Ten years ago the Seattle Children’s Autism Center was no more real than a dream.
But in the time since that dream has become a reality, the Center has served over 13,000 unique individuals through over 150,000 patient visits. How is that for transformation?
If I had a crystal ball that could answer the question of what will ultimately transform autism care over the next decade, I’d probably take that crystal ball and join the circus so I could make a living telling fortunes, eating cotton candy, and watching elephants. But, since I don’t have that crystal ball, I’ll instead pause for a moment, reflect on that question, and share my vision for what will drive transformative change and where we’ll see that change in the next 10 years ahead.
My thoughts about this transformation of how we best support individuals and families impacted by autism are based on my observations of what has driven the major gains we’ve made in the past ten years.
The drivers for those major gains have been: 1. Philanthropy and 2. Scientists working collaboratively with other scientists, clinicians, providers and most importantly families and individuals impacted by autism. In the field of psychology we say that the best predictor of future behavior is past behavior, so let’s apply that here with a little example.
A little over 10 years ago we knew very little about the causes of autism. Understanding the causes is critical because it allows us to figure out ways to most effectively support individuals and their families. The Simons Foundation, based in NYC , decided to move the needle in understanding the causes of autism by bringing together scientists who were independently conducting great work in understanding the genetics of autism. This philanthropic effort to ignite better collaboration allowed for the creation of the Simons Simplex Collection (SSC): a collection of nearly 3000 families with behavioral and genetic data available for scientists to pursue cutting edge questions. The families generously donated their time (along with blood, sweat and tears) and the scientists tirelessly worked (extracting their own blood, sweat, and tears) to move our understanding forward.
And they did.
The analysis of the data collected through the SSC allowed for the identification of genetic events and specific genes that were playing a role in autism driving a nearly overnight transformation of our understanding of the causes of autism.
Firstly, the identification of these many genes and genetic events highlighted that when we talk about autism, we’re not just talking about a singular thing. We’re talking about a pattern of behaviors that is associated with about 1,000 different genes. For the first time we had a biological understanding for the age old adage: “If you’ve met one individual with autism..you’ve met one individual with autism.”
Secondly, the identification of these genes illuminated the way that brain structures develop and function in autism. And it that combination that has in turn started to pave the way for developing targeted support for individuals with autism. And it is that combination that has in turn started to pave the way for developing targeted supports for individuals with autism so that we can help everyone become the person that they want to be. Philanthropy brought the community together to drive science forward. That model has worked and I can see it working in the future.
There is a second example I’d like to share that relates to the concept that past behavior is the best predictor of future behavior. The Seattle Children’s Autism Center started ten years ago through the collaboration between philanthropists and leaders at Seattle Children’s Hospital deciding that everyone, regardless of their ability to pay, needed access to high quality care for autism. That decision transformed clinical care in the region. The scope of that change expanded considerably 5 years ago based on the same collaborative spirit between philanthropy and Seattle Children’s with the start of the Alyssa Burnett Center and the focus on supporting adults with autism and other developmental disabilities. This second example underscores that essential clinical component into the collaboration between science and philanthropy because in order to realize scientific gains, the gains have to be made available to everyone….and as fast as possible. The best way to do that is to have scientific innovation embedded into the fabric of the clinical home, school setting and the community at large for families.
In the coming decade I see us building on this understanding of the biological mechanisms underlying autism applied in the clinic (and schools and community) to help us develop targeted approaches; to help make social interaction and communication easier, to help reduce behaviors that get in one’s way of learning or accomplishing what they want, and to manage challenges that often accompany autism, such as sleep problems or gastrointestinal disorders , while at the same time maintaining and supporting the unique traits and skills that everyone brings to the table. By providing supports that are specific to a given individual based on biology, we can eliminate wasted hours and resources on ineffective supports, we can speed up interventions to reduce the likelihood of additional problems developing, and we can increase access to care for all. The promise of precision medicine in autism is not science fiction, it’s real and it’s on the horizon.
While these scientific advances toward precision medicine move forward over the next ten years, I also anticipate another transformative change. And that is that we will build on the wave of community awareness that has built since the mid 1990s and evolve that awareness into community inclusion. Only too often I hear stories of individuals and families feeling isolated from their communities because of the challenges associated with autism. So, while science is helping us provide resources and skills to support individuals with autism and their families, our providers and educators need to provide resources and skills to our community, such as businesses and institutions, so that our individuals with autism and their families are truly included into the fabric of the community. True inclusion is the best form of support for individuals and families impacted by autism as there is no way to practice the critical skills of social interaction and communication, if the community isn’t open to a person practicing and developing those very same skills. This, of course, can only be successful if the community is actively listening to individuals and families impacted by autism. And I anticipate greater opportunities for collaboration and dialogue between individuals and families impacted by autism, scientists, clinicians, educators, and policy makers.
As I peer into my ‘crystal ball’, in the next decade I see continued growth of opportunities in the here and now for families coupled with more precise supports made available for each individual impacted by ASD because of scientific advances. And I see these advances continue because of the collaboration between philanthropy, scientists, clinicians, educators, and most importantly, individuals and families impacted by autism. In fact, as I sit here at my computer typing these thoughts, I realize that I’ve changed my mind.. I don’t think I’d care if I did have a real crystal ball…I’m not that interested in running away and joining the circus. There are too many exciting things that will happen in the world of autism over the next ten years and I want to make sure I’m here to see them all !!!
As a parent this update is music to my ears”…developing targeted supports for individuals with autism so that we can help everyone become the person that they want to be.” I never wanted to cure of fix my son. I want to understanding the most appropriate supports and interventions that meet his unique needs so he can overcome challenges and reach his potential. Thanks to the scientific community and dedicated philanthropists for seeking to understand my son. Your curiosity and generosity is leveling the playfield for my son and greatly improving his life. And Raphe, the circus will still be there in 10 years…we need you here!
I am very glad to read this article and know that that as a parent there is a lot of information out there to help me help my son , thank you