Down Syndrome
Down syndrome Facts
The National Down Syndrome Society, list the following as the central facts for Down Syndrome
- Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome
- There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4%, and mosaicism accounts for about 1%
- Down syndrome is the most commonly occurring chromosomal condition. Approximately one in every 700 babies in the United States is born with Down syndrome – about 6,000 each year
- Down syndrome occurs in people of all races and economic levels
- The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age
- People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives
- A few of the common physical traits of Down syndrome are: low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all
- Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today
- People with Down syndrome attend school, work, participate in decisions that affect them, have meaningful relationships, vote and contribute to society in many wonderful ways
- All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses
- Quality educational programs, a stimulating home environment, good health care and positive support from family, friends and the community enable people with Down syndrome to lead fulfilling and productive lives
Down Syndrome & Autism Spectrum Disorders
Down syndrome and autism are both equal opportunity conditions– meaning that anyone, anywhere, regardless of race, creed or socioeconomic status, can have a child with either condition. It is believed that up to 18%1 (some research suggests up to 39%2) of individuals with Down syndrome also have autism spectrum disorder. Both Down syndrome and autism can be challenging disabilities separately, without the combination, however when combined the challenges are multiplied and can be quite complex. For more information we recommend to read Down Syndrome and Autistic Spectrum Disorder: A Look at What We Know by George T. Capone, M.D. adapted from Disability Solutions Vol. 3, issues 5 & 6
Aging & Down Syndrome
Aging and Down Syndrome: A health & well-being guidebook
Adults with Down syndrome are now reaching old age on a regular basis and are commonly living into their 50s, 60s and 70s. While there are many exciting milestones that accompany growing older, old age can also bring unexpected challenges for which adults with Down syndrome, their families and caregivers may not feel adequately prepared. In order to enjoy all the wonderful aspects of a longer life, it is important to be proactive and learn about issues that may lie ahead.
By Elizabeth Head, Ph.D. and Frederick Schmitt, Ph.D., University of Kentucky
People with Down syndrome are living long, productive and healthy lives. However, although many people remain healthy as they get older, there is an increasing risk for developing Alzheimer’s disease.
Down Syndrome & Challenging Behaviors
Esbensen, A. J., Hoffman, E. K., Shaffer, R., Chen, E., Patel, L., & Jacola, L. (2018). Reliability of parent report measures of behaviour in children with Down syndrome. Journal of Intellectual Disability Research, 62(9):785-797. doi: 10.1111/jir.12533.
Esbensen, A. J., Hoffman, E. K., Beebe, D. W., Byars, K.C., & Epstein, J. (2018). Links between sleep and daytime behaviour problems in children with Down syndrome. Journal of Intellectual Disability Research, 62(2):115-125.
Feeley, K, & Jones, E. (2006) Addressing challenging behavior in children with Down syndrome: The use of applied behavior analysis for assessment and intervention. Down Syndrome Research and Practice, 11(2), 64-77. doi:10.3104/perspectives.316
Feeley, K, & Jones, E. (2007) Strategies to address challenging behavior in young children with Down syndrome. Down Syndrome Research and Practice, 12(2), 153-163. doi:10.3104/case-studies.2008
Feeley, K, & Jones, E. (2008) Preventing challenging behaviors in children with Down syndrome: Attention to early developing repertoires. Down Syndrome Research and Practice, 12(1), 11-14. doi:10.3104/reviews.2076
Will, E. & Hepburn S. (2015). Applied behavior analysis for children with neurogenetic disorders. International Review of Research in Developmental Disabilities, Volume 49, pp. 229-259 DOI: 10.1016/bs.irrdd.2015.06.004
Down Syndrome & Mental Health Problems
Foley, K. R., Bourke, J., Einfeld, S. L., Tonge, B. J., Jacoby, P., & Leonard, H. (2015). Patterns of depressive symptoms and social relating behaviors differ over time from other behavioral domains for young people with Down syndrome. Medicine (Baltimore). 94(19) doi: 10.1097/MD.0000000000000710.
Nevill, R. E. & Benson, B. A. (2018). Risk factors for challenging behaviour and psychopathology in adults with Down syndrome. Journal of Intellectual Disability Research, 62(11) DOI: 10.1111/jir.12541
Spendelow, J. (2011). Assessment of mental health problems in people with Down syndrome: Key considerations. British Journal of Learning Disabilities, 39(4) DOI: 10.1111/j.1468-3156.2010.00670.x
Down Syndrome Organizations in the U.S.
The National Association for Down Syndrome
The National Association for Down Syndrome (NADS) is the oldest organization in the United States serving individuals with Down syndrome and their families. It was founded in Chicago in 1961 by parents who chose to go against medical advice and raised their children with Down syndrome at home. Their pioneering efforts have made it easier for later generations of individuals with Down syndrome to be accepted by their families and communities, to develop their capabilities, and to work towards independence.
To learn more about NADS please visit https://www.nads.org/
Global Down Syndrome Foundation
The Global Down Syndrome Foundation (GDSF) is a public non-profit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through Research, Medical care, Education and Advocacy. Formally established in 2009, the Foundation’s primary focus is to support the Linda Crnic Institute for Down Syndrome, the first academic home in the United States committed solely to research and medical care for people with Down syndrome. Since Down syndrome is the least-funded genetic condition in the United States, fundraising and government advocacy to correct the alarming disparity of national funding for people with Down syndrome is a major goal.
To learn more about GDSF please visit https://www.globaldownsyndrome.org/
National Down Syndrome Congress
The National Down Syndrome Congress (“NDSC”) provides information, advocacy and support for all aspects of the lives of individuals with Down syndrome. The organization was formed in 1973 and works to ensure equal rights and opportunities for people with Down syndrome, promotes education, provides public policy leadership, and encourages research. Every year, the NDSC organizes a national convention with approximately 2,500 to 3,000 attendees. The convention attracts nationally and internationally renowned Down syndrome experts and hundreds of families. A key focus of the NDSC is developing self-advocate leadership through their programs and their national awareness campaign “We’re More Alike Than Different.” NDSC has more than 250 affiliates, mostly comprised of local Down syndrome organizations.
To learn more about NDSC please visit https://www.ndsccenter.org/
National Down Syndrome Society
Since 1979, the National Down Syndrome Society (“NDSS”) has worked to promote the value, acceptance and inclusion of people with Down syndrome. NDSS has about 350 affiliates nationwide. The NDSS National Policy Center works with Congress and federal agencies to protect the rights of people with Down syndrome, and educates individuals to advocate on local, state and national levels. The largest NDSS public awareness campaign is My Great Story, which ignites a new way of thinking about people with Down syndrome by sharing stories written by and about them. The National Buddy Walk Program includes over 250 walks. NDSS envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities.
To learn more about NDSS please visit https://www.ndss.org/
Down Syndrome Affiliates in Action
Down Syndrome Affiliates in Action (DSAIA) is a national trade association composed of 70 affiliates mostly made up of local Down syndrome organizations from across the United States. DSAIA’s purpose is to serve their affiliates through collaboration, resource sharing, and networking. Benefits of membership include access to a resource repository, education and training webinars, brokered discount programs and discounted registration at their annual conference. DSAIA’s annual conference provides a valuable forum for local Down syndrome organizations to share programs and best practices with other local Down syndrome organizations.
To learn more about DSAIA please visit https://www.dsaia.org/
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