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.”
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.
Most people with Down syndrome are institutionalized.
Fact: Today people with Down syndrome live at home with their families or independently and are active participants in the educational, vocational, social and recreational activities of the community. They are integrated into the regular education system, and take part in sports, camping, music, art programs and all the other activities of their communities.
Parents will not find community support in raising their child with Down
Fact: In almost every community of the United States there are parent support groups and community organizations directly involved in providing services to families of individuals with Down syndrome.
Children with Down syndrome are placed in segregated special education
Fact: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects.
Adults with Down syndrome are unemployable.
Fact: Businesses are seeking young adults with Down syndrome for a variety of positions. They are being employed in various business settings and industries: by banks, corporations, nursing homes, hotels, restaurants, and in the music and entertainment industry. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication.
People with Down syndrome are always happy.
Fact: People with Down syndrome have feelings just like everyone else. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.
Adults with Down syndrome are unable to form close relationships leading to
Fact: People with Down syndrome date, socialize and form ongoing relationships; some even marry.
The correct name
of this diagnosis is Down syndrome. There is no
apostrophe (Down). The "s" in syndrome is not capitalized (syndrome).
An individual with Down syndrome is an individual first and foremost. The emphasis should be on the person, not the disability. A person with Down syndrome has many other qualities and attributes that can be used to describe them.
Encourage people to use people-first language. "The person with Down syndrome," not "the Down syndrome person." A person with Down syndrome is not "a Downs".
Words can create barriers. Recognize that a child is "a child with Down syndrome," or that an adult is "an adult with Down syndrome." Children with Down syndrome grow into adults with Down syndrome; they do not remain eternal children. Adults enjoy activities and companionship with other adults.
It is important to use the correct terminology. A person "has" Down syndrome, rather than "suffers from," "is a victim of," "is diseased with" or "afflicted by."
Each person has his/her own unique strengths, capabilities and talents. Try not to use the clichés that are so common when describing an individual with Down syndrome. To assume all people have the same characteristics or abilities is demeaning. Also, it reinforces the stereotype that "all people with Down syndrome are the same."
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"
- 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
- A person "uses a wheelchair", not "wheelchair-bound"
- A child "receives special education services", not "in special ed"
- 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"