Intellectual disability

Common Name(s)

Intellectual disability, Intellectual developmental disorder, Mental retardation

Intellectual disability, formerly known as mental retardation, is a condition that is apparent before the age of 18 and consists of both below-average intellectual functioning and adaptive behavior. There are a number of causes of intellectual disability. Our understanding of the causes of intellectual disability focuses on the types of risk factors (biomedical, social, behavioral, and educational) and the timing of exposure (before, during, or after birth) to those factors.

Intellectual disability is often diagnosed during early childhood or the early school years. To make a diagnosis of intellectual disability, a psychologist or physician will use measures of intellectual functioning (mental capacity for learning, reasoning, problem solving, and so on, often known as an “IQ test”) and adaptive behavior, including skills related to using concepts (such as language, money, or time), social skills, and those practical skills needed to take care of one’s self.

There are many sources of information and support for people with intellectual disability and their families.

Source: American Association on Intellectual and Developmental Disabilities

Source: Advocacy organizations associated with the condition.

 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Intellectual disability" for support, advocacy or research.

Mowat Wilson Support

We are a support group and website where families can share information about Mowat-Wilson Syndrome. Our website includes support group information, a forum, photos and profiles of children with MWS and parent survey pages. We want to help inform the public about this rare condition and to help those affected by it not feel so alone by giving them a place to exchange information and experiences with others in the same situation.

Last Updated: 6 Mar 2014

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Pediatric Brain Foundation

Pediatric Brain Foundation's Mission is Three-fold: 1. Expedite scientific research to find treatments and cures for ALL of the more than 14 million children, in the U.S. alone, living with some form of neurological disorder 2. Provide families and health care professionals with up-to-date information and resources on the latest discoveries in pediatric neurology 3. Educate the public and public officials on the critical importance of funding pediatric neurological research

Last Updated: 22 Apr 2015

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Simons VIP Connect

The Simons Variation in Individuals Project (Simons VIP) is an online community and research initiative. We provide a platform to partner families and researchers to better understand over 40 genetic changes (genomic variants) associated with features related to autism and developmental delay.

Last Updated: 22 Apr 2015

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VOR-Speaking up for people with intellectual & developmental disabilities

VOR is a national organization advocating for high quality care and human rights for all people with intellectual and developmental disabilities.

Last Updated: 29 Apr 2014

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General Support Organizations

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How do you compare to others with this condition?

Privately answer questions about your health. Let resources, you select, come to you.

Anonymously share and see how your answers compare with others with this condition while privately providing key pieces of information to medical researchers, disease advocacy groups, and others ONLY YOU select to help speed up cures and better alternatives.

 
 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Intellectual disability" for support, advocacy or research.

Mowat Wilson Support

We are a support group and website where families can share information about Mowat-Wilson Syndrome. Our website includes support group information, a forum, photos and profiles of children with MWS and parent survey pages. We want to help inform the public about this rare condition and to help those affected by it not feel so alone by giving them a place to exchange information and experiences with others in the same situation.

http://www.mowatwilson.org

Last Updated: 6 Mar 2014

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Pediatric Brain Foundation

Pediatric Brain Foundation's Mission is Three-fold: 1. Expedite scientific research to find treatments and cures for ALL of the more than 14 million children, in the U.S. alone, living with some form of neurological disorder 2. Provide families and health care professionals with up-to-date information and resources on the latest discoveries in pediatric neurology 3. Educate the public and public officials on the critical importance of funding pediatric neurological research

http://www.pediatricbrainfoundation.org

Last Updated: 22 Apr 2015

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Simons VIP Connect

The Simons Variation in Individuals Project (Simons VIP) is an online community and research initiative. We provide a platform to partner families and researchers to better understand over 40 genetic changes (genomic variants) associated with features related to autism and developmental delay.

http://www.simonsvipconnect.org

Last Updated: 22 Apr 2015

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VOR-Speaking up for people with intellectual & developmental disabilities

VOR is a national organization advocating for high quality care and human rights for all people with intellectual and developmental disabilities.

http://www.vor.net

Last Updated: 29 Apr 2014

View Details

 

General Support Organizations

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General Resources

Toolkit for Families

Advocacy resources for individuals with intellectual and developmental disabilities, including autism, and their families, guardians and advocates. Resources relate to residential choice, federal laws, cost comparisons, quality of care and more.

Updated 29 Apr 2014

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Toolkit for Legislators, Policymakers, and Officials

Advocacy resources for legislators and policymakers re: to developmental disabilities, including autism, Resources relate to residential choice, federal laws, cost comparisons, quality of care and more.

Updated 29 Apr 2014

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VOR Press Kit

VOR's 2014 Press Kit, a collection of written materials designed to introduce VOR to the media and others, is now available. For more information, please contact Julie Huso, Executive Director at jhuso@vor.net.

Updated 29 Apr 2014

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Olmstead Resources

The Supreme Court, in its landmark Olmstead v. L.C.n decision, recognized the need for a range of services, based on individual choice and need, which respond to the varied and unique needs of the entire disability community.

Updated 29 Apr 2014

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Learn About VOR

VOR's Mission, Policy and Positions, and more. Learn more about the only national non-profit organization advocating for high quality care and human rights based on individual choice and need.

