A Web resource page of the National Dissemination
Center for Children with Disabilities
NICHCY Connections...
to Autism Resources
Launched April 1, 2004
Approx. 11 pages when printed
NICHCY's Connections pages are designed to put you in quick contact
with information that's readily available on the Internet. We're pleased to
offer this particular resource page to connect you with sources of information
about children and youth with autism. This page is part of a "suite"
of pages on disorders along the autism spectrum. The suite includes:
Why a Suite of Different Pages?
Why are we designing these resources pages as part of a suite? How and why
are they connected to one other? The answer lies in the Diagnostic and Statistical
Manual of Mental Disorders (DSM). The DSM is the guide typically used by
physicians and mental health professionals to diagnose the five disorders listed
above. Published by the American Psychiatric Association, the latest edition
of the DSM came out in 2000 and is known as the DSM-IV-TR (meaning the fourth
edition, text revision). It lists the symptoms associated with each of the five
disorders. Most importantly, it also groups all five disorders under the
"umbrella" category of Pervasive Developmental Disorders, or PDD.
Why? Because these disorders share in common the following characteristics:
impairments in social interaction, imaginative activity, verbal and nonverbal
communication skills, and a limited number of interests and activities that
tend to be repetitive.
The Umbrella Category: PDD
The term Pervasive Developmental Disorders was first used in the 1980s
to describe a class of disorders with similar symptoms or characteristics. The
term occasionally causes some confusion, because one of the disorders underneath
the umbrella has a very similar name---PDDNOS (Pervasive Developmental Disorder
Not Otherwise Specified). As a result, PDD and PDDNOS are sometimes used interchangeably.
A doctor, for example, may tell a parent that his or her child has PDD. This
may stir up confusion further down the diagnostic and treatment road, because
PDD actually refers to the overall category of disorders. It's not a
diagnostic label. Some doctors, however, are hesitant to diagnose very young
children with a specific type of PDD, such as Autistic Disorder or Asperger's
Syndrome, and therefore only use the general category label of PDD. In other
cases, the doctor may say PDD as a shorter way of talking about PDDNOS.
To avoid this confusion, our suite of pages will use the term PDD to refer
to the overall category of Pervasive Developmental Disorders and the term PDDNOS
to refer to the specific disorder, Pervasive Developmental Disorder Not Otherwise
Specified.
This particular page connects you with resources on Autistic Disorder.
Autism v. Autistic Disorder?
In the DSM-IV-TR, the manual used to diagnose mental conditions, "Autistic
Disorder" is the term used for this disability (American Psychiatric
Association, 2000). However, it is also commonly called autism, as you will
see when you visit the various Web sites and read materials on this disability.
Therefore, you will see both terms used throughout the remainder of this resource
page.
The resources we've listed aren't intended to be
exhaustive of those available. We'll be adding to this page throughout the year,
so you may wish to check back every now and again to see what's new!
What is Autism?
- The plain diagnostic criteria for autism.
www.iidc.indiana.edu/irca/generalinfo/diagnost.html
Without explanation or elaboration, here's the criteria for autism from the
DSM-IV-TR.
- Want a quick overview?
www.nichcy.org/pubs/factshe/fs1txt.htm
Read NICHCY's 4-page fact sheet on autism and PDDNOS.
- Contrast the DSM criteria for autism with the other PDD disorders.
www.nichcy.org/pubs/factshe/fs20txt.htm
We offer a briefing paper on PDD that includes an overview to the umbrella
category under which mental health professionals have placed autistic disorder.
This includes the DSM criteria that are used to diagnose the disorder. You
may also find it helpful to see these criteria contrasted with those used
to diagnose the four other disorders under the PDD umbrella.
- Dive in deep at the Autism Society of America.
www.autism-society.org
ASA is one national organization focusing upon autism. Here, you can read
all about this disability, including characteristics, diagnosis, treatment
and education, and living with autism. You can also find state and local chapters
who can help you in your neck of the woods.
