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: 20 Jul 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: 20 Jul 2015

View Details
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 600 free, full-text research articles on human participants. First 3 results:

Responsiveness of people with moderate and significant intellectual disability to physical stimulation.
 

Author(s): Marzena Ślężyńska, Grzegorz Mięsok, Kamila Mięsok

Journal: Ann Agric Environ Med. 2018 Mar;25(1):13-22.

 

The aim of the research was to verify whether intellectually disabled people are responsive to motor stimulation, and whether the specific physical exercises, besides traditional rehabilitation and occupational therapy, would result in physical fitness enhancement.

Last Updated: 31 Dec 1969

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[Impact of moderate intellectual disability on the dynamics and quality of family life: a qualitative clinical study].
 

Author(s): Rodrigo Victor Viana Tomaz, Vanessa de Arruda Santos, Lucimar Retto da Silva de Avó, Carla Maria Ramos Germano, Débora Gusmão Melo

Journal:

 

This qualitative clinical study investigated the impact of moderate intellectual disability on family dynamics and quality of life. The data were collected using individual interviews with 15 mothers of children with intellectual disabilities, as a convenience sample, and examined ...

Last Updated: 31 Dec 1969

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De novo variants in are associated with hypotonia, developmental delay, intellectual disability, and autism.
 

Author(s): Akemi J Tanaka, Megan T Cho, Rebecca Willaert, Kyle Retterer, Yuri A Zarate, Katie Bosanko, Vikki Stefans, Kimihiko Oishi, Amy Williamson, Golder N Wilson, Alice Basinger, Tina Barbaro-Dieber, Lucia Ortega, Susanna Sorrentino, Melissa K Gabriel, Ilse J Anderson, Maria J Guillen Sacoto, Rhonda E Schnur, Wendy K Chung

Journal:

 

Using whole-exome sequencing, we identified seven unrelated individuals with global developmental delay, hypotonia, dysmorphic facial features, and an increased frequency of short stature, ataxia, and autism with de novo heterozygous frameshift, nonsense, splice, and missense variants ...

Last Updated: 31 Dec 1969

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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 63 free, full-text review articles on human participants. First 3 results:

Epigenetic Etiology of Intellectual Disability.
 

Author(s): Shigeki Iwase, Nathalie G Bérubé, Zhaolan Zhou, Nael Nadif Kasri, Elena Battaglioli, Marilyn Scandaglia, Angel Barco

Journal: J. Neurosci.. 2017 Nov;37(45):10773-10782.

 

Intellectual disability (ID) is a prevailing neurodevelopmental condition associated with impaired cognitive and adaptive behaviors. Many chromatin-modifying enzymes and other epigenetic regulators have been genetically associated with ID disorders (IDDs). Here we review how alterations ...

Last Updated: 31 Dec 1969

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Molecular genetic characterization of a prenatally detected 1.484-Mb Xq13.3-q21.1 duplication encompassing ATRX and a literature review of syndromic intellectual disability and congenital abnormalities in males with a duplication at Xq13.3-q21.1.
 

Author(s): Chih-Ping Chen, Hoi-Kin Yip, Liang-Kai Wang, Schu-Rern Chern, Shin-Wen Chen, Shih-Ting Lai, Peih-Shan Wu, Wayseen Wang

Journal: Taiwan J Obstet Gynecol. 2017 Jun;56(3):385-389.

 

We present prenatal diagnosis of dup(X)(q13.3q21.1) in a male fetus and molecular genetic analysis in three generations and a literature review of syndromic intellectual disability and congenital abnormalities in males with a duplication at Xq13.3-q21.1.

Last Updated: 31 Dec 1969

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Intellectual Disability and Developmental Risk: Promoting Intervention to Improve Child and Family Well-Being.
 

Author(s): Keith A Crnic, Cameron L Neece, Laura Lee McIntyre, Jan Blacher, Bruce L Baker

Journal: Child Dev. 2017 03;88(2):436-445.

 

Initial intervention processes for children with intellectual disabilities (IDs) largely focused on direct efforts to impact core cognitive and academic deficits associated with the diagnosis. Recent research on risk processes in families of children with ID, however, has influenced ...

Last Updated: 31 Dec 1969

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Clinical Trial Information This information is provided by ClinicalTrials.gov

Last Updated: 17 Apr 2018

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Augmentative and Alternative Communication in Games With Virtual Reality in Intellectual Disabilities
 

Status: Recruiting

Condition Summary: Intellectual Disability

 

Last Updated: 14 Aug 2017

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Last Updated: 20 Dec 2017

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