New grants fund cross-lifespan services research for autism spectrum disorder
NIH-funded projects aim at improving access, timeliness of interventions
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 updatedStrategic 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 difficulties, 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 www.nih.gov.
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