- All about autism, Asperger Syndrome, and related developmental disorders.
www.maapservices.org/MAAP_Sub_Find_It_-_About_Autism_Aspergers.htm
Read all about it at MAAP Services for the Autism and Asperger Syndrome, a
nonprofit organization providing information and advice to families of More
advanced individuals with Autism, Asperger's syndrome,
and Pervasive developmental disorder (PDD).
- Here's another "read all about it" site full of info.
www.autismweb.com/
Billed as "a parents' guide to the diagnosis, treatment and education
of children with autism, Pervasive Developmental Disorder ( PDD ) and related
disorders," AutismWeb branches into separate areas about the definitions
of each autism spectrum disorder, warning signs, education, diet, recommended
readings, news, conferences, and how to find resources within your community.
- What are the warning signs for autism? Visit First Signs.
www.firstsigns.org/index.html
First Signs, Inc. is a national non-profit organization dedicated to educating
parents and physicians about the early warning signs of autism and other developmental
disorders.
- Want to know more about the DSM-VI-TR, and how it was compiled?
www.appi.org/dsm.cfx
Visit the American Psychiatric Association's DSM-IV-TR Library, located at
the link above.
- The diagnostic merry-go-round.
www.patientcenters.com/autism/news/diagnostic.html
Patient Centers offers guides on many different disorders and diseases, including
autism. This particular article is taken from Chapter 2 of the book Autistic
Spectrum Disorders: Understanding the Diagnosis & Getting Help by
Mitzi Waltz.
- Getting a diagnosis: Starting with a pediatrician.
www.patientcenters.com/autism/news/getting_diag.html
From the same source as the item above, this is Chapter 3 of the book Autistic
Spectrum Disorders: Understanding the Diagnosis & Getting Help by
Mitzi Waltz.
- Tips for daily family life.
www.patientcenters.com/autism/news/tips_life.html
And here is Chapter 10! The tips are organized around: haircuts, toenail and fingernail clipping/cleaning, bathing, clothing, decorating for autism, childproofing dangerous items, and safety precautions.
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Research on Autism
You may find it helpful to know what research is being conducted on autism
and what it's revealing. Check out these resources:
- What does the National Institute of Neurological Disorders and Stroke
have to say about autism?
www.ninds.nih.gov/disorders/autism/autism.htm
The link above will lead you to NINDS' autism page, where you can read a brief
overview of the disability, find links to helpful organizations, and connect
with research studies being conducted by NINDS, including ones seeking participants.
The goals of these studies are to increase understanding of disease mechanisms
and to find ways to treat, prevent, and ultimately cure the disorder.
- NICHD (the National Institute of Child Health and Human Development, at
the National Institutes of Health), at: www.nichd.nih.gov/publications/pubskey.cfm
This link takes you to a page where you can search NICHD publications by subject
or keyword. They've kindly provided a drop-down menu you can use to select
autism, autism research, or autism spectrum disorders.
- National Institute of Mental Health (NIMH)'s Autism page, at: www.nimh.nih.gov/publicat/autism.cfm
From this page you can access detailed information about recently published
and ongoing research on autism funded by NIMH, the Interagency Autism Coordinating
Committee, the NIH Autism Listserv which distributes current news about autism
research and autism-related activities from NIH, clinical trials and research
studies, information for researchers, and other resources.
- National Alliance for Autism Research (NAAR), at:
www.naar.org/naar.asp
- Cure Autism Now (CAN), at:
www.cureautismnow.org/
- Child Development Institute, at:
www.childdevelopmentinfo.com/disorders/
current_research_on_autism.shtml
- Association for Science in Autism Treatment (ASAT), at:
www.asatonline.org/index.html
- Organization for Autism Research (OAR), at:
www.researchautism.org
- For parents looking for research on autism.
www.researchautism.org/uploads/parents%20guide.pdf
OAR, the organization listed directly above, offers a guide, entitled Life
Journey Through Autism: A Parent's Guide to Research, to help parents become
"savvy" about finding and consuming information on autism, with special emphasis
upon examining the research. Sources of this information are presented. The
science model is then explained, along with a framework for evaluating research
studies and the current state of autism research.
