Autism
Spectrum Disorders
Knowledge
Path
April 2009
Draft
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, and environmental
health research. 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
ASD 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.
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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.
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Resources for Professionals
Web Sites
- American
Academy of Pediatrics (AAP) National
Center of Medical Home Initiatives
for Children with Special Needs.
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 resources
for families, including Learn
the Signs. Act Early.
- Centers
for Medicare & Medicaid
Services (CMS): Promising
Practices in Home and Community-Based
Services (HCBS). Presents
a collection of reports to highlight
state efforts to enable persons
of any age who have a disability
or long-term illness to live in the
most integrated community setting
appropriate to their individual support
requirements and preferences, exercise
meaningful choices, and obtain quality
services. Recent reports about ASD
include
Early
Diagnosis of Autism Spectrum Disorders. California: Single Process for Diagnosis
and Service Delivery. (2007).
Preparing
Individuals for Employment. Delaware:
Supported Employment for Adults with
Autism Spectrum Disorders. (2007).
Support
for Adults with Autism Spectrum Disorders. Connecticut: Pilot Program for Young
Adults with Autism Spectrum Disorders. (2007).
- 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. The profiles were
prepared by Easter Seals and the Autism
Society of America.
- 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 autism spectrum
disorders (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), MedlinePlus, 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.
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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.
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.
- Ohio
Center for Autism and Low Incidence
(OCALI): Autism 101.
Presents a short Webinar about
ASD.
- 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 videotapes, 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, the Autism
Speaks video
glossary,
the dbpeds.org
developmental and behavioral online learning module, and the Professional
Development in Autism Center (PDA) online
course.
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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
and discussion forum for sharing 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.
- 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 the Education
Resources Information Center (ERIC)
Database and 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 (awareness, education,
financing,
health and human services, infrastructure, insurance, professional training,
and screening), bill status, primary
sponsor, bill number,
or keyword. New legislation will
be added to the database as it is
introduced.
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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.
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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.
- Dbpeds.org
Discussion Forums. Hosts
Web-based discussion forums to
support subspecialty and primary
care pediatrics practice by facilitating
clinical case discussion, continuing
education,
and scientific exchange.
Membership is open to health professionals
who care for
children with developmental and
behavioral problems.
- 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).
Offers a blog with
news and information on autism
research and a discussion
forum to ask questions
and share results about autism
research.
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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 MedlinePlus and
its Go Local feature and the Community
Services Locator: An Online Directory for Finding
Community Services for Children and Families.
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Web
Sites for
Families
- About
Our Kids: For Families.
Presents information and a collection
of science-based articles about ASD.
- American
Speech-Language-Hearing Association
(ASHA): Autism Spectrum Disorders.
Offers information
about ASD and its symptoms,
diagnosis, and treatments including
speech-language
pathology services. Includes
a podcast by
Amy Wetherby, an ASHA fellow
and speech-language pathologist,
who discusses the importance
of early autism detection.
- 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.
- Autism
Spectrum Disorders from A to
Z. Presents information about ASD in English
and Spanish. Includes the publication
Bilingual
Autism Resource Guide/Guia
Bilingüe de Recursos Sobre Autismo. (2006).
- Center
for Autism and Related Disabilities
(CARD). Presents a collection of fact sheets
about ASD, Asperger syndrome,
PDD-NOS, choosing professionals
and coordinating services,
diagnosing and evaluating ASD,
and positive behavior support.
CARD is located at the University
of Central Florida.
- Centers
for Disease Control and Prevention
(CDC): Autism Information Center.
Offers information in English and
Spanish about ASD and symptoms,
screening and diagnosis, treatment
and therapy,
and concerns
about vaccines. Describes
CDC surveillance activities
and Congressional activities related
to ASD. Also see CDC's Learn
the Signs. Act Early.
- Easter
Seals: Autism. Presents information about its services and support for children and adults living with autism and their families. Includes a blog for families and a collection of state
profiles about autism services in the 50 states, the District of Columbia, and Puerto Rico.
- Family
Voices.
Presents tools
for advocating for children
and adolescents with special
health care needs.
- 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.
- Indiana
Resource Center for Autism (IRCA).
Offers a collection of articles
for families on
topics related to ASD, including
behavior, sensory programming,
education, communication, and family
support. Also provides annotated
lists of books and videos, conference
information, and contacts for services
in Indiana. IRCA is supported by
the Indiana
Institute on Disability and Community.
- 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.
- MedlinePlus:
Autism.
Provides links to information in
English and Spanish about ASD.
Topics
include symptoms, diagnosis, treatment,
alternative therapy, rehabilitation,
and coping. Also links to local
service providers for
autism
in
several states, an
automatic search in PubMed,
and a MedlinePlus page about
Asperger
syndrome. MedlinePlus is
a health information service of
the National
Library of Medicine.
- 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.
- 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.
- Note: Many of the resources
presented in the following section
of this knowledge path, Resources on
Specific Aspects of Autism, contain
information for families.
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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).
- Developmental
Behavioral Pediatrics Online (dbpeds.org).
Contains screening tools, articles, Web-based
discussion forums, and other
resources for health professionals
to support improvement in developmental
and behavioral screening, surveillance,
and identification of disabilities,
including ASD. dbpeds.org is affiliated
with the American Academy of Pediatrics
Section on Developmental
and Behavioral Pediatrics and is
funded
by the Commonwealth
Fund. Resources include
Developmental
and Behavioral Screening Tutorial.
This online learning module for
child health professionals
provides information about
techniques that can be used effectively
and efficiently in the office
setting. The module includes
background information on screening
and surveillance and an annotated
list of tools.
- 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.
- Also see
the American
Academy of Pediatrics (AAP) clinical
report,
Identification
and Evaluation of Children with Autism Spectrum Disorders (2007) and the
Centers
for Medicare & Medicaid Services (CMS) report, Early
Diagnosis of Autism Spectrum Disorders. California: Single Process for Diagnosis
and Service Delivery (2007).
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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.
- 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).
- 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).
- Organization
for Autism Research (OAR): Educators
and Service Providers.
Offers information about ASD, guides
to help children with ASD in the
classroom,
information about IEPs and how
to implement them, and worksheets
for classroom
planning.
- Professional
Development in Autism Center (PDA).
Offers articles, tip sheets, and
research briefs to improve educational
opportunities for students
with ASD. PDA has five sites located
around the country that provide
training and support for school
districts, families, and communities
to ensure that students with ASD
have access to high-quality, evidence-based
educational services in their local
school districts. Resources include
Autism 101.
This online course provides
an overview of ASD and describes
how the characteristics associated
with ASD may impact learning
for children with this diagnosis
in schools, communities, and
home environments.
Components of effective
intervention programs for students
with ASD are also described.
- 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.
- Ralabate
P, ed. 2006. Puzzle
of Autism.
Washington, DC: National
Education Association (NEA).
This guide presents information about
ASD, explains
the characteristics of students
with ASD, and suggests effective
classroom strategies
for
improving
communication, sensory, social, and
behavioral skills.
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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 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.
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Author: Susan Brune Lorenzo,
M.L.S., Maternal and Child Health Library.
Reviewers: Olivia K. Pickett, M.A., M.L.S.,
Maternal and Child Health Library; [Add
Reviewers' Names]
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