Childhood and Beyond - Services Research for ASD
By Thomas Insel on September 11, 2014
On August 8, President Obama signed into law the Autism CARES Act (for Collaboration, Accountability, Research, Education and Support). The law ensures the continued work of the Interagency Autism Coordinating Committee (IACC), but it also brings new opportunities to focus attention on an area of concern for many parents—what happens when their children with autism spectrum disorder (ASD) mature into adulthood? Navigating the landscape of interventions and services is difficult enough when a child with ASD is at home with his or her parents, but older youth and adults have to find ways to negotiate new and often more complex challenges: post-secondary education, employment, housing, and the evolving demands for social functioning. The problem: services are fragmented, difficult to identify and obtain, and may lack the needed research evidence to qualify for coverage under healthcare plans.
Last year, NIMH solicited grant applications for research to address these problems.1 This month, 12 grants were awarded for projects to develop and test the effectiveness of strategies to ensure that children aged 0-2, youth (within 2 years of leaving secondary education), and adults not only have access to services, but that diagnosis, intervention, and connection to services would be built into routine care. Achieving those outcomes requires coordination across a number of settings—primary care, social services and other community support agencies, education systems, vocational and disability programs, and private health care funding. The models to be developed and tested must be effective across community and cultural settings in order to reach the broadest number of people with ASD and to reduce or eliminate disparities in access to care. The funded projects will evaluate the success of efforts to provide services to the broadest population of people with ASD, including those from ethnically diverse and low-income populations.
Research has shown that early intervention can improve the social and language abilities of children with ASD. Five of these newly funded projects will address the essential next step: how to ensure that every child who would benefit from intervention gets it. The new projects are an effort to show how best practices identified by research can be incorporated into mainstream care.
Connecting children with ASD to interventions and services is an urgent need; so also is providing support for the increasing number of young people and adults with ASD, some of whom were not diagnosed until adulthood, after years of struggling with independent functioning. Among all age groups with ASD there are widely varying capabilities that require personalized supports for optimal functioning. This service delivery challenge is one that the newly funded grants are designed to address: four are aimed at transition age youth; three at adults with ASD.
Exploring the biological underpinnings of ASD is important, but research also has a role to play in testing what services and supports can demonstrably improve quality of life in the short term for people with ASD. Coincidentally, on the same day that we announced the NIMH grants, Drexel University in Philadelphia announced an anonymous gift of $3.6 million to its A.J. Drexel Autism Institute to launch new initiatives addressing quality of life issues for people with ASD across the lifespan. This work will encompass research on the effectiveness of existing services and look at innovative approaches to providing services for persons of all ages with autism.
What’s the vision? Every and any child or adult with ASD will be connected to appropriate and state of the art interventions and services. The ability to access care should ultimately depend not on the savvy, resources, and tenacity of families but on the broad availability of high quality, evidence-based service systems addressing unmet needs. With new funding from NIMH and from an anonymous private donor, we are beginning to realize that vision.
1 National Institute of Mental Health. RFA-MH-14-100. Services Research for Autism Spectrum Disorder across the Lifespan (ServASD): Research on Early Identification and Linkage to Services for ASD (R01). 2013 May.
National Institute of Mental Health. RFA-MH-14-101. Services Research for Autism Spectrum Disorder across the Lifespan (ServASD): Pilot Research on Services for Transition-Age Youth (R34). 2013 May.
National Institute of Mental Health. RFA-MH-14-102. Services Research for Autism Spectrum Disorders across the Lifespan (ServASD): Pilot Studies of Services Strategies for Adults with ASD (R34). 2013 May.
The IACC is a Federal advisory committee that was created by Congress in an effort to accelerate progress in ASD research and services. The IACC provides advice to the U.S. Department of Health and Human Services on activities related to ASD, and works to improve coordination and communication across the Federal government and work in partnership with the autism community. The Committee is composed of officials from many different Federal agencies involved in autism research and services, as well as people with ASD, parents, advocates, and other members of the autism community. The documents and recommendations produced by the IACC reflect the views of the Committee as an independent advisory body and the expertise of the members of the Committee, but do not represent the views, official statements, policies or positions of the Federal government. For more information on the IACC, please visit: www.iacc.hhs.gov.