New Grants Fund Cross-lifespan Services Research for Autism Spectrum Disorder
NIH-funded projects aim at improving access, timeliness of interventions
• Press Release
Developing effective, real-world-ready approaches to providing early diagnosis, treatment, and supportive services for people with autism spectrum disorder (ASD) is the goal of 12 research grants awarded by the National Institute of Mental Health (NIMH). These grants are part of a broad research effort to provide models for the delivery of needed services to children, youth, and adults with ASD, across different communities and care settings, appropriate to each age and individual. NIMH is part of the National Institutes of Health (NIH).
While research has yielded much on understanding the biology of autism, access to effective treatment and services tailored to life stages remains a challenge for people with ASD and their families. In 2013, the Interagency Autism Coordinating Committee, a U.S. Department of Health and Human Services federal advisory group, developed an updated Strategic Plan for Autism Spectrum Disorder Research which identified access to services as a central concern of individuals and families affected by ASD. To foster research on these issues, NIMH solicited applications to study models for ASD service delivery in early childhood, during the transition out of high school, and in adulthood.
ASD symptoms emerge in early childhood. The Centers for Disease Control and Prevention’s most recent data regarding autism prevalence, released in March 2014, estimated about 1 in 68 children were identified with ASD. The central features of ASD are difficulties in social communication, and restricted, repetitive patterns of behavior and interests. The diagnosis is shared by people who vary widely in abilities and symptoms, from those with intellectual and language disabilities, to people without intellectual disabilities but who have some degree of social impairment.
“Despite the significant number of people of all ages identified with ASD, access to effective services remains inconsistent at best. Parents are often left to navigate what is available as best they can, and worry for the future as their affected children grow into adulthood,” said NIMH Director Thomas Insel, M.D. “This research is aimed at testing care strategies, adaptable across communities, in which identification of need and engagement in optimal interventions and services will be standard for all ages.”
NIMH has awarded $7.9 million in initial year funding for these 12 research grants. Each project addresses issues particular to one of three age groups (also see a separate list of the 12 projects with a brief description of each):
- Early childhood (five projects): Research suggests that early and intensive interventions for ASD can reduce language and behavioral challenges, but early screening and referral to treatment is not routinely provided in pediatric settings. These newly funded projects target infants from birth to 2 years of age and are intended to test strategies for universal screening coupled with referral to and engagement in services when indicated in order to determine how to achieve earlier intervention for children with ASD in this age group. These studies will address the issues of coordination among different settings, such as primary care, social services, the education system, disability programs, ASD specialty care, and public and private health care funding.
- Transition-age (four projects): The transition period between secondary school and adulthood can be especially difficult for young people with ASD. Once they graduate from high school, these young people may not qualify for or get immediately connected to adult services. Research suggests they are less likely to continue their education or be employed, even in comparison with young adults with other types of disabilities. The new research will develop school-based service coordination to engage youth and their families in planning for the transition to adulthood in order to reduce or eliminate disconnection from needed supports, services, or age-relevant activities.
- Adults (three projects): In addition to the challenges faced by young people with ASD aging into adulthood, an increasing number of previously undiagnosed adults are being identified. Many adults diagnosed with ASD have difficulties with employment, social relationships, housing, and functioning independently. Studies will develop and test strategies to maintain engagement in community support, vocational and employment programs, and other services aimed at supporting independent living.
The five early childhood studies form a research network that will pool data to expand the ability to conduct further research on this valuable dataset. These data, from which personally identifiable information is removed to protect privacy, will be housed In the NIH-funded National Database for Autism Research and will be made available to others in the ASD research community.
An emphasis of this initiative is that the service strategies being developed must be effective in the real world of diverse communities and health systems. An explicit goal is to help reduce the disparities between different ethnic and socioeconomic groups in access to services. These studies have the potential to transform the current ASD service system by designing a set of strategies for young children, transition age youth, and adults that are effective and engineered for rapid adoption and implementation on a broad scale.
“The studies will provide a critical evidence base on how community services can improve the treatment, functioning, and community integration of people with ASD at important life stages,” said Denise Juliano-Bult, M.S.W., chief of NIMH’s Systems Research Program and the Disparities in Mental Health Services Research Program.
About the National Institute of Mental Health (NIMH): The mission of the NIMH is to transform the understanding and treatment of mental illnesses through basic and clinical research, paving the way for prevention, recovery and cure. For more information, visit http://www.nimh.nih.gov.
About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit http://www.nih.gov/.
Research on Early Identification and Linkage to Services for ASD
Addressing Systemic Health Disparities in Early ASD Identification and Treatment
Alice Carter and Radley Sheldrick
University of Massachusetts Boston
The goal of this study is to test a system-level intervention to (a) improve early detection of autism spectrum disorders (ASD) and (b) increase early access to autism specific early intervention services, especially for children who often are not given the known benefits of early intervention services. The study will be implemented in three programs serving children in a Boston region with high social/economic risk and poverty.
