Autism Spectrum Disorders Research at NIMH, Page 1

This overview summarizes research into the causes, diagnosis, prevention, and treatment of autism spectrum disorders.

Autism Spectrum Disorders Research at the National Institute of Mental Health

Autism spectrum disorders (ASD), a broad continuum of brain illnesses that includes Asperger’s syndrome, share common genetic roots and essential clinical and behavioral features, although they differ in severity and age of onset. Autism, the most severe of these pervasive developmental disorders, typically begins in early childhood and impairs thinking, feeling, language, and the ability to relate to others.

From one to six in 1,000 Americans suffer from ASDs,1,2 with some recent studies citing dramatic apparent increases in prevalence in certain locales. Boys with the disorders outnumber girls three or four to one. Within the first few years of life, children with ASDs fail to develop normal social interaction and communication and show restricted, repetitive, or stereotyped behaviors and interests.

Families coping with ASDs are searching for answers about causes, diagnosis, prevention, and treatment. The National Institute of Mental Health’s (NIMH) investment in autism-related science has quadrupled over the past 7 years from $9.4 million in FY 1997 to $36.2 million in FY 2002. The research is supported through grants and contracts with investigators at university medical centers and in the Institute’s own laboratories in Bethesda, MD. In addition, new Institute initiatives aimed at advancing basic knowledge of brain development and genetics hold promise for understanding complex behavioral disorders like autism. NIMH’s autism-related research ranges from efforts to improve awareness, diagnosis and treatment, to studies involving brain imaging, tissue banks, animal models, genetics, developmental neurobiology, and neuropsychology.

Implementing the Children’s Health Act of 2000

As part of the Children’s Health Act of 2000,3 Congress designated the NIMH to take the lead in expanding, intensifying and coordinating NIH’s expanding autism research effort, which totaled nearly $74 million in 2002. NIMH has implemented this landmark legislation, in collaboration with the four other Institutes represented on the NIH Autism Coordinating Committee (NIH/ACC): National Institute of Child Health and Human Development (NICHD), National Institute of Neurological Disorders and Stroke (NINDS), National Institute on Deafness and Other Communication Disorders (NIDCD), and National Institute of Environmental Health Sciences (NIEHS).4

NIMH, on behalf of the Department of Health and Human Services (DHHS), also convenes the Interagency Autism Coordinating Committee (IACC), which serves as a forum where Federal agencies and public members can share information about their autism-related activities. In addition to the NIH/ACC members, this panel includes representatives from several DHHS agencies and the Department of Education. The IACC also includes four public members, family members or guardians of people with autism or spectrum disorders.5

Studies to Advance Autism Research and Treatment (STAART) Network Foremost among the Children’s Health Act’s provisions is a collaborative effort to support development of several broadly based “Centers of Excellence in Autism Research.” In response, the five NIH/ACC Institutes have jointly established the Studies to Advance Autism Research and Treatment (STAART) Network. This project is building new infrastructure for autism research by bringing together critical masses of expertise and resources at eight dedicated research centers across the country. The Centers are conducting basic and clinical research, including investigations into causes, diagnosis, early detection, prevention, and treatment. They include research in the fields of developmental neurobiology, genetics, clinical developmental psychology, and psychopharmacology. Interdisciplinary collaborations, including the recruitment of outstanding investigators who had previously not worked in the autism field, are being funded in stages over the next several years.

Grants totaling $65 million over five years were funded in Fall 2002 and Spring 2003 to support STAART Centers at the following sites:6,7

  • University of North Carolina, Chapel Hill
  • Yale University
  • University of Washington
  • University of California, Los Angeles
  • Mount Sinai Medical School
  • Kennedy Krieger Institute, Baltimore
  • Boston University
  • University of Rochester, New York

Each center is pursuing its own particular mix of studies. For example, at the Kennedy Krieger Institute and four collaborating area institutions, a team of 27 researchers psychiatrists, neuropsychologists, psychologists, speech-language pathologists, developmental pediatricians and neuroscientists are examining motor and communication impairments in autism, to find out what goes wrong in the developing brain, with an eye to early identification and intervention. Spurred by evidence of a serotonin abnormality in autism, investigators are studying animals deficient in the chemical messenger to discover its role in establishing connections between neurons.

Among other STAART Center studies currently underway, researchers at Yale University are examining eye tracking in children with autism age 5-12, as well in toddlers. They are studying how a child sees a social situation, relative to his or her level of social competence. Investigators there are also using functional brain imaging to assess the effectiveness of a computer-assisted intervention to improve facial identification and facial expression in autism. A study of relatives of individuals with autism and Down syndrome at the University of North Carolina is looking for patterns of thinking about social situations and “executive functioning” (planning, impulse control and reasoning) that might provide clues to psychological characteristics shared in common among families with these highly heritable disorders. A brain imaging study seeks to discover the neural roots of social and emotional processes as well as executive functioning and ritualistic-repetitive behaviors in adults and very young children with autism.8

Public Input

The Children’s Health Act of 2000 mandates that the NIH make available information about its autism activities and facilitate public feedback to the NIH. Communications Directors, Public Liaison Officers, and other staff from the NIH/ACC regularly engage with representatives of autism advocacy groups to exchange information and stay in touch via an internet web site and a list-serve. Members of the autism advocacy community also serve as public participants on NIMH scientific review committees. A searchable information clearinghouse for all NIH autism-related activities is posted on the National Library of Medicine’s MedlinePlus Web site. This links to several resources within the DHHS, including NIMH’s autism Web page.

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