October 17, 2016

Lark Huang-Storms, Ph.D., is assistant professor of pediatrics, OHSU School of Medicine, and director of the OHSU Autism Program.

What's been the most interesting development in your area in the last two years? 

In recent years, there has been a fundamental cultural shift toward a more accepting and appreciative view of the nature and complexity of Autism Spectrum Disorder (ASD). The focus now is less on "curing" autism and more on giving people with ASD the support to live rich and meaningful lives. It's been an important time for self-advocacy in the autism community that has also brought positive, broader changes. Autism is increasingly understood as a continuum of the human condition with long historical presence, recognized as highly heterogeneous in spite of its recognizable core patterns.

With this shift has come a surge of clinical research interest in the phenotypic diversity of ASD. We have known for a long time that autism equally impacts all sociocultural groups, but our research samples have not reflected this (skewing toward affluent, white, young, male and people with higher language and cognitive scores). Recent large research efforts emphasize inclusion of minority and rural families who have often missed out on intervention and research representation. We are now explicitly seeking to include the many individuals with ASD who live with other "confounding variables" – for example, comorbid diagnoses like anxiety, mood disorder, genetic syndromes or intellectual disability. We also now recognize that girls and women with ASD are often overlooked or misdiagnosed, and we are beginning to recognize the unique needs of older adults.

What projects are you currently working on and are there opportunities for fellow faculty to participate? 

OHSU is one of 21 funded clinical sites collaborating in SPARK to recruit 50,000 individuals with ASD and their families into a nationwide research project. SPARK is sponsored by the Simons Foundation Autism Research Initiative and includes, but is not limited to, genetics research. The goal is to create a long-term research relationship with families affected by autism to inform our understanding of how etiology relates to specific manifestations of autism and the development of more effective supports.

Inadequate recruitment for research studies has been a major barrier in the past, which SPARK is attempting to counter by creating lasting partnerships with participants. These efforts include building an online community and providing salient resources and information to families. Because the online registration is simple and saliva collection is done at home, SPARK represents a new paradigm for large-scale, genomic research that can reach people who might otherwise not be represented. Although the project launched only six months ago, over 10,000 people have already registered!

We encourage faculty members at OHSU to refer patients and colleagues to the SPARK team and website and to share this information widely. In the future, researchers will have opportunities to partner with SPARK participants to conduct studies and develop additional inclusion variables. For example, the autism cohort at OHSU is currently interested in genetic and biological markers of autism, quantitative phenotyping across the developmental trajectory and automated quantifiable assessment methods.

What is the most important aspect of support that OHSU provides to you currently and how would you like this or other support to grow in the future? 

I am privileged to have exceptional clinical colleagues at OHSU's Institute on Development and Disability, as well as the ability as a program director and psychologist to provide families with gold-standard care regardless of their socioeconomic status. The OHSU Autism Program provides over 500 multidisciplinary assessments annually for individuals across the Northwest. The vast majority of our patients use public insurance, and many also take advantage of OHSU's free medical interpretation services. I'm very gratified by the role we are able to play in order to provide for families in our region, many of whom would otherwise be unable to receive this level of care. 

I am also fortunate to work with research colleagues who are uniquely positioned to address some of the most pressing topics in the area of ASD. As we increasingly recognize autism's heterogeneity, the question, "What is the best treatment for autism?" is being replaced by, "Which approaches will best support an individual?" The OHSU autism group is working toward differentiation of ASD signatures, while also developing more meaningful measurements of change (for example as a result of therapeutic intervention). This aligns with growing interest in personalized medicine and the use of new technologies to track physiological and behavioral data, both of which increasingly impact our approaches to ASD assessment and intervention. I am particularly excited about OHSU's support for more accessible, parent-mediated therapies and exploring the role of tele-health and individualized virtual environments in ASD care.

Notably, autism faculty members at OHSU interface across campus, including bioengineering, neuroscience, genetics, mouse and primate research, clinical diagnosis and therapeutic intervention. These exciting collaborative efforts will be further bolstered as we move toward additional dedicated infrastructure – particularly in terms of more clinician time to engage in research and improved clinical space.

About Three Questions

This Q&A series features OHSU School of Medicine faculty members and leaders talking about their work with the goal of getting to know them and different areas across the school. View past articles.