June 2009

Introduction

This knowledge path about autism spectrum disorders (ASD) has been compiled by the Maternal and Child Health 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 early identification, early intervention and education, concerns about vaccines, environmental health research, and inappropriate use of seclusion and restraints. This knowledge path for health professionals, educators, researchers, policymakers, and families 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.

Related knowledge paths: Children and Adolescents with Special Health Care Needs and Community Services Locator: An Online Directory for Finding Community Services for Children and Families.

Overview

For general information about ASD, see the overview presented by the Autism Information Center.

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

Web Sites

• American Academy of Pediatrics (AAP): National Center for Medical Home Implementation. Presents a collection of resources for health professionals about caring for children with autism spectrum disorders (ASD). Includes links to resources about developmental screening and early intervention, a glossary of terms, and training programs and materials. Recent resources include
  
  Caring for Children with Autism Spectrum Disorders: A Resource Toolkit for Clinicians. (2008). View excerpts from the toolkit. Order the toolkit online.
  
  Management of Children with Autism Spectrum Disorders. (2007). [Clinical report].
  
  
• Autism Research Institute (ARI). Offers information about autism and its diagnosis, treatment, and possible triggers. Includes information about Defeat Autism Now! (DAN), a project that trains health professionals about the diagnosis of and interventions for autism. Resources include bibliographies of emerging findings in autism research, conference Webcasts, and subscription information for ARI's quarterly newsletter that covers medical and educational advances in autism research.
  
  
• Autism Speaks. Presents diagnosis, treatment, and coping information about autism, Asperger syndrome, and PDD-NOS. Offers news, research and grant information and resources, and meeting announcements about global research into the causes, treatment, and eventual cure for autism. Includes a wealth of resources for families, a toolkit for schools, online video clips, an electronic newsletter, and online social networks. Autism Speaks facilitates autism research, awareness, advocacy, and family services. Also see the Autism Genetic Resource Exchange (AGRE).
  
  
• Centers for Disease Control and Prevention (CDC): Autism Information Center. Offers information about ASD and symptoms, screening and diagnosis, treatment and therapy, and concerns about vaccines. Describes CDC's autism surveillance activities and links to related reports and journal article citations. Offers information about and links to CDC-funded state activities that track the number of children who have ASD; conduct studies to find out what factors make it more likely that a child will have ASD; and offer education and outreach. Also describes and links to Congressional activities and other federal activities focusing on autism. Initiatives include
  
  Autism and Developmental Disabilities Monitoring (ADDM) Network. Describes this group of programs to determine the prevalence of ASD in U.S. communities.
  
  Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) Network. Describes the programs in the network and its current initiative, Study to Explore Early Development (SEED), a 5-year, multi-site collaborative study to help identify factors that may put children at risk for ASD.
  
  Also see CDC's Learn the Signs. Act Early.
  
  
• Easter Seals: State Autism Profiles. Presents a collection of reports about autism services in 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 insurance coverage for autism if available, Medicaid services specific for individuals with autism, educational programs provided to students with autism or training that focused on autism, special education criteria, other state-led resources, and sponsors of autism legislation.
  
  
• Interactive Autism Network (IAN): Resources For Researchers. Offers an 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. Also offers online discussion forums, lists ASD research conferences, and presents a wealth of resources for families. IAN is a project of the Kennedy Krieger Institute and is sponsored by Autism Speaks.
  
  
• Interagency Autism Coordinating Committee (IACC). Offers meeting materials and a calendar of upcoming meetings for IACC, which coordinates all efforts within the Department of Health and Human Services (HHS) concerning ASD. IACC is mandated to develop and annually update a strategic plan for conducting and supporting ASD research. The first blueprint is
  
  Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder Research. (2009).
  
  
• Maternal and Child Health Bureau (MCHB): Combating Autism. Presents information about grant programs to improve the health and well-being of children and adolescents with ASD. Grants fund training programs, state demonstration and policy projects, and research networks. Recent resources include
  
  An Introduction to the HRSA/MCHB Combating Autism Act Initiative (CAAI). (2009). [Archived webcast and podcast].
  
