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

Effectiveness of switching from oral ziprasidone to risperidone in a patient with comorbid autistic disorder, profound intellectual disability, Gilbert syndrome, and exacerbation of psychosis.
 

Author(s): Antonio Del Casale, Georgios D Kotzalidis, Michele Sacco, Chiara Rapinesi, Riccardo De Giorgi, Marco Giardini, Michele D'Andreagiovanni, Nicola Carlino, Roberto Brugnoli, Paolo Girardi

Journal: Psychiatr Danub. 2016 Mar;28(1):91-4.

 

Last Updated: 4 Mar 2016

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[Detection of subtelomeric copy number variations in children with intellectual disability].
 

Author(s): Li-Na Zhu, Yan Wang, Wei Peng, Xiu-Wei Ma, Xiao Yang, Xin Liu, Zhi-Chun Feng

Journal: Zhongguo Dang Dai Er Ke Za Zhi. 2015 Dec;17(12):1273-6.

 

To detect subtelomeric copy number variations in children with genetic intellectual disability (ID) using multiplex ligation-dependent probe amplification (MLPA), and to investigate the pathogenesis of genetic ID.

Last Updated: 23 Dec 2015

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TAF1 Variants Are Associated with Dysmorphic Features, Intellectual Disability, and Neurological Manifestations.
 

Author(s): Jason A O'Rawe, Yiyang Wu, Max J Dörfel, Alan F Rope, P Y Billie Au, Jillian S Parboosingh, Sungjin Moon, Maria Kousi, Konstantina Kosma, Christopher S Smith, Maria Tzetis, Jane L Schuette, Robert B Hufnagel, Carlos E Prada, Francisco Martinez, Carmen Orellana, Jonathan Crain, Alfonso Caro-Llopis, Silvestre Oltra, Sandra Monfort, Laura T Jiménez-Barrón, Jeffrey Swensen, Sara Ellingwood, Rosemarie Smith, Han Fang, Sandra Ospina, Sander Stegmann, Nicolette Den Hollander, David Mittelman, Gareth Highnam, Reid Robison, Edward Yang, Laurence Faivre, Agathe Roubertie, Jean-Baptiste Rivière, Kristin G Monaghan, Kai Wang, Erica E Davis, Nicholas Katsanis, Vera M Kalscheuer, Edith H Wang, Kay Metcalfe, Tjitske Kleefstra, A Micheil Innes, Sophia Kitsiou-Tzeli, Monica Rosello, Catherine E Keegan, Gholson J Lyon

Journal: Am. J. Hum. Genet.. 2015 Dec;97(6):922-32.

 

We describe an X-linked genetic syndrome associated with mutations in TAF1 and manifesting with global developmental delay, intellectual disability (ID), characteristic facial dysmorphology, generalized hypotonia, and variable neurologic features, all in male individuals. Simultaneous ...

Last Updated: 7 Dec 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 53 free, full-text review articles on human participants. First 3 results:

Case report of novel DYRK1A mutations in 2 individuals with syndromic intellectual disability and a review of the literature.
 

Author(s): Stephanie M Luco, Daniela Pohl, Erick Sell, Justin D Wagner, David A Dyment, Hussein Daoud

Journal:

 

Chromosomal deletions encompassing DYRK1A have been associated with intellectual disability for several years. More recently, point mutations in DYRK1A have been shown to be responsible for a recognizable syndrome characterized by microcephaly, developmental delay and intellectual ...

Last Updated: 29 Feb 2016

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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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Symptoms, Diagnosis, and Treatment

There are currently no related results available in Genetics Home Reference.

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: 18 Feb 2016

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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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