- Autism research at the Yale Child Study Center.
http://info.med.yale.edu/chldstdy/autism/research.html
Visit the Center to find out what research they're conducting on autism.
- Check out Tony Attwood's research list.
www.tonyattwood.com.au/
Tony Attwood is well-known in the autism field and offers several commercially
available books on the subject (available through amazon.com).
His Web site offers "Recent Research Links" on the main menu.
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Organizations That Can Help
The organizations that offer the above publications are the same ones that
offer a wide range of other information, assistance, and services. But, to make
life a little easier, here's a quick, consolidated list.
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Educating Students with Autism
- An overview of educational issues.
www.autism-society.org/site/PageServer?pagename=EducationOverview
This quick look at education for students with autism will get you started.
- The importance of the IEP.
www.autism-society.org/site/PageServer?pagename=IEP
The Individualized Education Program (IEP) is a written document that outlines
a child's education. For students with autism, it's a cornerstone of the educational
services they will receive and needs to be carefully planned. Parents and
teachers alike will find this article on the IEP helpful.
- If you want to know about more about special education, IEPs, and educational
rights under the law, be sure to take a look at NICHCY's materials.
www.nichcy.org
All our publications are available for free on our Web site. You can also
call us at 1.800.695.0285 for copies or to talk over personal questions and
concerns.
- Tips for Teaching High-Functioning People with Autism.
www.maapservices.org/MAAP_Sub_Find_It_-_Tips_For_Teaching.htm
Courtesy of MAAP Services for the Autism and Asperger Syndrome.
- Educating Children with Autism and Pervasive Developmental Disorder.
www.autismweb.com/education.htm
Courtesy of Autism Web.
- Educating Children with Autism.
www.nap.edu/catalog/10017.html
The Committee on Educational Inverventions for Children with Autism, National
Research Council, offers Educating Students with Autism, which examines
the scientific knowledge underlying educational practices, programs, and strategies
for children with this disability.
Read the book online, order online, or call 1.888.624.8373.
- What's the research say about pivotal response training (PRT) for young
children with autism?
www.evidencebasedpractices.org/bridges/bridges_vol2_no4.pdf
This research synthesis focused on the effectiveness of Pivotal Response Training
(PRT) as a behavioral intervention for young children with disabilities.
- A special resource: The Professional Development in Autism Center (PDA).
http://depts.washington.edu/pdacent/
The Professional Development in Autism Center (PDA) provides 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 his or her local school district. Visit online or call 206.543.4011.
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Spanish Materials
- El Autismo, NICHCY's autism factsheet.
www.nichcy.org/pubs/spanish/fs1stxt.htm
- Información general sobre el autismo.
www.autism-society.org/site/PageServer
This description is courtesy of the Autism Society of America.
- Try AutismOnline.
www.autismonline.org
AutismOnline connects the parents of newly diagnosed children with autism
and professionals working with these children with critical resources, support,
and research information in their own language. Find resources in Spanish
at: www.autismonline.org/bookspan.htm
- Visit Asociación Nuevo Horizonte.
www.autismo.com
Find information on autism in English and Spanish, videos, books, links to
other organizations, statistics and a chat!
- Visit the Indiana Resource Center for Autism (IRCA).
www.iidc.indiana.edu/irca
The IRCA offers a wide range of materials in English on autism and related
disorders. A substantial overview is available in Spanish at: www.iidc.indiana.edu/irca/fspanish.html
- NINDS is the National Institute on Neurological Disorders and Stroke.
www.ninds.nih.gov/disorders/spanish/autismo.htm
NINDS offers an extensive fact sheet on autism in Spanish.
- From the commercial publisher, Woodbine House.
www.woodbinehouse.com
Woodbine House offers Niños Autistas: Guía para Padres, Terapeutas
y Educadores, a book looking at how autism can affect the first six years
of a child's life. Contact Woodbine House via the Web site address above,
or through their toll-free number: 1.800.843.7323.
- Medical info in Spanish about autism.
www.nlm.nih.gov/medlineplus/spanish/ency/article/001526.htm
From the Medical Library of the United States, courtesy of Medline Plus in
Spanish, "Autismo" briefly discusses, from a medical perspective,
the definition of autism and its characteristics, alternate names, diagnostic
exams, treatment, prognosis, and prevention.