  
• M.I.N.D. Institute (Medical Investigation of Neurodevelopmental Disorders). Presents information about its research to understand the causes and to develop effective diagnoses, treatments, preventions, and, ultimately, cures for autism, fragile X, and other neurodevelopmental disorders. Resources include a Webcast collection. The M.I.N.D. Institute is located at the University of California at Davis.
  
  
• Nancy Lurie Marks (NLM) Family Foundation. Presents information about its autism research, education, and service delivery grants and symposia. The NLM Family Foundation funds peer-reviewed research projects, supports autism advocacy organizations, supports the production of educational materials about autism, and provides infrastructure and training grants to hospitals, universities, and other research institutions.
  
  
• National Institutes of Health (NIH). Supports initiatives and resources about autism spectrum disorders (ASD) that include
  
  Autism Research Network. Presents information about two major research networks dedicated to understanding and treating autism, the Collaborative Programs of Excellence in Autism (CPEA) Network and the Studies to Advance Autism Research and Treatment (STAART) Network. Includes links to the journal articles published as a result of the research.
  
  Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD): Autism Research at the NICHD. Presents information about NICHD research projects, publications, news releases, and other activities related to ASD.
  
  National Institute for Dental and Craniofacial Research (NIDCR). Offers a booklet for oral health professionals, Practical Oral Care for People with Autism (rev. ed.) (2008).
  
  Also see ClinicalTrials.gov, Computer Retrieval of Information on Scientific Projects (CRISP), OMIM™ Online Mendelian Inheritance in Man™, PubMed, the Centers for Children's Environmental Health and Disease Prevention Research, and TOXNET.
  
  
• Organization for Autism Research (OAR). Offers resources and funding information about the communication, educational, and vocational challenges of people with ASD. OAR is a national nonprofit organization focused on applied research into the challenges of living with autism. See OAR's monthly electronic newsletter and its resources for families and educators and service providers.
  
  
• TEACCH Autism Program. Presents general information about ASD and information about educational and communication approaches for treatment. Lists publications and assessment tools and upcoming training opportunities. Resources include evaluation guidelines to consult when considering nontraditional therapies. Includes information about TEACCH programs and services for individuals with autism and their families and those who serve and support them. TEACCH is located at the University of North Carolina at Chapel Hill School of Medicine and is part of the Carolina Institute for Developmental Disabilities (CIDD).
  

  
  

Additional Electronic Publications

• Autism Service Guidelines Workgroup. 2008. Medical Home Services for Autism Spectrum Disorders: Including Service System Guidelines for Medical Home Primary Care Practices with Recommendation for Systems Development and Coordination. Madison, WI: National Medical Home Autism Initiative, Waisman Center. This report presents a framework for ASD services within the medical home and offers a series of system guidelines to promote discussion, interaction, and collaboration among various stakeholders who are involved with services to children with ASD and their families.
  
  
• National Professional Development Center on Autism Spectrum Disorders. 2009. Evidence-Based Practices for Children and Youth with ASD. Chapel Hill, NC: FPG Child Development Institute. This fact sheet defines evidence-based practice and lists practices with a confirmed evidence base for individuals with ASD.
  

  
  

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. Recent resources include
  
  Medical Home Implementation Teleconference Series. (2009).
  
  Also see AAP's Act Early on Developmental Concerns: Partnering with Early Intervention (2008).
  
  
• 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

• Autism Genetic Resource Exchange (AGRE). Describes this effort to advance genetic research in autism by obtaining blood samples and clinical data from families that have two or more children diagnosed with ASD. Data are available for analysis by members of the scientific community. AGRE is funded by the National Institute of Mental Health (NIMH) and Autism Speaks (AS).
  
  
• Data Resource Center for Child and Adolescent Health (DRC). Provides access to and use of data from the National Survey of Children's Health, 2003, and the National Survey of Children with Special Health Care Needs, 2001 & 2005/2006. For data about autism, select the National Survey of Children with Special Health Care Needs, 2001 & 2005/2006. Select CSHCN Condition-Specific Profile. Choose a state or nation and report format, and select a condition (i.e., autism). Click on Next. Choose additional indicators. Click on Next to get your profile. DRC is a project of the Child and Adolescent Health Measurement Initiative (CAHMI). A recent article that uses data from the National Survey of Children with Special Health Care Needs, 2005-2006 is
  
  A National Profile of the Health Care Experiences and Family Impact of Autism Spectrum Disorder Among Children in the United States, 2005-2006. (2008).
  