Early Identification and Service Linkage for Urban Children with Autism
Boston University Medical Campus
This study will test a comprehensive service systems intervention targeted to urban children most likely to experience delays in ASD diagnosis and service provision. The trial takes place in within three integrated primary care networks that serve low-income and minority children: Boston Medical Center, Children's Hospital of Philadelphia, and Yale.
Detection of ASD at the 1st birthday as standard of care: The Get SET Early Model
University of California San Diego
This study will test a three-stage early intervention model system known as Get S.E.T. Early (S=Screen, E=Evaluate, T=Treat) in San Diego and Phoenix, and is designed to detect, evaluate, and treat ASD within the first 2 years of life. The project will utilize Pediatrician Networks in both cities to participate and test whether ASD screening tools with clear cut-off scores and guidelines for automatic referral for evaluation and treatment will result in dramatically lowering mean age of diagnosis and treatment.
A Screen-Refer-Treat (SRT) Model to Promote Earlier Access to ASD Intervention
University of Washington
This project will implement and evaluate an innovative healthcare service delivery model known as the Screen-Refer-Treat (SRT) model, which is designed to promote earlier access to specialized intervention for toddlers with ASD. This study will be implemented in four diverse communities across Washington State to evaluate changes in service delivery practices for toddlers with Hispanic as well as Non- Hispanic backgrounds.
Mobilizing Community Systems to Engage Families in Early ASD Detection & Services
Amy M. Wetherby (Contact), Ami Klin, Catherine Lord, Craig Newschaffer
Florida State University
This multidisciplinary research team will conduct a multisite to document the effectiveness of an online automated universal screen for autism, to study an evidence-based intervention to increase family engagement and expedite receipt of screening, diagnosis, eligibility for EI, and test the effectiveness of an evidence-based Family Engagement Intervention. The study will be conducted in three different community service systems: (1) primary care settings; (2) Women, Infants, and Children (WIC) Food and Nutrition Service; and 3) the National Black Church Initiative (NBCI).
Pilot Research on Services for Transition-Age Youth
Improving Transition Outcomes in ASD using COMPASS
University of Kentucky
This research project will study an implementation strategy that prevents lapses in services and enhances functional life outcomes among transition-age youth with ASD. The Collaborative Model for Promoting Competence and Success (COMPASS) is a parent-teacher consultation intervention which is designed to assist public school special educators and parents in person-centered decision-making for individualizing evidence-based interventions for children with ASD.
Transition to Medication Self-Management for Youth with ASD and Co-Occurring ADHD
University of Rochester
The goal of this study is to prepare transition-age youth with ASD with tools to self-manage their medication use and related healthcare. The project will develop and pilot a manualized intervention for Transition to Medication Self-Management for higher-functioning youth who have an ASD/ADHD diagnosis in an effort to arm youth with the tools and skills they need as adults to navigate the healthcare system and successfully transition to self-management of medications.
Adapting a Parent Advocacy Program to Improve Transition for Youth with Autism
Vanderbilt University Medical Center
This study will adapt and pilot test a parent advocacy training program designed to increase parents' skills in advocating for their son or daughter with ASD during their transition to adulthood. The researchers will conduct preliminary studies to determine whether participation in the program is associated with improvements in parents' ability to advocate for their children, in acquiring needed services, and improved outcomes of the youth with ASD.
STEPS: Stepped Transition in Education Program for Students with ASD
Susan Williams White
Virginia Polytechnic Institute
In an effort to promote successful transition of adolescents and young adults with ASD from high school to post-secondary education, this project will test a transition support and intervention program that targets improved self-regulation and self-determination in young people with ASD. Researchers will study program outcomes related to college adjustment and functional behavior.
Pilot Studies of Services Strategies for Adults with ASD
Supported Employment, Cognitive Enhancement, Social Skills Program for ASD Adult
Children’s Hospital Research Center (San Diego)
The primary goal of this study is to develop an integrated community-based intervention, Supported Employment, Cognitive Enhancement, Social Skills (SECESS) which will test community supported employment practice with cognitive compensatory training and social skills training to help adults with ASD improve the necessary "soft skills" to find and keep competitive employment.
Services to Enhance Social Functioning in Adults with Autism Spectrum Disorder
University of Pennsylvania
This study will develop and test strategies to enhance social functioning in adults with ASD by researching program components designed to develop motivation and capacity to participate in social cognition and social skills training, as well as helping participants generalize new knowledge into social skills that has the potential to enhance their functioning in the community.
Multi-family Group Psychoeducation for Young Adults with ASD
Leann Elizabeth Smith
University of Wisconsin-Madison
This research project will focus on young adults with ASD who are disengaged from work or post-secondary education. Researchers will develop and test a psychoeducation intervention entitled ‘Working Together’ which will focus on providing interventions that enhance adult role engagement, adult behavioral functioning, and family capacity while also reducing emotional intensity and stress.