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Understanding Down Syndrome

One of every 700 babies born in the United States is diagnosed with Down syndrome. This chromosomal condition occurs when an individual has three, rather than two, copies of their 21st chromosome. The additional genetic material alters the course of development, affecting how a person may learn, speak, or look.

While the cause of the extra full or partial chromosome is still unknown, we do know that Down syndrome affects people of all ages, ethnicities, and socio-economic backgrounds.

With early intervention, loving homes, quality education, appropriate medical care, and positive public attitudes, people with Down syndrome develop to their full potential. Children with Down syndrome often participate in regular classrooms, learn to read, and enjoy integrated community activities. Many adults hold jobs, form lasting relationships, vote, and live independently.

By supporting and advocating together, we show the world that people with Down syndrome are truly more alike than they are different!

A karyotype shows the presence of three copies of the 21st chromosome, indicating Down syndrome.
A karyotype shows the presence of three copies of the 21st chromosome, indicating Down syndrome.

Let’s Talk About Down Syndrome

As a friend, family member, or community relation of a person with Down syndrome, your words can impact the way that people feel about themselves or are viewed by others. By speaking about Down syndrome and people with Down syndrome in a positive and accurate manner, you have the opportunity to help shape perceptions. Together we can use our words to make individuals with Down syndrome and their families feel empowered and welcomed in our communities.

The correct name of this diagnosis is Down syndrome.

Not “Downs” or “Down’s”. The “s” in syndrome is not capitalized. Down syndrome is named for John Langdon Down, the 19th century physician who first classified the condition. It is also acceptable to refer to Down syndrome as Trisomy 21. This is a technical term used because Down syndrome is caused by the triplication (trisomy) of the 21st chromosome. Down syndrome is the most commonly used name.

People with Down syndrome are people first and foremost.

Saying “Down’s person” or “Down syndrome person” implies that Down syndrome should be the focus. Down syndrome is something someone has, not something that someone is. Keep your emphasis on the person, not the disability. Try saying “person/child/baby with Down syndrome” instead. We call this person-first language.

A person has Down syndrome, but it doesn’t define him or her.

People with Down syndrome have unique personalities and traits that are not related to Down syndrome. When speaking, say that a person “has Down syndrome,” not that a person “is Down syndrome.” This places the focus on the person, not the disability.

People with Down syndrome have an intellectual disability (ID).

The United States government, American medical and psychiatric professionals, and the World Health Organization no longer use the term “mental retardation.” Instead, use the term “intellectual disability.” “Mongolism,” “mongoloid,” and “handicapped” are also outdated terms. It is most appropriate to say a person with Down syndrome has an intellectual disability (ID) or developmental disability.

There is no such thing as “a little bit of Down syndrome.”

A person either has Down syndrome or does not. There is not a scale for Down syndrome. There is no such thing as severe or mild Down syndrome. Down syndrome impacts people differently because people are different. People with Down syndrome have different strengths and weaknesses just like all humans, not because they have varying degrees of the condition.

Use neutral terminology.

A person has Down syndrome, rather than “suffers from,” “is the victim of,” or “is afflicted with” Down syndrome. It is important to instill a sense of pride in all children. Having Down syndrome is not something terrible or shameful.

End the R-word.

It is not okay to say “retard” even if you are not talking about someone with a disability. The R-word is hurtful and represents the discrimination and degradation of people with disabilities. Using it in this manner equates unintelligent or silly behavior with having an intellectual disability, which is cruel and unfair to the millions of thoughtful, capable, contributing members of our society who do have a disability.

Normal is a setting on a washing machine.

“Normal” is a subjective word. By referring to someone without Down syndrome as “normal,” we imply that there is something wrong with people who are different. When speaking about a person who does not have a disability, refer to him or her as “neurotypical” or “does not have a disability.” These terms are accurate and neutral.

People with Down syndrome are not all the same.

Try not to use stereotypes and clichés when describing an individual with Down syndrome. For example, people with Down syndrome are not always happy. They experience complex emotions, just like everyone else. These types of stereotypes take away a person’s individuality and prevent others from seeing who he or she really is.

Talk about the person, not the diagnosis.

Most importantly, look at a person with Down syndrome as an individual. Your family member, student, coworker, or new friend has lots of unique personality traits, interests, and skills. Acknowledge his or her individuality and accomplishments. Remember that a person with Down syndrome is just that—a person.

That doesn’t mean you can’t talk about Down syndrome!

