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 349 free, full-text research articles on human participants. First 3 results:

Mental illness, challenging behaviour, and psychotropic drug prescribing in people with intellectual disability: UK population based cohort study.
 

Author(s): Rory Sheehan, Angela Hassiotis, Kate Walters, David Osborn, André Strydom, Laura Horsfall

Journal:

 

To describe the incidence of recorded mental illness and challenging behaviour in people with intellectual disability in UK primary care and to explore the prescription of psychotropic drugs in this group.

Last Updated: 2 Sep 2015

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A 5.8 Mb interstitial deletion on chromosome Xq21.1 in a boy with intellectual disability, cleft palate, hearing impairment and combined growth hormone deficiency.
 

Author(s): M Giordano, C Gertosio, S Pagani, C Meazza, I Fusco, E Bozzola, M Bozzola

Journal:

 

Deletions of the long arm of chromosome X in males are a rare cause of X-linked intellectual disability. Here we describe a patient with an interstitial deletion of the Xq21.1 chromosome.

Last Updated: 1 Sep 2015

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Mutations in DDX3X Are a Common Cause of Unexplained Intellectual Disability with Gender-Specific Effects on Wnt Signaling.
 

Author(s): Lot Snijders Blok, Erik Madsen, Jane Juusola, Christian Gilissen, Diana Baralle, Margot R F Reijnders, Hanka Venselaar, Céline Helsmoortel, Megan T Cho, Alexander Hoischen, Lisenka E L M Vissers, Tom S Koemans, Willemijn Wissink-Lindhout, Evan E Eichler, Corrado Romano, Hilde Van Esch, Connie Stumpel, Maaike Vreeburg, Eric Smeets, Karin Oberndorff, Bregje W M van Bon, Marie Shaw, Jozef Gecz, Eric Haan, Melanie Bienek, Corinna Jensen, Bart L Loeys, Anke Van Dijck, A Micheil Innes, Hilary Racher, Sascha Vermeer, Nataliya Di Donato, Andreas Rump, Katrina Tatton-Brown, Michael J Parker, Alex Henderson, Sally A Lynch, Alan Fryer, Alison Ross, Pradeep Vasudevan, Usha Kini, Ruth Newbury-Ecob, Kate Chandler, Alison Male, , Sybe Dijkstra, Jolanda Schieving, Jacques Giltay, Koen L I van Gassen, Janneke Schuurs-Hoeijmakers, Perciliz L Tan, Igor Pediaditakis, Stefan A Haas, Kyle Retterer, Patrick Reed, Kristin G Monaghan, Eden Haverfield, Marvin Natowicz, Angela Myers, Michael C Kruer, Quinn Stein, Kevin A Strauss, Karlla W Brigatti, Katherine Keating, Barbara K Burton, Katherine H Kim, Joel Charrow, Jennifer Norman, Audrey Foster-Barber, Antonie D Kline, Amy Kimball, Elaine Zackai, Margaret Harr, Joyce Fox, Julie McLaughlin, Kristin Lindstrom, Katrina M Haude, Kees van Roozendaal, Han Brunner, Wendy K Chung, R Frank Kooy, Rolph Pfundt, Vera Kalscheuer, Sarju G Mehta, Nicholas Katsanis, Tjitske Kleefstra

Journal: Am. J. Hum. Genet.. 2015 Aug;97(2):343-52.

 

Intellectual disability (ID) affects approximately 1%-3% of humans with a gender bias toward males. Previous studies have identified mutations in more than 100 genes on the X chromosome in males with ID, but there is less evidence for de novo mutations on the X chromosome causing ...

Last Updated: 8 Aug 2015

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

Does intellectual disability increase sudden unexpected death in epilepsy (SUDEP) risk?
 

Author(s): Charlotte Young, Rohit Shankar, Joanne Palmer, John Craig, Claire Hargreaves, Brendan McLean, David Cox, Richard Hillier

Journal: Seizure. 2015 Feb;25():112-6.

 

An estimated 1.4 million people in the United Kingdom (UK) have intellectual disability (ID) with 210,000 having severe or profound ID. Of these, approximately 125,000 have epilepsy, representing one quarter of all patients with epilepsy in the UK. For those with full scale intellectual ...

Last Updated: 3 Feb 2015

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A SOX3 (Xq26.3-27.3) duplication in a boy with growth hormone deficiency, ocular dyspraxia, and intellectual disability: a long-term follow-up and literature review.
 

Author(s): Stefano Stagi, Elisabetta Lapi, Marilena Pantaleo, Giovanna Traficante, Sabrina Giglio, Salvatore Seminara, Maurizio de Martino

Journal: Hormones (Athens). ;13(4):552-60.

 

SOX3 is located on the long arm of the X chromosome (Xq27.1) and both the under- and over-expression of this gene have been reported in cases of hypopituitarism with or without intellectual disabilities. Nevertheless, only a few cases have as yet been extensively described.

Last Updated: 5 Jan 2015

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A systematic review of hospital experiences of people with intellectual disability.
 

Author(s): Teresa Iacono, Christine Bigby, Carolyn Unsworth, Jacinta Douglas, Petya Fitzpatrick

Journal:

 

People with intellectual disability are at risk of poor hospital experiences and outcomes. The aims were to conduct a content and quality review of research into the acute hospital experiences of both people with intellectual disabilities and their carers, and to identify research gaps.

Last Updated: 31 Oct 2014

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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: 2 Dec 2015

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Autism Spectrum Disorder (ASD) and Intellectual Disability (ID) Determinants in Tuberous Sclerosis Complex (TSC)
 

Status: Recruiting

Condition Summary: Tuberous Sclerosis; Autism Disorder; Intellectual Disability

 

Last Updated: 1 Jun 2015

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

Status: Recruiting

Condition Summary: Intellectual Disability; Congenital Abnormalities

 

Last Updated: 9 Nov 2015

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