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Autism Spectrum Disorders
Knowledge Path

Introduction

This knowledge path about autism spectrum disorders (ASD) has been compiled by the MCH Library at Georgetown University. It offers a selection of current, high-quality resources about ASD screening and diagnosis, treatment and intervention, communication, education, vocational challenges, and impact on family life. Separate sections identify resources that address concerns about vaccines, environmental health research, and inappropriate use of seclusion and restraints. Separate briefs point to resources for families and schools. This knowledge path will be updated periodically.

Please note: The Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) uses the term "autism spectrum disorder" to refer to a group of disorders that include autistic disorder (also called classic autism), Asperger syndrome, and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) (also called atypical autism). However, the term "autism" is frequently used in the literature to describe all of the disorders in the spectrum and therefore appears often below, following the usage of the source cited.

Overview

For general information about ASD, see the fact sheet presented by the Centers for Disease Control and Prevention (CDC).

For information about what is currently known about ASD and areas for further research, see the Interagency Autism Coordinating Committee (IACC) strategic plan which was developed to inform and advise federal agencies and Congress about needs and opportunities for research investigating ASD. The plan is organized around six questions for people with ASD and their families regarding diagnosis, the biology of autism, risk factors, treatments and interventions, services and supports, and issues that adolescents, adults, and senior citizens with autism and their families face.

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).

For online videos, presentations, and informative chats for parents and health professionals about autism diagnosis, treatment, and coping, see TalkAutism: virtualSpeaker.

Resources for Professionals

Websites

Additional Electronic Publications

Distance Learning Resources

  • American Academy of Child and Adolescent Psychiatry (AACAP) Expert Interviews: Autism. Presents a collection of online videos of an interview with Robert L. Hendren, D.O., President, AACAP Professor of Psychiatry; Executive Director, M.I.N.D. Institute; and Chief, Division of Child and Adolescent Psychiatry, University of California, Davis. The interviews cover autism diagnosis, prevalence, treatment, co-occurring conditions, and parenting.

  • American Academy of Pediatrics (AAP) National Center of Medical Home Initiatives for Children with Special Needs: Training Programs and Materials. Presents program information and a training curriculum for health professionals about the medical home approach to quality, comprehensive health care for children and adolescents with special health care needs.

  • Autism Internet Modules (AIM). Presents a collection of online learning modules to assist those working and living with individuals with ASD on topics that include assessment and diagnosis, characteristics, evidence-based practices and interventions, and transition services and supports. The Ohio Center for Autism and Low Incidence (OCALI) is developing AIM in partnership with a consortium of professionals and organizations across the United States and Canada.

  • M.I.N.D. Institute: Videos. Presents a collection of webcasts from a distinguished lecturer series and conferences about research to find the causes, effective treatments, and ultimately cures for neurodevelopmental disorders, including autism.

  • Online Graduate Programs in Behavioral Intervention in Autism. This four-course graduate certificate program is designed to provide professionals in psychology, education, child care, speech and language disorders, mental health, and human services with an understanding of autism and related developmental disorders as well as an introduction to behavioral methods and how and where such methods can be used and evaluated. The program is offered by the University of Massachusetts Lowell.

  • TalkAutism: virtualSpeaker. Contains a collection of online videos, presentations, and informative chats for parents and health professionals about autism diagnosis, treatment, and coping. TalkAutism is a communications network providing free and low-cost online services for families and professionals dealing with autism.

  • Also see the Maternal and Child Health Bureau (MCHB) webcast and podcast and the Autism Speaks video glossary.

Databases

The databases listed below are excellent tools for identifying data, additional literature and research, and programs addressing ASD. Many of the entries below contain tips on how to use the databases efficiently. Please note that databases vary in how terms should be entered; for example, some require quotation marks and others don't. Enter search phrases as shown in bold below.

Data
Literature and Research Databases
  • Autism Speaks: Resource Library. Presents information about and links to books, journals, toolkits, blogs, educational toys, DVDs, and websites about ASD.

  • ClinicalTrials.gov. Provides access to information about clinical research studies for a wide range of diseases and conditions, including ASD. Included are a summary of the study purpose, the recruiting status, patient participation criteria, the trial location, and contact information. To identify studies on the topic, enter Asperger Syndrome OR Autistic Disorder in the search field. ClinicalTrials.gov is a service of the National Institutes of Health (NIH) and was developed by the National Library of Medicine (NLM).

  • Cochrane Reviews. Presents systematic reviews of health care interventions internationally. For reviews about ASD, go to the box, Search abstracts & summaries, and type autism OR asperger. Click on Search Reviews to get your results. Access to the full-text article requires a subscription that is available in many hospital and university health sciences libraries. The database is published by the Cochrane Collaboration, an international nonprofit organization based in the United Kingdom.

  • Database of Abstracts of Reviews of Effects (DARE). Contains summaries of systematic reviews that have met strict quality criteria. Included reviews must be about the effects of interventions. Each summary also provides a critical commentary on the quality of the review. Search the database by typing autism OR asperger in the search box. Click on Go to get your results. DARE is produced and maintained by the Centre for Reviews and Dissemination at the University of York.

