Autism Spectrum Disorder
This knowledge path presents resources about autism spectrum disorder (ASD) screening, diagnosis, treatment, care, and impact on family life. It includes tools for health care practices; training; improving state systems and services; research; and finding data and statistics, journal articles, reports, and other materials.
- The American Psychiatric Association, in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) (2013), uses the term "autism spectrum disorder (ASD)" to refer to a group of disorders that in the earlier edition (DSM-IV) includes autistic disorder, Asperger's disorder, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified. Please note: the term "autism" is frequently used in the literature to describe ASD and therefore appears often below, following the usage of the source cited. See the DSM-5 fact sheet Autism Spectrum Disorder (2013) for more information.
- The Centers for Disease Control and Prevention (CDC) estimates that 1 in 68 children has been identified with ASD. See Autism Spectrum Disorders (ASDs): Data and Statistics for a summary of prevalence, risk factors and characteristics, diagnosis, and economic costs.
- For general information about ASD, see Introduction to Autism by the Interactive Autism Network (IAN).
- For an overview of the federal government's investments in research, early detection, and supports and services for children, adolescents, and adults with ASD, see the fact sheet, Our Commitment to Supporting Individuals on the Autism Spectrum and their Families (2014).
- For information about an interdisciplinary approach to education for children with autism and characteristics of programs that work, see the National Research Council book, Educating Children with Autism (2001).
2. Screening, Diagnosis, Treatment, and Care
- American Academy of Pediatrics (AAP): Council on Children with Disabilities—Autism. Policies, articles, webinars, training materials, toolkits, and guides about caring for children and adolescents with ASD. Topics include prevalence, identification, diagnosis, management, treatment, and research. Also see the Autism A.L.A.R.M. guidelines for a brief checklist on screening and intervention.
- Autism Speaks. Information on the causes, diagnosis, treatment, and care of individuals with ASD and their families. Includes information about research initiatives, professional development resources, and a collection of video clips about early warning signs, diagnostic features, and treatments.
- Centers for Disease Control and Prevention (CDC): Autism Spectrum Disorders. Information about ASD and symptoms, screening and diagnosis, treatment, data and statistics, and research networks and initiatives. Includes screening and diagnostic tools and information, guidelines and recommendations, journal articles, and developmental milestone checklists and a fact sheet for families. See Learn the Signs. Act Early for tools to improve early identification of children with ASD and other developmental disabilities so children and families can get the services and support they need as early as possible.
- First Signs. Information for health professionals and educators about the importance of early identification and intervention for ASD. Lists key social, emotional, and communication milestones for infants and young children (from birth to age 3) and describes critical warning signs for when a child is at risk. Resources include a collection of video clips, a list of validated screening tools, screening guidelines, and an early intervention referral guide.
- National Professional Development Center on Autism Spectrum Disorders (NPDC on ASD). Briefs for 27 identified evidence-based practices for early identification, intervention, and education. The briefs contain a description of the practice, instructions for implementation, an implementation checklist, and a list of references that forms the evidence base.
- Ohio Center for Autism and Low Incidence (OCALI): Autism Center. General information about the causes, diagnosis, and characteristics of ASD; a collection of assessment resources; ASD service guidelines; and a parent's guide to ASD. In addition to ASD, OCALI has information on low incidence disorders such as multiple disabilities and traumatic brain injuries.
- American Academy of Pediatrics (AAP) Training and Webinars. Topics: Early identification, diagnosis, treatment, care, medical home, and prevalence.
- ASD Video Glossary. Collection of video clips about the early warning signs and diagnostic features of ASD. View side-by-side video clips of children with typical behaviors compared to children with ASD. The collection covers social interaction, communication, repetitive behaviors and restricted interests, and regulatory and sensory systems. Also covers treatment, including some of the more commonly used interventions: behavioral interventions, developmental interventions, structured teaching and supports, clinical therapies, and toddler treatment models. [Developed and supported by Autism Speaks, Florida State University Autism Institute, and First Signs].
- Association of University Centers on Disabilities (AUCD): Interdisciplinary Technical Assistance Center (ITAC) on Autism and Developmental Disabilities. Training tools to help increase the number of interdisciplinary professionals who are able to identify, assess, diagnose, and care for children with ASD and other developmental disabilities.
- Autism Internet Modules (AIM). Online learning modules for health professionals, families, and individuals with ASD on a wide range of topics that include identification, language and communication, preparing individuals for employment, and sensory differences. [Developed by Ohio Center for Autism and Low Incidence (OCALI) and a consortium of professionals and organizations in the United States and Canada].
