MIND Institute researchers received a five-year, $3.1 million NIH grant to research youth with fragile X syndrome as they progress from high school to adult life. The condition, also known as FXS, is the most common cause of inherited intellectual disability and the leading single-gene cause of autism.
MIND Institute Director Leonard Abbeduto is leading the study, which aims to better understand what makes transitions to independence more or less successful. By investigating the school and home experiences, skills, and challenges of adolescents with FXS, Abbeduto hopes to help parents and teachers learn to facilitate smoother transitions.
“We think that language and literacy skills upon completion of high school will play an important role in employment, socialization, leisure and housing outcomes for young adults with FXS,” said Abbeduto, who received the American Psychological Association’s 2017 Edgar A. Doll Award for career contributions to understanding intellectual or developmental disabilities. “If we can demonstrate that relationship, I think we’ll have a strong case for schools to increase the intensity of speech and language therapies and literacy education.”
Support from a committed family
A $100,000 gift from the Canel family helped to establish the MIND Institute’s Program for Transition into Adult Life, and allowed Abbeduto to conduct pilot research to secure the NIH grant. Some of the program’s aims include:
- Designing service coordination models that help families create individualized “life plans”
- Identifying innovative programs in post-secondary education, vocational training, employment and housing, and barriers to access
- Creating a national clearinghouse for information about adult transitions
- Advocating for policy changes that bring promising approaches to scale
A special intervention program for young adults
Researcher Marjorie Solomon, the MIND Institute’s Oates Family Endowed Chair in Life Span Development in Autism, is leading development of a special intervention program to help young adults with ASD transition more effectively to adult life.
Known as the Acquiring Career, Coping, Executive-Control and Social Skills (ACCESS) program, the 20-week curriculum is based on interventions used in adults with schizophrenia, who have similar problems adapting to adulthood.
ACCESS employs a combination of cognitive behavioral and social skills group-therapy techniques, with modules around key areas such as planning, workplace communication, stress coping, goal setting, problem solving and self-advocacy.
Small trials suggest ACCESS creates improvements in global adaptive functioning, communication, self-direction and self-determination. Solomon and colleagues eventually hope to publish a manual for an intervention that could be widely used anywhere. The curriculum also incorporates insights from colleagues at UCLA.
“Although it’s never too early to help people with autism develop the adaptive, social, vocational and self-determination skills they’ll need in adult life, some of these skills may need to be relearned at key transition periods,” Solomon told Spectrum News last year. “Many of our participants had been members of our child and adolescent social-skills groups, but they needed to learn to adapt the skills for adult contexts.”
A center for community partnerships
The MIND Institute is home to one of California’s three federally designated Centers for Excellence in Developmental Disabilities. Known as CEDDs for short, the centers serve as links between universities and communities to maximize independence, productivity and inclusion of people with developmental disabilities.
MIND Institute faculty member Robin Hansen founded and leads the UC Davis center, which operates through advocacy, community partnerships, interdisciplinary training, and translation of research into practical applications. Examples:
- CEDD works to expand access to appropriate assistive technology at “AT” — tools such as tablets, visual schedules and video modeling that can help people with autism communicate and plan. The center offers educational and inspirational videos, and helped a local nonprofit launch an AT training center.
- The center provides more than 100 training opportunities each year for service providers, students, professionals and family members.
- The center’s Northern California Business Advisory Council promotes partnerships with local businesses and helps to guide workforce-development programs.
- A (philanthropy-funded) supported decision-making project helps people with disabilities choose trusted people to assist with legal decisions about their lives.