What Is Down Syndrome
Down syndrome is the most frequent genetic cause of intellectual disability and associated medical problems and occurs in one out of 691 live births, in all races and economic groups. Named after John Langdon Down, the first physician to identify the cell abnormality, Down syndrome is a chromosomal disorder caused by an error in cell division that results in the presence of a third chromosome 21 or “Trisomy 21.”
- 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 occurs in people of all races and economic levels.
- 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.
- 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.
Myths & Facts
Down syndrome is a rare genetic disorder.
Fact: Down syndrome is the most commonly occurring genetic condition. One in every 691 live births is a child with Down syndrome, representing approximately 6,000 births per year in the United States alone. Today, there are more than 400,000 people living with Down syndrome in the United States.
Most children with Down syndrome are born to older parents.
Fact: Eighty percent of children born with Down syndrome are born to women younger than age 35. However, the incidence of births of children with Down syndrome increases with the age of the mother, especially after age 35.
Parents will not find community support in raising their child with Down
Fact: In many communities of the United States there are parent support groups and community organizations directly involved in providing services to families of individuals with Down syndrome.
Myth: People with Down syndrome are always sick.
Fact: Although people with Down syndrome are at an increased risk for certain medical conditions such as heart defects, respiratory and hearing problems, and thyroid conditions, advances in health care and treatment of these conditions have allowed for most individuals with Down syndrome to lead a healthy life.
Myth: All people with Down syndrome have a severe cognitive disability.
Fact: Most people with Down syndrome have a mild to moderate cognitive disability, or intellectual disability. This is not indicative of the many strengths and talents that each individual posses. Be considerate of the extra time it might take a person who has a disability to get things done or said.
Segregated special education classes are the only option for students with Down syndrome.
Fact: Students with Down syndrome are included in typical academic classrooms in schools across the country. The current trend in education is for full inclusion in social and educational settings. Sometimes students with Down syndrome are included in specific courses, while in other situations students are fully included in the typical classroom for all subjects. Increasingly, individuals with Down syndrome graduate from high school with diplomas, and participate in post-secondary academic college programs.
Adults with Down syndrome are unemployable.
Fact: Businesses employ adults with Down syndrome for a variety of positions - in banks, corporations, nursing homes, hotels, offices and restaurants - to name a few. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication.
People with Down syndrome are always happy.
Fact: People with Down syndrome experience a full range of emotions just like anyone else. The respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.
Myth: Adults with Down syndrome are the same as children.
Fact: Adults with Down syndrome are not children, and should not be considered children. They enjoy activities and companionship with other adults, and have similar needs and feelings as their typical peers. People with Down syndrome date, socialize and form ongoing relationships; some even marry.
People with Down syndrome should always be referred to as people first.
Instead of "a Down syndrome child," say "a child with Down syndrome." Also avoid "Down's child" and describing the condition as "Down's," as in, "He has Down's.”
Down syndrome is a condition or a syndrome, not a disease.
People "have" Down syndrome, they do not "suffer from" it and are not "afflicted by" it.
“Typically developing” or “typical” is preferred over “normal.”
“Intellectual disability" or "cognitive disability” has replaced “mental retardation” as an appropriate description of ones adaptive behavior.
DSAGC strongly condemns the use of the word "retarded" in any context. Using this word is hurtful and suggests that people with disabilities are not competent.
Down vs. Down's
We use the preferred spelling, Down syndrome, rather than Down's syndrome.
Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it. An "apostrophe s" connotes ownership or possession.
While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage in the United States is Down syndrome. The AP Stylebook recommends using "Down syndrome," as well.
People First Language
Here are some basic guidelines:
- Put people first, not their disability
- A "person with a disability", not a "disabled person"
- A "child with autism", not an "autistic child"
- Use emotionally neutral expressions
- A person "with" cerebral palsy, not "afflicted with" cerebral palsy
- An individual who had a stroke, not a stroke "victim"
- A person "has" Down syndrome, not "suffers from" Down syndrome
- Emphasize abilities, not limitations
- A person "uses a wheelchair", not "wheelchair-bound"
- A child "receives special education services", not "in special ed"
- Adopt preferred language
- A "cognitive disability" or "intellectual disability" is preferred over "mentally retarded"
- "Typically developing" or "typical" is preferred over "normal"
- "Accessible" parking space or hotel room is preferred over "handicapped"