Table of Contents
What is This Disorder?
Research on CDD
Organizations That Can Help
Teaching Students with CDD
Spanish Materials

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 Childhood Disintegrative Disorder. 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 Childhood Disintegrative 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!

What is Childhood Disintegrative Disorder?

  • Contrast DSM criteria for CDD with the other PDD disorders.
    www.nichcy.org/pubs/factshe/fs20txt.htm
    NICHCY offers a briefing paper on PDD that includes an overview to the umbrella category under which mental health professionals have placed Childhood Disintegrative 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.
  • A description of CDD.
    http://info.med.yale.edu/chldstdy/autism/cdd.html
    The Yale Developmental Disabilities Clinic offers comprehensive, multidisciplinary evaluations for children with social disabilities, usually focusing on the issues of diagnosis and intervention. The above article includes a description of CDD, its clinical features and diagnosis, history, its course and prognosis, its etiology, and a case illustration.
  • From the medical encyclopedia at Medline Plus.
    www.nlm.nih.gov/medlineplus/ency/article/001535.htm
    Read Medline's description of CDD, including definition, causes, risk factors, symptoms, signs and tests, treatment, prognosis, and complications. Medline is a service of the National Library of Medicine.
  • A brief description of CDD and a comparison of DSM criteria with other criteria used internationally.
    www.mental-health-matters.com/disorders/index.php
    This site provides information and connection on all sorts of mental health matters. From the link above, the "disorders" page, you can scroll down to Childhood Disintegrative Disorder and see what they have to offer. One interesting link takes you to the ICD-10 criteria for diagnosing mental disorders (ICD-10 Classification of Mental and Behavioural Disorders
    World Health Organization, Geneva, 1992).
  • 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.

Research on Childhood Disintegrative Disorder

We were unable to identify research being conducted that focuses specifically or exclusively upon childhood disintegrative disorder. We've listed only a few resources below that you may find useful when investigating research on the disorder. However, because CDD is under the umbrella of PDD, as is autism, you may find it helpful to know what research is being conducted on the autism spectrum and what it's revealing.

  • Want to know how to evaluate research studies?
    www.researchautism.org/uploads/parents%20guide.pdf
    OAR, the Organization for Autism Research, 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.

And since so little is actually written about CDD exclusively, we thought you'd want to know about these publications in professional journals.

  • Ask the Editor: What is childhood disintegrative disorder, how is it different from autism, and what is believed to be its cause? (2000, April). Journal of Autism and Developmental Disorders, 30(2), 177-177. (Abstracts of journal articles are available online at: www.springerlink.com. Select "Browse Publications A-Z," go to J and scroll through the J's until you come to Journal of Autism and Developmental Disorders. There are two listings. You want the first, which is the Historical Archive of the journal when it was published by Kluwer Publishers.)
  • Malhotra, S., & Gupta, N.. (1999). Childhood disintegrative disorder. Journal of Autism and Developmental Disorders, 29(6), 491-498. (Abstracts of journal articles are available online at: www.springerlink.com. Select "Browse Publications A-Z," go to J and scroll through the J's until you come to Journal of Autism and Developmental Disorders. There are two listings. You want the first, which is the Historical Archive of the journal when it was published by Kluwer Publishers.)
  • Volkmar, F.R. (1992). Childhood disintegrative disorder: Issues for DSM-IV. Journal of Autism and Developmental Disorders, 22, 625-642. (Abstracts of journal articles are available online at: www.springerlink.com. Select "Browse Publications A-Z," go to J and scroll through the J's until you come to Journal of Autism and Developmental Disorders. There are two listings. You want the first, which is the Historical Archive of the journal when it was published by Kluwer Publishers.)
  • Volkmar, F.R., & Rutter, M. (1995). Childhood disintegrative disorder: Results of the DSM-IV autism field trial. Journal of the American Academy of Child and Adolescent Psychiatry, 34(8), 1092-1095. (Abstracts of JAACAP articles are available online at: www.jaacap.com. At the main menu, click on "Archive." Scroll down to Volume 34, in 1995. You want the August 1995 issue, where you'll scroll through titles until you get to this one. Click on Abstract to the right.)
  • Zwaigenbaum, L. (2000, April). Case report: High functioning autism and childhood disintegrative disorder in half brothers. Journal of Autism and Developmental Disorders, 30(2), 121-126. (Abstracts of journal articles are available online at: www.springerlink.com. Select "Browse Publications A-Z," go to J and scroll through the J's until you come to Journal of Autism and Developmental Disorders. There are two listings. You want the first, which is the Historical Archive of the journal when it was published by Kluwer Publishers.)

Organizations That Can Help

Given the CDD is one of the disorders along the autism spectrum, with symptoms quite similar to autism itself, you may also find useful information, assistance, and connection to local resources at any or all of the autism-related organizations we've listed in our companion Connections page on autism.

In searching for information on CDD, which is extremely difficult to find and almost always closely tied to information on autism, we ran across a "Global Health Network Support Group" at yahoo.com. We pass this info along to you, in case you might find it helpful, but we know nothing more about it. Find out more about the group at: http://groups.yahoo.com/group/Childhood_Disintegrative_Disorder/

Teaching Students with CDDAs was said above, it's very difficult to locate information specific to CDD, let alone materials about educating students with this rare disorder. Since CDD is one of the disorders along the autism spectrum, with symptoms quite similar to autism itself, appropriate educational interventions will be those similar to what's used when educating students with autism.

Spanish Materials

  • Trastorno Desintegrativo de la Niñez.
    http://www.autismo.com/scripts/articulo/smuestra.idc?n=nichcy
    This is a translation of NICHCY's briefing paper on PDD. Scroll down and find the description of childhood disintegration disorder and the DSM-IV criteria for it. The rest of the paper will be helpful as well, as the treatments for CDD and PDD are similar.
  • 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.