Autism
Spectrum Disorders
Knowledge
Path
Knowledge Path Table of Contents
- Web Sites
- Additional Electronic Publications
- Distance Learning Resources
- Databases: Data, Literature and Research, and Programs
- Electronic Newsletters
- Discussion Forums and Other Social Media
Resources on Specific Aspects of Autism
- Early Identification
- Early Intervention and Education
- Concerns About Vaccines
- Environmental Health Research
- Inappropriate Use of Seclusion and Restraints
Please provide feedback on this knowledge path.
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 Youth with Special Health Care
Needs and Community
Services Locator: An Online
Directory for Finding Community
Services for Children and
Families.
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.
- 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 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. 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, 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.
- 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.
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.
- 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).
- 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.
- 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 19 million citations
for biomedical articles from MEDLINE
and life science journals. Citations
may include links to full-text articles
from PubMed Central or publisher Web
sites. To identify articles about ASD,
enter the
phrase (child development disorders,
pervasive) NOT (rett syndrome OR schizophrenia,
childhood) in the search box. Click
on Limits and make the following selections
on the page:
select a date (e.g. Published in the
last 2 years); click on Languages:
English; click on Ages: All Child;
and select Search Field Tags: MeSH
Major Topic.
Click on Search to get your results.
To narrow your search further or for
additional searches, use the MeSH
(Medical Subject Headings) database to identify
terms (e.g., (child development
disorders, pervasive) NOT (rett syndrome
OR schizophrenia, childhood) AND social
behavior ). PubMed
is a service of the National
Library of Medicine (NLM).
- Also see TOXNET.
- 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.
- 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.
- See the Maternal and Child Health Library's family resource brief, Autism Spectrum Disorders.
Resources on Specific Aspects of Autism
- 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.
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.
Presents information about research
related to vaccines and
ASDs.
- 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.
- 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).
Autism Spectrum Disorders: Knowledge Path, 2nd ed.
(June 2009). (Updated: July 2010).
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.