Updated 29 Apr 2014

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Scientific Literature

Articles from the PubMed Database

Research articles describe the outcome of a single study. They are the published results of original research.
The terms "Intellectual disability" returned 272 free, full-text research articles on human participants. First 3 results:

Medically necessary sterilization of a minor with intellectual disability: a case report and historical perspective.
 

Author(s): Nathaniel A Sowa, Donald L Rosenstein

Journal: N C Med J. ;76(1):59-63.

 

Medical necessity may lead to secondary sterilization of individuals with intellectual disabilities, but legal statutes mandate that certain procedures be followed in these cases. In this article, we present a case of medically necessary sterilization of an individual with intellectual ...

Last Updated: 27 Jan 2015

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Mutations in SNX14 cause a distinctive autosomal-recessive cerebellar ataxia and intellectual disability syndrome.
 

Author(s): Anna C Thomas, Hywel Williams, Núria Setó-Salvia, Chiara Bacchelli, Dagan Jenkins, Mary O'Sullivan, Konstantinos Mengrelis, Miho Ishida, Louise Ocaka, Estelle Chanudet, Chela James, Francesco Lescai, Glenn Anderson, Deborah Morrogh, Mina Ryten, Andrew J Duncan, Yun Jin Pai, Jorge M Saraiva, Fabiana Ramos, Bernadette Farren, Dawn Saunders, Bertrand Vernay, Paul Gissen, Anna Straatmaan-Iwanowska, Frank Baas, Nicholas W Wood, Joshua Hersheson, Henry Houlden, Jane Hurst, Richard Scott, Maria Bitner-Glindzicz, Gudrun E Moore, Sérgio B Sousa, Philip Stanier

Journal: Am. J. Hum. Genet.. 2014 Nov;95(5):611-21.

 

Intellectual disability and cerebellar atrophy occur together in a large number of genetic conditions and are frequently associated with microcephaly and/or epilepsy. Here we report the identification of causal mutations in Sorting Nexin 14 (SNX14) found in seven affected individuals ...

Last Updated: 2 Dec 2014

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A peroxisomal disorder of severe intellectual disability, epilepsy, and cataracts due to fatty acyl-CoA reductase 1 deficiency.
 

Author(s): Rebecca Buchert, Hasan Tawamie, Christopher Smith, Steffen Uebe, A Micheil Innes, Bassam Al Hallak, Arif B Ekici, Heinrich Sticht, Bernd Schwarze, Ryan E Lamont, Jillian S Parboosingh, Francois P Bernier, Rami Abou Jamra

Journal: Am. J. Hum. Genet.. 2014 Nov;95(5):602-10.

 

Rhizomelic chondrodysplasia punctata (RCDP) is a group of disorders with overlapping clinical features including rhizomelia, chondrodysplasia punctata, coronal clefts, cervical dysplasia, congenital cataracts, profound postnatal growth retardation, severe intellectual disability, ...

Last Updated: 2 Dec 2014

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Reviews from the PubMed Database

Review articles summarize what is currently known about a disease. They discuss research previously published by others.
The terms "Intellectual disability" returned 42 free, full-text review articles on human participants. First 3 results:

A telemonitoring tool based on serious games addressing money management skills for people with intellectual disability.
 

Author(s): Asier Lopez-Basterretxea, Amaia Mendez-Zorrilla, Begonya Garcia-Zapirain

Journal:

 

This article presents a telemonitoring tool based on computer games, aimed at money management skill improvement for people with Intellectual Disabilities (ID). The presented tool is divided into two parts: on one hand, some training activities related to payments and currency discrimination ...

Last Updated: 27 Feb 2014

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Non-specialist psychosocial interventions for children and adolescents with intellectual disability or lower-functioning autism spectrum disorders: a systematic review.
 

Author(s): Brian Reichow, Chiara Servili, M Taghi Yasamy, Corrado Barbui, Shekhar Saxena

Journal: PLoS Med.. 2013 Dec;10(12):e1001572; discussion e1001572.

 

The development of effective treatments for use by non-specialists is listed among the top research priorities for improving the lives of people with mental illness worldwide. The purpose of this review is to appraise which interventions for children with intellectual disabilities ...

Last Updated: 20 Dec 2013

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Malformations among the X-linked intellectual disability syndromes.
 

Author(s): Roger E Stevenson, Charles E Schwartz, R Curtis Rogers

Journal: Am. J. Med. Genet. A. 2013 Nov;161A(11):2741-9.

 

Malformations are significant contributions to childhood mortality and disability. Their co-occurrence with intellectual disability may compound the health burden, requiring additional evaluation and management measures. Overall, malformations of greater or lesser severity occur in ...

Last Updated: 29 Oct 2013

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Symptoms, Diagnosis, and Treatment

There are currently no related results available in GeneReviews.

There are currently no related results available in Genetic Testing Registry.

 
 
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Clinical Trial Information This information is provided by ClinicalTrials.gov

Pivotal Response Treatment for Individuals With Intellectual Disabilities
 

Status: Recruiting

Condition Summary: Intellectual Disabilities; Speech Delay; Language Disorder

 

Last Updated: 19 Nov 2013

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Apparently Balanced Chromosomal Translocation/ Next-generation Sequencing/ Intellectual Disability
 

Status: Recruiting

Condition Summary: Intellectual Disability; Congenital Abnormalities

 

Last Updated: 19 May 2015

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Last Updated: 16 Jan 2015

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