Unlocking the Mysteries of Autism: It Takes a Village

While the rate of autism diagnoses has increased dramatically over the past two decades, knowledge about the disability and how to support those impacted by it is still limited. According to Bill Therrien, a professor of special education at the University of Virginia’s Curry School of Education, it will take a wide range of experts to continue working to understand autism, how best to diagnose it and support those diagnosed and their families. But he hopes there is something emerging at UVA that might make a difference.

This week, the Curry School and UVA’s Brain Institute host scholars from across the country, as well as local- and state-wide partners, to envision a path forward in expanding UVA’s current work on autism research, training and service.

UVA Today recently spoke with Therrien about the current work happening around autism and where this symposium might lead.

Q: What is the current understanding of autism and why do we need to move beyond that?

In the decade between 2000 and 2010, rates of autism diagnosis more than doubled. In 2000, 1 in 150 children were diagnosed while in 2010 that rate was 1 in 68. Today, it is even more common. There has been some great work done by researchers and practitioners working in autism. But we have a ways to go.

Currently, most of the work taking place is happening in silos. The research happening on the brain, for example, is not necessarily being connected to special educators who are working daily with students with autism.

In addition, there exist fewer resources for those with autism than they deserve. Families can wait years for a diagnosis. And upon diagnosis, they often receive a sheet of paper with a series of recommendations and are on their own to patch together supports. We have to do better.

But there is some good news about where we are. For those of us who are working on autism and with those diagnosed with autism, we are shifting our perspectives away from focusing only on generic deficits and instead we are moving toward focusing on the individual as a whole. Each diagnosis, each case, each person is unique and requires that we attune ourselves to them as an individual. There is increasing awareness that we need to provide person-centered and family-centered services that are evidence-based.

We are also increasingly taking a strengths-based approach to autism. Those diagnosed have unique strengths and weaknesses and it is up to us to work together to identify ways to unleash those strengths. For example, we have seen companies create strategic efforts to recruit and train young adults on the autism spectrum. These efforts to recognize and amplify these strengths are important.

Q: What areas of scholarship are critical to unlocking the mysteries of autism and to providing effective and meaningful care?

Autism is a complex disorder and requires expertise from brain science, to medical care, to human development. 

We need basic-research scientists to continue their efforts to understand the brain and autism. One hope would be that we would ultimately identify biomarkers of the disability so that we could confirm a diagnosis as early as possible. We know that the earlier a diagnosis is made, the better. Right now, there are plenty of cases where a child isn’t diagnosed until 4 or even 5 and that is just too late. The earlier the intervention, the better.

Pediatrics is another area. Pediatricians are involved in the diagnosis and care of these children. Also, some children with autism have other medical needs, such as sleep difficulties or food sensitivity issues that require the expertise of medical doctors.

Then there is the kind of research and practice we are doing at the Curry School. In the best cases, children diagnosed with autism and their families are engaging with a team of well-trained practitioners like teachers, school counselors, clinical and school psychologists, speech pathologists, and other school and community professionals. We need to know how to train these practitioners in ways that best support children with autism.

We are also working to better understand the academic journey for these children. While we once believed literacy learning was not possible past a certain age, we have learned that if we can get individuals to a 4^th- or 5^th-grade reading level, and later in young adulthood expose them to vocabulary aligned with their vocation or area of interest, they can comprehend those subjects as much as an expert reader.

There are also huge public policy implications. Right now, policies exist at the local, state and federal level that make things more difficult and unnecessarily challenging for families.

Finally, there is the research around how best to support families. A severe autism diagnosis can be a difficult experience for all those involved. Currently, families have to basically fend for themselves. We need to understand how best to support these families instead of throwing obstacles in their way.

The breadth of expertise needed to better understand and support those on the spectrum is immense. But what you’ll find is that we have access to this kind of breadth represented among our colleagues at UVA and with our community partners.

Q: Why would the Curry School of Education take a leading role in gathering these experts?

The short answer is that we have been doing work on autism in a wide variety of ways already.

This symposium was birthed out of longstanding work, as well as new initiatives we are pursuing, with a variety of partners. For example, we have been in partnership with the Virginia Institute of Autism for some time now, a local organization doing extraordinary work for children and youth with autism.

We want every student at the Curry School studying to become a teacher to engage with students with autism at the institute or in the local schools because every teacher will have individuals with autism in their classes. Every teacher. My colleague in kinesiology, Martin Block, has had a longstanding partnership with the institute where his students studying adaptive physical education, or P.E. for individuals with disabilities, have an opportunity to work with students with autism.

Faculty at Curry have been working with Daniel Cox, professor of behavioral medicine in the UVA School of Medicine, studying the effects a driving simulator has on teen drivers with autism.

Jason Downer, professor and director of the Center for Advanced Study of Teaching and Learning, was recently awarded grant funding to work with UVA’s Developmental Pediatrics’ Rich Stevenson to develop a system where pediatricians come to Curry’s Sheila Johnson Center for Human Services to provide diagnostic services.

We now aim to make connections across these projects and with others happening across Grounds or in the Commonwealth. The UVA Brain Institute is an example of an innovative area of work happening here that could make a significant impact on understanding autism.

Q: What is the ultimate vision around this body of work and what do you imagine UVA might achieve through it?

The ultimate vision is to have a center on autism where research scientists, practitioners [from medical and educational to mental health and physical wellness], and those of us training the next generation of practitioners, can all sit at the same table. We envision a center where each new idea, research breakthrough or best practice can be connected to a larger body of work but is understood through the lens of one individual and family.

In our research on what is happening around the country, we have seen a lot of tremendous models and many people do amazing work, but we have not found an evidence-based model that is truly integrative. This is nobody’s fault. Those of us working in autism research and services have spent the last several decades or more in discovery and survival mode. It is now time to move forward and connect all of the areas of expertise and services needed to comprehensively meet the needs of those with autism and their families. And with our community partners, we at Curry would like to help lead the way.