  
• OMIM™ Online Mendelian Inheritance in Man™. Comprises an online compendium of human genes and genetic phenotypes. 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 Go to get your results. OMIM™ is a service of the National Library of Medicine (NLM).
  
  
• Simons Foundation Autism Research Initiative (SFARI): SFARI Simplex Collection (SSC). Describes this initiative to establish a permanent repository of genetic samples from 2000 families, each of whom has one child affected with ASD and parents unaffected with ASD. Each genetic sample will have an associated collection of data that provides a precise characterization of the individual (phenotype). The data is available to any qualified researcher via SFARI Base. SSC is a collaboration of the Simons Foundation with 13 university-affiliated research clinics across the United States and Canada, under the guidance of the University of Michigan Autism & Communication Disorders Center. Also see SFARI Gene, a database for ongoing collection, manual annotation, and visualization of genes linked to ASD from the published literature. SFARI also offers a blog about autism research.
  
  
• Title V Information System (Title V IS). Contains data from annual Title V Block Grant applications and reports submitted by all 59 U.S. states and jurisdictions. To learn about states' efforts to address ASD, select Narrative and then State Narratives Text Search. Under Search Word or Phrase, type Autism. Select a state or states and click on Start Search to get your results. Title V IS is a service of the Maternal and Child Health Bureau (MCHB).
  
  
• Also see the Interactive Autism Network (IAN).
  

Literature and Research Databases

• Autism Speaks: Resource Library. Presents information about and links to books, journals, toolkits, blogs, educational toys, DVDs, and Web sites 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.
  
  
• Computer Retrieval of Information on Scientific Projects (CRISP). Contains information about federally funded biomedical research projects conducted at universities, hospitals, and other research institutions. Search CRISP to identify scientific concepts, emerging trends and techniques, or specific projects and/or investigators. Type autism asperger in the search term box of the Query Form. and click on Submit Query to get your results. The database is maintained by the Office of Extramural Research at the National Institutes of Health (NIH).
  
  
• 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 asperger in the search box and clicking on the button for Any of these words. Click on Search 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.
  
  
• Maternal and Child Health 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 Maternal and Child Health 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 18 million citations for biomedical articles that date back to 1948. These citations are from MEDLINE and additional life science journals. PubMed includes links to sites providing full-text articles and other related resources. To identify many articles about ASD, enter the phrase (child development disorders, pervasive) NOT (rett syndrome OR schizophrenia, childhood) in the search box. Then, 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; and select Tag Terms: MeSH Major Topic. Selecting Type of Article and/or adding additional search terms (e.g., (child development disorders, pervasive) NOT (rett syndrome OR schizophrenia, childhood) AND social behavior ) will further limit the search. Use MeSH to identify additional search terms. PubMed is a service of the National Library of Medicine (NLM).
  
  
• Also see TOXNET.
  

Programs Databases

• AAP Community Pediatrics Grants/Projects Searchable Database. Comprises an archive of community pediatrics grant projects. To identify projects, select Topic: Autism Spectrum Disorders. Click on Basic Submit to get your results. To narrow your search, select a target population and/or a state, territory, or country.
  
  
• Discretionary Grant Information System (DGIS). Contains program and performance measure data for more than 900 grants issued by the Maternal and Child Health Bureau (MCHB). To identify grants about ASD, select Abstracts. Type autism asperger in the search field and click on Any of the words. Click on Search to get your results. Conduct another search to find products and publications produced by MCHB training grantees. Select Program Data, Training, and Search Products and Publications. Type autism asperger in the search field and click on Any of the words. Click on Search to get your results.
  
  
• Health Services Research Projects in Progress (HSRProj). Provides information about ongoing health services research and public health projects. To identify projects, enter autism in the search box. Click on Search to get your results. HSRProj is funded by the National Library of Medicine (NLM).
  
