Rett Syndrome (page 2)

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 Rett Syndrome. This page is part of a "suite" of pages on disorders along the autism spectrum. The suite includes:

• Autism
• Asperger Syndrome
• Rett Syndrome (you're here!)
• 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 Rett Syndrome.

Rett Syndrome v. Rett's Disorder v. Rett's Syndrome?

In the DSM-IV-TR, the manual used to diagnose mental conditions, "Rett's Disorder" is the term used for this disorder (American Psychiatric Association, 2000). However, it is also known as Rett or Rett's Syndrome, as you will see when you visit the various Web sites and read materials on this disability. Therefore, you will see all three 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!

Research on Rett Syndrome

The links we've listed below are specific to research on RS. (You may also find it helpful to know what research is being conducted on autism and what it's revealing. For that latter information, we refer you to our Connections page on autism.)

• IRSA connects you to research info on RS.
  www.rettsyndrome.org/main/toc-research.htm
  The International Rett Syndrome Association (IRSA) has lobbied for nearly $35 million in medical research and directly funded $2.33 million in scientific research solely on Rett syndrome. On IRSA's site, you can read all about important genetic discoveries and much more.
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• So does the Rett Syndrome Research Foundation (RSRF).
  www.rsrf.org/rsrf_funded_research/
  Since February of 2000 RSRF has awarded almost $5 million to a total of 51 projects and scientific meetings including the annual Rett Syndrome Symposium. Read all about what research is revealing about this disorder.
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• NICHD (the National Institute of Child Health and Human Development, at the National Institutes of Health).
  www.nichd.nih.gov/publications/pubs/autism/Rett/index.htm
  The beginning of this NICHD article on Rett's is: "In October 1999, scientists sponsored by the National Institute of Child Health and Human Development (NICHD) made a remarkable announcement—they discovered that a change in the sequence of a single gene can cause Rett syndrome..." While the article focuses more on describing Rett's than the research, it will connect you to NICHD's research initiatives, both on Rett's and on autism spectrum disorders in general.
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• 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.

Organizations That Can Help

As the primary organization specifically addressing RS, the International Rett Syndrome Association (IRSA) is a very important central source of information on the disorder. In addition to the wealth of material on their Web site, IRSA also offers the IRSAlert, an electronic newsletter bringing the Rett community the latest on research, family support, advocacy, and other newsworthy items. Here is all of IRSA's contact information:

International Rett Syndrome Association
9121 Piscataway Road
Clinton, MD 20735
1.800.818.RETT (7388)
301.856.3334
Fax: 301.856.3336
Email: irsa@rettsyndrome.org
Web: www.rettsyndrome.org

You'll also find the Rett Syndrome Research Foundation (RSRF) a source of valuable information. Among other things, they offer the RSRFNewsAlert, an electronic newsletter, which can be emailed to you about once a week with the latest research news, abstracts from new Rett publications, treatment and drug information, scientific meetings and fundraising events. Here are RSRF's particulars:

Rett Syndrome Research Foundation (RSRF)
4600 Devitt Drive
Cincinnati, Ohio 45246
Phone: 513.874.3020
Fax: 513.874.2520
Web: www.rsrf.org/index.html

Given the Rett Syndrome is considered one of the disorders along the autism spectrum, 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. For those groups, we refer you to: www.nichcy.org/resources/autism.asp#orgs

Teaching Students with Rett Syndrome

• Lots of education-related info and guidance on IRSA's site.
  www.rettsyndrome.org/main/toc-education.htm
  The International Rett Syndrome Association (IRSA) offers a lengthy table of contents on education issues that will take you to individual articles. Find out about inclusion, accessing the general education curriculum, finding the right school placement, testing methods, and scads of info on how to design an IEP for a student with Rett's.
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• 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.
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• 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.

Again, from the perspective that Rett Syndrome is a disorder on the autism spectrum, the following autism-related information may be useful to you.

• Educating Children with Autism and Pervasive Developmental Disorder.
  www.autismweb.com/education.htm
  Courtesy of Autism Web.
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• 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.
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• 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.

Spanish Materials

• El Sindrome de Rett, a fact sheet from NINDS,
  the National Institute of Neurological Disorders and Stroke.
  www.ninds.nih.gov/disorders/spanish/el_sindrome_de_rett.htm
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• Translate IRSA's site.
  www.rettsyndrome.org/
  On the top left menu of the International Rett Syndrome Association's Web site, you'll see a tab titled "Translate." Babel Fish is used to render the site into Spanish, 150 words at a time!
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• For low cost, you can buy The Rett Syndrome Handbook in Spanish.
  www.rettsyndrome.org/main/rett_syndrome_handbook.htm
  "The Rett Syndrome Handbook" is written by IRSA Founder and President Kathy Hunter and covers all areas of Rett Syndrome you can think of. It's available in Spanish. Find out more and order it online via the link above.
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• The Spanish version of "When your child is diagnosed with an autism spectrum disorder."
  www.iidc.indiana.edu/irca/fspanish.html
  "Cuando su nino/nina es diagnosticado con alguno de los desordenes en la gama del autismo" is the Spanish title of this publication from the Indiana Resource Center for Autism.
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• Looking at the genetics of autism (in Spanish), including Rett's.
  www.exploringautism.org/spanish/autism/evaluation.htm
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• Que es el Sindrome Rett?, from the Rett Syndrome Association of Argentina.
  www.rett.com.ar/sindrome_rett.htm
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• Sindrome de Rett: Revision y actualizacion de conceptos, from Venezuela.
  http://ceril.cl/P41_s_rett.htm

From Commercial Publishers

This is just a short list of what's out there, and as more emerge, we'll add 'em!

• IRSA isn't a commercial publisher, has incredible info for free, and also offers a variety of merchandise, videos, and books at low cost.
  http://www.rettsyndrome.org/main/toc-shop.htm
  In the IRSA shop, you can find out more about and buy, if you like, such items as: (1) videos (with titles such as Silent Angels; Rett Syndrome: A Closer Look; and Rett Syndrome: A Therapeutic Approach); (2) books (such as the Rett Syndrome Handbook; Understanding Rett Syndrome; and Nutrition Care Guidelines in Rett Syndrome); and (3) other useful materials, such as brochures, CDs, teeshirts, research reprints, and articles on key topics.
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• A source book for parents.
  www.amazon.com
  "The Official Parent's Sourcebook on Rett Syndrome: A Revised and Updated Directory for the Internet Age" was published by Icon Health Publications in 2002. Order online through amazon.com.
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• A medical dictionary, among other things.
  www.amazon.com
  In November 2003, Icon Health Publications also published "Rett Syndrome: A Medical Dictionary, Bibliography, and Research Guide to Internet References." Order online through amazon.com.