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
- 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.
- 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 Spectrum Disorders.
Offers information about ASD and
symptoms, screening and diagnosis,
treatment,
data, and research including concerns
about vaccines. Describes
CDC's autism surveillance activities
and links to related reports and
journal article citations.
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.
- 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.
- 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
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.
- 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 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
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.
- 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).
- National Database for Autism Research (NDAR). Research data repository to promote scientific data sharing and collaboration among autism spectrum disorder (ASD) investigators. Contains genetic, phenotypic, clinical, and medical imaging data from over 25,000 research participants. NDAR is a service of the National Institutes of Health (NIH).
- 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 2,700 families,
each of whom has one child affected with ASD
and parents unaffected with ASD. Each genetic
sample has 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 12 university-affiliated
research clinics,
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.
- Also see the Interactive Autism Network (IAN) and the MCH Library resource brief, Maternal and Child Health Data and Statistics.
- 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.
- 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.
- 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.
- Also see the MCH Library resource brief, Maternal and Child Health Literature and Research Databases.
- Programs
Databases
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): 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.
- 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
- Autism
Society of America (ASA): Environmental
Health Initiative. Presents
research and policy information
and background materials that examine
the links
between environmental health
and ASD.
- Children's Environmental
Health and Disease Prevention Research Centers (CEHCs).
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
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Autism Spectrum Disorders: Knowledge Path, 2nd ed.
(June 2009). (Updated: January 2013).
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.