  
• Maternal and Child Health Library at the National Center for Education in Maternal and Child Health (NCEMCH), Georgetown University. The library's organizations database is
  
  MCH Organizations Database. Lists over 2,000 government, professional, and voluntary organizations involved in MCH activities, primarily at a national level. To identify organizations, type autism in the keyword field of the database search form. Click on Search to get your results.
  
  
• National Conference of State Legislatures: Autism Legislation Database. Offers information about autism legislation introduced in the 50 states and the District of Columbia from the 2008 legislative session to present. Search legislation by state, topic, bill status, primary sponsor, bill number, or keyword.
  

  
  

Electronic Newsletters

• Autism National Committee (AUTCOM): Communicator. This electronic newsletter presents articles and commentary by people with ASD and advocates dedicated to protecting and advancing the civil rights of people with ASD.
  
  
• Autism Speaks: e-Speaks. This electronic newsletter reports on ASD-related news, legislative updates, scientific developments, and fundraising events.
  
  
• Organization for Autism Research (OAR): The OARcle. This monthly electronic newsletter reports on ASD-related research, resources, meetings, and fundraisers.
  
  
• US Autism & Asperger Association, Inc. (USAAA): USAAA WeeklyNews. This weekly electronic newsletter reports on research, resources, meetings, and programs about ASD.
  

  
  

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

Find Care

• Autism Cares. Provides support to families affected by autism during natural disasters and other catastrophic life events. Family support awards cover critical life expenses (housing, automobile repair, prescriptions, child care, funeral expenses, and other essential items) on a case-by-case basis.
  
  
• AutismLink: Services. Search by name, location, and support type (e.g., dentist, nutrition counselor, summer camps) to find ASD-related services.
  
  
• Autism Society of America (ASA): Autism Source™. Search by city, state, language spoken, and service type (e.g., assistive technology, camps, respite services) to find autism-related services and supports.
  
  
• Autism Speaks: Family Services. Provides individuals and families with national and local ASD-related services for a variety of needs from early intervention to adult care. Families may also call (888) 288-4762 (888-AUTISM2) or e-mail familyservices@autismspeaks.org to communicate with an Autism Response Team coordinator about information and resources.
  
  
• MAAP Services for Autism and Asperger Syndrome: Professional and Parent Supports in Your Area. Click on a state to find contact information for professional and parent support groups. Also lists national and international organizations and private schools in the United States.
  
  
• TalkAutism: resourceFind. Search by topic and location to find professionals, services, products, and information related to autism.
  
  
• Also see the Community Services Locator: An Online Directory for Finding Community Services for Children and Families.
  
  
• In addition, Exceptional Parent Magazine offers an annual resource guide containing directories of organizations, associations, products, and services for families having children with disabilities, including autism. To receive a free copy, call (800) E-PARENT.
  

  

Web Sites for Families

• Autism Research Institute (ARI). Offers information about autism and its diagnosis, possible triggers, and treatment. Presents collections of articles for families living with autism and articles for and by individuals with autism and Asperger syndrome. Topics include educational therapies, sensory integration, siblings, insurance, medical care, advocacy, and older children and adults with autism. Some articles are available in Arabic, Armenian, Chinese, German, Spanish, French, Italian, Japanese, Korean, Portuguese, Russian, and Turkish.
  
  
• Autism Society of America (ASA). Presents information about ASD and its diagnosis, treatment and education approaches, and impact on family life. Includes information about environmental health and autism, an online directory of local resources, Spanish-language resources, and contact information for local ASA chapters. ASA's Safe and Sound Campaign offers general safety, emergency preparedness and prevention, and risk management information and materials for families who have children with ASD.
  
  
• Autism Speaks. Presents information about autism, Asperger syndrome, and PDD-NOS. Offers a database of family services, a resource library, a toolkit to use with schools, online video clips, an electronic newsletter, and online social networks. Also includes a toolkit for families with resources needed soon after a child is diagnosed with autism and a collection of resources about global research into the causes, treatment, and eventual cure for autism.
  
  
• Family Voices (FV). Presents tools for advocating for children and adolescents with special health care needs. FV administers Family to Family Health Information Centers (F2F HICs) that help families find the resources to provide and finance health care for their children.
  
