Research News

Reframing the paradigm for developmental disabilities research

by Elisabeth Dykens

Elisabeth Dykens
Elisabeth Dykens (Vanderbilt University)

I have long respected the work of Special Olympics. Becoming a member of its board of directors and attending World Games has been transformative, even though I have devoted my career to research on intellectual disabilities. It was thrilling to see Special Olympian runners at the World Summer Games passing the “Flame of Hope” up the Acropolis in Athens. It was equally thrilling to meet with researchers from around the world to share challenges and opportunities for cross-cultural research.

My own challenge to our research community is to reframe our paradigms.

Empower families to take care of themselves

First, let’s focus on families, to move from documenting their stress and ill health to giving them tools that will empower them to cope and grow as healthy adults.  If parent stress has not diminished in the 40 or more years of developing and providing interventions for children and adults with disabilities, isn’t it time to rethink intervention models? We need to flip the target of intervention and provide parental tools for stress reduction and positive adult development.

Investigate the positive as well as the negative

Second, let’s shift the focus from the negative attributes of disabilities to a balanced view that gives equal research attention to the positive. Our field has long studied cognitive and adaptive deficits, maladaptive behaviors, poor social outcomes and psychiatric disorders. More recently, our field has examined the genetic and neurobiological factors that underpin deficits. Disability professionals provide services that individuals with disabilities “consume.”

Individuals with disabilities are not only “consumers” or “receivers”—they are “givers.” Let’s learn from the field of positive psychology and look for ways to enhance and promote engagement, happiness, and well-being. Let’s examine strengths and positive internal states, and search with equal determination for the genetic and neurobiological factors underlying positive traits. Let’s develop models of appreciating the whole person, with a balanced view of individual strengths and weaknesses–abilities as well as disabilities. Doing this will require us, as researchers, clinicians, and disability professionals, to move outside our comfort zones and to embrace complexities that come from a broader appreciation of people with developmental disabilities.

Make research and interventions inclusive

Third, as researchers, let’s be resolved to count all individuals with intellectual disabilities worldwide, to collect meaningful data and to stop excluding them from our scientific agendas. An IQ of less than 70 is an exclusionary criterion for most research and intervention proposals. This represents lost opportunities for discovery. Even in autism research, 90 percent of publications in a leading autism journal were on children or adults with IQs above 90.

The Special Olympics motto is “I’m In.” Let’s create a new motto: “We Are In.” Let individuals with developmental disabilities and their families be in, collaborating on their inclusion in discovery and helping to set and direct our research agendas.

Elisabeth Dykens is the Annette Scaffer Eskind Chair and director of the Vanderbilt Kennedy Center, and professor of psychology, psychiatry, and pediatrics