It’s okay to ask a person with Down syndrome or a family member about the diagnosis as long as you ask in a manner that respects the individual and his or her privacy. If you don’t understand a term, or are unsure about what language is appropriate, just ask. We are all learning together.

Download the language guide brochure

Talking to Kids About Down Syndrome

Society is beginning to realize that most children with Down syndrome learn better when taught alongside typically developing kids. Including children with disabilities in standard education classes, with appropriate classroom supports, enriches the learning experience for ALL children.

But kids have questions.
Parents have questions.

For parents, “those” kids weren’t in our classes when we were in school, so we don’t have much information about their unique gifts and challenges.

Use the Q&A below to talk with your kids-and educate yourself-about Down syndrome. By taking the time to learn more about our peers with Down syndrome, we open the door to new friendships and opportunities to be advocates in our own communities.

And remember! If your child doesn’t understand a term, or is unsure about what language is appropriate, encourage them to ask. We are all learning together.

What is Down syndrome?

What is Down syndrome?

Down syndrome is something that causes differences in the way a person looks and learns. No two people with Down syndrome are quite the same, but they are often extra flexible in their joints, have eyes that slant, have small ears and a small nose and grow more slowly than other kids. People with Down syndrome also tend to learn more slowly than others.
Why is it called Down syndrome?

Why is it called Down syndrome?

A doctor named John Langdon Down was the first person to write about this condition. It’s not called Down syndrome because we should be “down” or depressed about it.
Why do people have Down syndrome?

Why do people have Down syndrome?

People with Down syndrome are born with one extra chromosome in some or all of their cells. Chromosomes contain the directions that tell your body how to grow. These directions tell your body what color your eyes and hair will be, how big your nose will be, whether you will be a good singer, and many other things. When a person has an extra chromosome, it mixes up their body’s directions a little. That is why people with Down syndrome look a little different and have to try harder to learn. Nobody knows why some babies are born with Down syndrome, but we do know that it is nobody’s fault.
Will Down syndrome go away?

Will Down syndrome go away?

No. Down syndrome is not a sickness. Most people with Down syndrome are very healthy, although nearly 50% are born with heart defects, most of which are corrected by surgery. You cannot “catch” Down syndrome. The only way to get Down syndrome is to be born with it.
Why can't my friend with Down syndrome talk very well?

Why can't my friend with Down syndrome talk very well?

Many people with Down syndrome have trouble learning to talk. Many little kids first learn to communicate by using their hands in sign language. Kids with Down syndrome also benefit from having a teacher help them learn to talk (a speech and language pathologist), but the best teachers are often other kids. If you know a person with Down syndrome and you don’t understand them, ask them to repeat themselves or show you what they mean. Just because a person with Down syndrome doesn’t talk to you doesn’t mean they don’t want to be your friend. They may just need extra time and extra help.
Can people with Down syndrome learn?

Can people with Down syndrome learn?

Yes! People with Down syndrome can and do learn, but have to work harder than others, and may need more time and extra help. Kids with Down syndrome can participate in all school activities even though they may not learn everything.
Do people with Down syndrome grow up?

Do people with Down syndrome grow up?

Yes. In adulthood, many people with Down syndrome have jobs, go to college, live independently, and support their communities. Some become actors or actresses, work on Capitol Hill in Washington DC, and even compete in the Olympics! People with Down syndrome bring to their jobs enthusiasm, reliability, and dedication.
Do people with Down syndrome have feelings?

Do people with Down syndrome have feelings?

Yes. Just like everyone, people with Down syndrome have feelings. They can feel happy, silly, sad, sorry, or upset, just like you. People with Down syndrome enjoy friends and family and can be hurt when someone teases or makes fun of them – just like you.
Why does my friend with Down syndrome act differently than other kids?

Why does my friend with Down syndrome act differently than other kids?

People with Down syndrome have difficulty with language and talking. Many kids want to interact and play with their friends, but don’t know how, are afraid they won’t be understood, or afraid that they will be told, “No, you can’t play.” Some kids with Down syndrome get overwhelmed when too many things are going on at the same time.
Can I help my friend?

Can I help my friend?

Yes! Play and talk with people with Down syndrome. If they’re having trouble playing a game, give them time and extra help, or ask what game they want to play. Find out what your friend likes to do. Hang out together.
Download the Q&A brochure

Reading List for Kids

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Different: A Great Thing To Be
by Heather Avis and Sarah Mensinga (2021)

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My Friend Has Down Syndrome
by Jennifer Moore-Mallinos (2008)

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Eli, Included
by Michelle Sullivan (2019)

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A Friend Like Anian
by Meeka Caldwell (2020)

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