  
• Global and Regional Asperger Syndrome Partnership (GRASP). Offers articles, program information, and online discussion groups in English and Spanish about ASD. GRASP is an educational and advocacy organization serving individuals on the autism spectrum.
  
  
• Gray Center for Social Learning and Understanding. Presents information about Social Stories™, which describe situations, skills, or concepts in terms of relevant social cues, perspectives, and common responses. Offers sample Social Stories™, suggestions for writing them, and ordering information for books and DVDs about the concept.
  
  
• Interactive Autism Network (IAN) Community. Describes autism, Asperger syndrome, and PDD-NOS. Presents information for parents with a newly diagnosed child. Offers many articles about the challenges that people with ASD face, treatments and therapies, and participating in and understanding research. Also offers online discussion forums and lists research conferences.
  
  
• MAAP Services for Autism and Asperger Syndrome. Provides information to families of individuals within the autism spectrum who do not experience severe cognitive disabilities. Includes a directory of professional and parent support groups. MAAP is a global nonprofit family support network.
  
  
• National Institutes of Health (NIH): Autism. Lists the NIH institutes with information about ASD, including
  
  Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD): Autism Spectrum Disorders. Offers publications about ASD symptoms, causes, and treatment; vaccines; the role of genetics; and programs funded by NICHD, including the National Children's Study. Many of these materials are available in English and Spanish.
  
  National Institute of Mental Health (NIMH): Autism Spectrum Disorders.
  
  National Institute of Neurological Disorders and Stroke (NINDS). Offers fact sheets in English and Spanish about autism and Asperger syndrome.
  
  National Institute on Deafness and Other Communication Disorders (NIDCD): Autism and Communication.
  
  
• Online Asperger Syndrome Information and Support (OASIS). Presents articles and links to resources about high-functioning autism and Asperger syndrome.
  
  
• Organization for Autism Research (OAR): Family and Friends. Gives information about ASD and its characteristics, diagnosis, intervention, research, and family support. Offers a series of resource guides in English and Spanish.
  
  
• Out-of-Sync Child. Presents information about and resource lists to support families with children who have sensory integration challenges.
  
  
• Parent to Parent USA (P2P USA). Gives contact information for statewide parent-to-parent programs. The programs provide emotional support and information to families of children with special health care needs, most notably by matching parents seeking support with a trained and experienced veteran parent who has shared the experience of disability in the family. Also offers technical assistance and resources to parents interested in building, improving, and evaluating a parent-to-parent program.
  
  
• Yale Developmental Disabilities Clinic: Autism/PPD. Offers information about research studies, conferences, and publications about ASD. Includes answers to questions that parents frequently ask and contact information for clinics, support groups, professionals, summer camps, and computer-based learning.
  
  
• Savner JL, Myles BS. 2000. Making Visual Supports Work in the Home and Community: Strategies for Individuals with Autism and Asperger Syndrome. Shawnee Mission, KS: Autism Asperger Publishing Company. Preview the book. This book presents a brief overview of the variety of visual strategies (e.g., checklists, schedules) that can be used in caring for individuals with ASD.
  
  
• Also see the TEACCH Autism Program.
  
  
• Note: Many of the resources presented in the following section of this knowledge path, Resources on Specific Aspects of Autism, contain information for families.
  

  

Resources on Specific Aspects of Autism

Early Identification

• Autism Speaks: ASD Video Glossary. Presents online video clips to help parents and professionals learn more about the early warning signs and diagnostic features of ASD.
  
  
• Centers for Disease Control and Prevention (CDC): Learn the Signs. Act Early. Provides fact sheets in English and Spanish on developmental milestones for infants and children from birth to age 5 that include a list of signs that could indicate a developmental disability such as autism. View the online video, Baby Steps: Learn the Signs. Act Early (2008).
  
  
• First Signs. Offers information to health professionals, educators, and families about the importance of early detection of and intervention for ASD and other developmental and behavioral disorders. Lists key social, emotional, and communication milestones for young children (birth to age 3), and describes critical warning signs when a child is at risk for developmental delays and disorders. Includes information about the First Signs training programs in several states. First Signs is a national, nonprofit organization that aims to improve screening and referral practices and to lower the age at which young children are identified with autism and other developmental disorders.
  