  • Education Resources Information Center (ERIC) Database. Covers all aspects of education-related issues through journal articles, conference proceedings, papers, speeches, research reports, teaching guides, curricula, and books. To identify many items about ASD, click on Advanced Search. Under Search for: select Descriptors (from Thesaurus) and type "Pervasive Developmental Disorders". To limit your search, add descriptors using the ERIC Thesaurus and/or scroll down farther on the search form to select Publication Date. Click on the Search button to get your results. ERIC is the information database of the Department of Education (ED).

  • HuGE Literature Finder. Presents bibliographic citations for published literature on genetic associations and other human genome epidemiology. Enter autism OR asperger in the search box. Click on Go to get your results. The list of selected articles is linked to PubMed.

  • MCH Library at the National Center for Education in Maternal and Child Health (NCEMCH), Georgetown University. Maintains several databases to collect, manage, and disseminate knowledge about maternal and child health (MCH), with special emphasis on knowledge gained from initiatives and programs supported by the Maternal and Child Health Bureau (MCHB). The library's bibliographic database is

    MCHLine®. Comprises an online catalog of materials in the MCH Library with several items about ASD. To identify them, type autism in the keyword field of the database search form.

    Also see the library's organizations database.

  • National Autistic Society: Autism Data. Presents bibliographic information on over 18,500 published research papers, books, articles, and multimedia resources about ASD. Search by author, title, keywords, abstract, and year published. The National Autistic Society is a U.K.-based advocacy organization that aims to provide individuals with ASD and their families in the United Kingdom with help, support, and services.

  • National Guideline Clearinghouse (NGC). Contains evidence-based clinical practice guidelines and related materials for health professionals. Identify guidelines about ASD by entering autism OR asperger in the Search field. The database is an initiative of the Agency for Healthcare Research and Quality (AHRQ).

  • PubMed. Contains over 20 million citations for biomedical articles from MEDLINE and life science journals. Citations may include links to full-text articles from PubMed Central or publisher websites. To identify articles about ASD, enter the phrase (child development disorders, pervasive) NOT (rett syndrome OR schizophrenia, childhood) in the search box. Click on Limits and make the following selections on the page: select a date (e.g. Published in the last 2 years); click on Languages: English; click on Ages: All Child; and select Search Field Tags: MeSH Major Topic. Click on Search to get your results. To narrow your search further or for additional searches, use the MeSH (Medical Subject Headings) database to identify terms (e.g., (child development disorders, pervasive) NOT (rett syndrome OR schizophrenia, childhood) AND social behavior ). PubMed is a service of the National Library of Medicine (NLM).

  • Also see TOXNET.
Programs Databases

Electronic Newsletters

Discussion Forums and Other Social Media

  • Autism Speaks: Social Network. Presents a forum where members can join online groups, start blogs, post photos and videos, and share information, resources and support on a wide range of ASD-related topics.

  • Interactive Autism Network (IAN). Presents

    Community Discussion Forums. This collection of online discussion groups aims to bring individuals with ASD, their families, and their friends together with researchers, therapists, educators, and other professionals in the autism field to ask questions, offer comments, provide feedback, and explore current autism research.

    IAN Exchange. This online forum encourages ASD researchers and associates to communicate and collaborate internationally by asking and responding to questions, creating social networks of experts, mentors, and colleagues, posting video content, and blogging.

  • Simons Foundation Autism Research Initiative: SFARI Blog. Offers news and information on autism research.

Resources for Families

Resources for Schools

Resources on Specific Aspects of Autism

Concerns About Vaccines

Note: The Department of Health and Human Services (DHHS) issued a statement on February 12, 2009, about the U.S. Court of Federal Claims' decisions in the Omnibus Autism Proceeding: "The medical and scientific communities have carefully and thoroughly reviewed the evidence concerning the vaccine-autism theory and have found no association between vaccines and autism." The court's decisions and background information are available online.

Environmental Health Research

Inappropriate Use of Seclusion and Restraints

Related MCH Library Resources

Autism Spectrum Disorders: Knowledge Path, 2nd ed. (June 2009). (Updated: October 2011).
Author: Susan Brune Lorenzo, M.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.; Missy Alexander, parent of a child with autism, The Parents’ Place of Maryland; Michelle A. Beauchesne, D.N.Sc., R.N., C.P.N.P., F.N.A.P., F.A.A.N.P., School of Nursing at Northeastern University; Lynn L. Cole, M.S., R.N., P.N.P., Strong Center for Developmental Disabilities at the University of Rochester Medical Center; Daniel Coury, M.D., College of Medicine at The Ohio State University and Nationwide Children's Hospital; Louanne Hudgins, M.D., Division of Medical Genetics at Stanford University School of Medicine and Lucile Packard Children's Hospital; Olivia K. Pickett, M.A., M.L.S., MCH Library.
Editor: Ruth Barzel, M.A., MCH Library.

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