better future for Alyssa and others living with developmental disabilities proved correct. We are grateful for the Burnetts’ passion and generosity – and honored to help carry out our shared vision to provide critical resources for adults with autism.

I know if Charlie were reading this, he would deflect these successes to those around him – to Barbara, to his close friends, including Ron Yutrzenka and Mike Smith, to Costco, and to the staff at Seattle Children’s. He would reflect on the driving purpose of his work and these accomplishments – to create a better world for his beautiful daughter Alyssa. Thank you Charlie – you succeeded. I will miss you, I will always remember the sacrifices you made, and I will use your love as inspiration for the work we continue to do – for Alyssa, and for all of the children and adults that need us as their voice.

A Conversation With My Younger Self

The title of this blog series is “A Conversation With My Younger Self”. We wondered what parents and providers would say to their younger selves having the wisdom of hindsight and if there might be any words of wisdom our younger selves might have for us today. We begin with providers. 

Anita Wright, Speech Pathologist

As a young professional, there was a lot I didn’t know or understand about autism.  I should have taken more time to describe to parents the strengths their child exhibited, not just the deficits, not just the worrisome behaviors.  I would have helped parents recognize and emphasize the positive aspects of their child and point out how we can build on those strengths to broaden the child’s skills in other areas.  

As a parent, I’d remind myself not to be too quick to give up on teaching new things, even when the going seems incredibly slow.  Time and persistence on a parent’s part can sometimes bring surprising Read full post »

Autism and Trajectory

Your Child’s Trajectory

I am hearing more and more about people wanting to know the trajectory for a child with autism. First, let’s define what that means.

According to Merriam-Webster Online:

Trajectory: A path, progression, or line of development that resembles a physical trajectory (the curved path along which something moves through the air or in space)

For our kids, it means the path of their overall development from the time of diagnosis to adulthood. When I recently asked one of our doctors to help the parents of a patient whose teacher asked for his trajectory, he told me he’d be glad to dust off his crystal ball.  With no sure-fire treatment for autism and with such a broad presentation of features, predicting the future is a tricky thing to do. Read full post »

Good Outcomes in Autism Spectrum Disorders- a Case of Over-Diagnosis?

There has been much discussion recently about the anticipated release of DSM-V and how it will impact the diagnosing of autism spectrum disorder (ASD). I was especially interested in the discussion that came about from two Op-Ed pieces recently published by the NY times. My wife often criticizes me for playing “devil’s advocate” in debates (which I usually lose when the “debate” is actually with my wife), so it is not surprising that I feel compelled to chime in on the discussion surrounding our current diagnostic criteria for ASD. Read full post »