  
• Drotar D, Stancin T, Dworkin P. 2008. Pediatric Developmental Screening: Understanding and Selecting Screening Instruments. New York, NY: The Commonwealth Fund. This Web-based manual helps health professionals choose and apply the structured screening method that is most appropriate for their practice setting. The manual is based on an extensive review of scientific research on available developmental screening instruments.
  
  
• Hagan JF, Shaw JS, Duncan PM, eds. 2007. Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents (3rd ed.). Elk Grove Village, IL: American Academy of Pediatrics (AAP). These guidelines provide child health promotion information and guidance for health supervision visits from infancy through adolescence. The guidelines include recommendations for autism screening as part of the periodicity table.
  
  
• Also see the American Academy of Pediatrics (AAP) clinical report, Identification and Evaluation of Children with Autism Spectrum Disorders (2007).
  

  
  

Early Intervention and Education

• American Academy of Pediatrics (AAP). Presents Act Early on Developmental Concerns: Partnering with Early Intervention (2008), a set of materials from a Web conference about the role of early intervention programs and the importance of referring children to early intervention and follow-up services as soon as a developmental issue is suspected. Materials include an audio recording, a PowerPoint presentation, an early intervention referral form, and sample program materials.
  
  
• Autism Speaks. Presents toolkits for families and schools about early intervention and education, including
  
  100 Day Kit. (2008). This toolkit aims to help families in getting the critical information they need in the first 100 days after a child is diagnosed with autism. Also available in Spanish.
  
  School Community Tool Kit. Presents information to help members of the school community understand and support students with ASD.
  
  
• National Dissemination Center for Children with Disabilities (NICHCY). Provides a wealth of resources for families, educators, and other professionals on disabilities, such as autism, and disability-related issues, such as early intervention, special education and related services, individualized education programs (IEPs), family issues, education rights, and transition to adult life. State resource sheets list up-to-date contact information for state agencies and organizations, disability-specific organizations, parent groups and parent training and information centers, and other organizations within each state that address disability-related issues. Materials are available in English and Spanish. NICHCY is funded by the Department of Education (ED).
  
  
• National Early Childhood Technical Assistance Center (NECTAC): Autism Spectrum Disorders (ASD). Presents a collection of resources to improve service systems and outcomes for toddlers and preschool-age children with ASD and their families. Topics include early identification, prevalence, elements of effective programs, preparation of personnel, and family support. NECTAC is the national early childhood technical assistance center supported by the Department of Education (ED).
  
  
• Technical Assistance Alliance for Parent Centers (The Alliance). Gives contact information and other resources for developing, assisting, and coordinating Parent Training and Information Projects (PTIs) and Community Parent Resource Centers (CPRCs) under the Individuals with Disabilities Education Act. PTIs and CPRCs in each state offer training and information to parents of children and adolescents with disabilities to help them participate more effectively with professionals in meeting the educational needs of their children.
  
  
• Families for Early Autism Treatment (FEAT). 2008. Handbook for Teachers of Students with Autism Spectrum Disorder. Sacramento, CA: Families for Early Autism Treatment (FEAT). This booklet is designed for a parent or caregiver of a child with ASD to fill out and provide personalized information to his or her teacher that would be helpful to know in the classroom. This booklet is also available in Spanish.
  
  
• Filler C, Rosenshein M. 2008. Transition to Adulthood Guidelines for Individuals with ASD. Ohio Center for Autism and Low Incidence. This document provides guidance and resources for parents and professionals during the process of transition to adulthood for individuals with ASD.
  
  
• National Research Council, Committee on Educational Interventions for Children with Autism. 2001. Educating Children with Autism. Washington, DC: National Academies Press. This book outlines an interdisciplinary approach to education for children with autism. The committee explores what makes education effective for the child with autism and identifies specific characteristics of programs that work.
  
  
• Also see the Organization for Autism Research (OAR), the TEACCH Autism Program, and the Education Resources Information Center (ERIC) Database.
  

  
  

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.

• American Academy of Pediatrics (AAP): Vaccine Safety. Offers fact sheets and patient-education materials about the general safety of vaccines, thimerosal and vaccines, and concerns about the measles-mumps-rubella vaccine and autism. A series of audio interviews with pediatricians, infectious disease experts, and parents answer questions that many parents have about their children's vaccines.
  
