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.
▼ Show All
Resources for Professionals
1. Overview ▼ Show
- The American Psychiatric Association, in the fifth edition of
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
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
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
- 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 ▼ Show
- 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
development resources, and a collection of video
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
can get the services and support they need as early as possible.
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
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.
Professional Development Center on Autism Spectrum Disorders (NPDC
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.
3. Training ▼ Show
- American Academy of Pediatrics (AAP) Training and Webinars. Topics: Early identification, diagnosis, treatment, care, medical home, and prevalence.
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
State University Autism Institute, and First
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
Internet Modules (AIM).
learning modules for health professionals, families, and individuals
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.
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
adolescents, and adults with ASD.
4. State Systems and Services▼ Show
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.
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.
5. Research ▼ Show
- 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
Speaks. Information about research programs and initiatives
to improve autism diagnosis, treatment, and care.
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.
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.
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
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.
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
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. The MCH Library 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 ▼ Show
for Disease Control and Prevention (CDC).
Disorders (ASDs): Data and Statistics. Summary of prevalence,
risk factors and characteristics, diagnosis, and economic costs.
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 the MCH Library resource brief, Maternal
and Child Health Data and Statistics.
7. Journal Articles, Reports, Briefs, Guides, and Multimedia Resources ▼ Show
Speaks: Resource Library. Lists of books, articles, tools, and websites on a wide range of ASD-related topics.
Literature Finder. Bibliographic citations
for journal articles on genetic associations and
Enter autism in the search
box. Click on Go to get your results. Article titles
link to corresponding PubMed records.
Library: MCHLine®. Conduct an automated
search of the library's online catalog to find publications,
tools, and multimedia resources about ASD.
- National Autistic Society:
Autism Data. Online catalog of research papers, books, articles,
and multimedia resources about ASD.
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
additional filters; select Ages and Search fields; and click on Show. Under
Ages, select Child: birth-18 years. Under Search fields, click on Choose;
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
- Search the following databases for access to additional literature and research
about ASD in children and adolescents. The MCH Library 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▼ Show
- 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. MCH Library Guides on Related Topics▼ Show
- 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
Resources for Families
See the MCH Library family resource
Resources for Schools
See the MCH Library school resource
Please provide feedback on
this knowledge path.
Autism Spectrum Disorder: Knowledge Path, 3rd ed. (March 2014).
Author: Susan Brune Lorenzo, M.L.S., MCH Library.
Contributor: Tracy Lopez, M.S.L.S., MCH Library.
Reviewers: Lauren Agoratus, M.A., parent of a child with autism, Family Voices and Family-to-Family Health Information Resource Center at the
Statewide Parent Advocacy 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., MCH Library.
Editor: Ruth Barzel, M.A., MCH Library.