- Centers for Disease Control and Prevention (CDC): Autism Case Training. Online continuing education course to improve early identification of children with ASD and ensure timely and appropriate care.
- Health Resources and Services Administration (HRSA): Combating Autism—Training for Professionals. Information about the Leadership Education in Neurodevelopmental and Other Related Disabilities (LEND) program and the Leadership Education in Developmental Behavioral Pediatrics program.
- National Professional Development Center on Autism Spectrum Disorders (NPDC on ASD). Learning module on early identification of ASD.
- Yale Child Study Center: Yale Seminar on Autism and Related Disorders. An archive of video and audio lecture content and supporting materials for an undergraduate course about ASD that is available online at no charge. The class consists of a weekly seminar on diagnosis and assessment; etiology; and treatment of children, adolescents, and adults with ASD.
4. State Systems and Services
- Association of Maternal and Child Health Programs (AMCHP): State Public Health Autism Resource Center (SPHARC). Resources for state Title V agencies and others interested in improving systems for children and adolescents with ASD and their families. Includes technical assistance webinars, learning modules, and state program highlights. Topics include prevalence, screening, financing, health reform, care coordination, cultural competence, family involvement, medical home, and transition.
- Easter Seals: State Autism Profiles. Collection of reports about autism services in each of the 50 states, the District of Columbia, and Puerto Rico. The profiles highlight the number of children with autism who have received the state's special education services, state health insurance coverage for autism (if available), Medicaid services specific to individuals with autism, educational programs provided to students with autism or training that focused on autism, other state resources, and state legislation.
- Autism Science Foundation (ASF). Research summaries, interviews with scientists, and lists of science journals and books that focus on non-vaccine-related autism research to understand what causes autism and develop effective treatments.
- Autism Speaks. Information about research programs and initiatives to improve autism diagnosis, treatment, and care.
Autism Treatment Network (ATN). Collaboration of medical treatment and research centers that serve as leaders in developing the evidence to advance care for children with ASD and their families. Includes a directory of ATN locations.
Autism Intervention Research Network on Physical Health (AIR-P) uses ATN centers to carry out clinical research and quality-improvement projects, develop evidence-based guidelines for clinical care, conduct training, and disseminate findings and guidelines to health professionals.
Autism Genetic Resource Exchange. Repository of genetic and clinical information.
- Centers for Disease Control and Prevention (CDC): Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) Network. Regional centers of excellence for ASD and other developmental disabilities. The Study to Explore Early Development (SEED) aims to identify factors that may put children at risk for ASD and other developmental disabilities.
- Health Resources and Services Administration (HRSA): Combating Autism and Other Developmental Disabilities. Information about grant programs to increase awareness, reduce barriers to screening and diagnosis, support research on evidence-based interventions, promote evidence-based guideline development for interventions, and train professionals.
- Interagency Autism Coordinating Committee (IACC). Information about the IACC, which coordinates all efforts within the Department of Health and Human Services (DHHS) concerning ASD. Includes a strategic plan for conducting and supporting ASD research, summaries of advances in ASD research, and meeting materials.
- Kennedy Krieger Institute: Interactive Autism Network (IAN): Resources For Researchers. Online initiative to accelerate ASD research by providing subject recruitment assistance, a longitudinal and cross-sectional data set, online networking and collaboration tools, an information resource for clients and research participants, and a place to share research with the public.
- National Institutes of Health (NIH).
Autism Centers of Excellence (ACE). Trans-NIH initiative that supports large-scale multidisciplinary studies on ASD to find its causes and best treatments.
National Database for Autism Research (NDAR). Research data repository to promote scientific data sharing and collaboration among ASD investigators. Contains genetic, phenotypic, clinical, and medical imaging data.
- OMIM®: Online Mendelian Inheritance in Man®. Catalog of human genes and genetic disorders and traits, with particular focus on the molecular relationship between genetic variation and phenotypic expression. The full-text, referenced overviews contain information on all known mendelian disorders and over 12,000 genes. Type autism or asperger in the search box and click on Search to get your results. [Developed by McKusick-Nathans Institute of Genetic Medicine and Johns Hopkins University].
- Organization for Autism Research (OAR). Grants for applied research into the challenges of living with autism.
- Search the following databases to identify additional programs for children and adolescents with ASD. NCEMCH resource brief, Maternal and Child Health Programs Databases, describes these databases and offers tips for searching them.
Discretionary Grant Information System (DGIS)
Health Services Research Projects in Progress (HSRProj)
Maternal and Child Health Research Program: Funded Projects Search
National Institute on Disability and Rehabilitation Research (NIDRR): NIDRR Program Database
National Institutes of Health (NIH) Research Portfolio Online Reporting Tool (RePORT)
6. Data and Statistics
- Centers for Disease Control and Prevention (CDC).