- The child with autism, in Spanish.
www.aacap.org/publications/apntsfam/autistic.htm
This fact sheet, called El Niño Autista, appears online courtesy
of the American Academy of Child and Adolescent Psychiatry.
- The Spanish version of "When your child is diagnosed with an autism spectrum
disorder."
www.iidc.indiana.edu/irca/fspanish.html
"Cuando su niño/niña es diagnosticado con alguno de los
desórdenes en la gama del autismo" is the Spanish title of this
publication from the Indiana Resource Center for Autism.
- Looking at the genetics of autism (in Spanish).
www.exploringautism.org/spanish/
- A treasure chest of Spanish materials on autism.
www.autismo.com/scripts/articulo/slistaesp.idc?
Visit Asociación Nuevo Horizonte and find piles of information in Spanish
on the disorders under the umbrella of PDD. The link above takes you to a
list of articles on autism in Spanish ("Artículos sobre autismo
en español"). Some of the major titles you'll find in the list
include:
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From Commercial Publishers
This is just a short list of what's out there, and as more emerge, we'll
add 'em!
- Autism-Asperger's Digest.
www.autismdigest.com/
Featuring original articles and material from sources around the world, each
52-page issue of this magazine covers the latest people, products, research,
news, and viewpoints emerging in the autism field. Available from Future Horizons.
Order online or call 1.800.489.0727.
- Parent Guide, as part of an Autism series.
www.woodbinehouse.com/
A large part of the Special Needs series at Woodbine House focuses upon autism.
This includes "Children with Autism: A Parent's Guide," "Healthcare
for Children on the Autism Spectrum," and much, much more. Order online
or call 1.800.843.7323.
- Another pile of autism books.
www.jkp.com/
Jessica Kingsley Publishers offers a very long list of books related to autism---both
for families and for teachers. Find out more and order online or via JKP's
distributor in the United States, Special Sales Department, Taylor & Francis
/ Routledge Books, Inc, at 1.800.797.3803, ext. 7856.
- A wide range of materials on autism.
www.asperger.net/index.htm
The mission of the Autism Asperger Publishing Company (AAPC) is to "be
your first source for practical solutions related to autism, Asperger Syndrome,
and other pervasive developmental disorders." Browse the collection of
theirs and other people's books online at the link above, or call 1.913.897.1004.
- Still more materials from a specialist in autism, Asperger Syndrome,
and PDD.
www.futurehorizons-autism.com/
Future Horizons claims to have become a leading publisher in the world in
autism and AS primarily because the publisher's son, Alex, was diagnosed with
autism. Browse and order online, or call 1.800.489.0727.
- Try the Council for Exceptional Children's collection.
www.cec.sped.org/bk/catalog2/autism.html
You'll find books, teaching materials, and videos related to autism. Order
online or call 1.888.232.7733.
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| This
information is copyright free.
Readers are encouraged to copy and share it, but please credit the National
Dissemination Center for Children with Disabilities (NICHCY). |
NICHCY Connections pages are
published in response to questions from individuals and organizations
that contact us. We encourage you to share
your ideas and feedback with us!
Project Director:
Suzanne Ripley
Research Specialists: Sarah Escowitz & Yojanna Cuenca, NICHCY
Author/Editor: Lisa Küpper, NICHCY
NICHCY thanks our Project Officer, Dr. Peggy Cvach, at the Office of Special
Education Programs (OSEP), U.S. Department of Education. |
| Publication
of this Web resource page is made possible through Cooperative Agreement
#H326N030003 between the Academy for Educational Development and the Office
of Special Education Programs of the U.S. Department of Education. The
contents of this document do not necessarily reflect the views or policies
of the Department of Education, nor does mention of trade names, commercial
products, or organizations imply endorsement by the U.S. Government. |
NICHCY
P.O. Box 1492
Washington, DC 20013
(800) 695-0285
· v/tty
(202) 884-8441 · fax
nichcy@aed.org
www.nichcy.org |