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?

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

New insights in the interpretation of array-CGH: autism spectrum disorder and positive family history for intellectual disability predict the detection of pathogenic variants.
 

Author(s): Gerarda Cappuccio, Francesco Vitiello, Alberto Casertano, Paolo Fontana, Rita Genesio, Dario Bruzzese, Virginia Maria Ginocchio, Angela Mormile, Lucio Nitsch, Generoso Andria, Daniela Melis

Journal:

 

Array-CGH (aCGH) is presently used into routine clinical practice for diagnosis of patients with intellectual disability (ID), multiple congenital anomalies (MCA), and autism spectrum disorder (ASD). ACGH could detect small chromosomal imbalances, copy number variations (CNVs), and ...

Last Updated: 13 Apr 2016

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Mutations in TBCK, Encoding TBC1-Domain-Containing Kinase, Lead to a Recognizable Syndrome of Intellectual Disability and Hypotonia.
 

Author(s): Elizabeth J Bhoj, Dong Li, Margaret Harr, Shimon Edvardson, Orly Elpeleg, Elizabeth Chisholm, Jane Juusola, Ganka Douglas, Maria J Guillen Sacoto, Karine Siquier-Pernet, Abdelkrim Saadi, Christine Bole-Feysot, Patrick Nitschke, Alekhya Narravula, Maria Walke, Michele B Horner, Debra-Lynn Day-Salvatore, Parul Jayakar, Samantha A Schrier Vergano, Mark A Tarnopolsky, Madhuri Hegde, Laurence Colleaux, Peter Crino, Hakon Hakonarson

Journal: Am. J. Hum. Genet.. 2016 Apr;98(4):782-8.

 

Through an international multi-center collaboration, 13 individuals from nine unrelated families and affected by likely pathogenic biallelic variants in TBC1-domain-containing kinase (TBCK) were identified through whole-exome sequencing. All affected individuals were found to share ...

Last Updated: 9 Apr 2016

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X-linked intellectual disability gene CASK regulates postnatal brain growth in a non-cell autonomous manner.
 

Author(s): Sarika Srivastava, Ryan McMillan, Jeffery Willis, Helen Clark, Vrushali Chavan, Chen Liang, Haiyan Zhang, Matthew Hulver, Konark Mukherjee

Journal:

 

The phenotypic spectrum among girls with heterozygous mutations in the X-linked intellectual disability (XLID) gene CASK (calcium/calmodulin-dependent serine protein kinase) includes postnatal microcephaly, ponto-cerebellar hypoplasia, seizures, optic nerve hypoplasia, growth retardation ...

Last Updated: 2 Apr 2016

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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 55 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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The co-occurrence of mental disorders in children and adolescents with intellectual disability/intellectual developmental disorder.
 

Author(s): Kerim M Munir

Journal: Curr Opin Psychiatry. 2016 Mar;29(2):95-102.

 

The study summarizes supportive epidemiological data regarding the true co-occurrence (comorbidity) and course of mental disorders in children with intellectual disability/intellectual developmental disorders (ID/IDD) across the lifespan.

Last Updated: 30 Jan 2016

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Development of vocational training systems for patients with intellectual disability in Poland.
 

Author(s): Janina Krysta, Krzysztof Krysta, Karolina Zawada, Wiesław J Cubała, Mariusz S Wiglusz, Katarzyna Jakuszkowiak-Wojten

Journal: Psychiatr Danub. 2015 Sep;27 Suppl 1():S401-7.

 

The problem of employment of people with intellectual disabilities is present in many countries. The literature on this topic draws attention to the fact that the improvement of the situation in this area is conditioned by changes in government policies, practices of employers and ...

Last Updated: 30 Sep 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

Various Type of Genetic Events in Patients With Intellectual Disability
 

Status: Not yet recruiting

Condition Summary: Intellectual Disability

 

Last Updated: 23 Aug 2016

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Dialectical Behaviour Group Therapy for Adults With Intellectual Disabilities
 

Status: Recruiting

Condition Summary: Intellectual Disability

 

Last Updated: 28 Sep 2016

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Research and Characterization of New Genes Involved in Intellectual Disability
 

Status: Recruiting

Condition Summary: Intellectual Disability

 

Last Updated: 6 Dec 2016

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