What
are Sources of Information and Support?
Parents
often find that books and movies about
autism that have happy endings
cheer them, but raise false hopes.
In such stories, a parent's novel
approach suddenly works or the child
simply outgrows the autistic
behaviors. But there really are
no cures for autism and growth takes
time and patience. Parents should
seek practical, realistic sources
of information, particularly those
based on careful research.
Similarly,
certain sources of information are
more reliable than others. Some popular
magazines and newspapers are quick
to report new "miracle cures"
before they have been thoroughly researched.
Scientific and professional materials,
such as those published by the Autism
Society of America and other organizations
that take the time to thoroughly evaluate
such claims, provide current information
based on well-documented data and
carefully controlled clinical research.
Resources
The
following resources provide a good
starting point for gaining insight,
practical information, and support.
Further information on autism can
be found at libraries, book stores,
and local chapters of the Autism Society
of America.
Books
for parents
Baron-Cohen,
S., and Bolton, B. Autism: The Facts.
New York: Oxford University Press,
1993.
Harris,
S., and Handelman, J. eds. Preschool
Programs for Children with Autism.
Austin, TX: PRO-ED, 1993.
Hart,
C. A Parent's Guide to Autism, New
York: Simon & Schuster, Pocket
Books, 1993.
Lovaas,
O. Teaching Developmentally Disabled
Children: The ME Book. Austin, TX:
PRO-ED, 1981.
May,
J. Circles of Care and Understanding:
Support Groups for Fathers of Children
with Special Needs. Bethesda, MD:
Association for the Care of Children's
Health, 1993.
Powers,
M. Children with Autism: A Parents'
Guide. Rockville, MD: Woodbine House,
1989.
Sacks,
O. An Anthropologist on Mars. New
York: Knopf, 1995.
Advocacy
Manual: A Parent's How-to Guide for
Special Education Services. Pittsburgh:
Learning Disabilities Association
of America, 1992.
Directory
for Exceptional Children: A Listing
of Educational and Training Facilities.
Boston: Porter Sargent Publications,
1994.
Pocket
Guide to Federal Help for Individuals
with Disabilities. Pueblo, CO: U.
S. Government Printing Office, Consumer
Information Center.
Books for children
Amenta,
C. Russell is Extra Special. New York:
Magination Press, 1992.
Gold,
P. Please Don't Say Hello. New York:
Human Sciences Press/Plenum Publications,
1986.
Katz,
I., and Ritvo, E. Joey and Sam. Northridge,
CA: Real Life Storybooks, 1993.
Books for teachers and other interested
professionals
Aarons,
M., and Gittens, T. The Handbook of
Autism. A Guide for Parents and Professionals.
New York: Tavistock/Routledge, 1992.
American
Psychiatric Association. Diagnostic
and Statistical Manual of Mental Disorders,
Fourth Edition. Washington, D.C.:
American Psychiatric Association,
1994.
Groden,
G., and Baron, M., eds. Autism: Strategies
for Change. New York: Gardner Press,
1988.
Simmons,
J. The Hidden Child. Rockville, MD:
Woodbine House, 1987.
Simpson,
R., and Zionts, P. Autism : Information
and Resources for Parents, Families,
and Professionals. Austin, TX: PRO-ED,
1992.
Smith,
M. Autism and Life in the Community:
Successful Interventions for Behavioral
Challenges. Baltimore: Paul H. Brookes
Publishing Co., 1990.
Smith,
M., Belcher, R., and Juhrs, P. A Guide
to Successful Employment for Individuals
with Autism. Baltimore: Paul H. Brookes
Publishing Co., 1995.
Autobiographies of people dealing
with autism
Barron,
J., and Barron, S. There's a Boy in
Here, New York: Simon and Schuster,
1992.
Grandin,
T. Thinking In Pictures and Other
Reports From My Life with Autism.
New York: Doubleday, 1995.
Grandin,
T. Emergence: Labeled Autistic. Novato,
CA: Arena Press, 1986.
Hart,
C. Without Reason: A Family Copes
with Two Generations of Autism. New
York: Harper & Row, 1989.
Maurice,
C. Let Me Hear Your Voice.: A Family's
Triumph over Autism. New York: Knopf,
1993.
Miedzianik,
D. I Hope Some Lass Will Want Me After
Reading All This. Nottingham England:
Nottingham University, 1986.
Park,
C. The Siege. New York: Harcourt,
Brace, World, 1967.
Williams,
D. Somebody Somewhere. New York: Times
Books, 1994.
Agencies and associations
American
Association of University Affiliated
Programs for Persons with Developmental
Disabilities (AAUAP)
8630 Fenton Street
Suite 410
Silver Spring, MD 20910
(301) 588-8252
Prepares professionals for careers
in the field of developmental disabilities.
Also provides technical assistance
and training, and disseminates information
to service providers to support the
independence, productivity, integration,
and inclusion into the community of
persons with developmental disabilities
and their families.
American Speech-Language-Hearing Association
10801 Rockville Pike
Rockville, MD 20852
(800) 638-8255
Provides information on speech, language,
and hearing disorders, as well as
referrals to certified speech-language
pathologists and audiologists.
The
Association of Persons with Severe
Handicaps (TASH)
29 West Susquehanna Avenue
Suite 210
Baltimore, MD 21204
(410) 828-8274
An advocacy group that works toward
school and community inclusion of
children and adults with disabilities.