Autism Spectrum Disorders (ASDs): Data and Statistics. Summary of prevalence, risk factors and characteristics, diagnosis, and economic costs.
Autism and Developmental Disabilities Monitoring (ADDM) Network. Information about a group of programs working to determine the prevalence of ASD and other developmental disabilities in U.S. communities. Includes key findings and publications.
- Child and Adolescent Health Measurement Initiative (CAHMI): Data Resource Center for Child and Adolescent Health (DRC). Data from the National Survey of Children's Health and the National Survey of Children with Special Health Care Needs. Type autism in the Keyword Search field to find data about autism prevalence, age of diagnosis, child and family demographics, health insurance status and type of coverage, access and use of health care services, and more. See the data brief, National Profile of Children with Special Health Care Needs and Autism Spectrum Disorders: Key Findings from the 2009/10 NS-CSHCN & 2011/12 NSCH (2013).
- See NCEMCH resource brief, Maternal and Child Health Data and Statistics.
7. Journal Articles, Reports, Briefs, Guides, and Multimedia Resources
- Autism Speaks: Resource Library. Lists of books, articles, tools, and websites on a wide range of ASD-related topics.
- HuGE Literature Finder. Bibliographic citations for journal articles on genetic associations and other human genome epidemiology. Enter autism in the search box. Click on Go to get your results. Article titles link to corresponding PubMed records.
- National Autistic Society: Autism Data. Online catalog of research papers, books, articles, and multimedia resources about ASD.
- PubMed. Citations and abstracts for biomedical articles indexed by the National Library of Medicine (NLM), with links to full-text articles when available. Type "autistic disorder" OR "Asperger Syndrome" in the search box. Click on Search. Use the filters in the left sidebar to further narrow your search. Click on Show additional filters; select Ages and Search fields; and click on Show. Under Ages, select Child: birth-18 years. Under Search fields, click on Choose; select MeSH Major Topic; and Apply. Also, under Publication dates, select a limit (e.g., 5 years). You may further limit your search by selecting an article type or using the MeSH (Medical Subject Headings) database to identify additional search terms (e.g.,("autistic disorder" OR "Asperger Syndrome") AND "dental care").
- Search the following databases for access to additional literature and research about ASD in children and adolescents. NCEMCH resource brief, Maternal and Child Health Literature and Research Databases, describes these databases and offers tips for searching them.
Child Care and Early Education Research Connections: Research Collection
National Guideline Clearinghouse (NGC)
TOXNET (Toxicology Data Network)
8. News and Commentary
- Autism Speaks: News. Blogs, electronic newsletter, science digest, and press releases about ASD-related news, legislative updates, scientific developments, personal stories, and fundraising events. Use the left navigation bar to choose the media. Autism Speaks also presents a list of magazines and newsletters about ASD by other organizations.
9. NCEMCH Guides on Related Topics
- Bullying resource brief
- Children and Youth with Special Health Care Needs knowledge path, family resource brief, school resource brief
- Community Services Locator: An Online Directory for Finding Community Services for Children and Families knowledge path
- Emotional, Behavioral, and Mental Health Challenges in Children and Adolescents knowledge path (includes the section Inappropriate Use of Seclusion and Restraints), family resource brief, school resource brief
- Environmental Health resource brief
- Health Insurance and Access to Care for Children and Adolescents knowledge path, family resource brief
- Immunizations resource brief
- Medications resource brief
- Screening resource brief (includes tools for screening infants, children, and adolescents for autism as well as chronic illnesses; physical disabilities; and emotional, behavioral, and mental health challenges)
- Sleep in Infants, Children, Adolescents, and Pregnant Women knowledge path, family resource brief, school resource brief
Need more information? See NCEMCH's Autism Spectrum Disorder Family Resource Brief and Autism Spectrum Disorder School Resource Brief.
Autism Spectrum Disorder: Knowledge Path, 3rd ed. (March 2014). (Updated: August 2014).
Author: Susan Brune Lorenzo, M.L.S., NCEMCH.
Contributor: Tracy Lopez, M.S.L.S., NCEMCH.
Reviewers: Lauren Agoratus, M.A., parent of a child with autism, Family VoicesandFamily-to-Family Health Information Resource Center at the StatewideParentAdvocacy Network of N.J.; Lynn L. Cole, M.S., R.N., P.N.P., Strong Center for Developmental Disabilities at the University of Rochester Medical Center; Olivia K. Pickett, M.A., M.L.S., NCEMCH.
Editor: Ruth Barzel, M.A., NCEMCH.