What is Down syndrome?
Down syndrome is the most commonly occurring genetic condition. Individuals with Down syndrome have an extra copy of the 21st chromosome present in all, or some, of their cells. This additional genetic material alters the course of development and leads to the characteristics associated with Down syndrome. 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.
Current estimates from the Centers for Disease Control and Prevention suggest that one child with Down syndrome will be born for every 700 live births, representing approximately 6,000 babies born with Down syndrome each year.* It is estimated that there are more than 250,000 individuals with Down syndrome living in the United States.
There is a wide variation in the abilities, physical development and behavior of individuals with Down syndrome. Each individual has their own unique personality, capabilities and talents. With appropriate education, therapy, social support and opportunity, individuals with Down syndrome can reach their fullest potential.
What to Say & What Not to Say
What to say:
For a new baby with Down syndrome, say “Congratulations”! This baby, just like any other baby, deserves to be celebrated! Treat this baby just as you would any other baby – bring cards, or gifts and lots of smiles and love. Tell the parents how beautiful the baby is, or how he or she looks just like his or her mother or father, or siblings. (Do not say “I’m sorry” – pity doesn’t help, but love and acceptance is meaningful.)
For older children or adults, address the person with Down syndrome directly, just like you would any other child or adult. Because speech delays are often present in individuals with Down syndrome, speech may be difficult. But, you should still address the person as you would any other. Get to know them. People with Down syndrome are interested in the same things as everyone else – ask their favorite sport, or activity. Many people with Down syndrome work – ask them about their job, or what they do in their free time. We guarantee you’ll find some common ground!
What not to say:
Don’t refer to an individual with Down syndrome as a “Down’s baby”, “Down’s girl” or “Down syndrome man” – refer to an individual just like you would someone else – as a person first. A woman with Down syndrome, or a young boy with Down syndrome.
Don’t say that someone “suffers from”, “is afflicted by” or “is a victim of” Down syndrome. People have Down syndrome, but they don’t suffer because of it and it is not an illness or a disease – it is a genetic condition. Take a look at the pictures on this website – we assure you that individuals with Down syndrome aren’t suffering from it.
It is also completely inappropriate to use out-dated medical terms that have become slang language – do not use the words “retard”, “retarded” or “mongoloid”. While these terms once had a place in the medical field, using these words implies that people with Down syndrome are less valuable because of their characteristics. In addition, when discussing people without Down syndrome, the appropriate terminology to use is “typical” or “typically developing” instead of “normal” because people with Down syndrome aren’t abnormal, they are just different and different isn’t necessarily bad.
You might find some of these third-party blog posts to be insightful. These are written from the perspectives of various parents who want you to understand what to say and what not to say:
10 Things to Say when a Baby is Born with Down syndrome - by Gillian Marchenko
11 Things Not to Say to the Parent of a Child with Down syndrome - by Ruth Usher
For Relatives: Things NOT to Say and Things TO Say - by Down Syndrome: Parents Sharing
Preferred Language Guide
- 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 everyone to use people-first language. Say “the person with Down syndrome" not “the Down syndrome person”. A person with Down syndrome is not “a Downs person"
- 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, this assumption reinforces the incorrect stereotype that “all people with Down syndrome are the same.” Here are some basic guidelines for using People First Language:
Put people first, not their disability
- A “person with a disability”, not a “disabled person”
- A “child with Down syndrome”, not a “Downs child”
Use emotionally neutral expressions
- A person “has” Down syndrome, not “suffers from” Down syndrome
- A person “with” cerebral palsy, not “afflicted with” cerebral palsy
Emphasize abilities, not limitations
- A person “uses a wheelchair”, is not “wheelchair-bound”
- A child “receives special education services”, is 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”
Myths & Truths
The National Down Syndrome Society (NDSS) has put together a list of common myths and truth available at http://www.ndss.org/Down-Syndrome/Myths-Truths/.