Provides information and referrals
to services. Publishes a newsletter
and journal.
The
Autism National Committee
635 Ardmore Avenue
Ardmore, PA 19003
(610)649-9139
Publishes "The Communicator,"
provides referrals, and sponsors an
annual conference.
Autism
Research Institute
4182 Adams Ave.
San Diego, CA 92116
(619) 281-7165
Publishes the quarterly journal, Autism
Research Review International. Provides
up to date information on current
research.
Autism
Society of America, Inc.
7910 Woodmont Avenue
Suite 650
Bethesda, MD 20814
(301) 657-0881 or (800)-3-AUTISM
Provides a wide range of services
and information to families and educators.
Organizes a national conference. Publishes
The Advocate, with articles by parents
and autism experts. Local chapters
make referrals to regional programs
and services, and sponsor parent support
groups. Offers information on educating
children with autism, including a
bibliography of instructional materials
for and about children with special
needs.
The
Beach Center on Families and Disability
3111 Haworth Hall
University of Kansas
Lawrence, KA 66045
(913) 864-7600
Provides professional and emotional
support, as well as education and
training materials to families with
members who have disabilities. Collaborates
with professionals and policy makers
to influence national policy toward
people with developmental disabilities.
Council
for Exceptional Children
11920 Association Drive
Reston, VA 20191-1589
(703) 620-3660 or (800) 641-7824
Provides publications for educators.
Can also provide referral to ERIC
Clearinghouse for Handicapped and
Gifted Children.
Cure
Autism Now (CAN)
5225 Wilshire Boulevard
Suite 503
Los Angeles, CA 90036
(213) 549-0500
Serves as an information exchange
for families affected by autism. Founded
by parents dedicated to finding effective
biological treatments for autism.
Sponsors talks, conferences, and research.
Department
of Education
Office of Special Education Programs
330 C Street, SW
Mail Stop 2651
Washington, DC 20202
(202) 205-9058, (202) 205-8824
Federal agency providing information
on educational rights under the law,
as well as referrals to the Parent
Training Information Center and Protection
and Advocacy Agency in each state.
Division
TEACCH
Campus Box 7180
University of North Carolina
Chapel Hill, NC 27599-7180
(919) 966-2173
Publishes the Journal of Autism and
Developmental Disorders.
Also offers workshops for parents
and professionals.
Federation
of Families for Children's Mental
Health
1021 Prince Street
Alexandria, VA 22314
(703) 684-7710
Provides information, support, and
referrals through local chapters throughout
the country. This national parent-run
organization focuses on the needs
of families of children and youth
with emotional, behavioral, or mental
disorders.
Indiana
Resource Center on Autism
Institute for the Study of Developmental
Disabilities
Indiana University
2853 East Tenth Street
Bloomington, IN 47408-2601
(812) 855-6508
Offers publications, films and videocassettes
on a range of topics related to autism.
National
Alliance for Autism Research
414 Wall Street, Research Park
Princeton, NJ 08540
(888)-777-NAAR; (609) 430-9160
Dedicated to advancing biomedical
research into the causes, prevention,
and treatment of the autism spectrum
disorders. Sponsors research and conferences.
National
Information Center for Children and
Youth with Disabilities (NICHCY)
P.O. Box 1492
Washington, DC 20013-1492
(800) 695-0285
Publishes information for the public
and professionals in helping youth
become participating members of the
home and the community.
University
of California at Los Angeles (UCLA)
Department of Psychology
1282-A Franz Hall
P.O. Box 951563
Los Angeles, CA 90095-1563
(310) 825-2319
Provides information on Lovaas treatment
methods and behavior modification
approaches.
Other National Institutes of Health
agencies that sponsor research on
autism and related disorders
National Institute of Child Health
and Human Development
P.O. Box 29111
Washington, D.C. 20040
(301) 496-5133
National Institute on Deafness and
Other Communication Disorders
31 Center Drive
MSC 2320; Room 3C35
Bethesda, MD 20892
(800) 241-1044, (301) 496-7243
National Institute of Neurological
Disorders and Stroke
P.O. Box 5801
Bethesda, MD 20824
(800) 352-9424, (301) 496-5751
This
booklet was written by Sharyn Neuwirth,
M.Ed., an education writer and instructional
designer. An earlier draft was written
by Julius Segal, Ph.D.
Scientific
information and review was provided
by NIMH staff members Rebecca Del
Carmen, Ph.D., and Peter S. Jensen,
M.D. Also providing review and assistance
were Marie Bristol, Ph.D., National
Institute of Child Health and Human
Development; Temple Grandin, Ph.D.,
University of Arizona; Pat Juhrs,
Director of Community Services for
Autistic Adults and Children, Rockville,
MD; Catherine Lord, Ph.D., University
of Chicago; Gary Mesibov of Division
TEACCH, University of North Carolina;
Laura Schreibman, Ph.D., University
of California, San Diego; Giovanna
Spinella, M.D., National Institute
of Neurological Disorders and Stroke;
Luke Y. Tsai, M.D., University of
Michigan Medical Center; and Veronica
Zyst, Autism Society of America, Inc.
Editorial direction was provided by
Lynn J. Cave, NIMH.
With
grateful appreciation to the parents
who freely shared their personal stories,
practical suggestions, and spirit
of hope.
NIH
Publication No. 97-4023
Printed 1997
Updated:
June 01, 1999
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