NICHCY Connections...
to Autism Resources

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:

• Autism (you're here!)
• Asperger Syndrome
• Rett Syndrome
• Childhood Disintegrative Disorder, and
• PDDNOS, Pervasive Developmental Disorder Not Otherwise Specified

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.

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!

• 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.
  
  
• Fact sheet on autism and autism spectrum disorders.
  http://ericec.org/digests/e583.html
  This ERIC digest provides an overview of autism and associated disorders, describes common behaviors, and discusses diagnosis and evaluation, prevalence, and approaches to intervention and educational support.
  
  
• 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 guide.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.

• Autism Society of America
  www.autism-society.org
  
  
• Indiana Resource Center for Autism
  www.iidc.indiana.edu/irca/fmain1.html
  
  
• Autism Information Center
  At the National Center on Birth Defects and Developmental Disabilities,
  Centers for Disease Control.
  www.cdc.gov/ncbddd/dd/ddautism.htm
  
  
• Exploring Autism.
  www.exploringautism.org/
  
  
• MAAP Services for Autism and Asperger Spectrum.
  www.maapservices.org/index.html
  
  
• Autism National Committee.
  www.autcom.org
  
  
• Autism Coalition, at:
  www.autismcoalition.com/index.asp
  
  
• Autism-PDD Resources Network, at:
  www.autism-pdd.net/
  
  
• Yale Developmental Disabilities Clinic.
  http://info.med.yale.edu/chldstdy/autism/
  The Yale Developmental Disabilities Clinic offers comprehensive, multidisciplinary evaluations for children with social disabilities, usually focusing on the issues of diagnosis and intervention.
  
  
• Division TEACCH.
  www.teacch.com/teacch.htm
  Division TEACCH stands for Treatment and Education of Autistic and Related Communication Handicapped Children. It's based at the University of North Carolina, Chapel Hill.
  
  
• National Early Childhood Technical Assistance Center's page of resources on autism spectrum disorders and young children.
  www.nectac.org/topics/autism/autism.asp
  
  
• Patient Centers: The Autism Center.
  www.patientcenters.com/autism/
  
  

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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.
  
  
• Teaching students with autism.
  http://ericec.org/digests/e582.html
  This digest from ERIC provides teachers with some general considerations of the instructional context, discusses communication and motivation issues, takes a brief look at instructional formats and positive behavior support, and closes with a discussion of age span considerations.
  
  
• 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
  
  
• Informacin 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 Asociacin 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 Nios Autistas: Gua 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 Nio 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 nio/nia es diagnosticado con alguno de los desrdenes 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 Asociacin 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 ("Artculos sobre autismo en espaol"). Some of the major titles you'll find in the list include:
  
  
  
  • Autismo: reconocer las seales en nios pequeos
    www.autismo.com/scripts/articulo/smuestra.idc?n=humphries
    
    
  • El autismo: entender la mente y componer las piezas
    www.autismo.com/scripts/articulo/smuestra.idc?n=happe
    
    
  • Preguntas ms frecuentes sobre autismo
    www.autismo.com/scripts/articulo/slistafaq.idc?
    
    
  • Discurso narrativo: pautas para la evaluacin y la intervencin
    www.autismo.com/scripts/articulo/smuestra.idc?n=mgortazar2
    
    
  • Bases de un programa de atencin temprana para trastornos del espectro autista
    www.autismo.com/scripts/articulo/smuestra.idc?n=mgortazar3
    
    
  • Apuntes sobre la prevalencia del espectro autista
    www.autismo.com/scripts/articulo/smuestra.idc?n=wingpotter
    
    
  • Autismo, sndrome de Asperger y trastorno semntico-pragmtico. Dnde estn los lmites?
    www.autismo.com/scripts/articulo/smuestra.idc?n=hfa2
    
    
  • Sndrome de Asperger, autismo de alto funcionamiento y trastornos del espectro autista
    www.autismo.com/scripts/articulo/smuestra.idc?n=smith1
    
    
  • Diferencia entre el autismo de alto funcionamiento y el sndrome de Asperger
    www.autismo.com/scripts/articulo/smuestra.idc?n=munro1
    
    
  • Despes del diagnstico: empezando a actuar
    www.autismo.com/scripts/articulo/smuestra.idc?n=despuesdiag
    
    
  • Estrategias para sobrevivir a la integracin de un nio autista en la escuela secundaria
    www.autismo.com/scripts/articulo/smuestra.idc?n=secundaria
    
    

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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.
  
  
• This mini-bib form ERIC will lead you to yet more books!
  http://ericec.org/minibibs/eb13.html
  This mini-bib from ERIC will connect you to 15 commercially available books on autism, 4 videos, and 4 children's books.
  
  

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