  
• Centers for Disease Control and Prevention (CDC): Vaccines and Autism. Presents information about the research CDC and other federal agencies are doing related to vaccines and ASD.
  
  
• National Network for Immunization Information (NNii). Provides information about vaccines and the diseases they prevent. Includes a summary of the scientific evidence concluding that there is no link between measles vaccines or thimerosal-containing vaccines and autism. NNii is affiliated with several professional medical associations.
  
  
• Vaccines: Wading Through the Confusion. Presents a Webcast featuring an expert panel of medical, scientific, public health, and communications professionals who discuss parents' questions and fears about vaccines. The panel also includes parents whose lives have been touched by vaccine-preventable disease or by autism. This archived Webcast by the California Department of Public Health, Immunization Branch, originally aired on February 19, 2009.
  

  
  

Environmental Health Research

• Autism Society of America (ASA): Environmental Health and Autism. Presents research and policy information and background materials that examine the links between environmental health and ASD.
  
  
• Centers for Children's Environmental Health and Disease Prevention Research: Autism and Neurodevelopmental Disorders. Describes research investigating how environmental factors may affect the development of autism and other neurodevelopmental disorders in children. The centers are a joint initiative of the Environmental Protection Agency (EPA) and the National Institute of Environmental Health Sciences (NIEHS).
  
  
• National Children's Study. Contains information about this study to examine the effects of environmental influences on the health and development of 100,000 children across the United States, following them from before birth until age 21. The goal of the study is to improve children's health and well-being and to improve the prevention and treatment of health problems such as autism, birth defects, diabetes, heart disease, and obesity. The study is led by a consortium of federal partners.
  
  
• TOXNET: (Toxicology Data Network). Presents a cluster of databases covering toxicology, hazardous chemicals, environmental health, and toxic releases. To identify articles and data about ASD, enter autism in the box under Search All Databases. Click on Search to get your results. TOXNET is a service of the National Library of Medicine (NLM).
  
  
• Institute of Medicine (IOM), Forum on Neuroscience and Nervous System Disorders. 2008. Autism and the Environment: Challenges and Opportunities for Research. Workshop Proceedings. Washington, DC: National Academies Press. These proceedings provide information from a 2007 workshop examining the ways in which environmental factors such as chemicals, infectious agents, and physiological or psychological stress can affect brain development.
  

  
  

Inappropriate Use of Seclusion and Restraints

• Substance Abuse and Mental Health Services Administration (SAMHSA): Seclusion and Restraint. Offers resources about eliminating the use of seclusion and restraint in mental health services. Publications include
  
  Roadmap to Seclusion and Restraint Free Mental Health Services. (2006).
  
  
• Kutz GD. 2009. Seclusions and Restraints: Selected Cases of Death and Abuse at Public and Private Schools and Treatment Centers. Washington, DC: Government Accountability Office (GAO). This report provides an overview of seclusion and restraint laws applicable to children in public and private schools, reports on allegations of student death and abuse from the use of these methods, and examines the facts and circumstances surrounding cases where a student died or suffered abuse as a result of being secluded or restrained.
  
  
• National Disability Rights Network (NDRN). 2009. School is Not Supposed to Hurt: Investigative Report on Abusive Restraint and Seclusion in Schools. Washington, DC: National Disability Rights Network (NDRN). This report identifies the problems attributed to restraint and seclusion of children with disabilities in schools and proposes solutions to their use by highlighting the best practices in education and the use of positive behavioral supports. The report also outlines the current patchwork of state laws, regulations, and guidelines regarding the use of restraints and seclusion in schools.
  
  
• Please note: The Child Death Review Process presented by the National MCH Center for Child Death Review is being revised to allow for national data tracking on preventable child deaths due to the use of restraints. A companion training protocol is also being revised.
  
  
• Also see the American Academy of Pediatrics (AAP) clinical report, Maltreatment of Children with Disabilities (2007).
  

  
  

Author: Susan Brune Lorenzo, M.L.S., Maternal and Child Health 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., Maternal and Child Health Library.