Common Myths & Unusual Facts About Down Syndrome
There are certain “sliding door” moments in our lives, when something pivotal happens that sets us on a particular trajectory. My first one happened when I was 20 months old and my brother, Mikey, was born with Down Syndrome. Of course, I didn’t know it at the time, but being his sister would irrevocably shape my personal and professional life.
For over two decades I’ve been working with neurodiverse children, first as a Special Ed teacher and later as a board-certified Behavior Analyst. These days, I bring my unique blend of personal and professional perspectives together to coach parents of neurodiverse children. And here’s one thing I know for sure from all my years working with children and adults with Down Syndrome, Autism, and other neurodiverse diagnosis: every person is unique. Sadly, for every unique individual, there are myths about Down Syndrome that override fact for many people.
When we hear about someone having Down Syndrome, it can be easy to fall prey to common myths, misconceptions, and stereotypes. After all, when we don’t have personal experience with a group of people, we may not have the knowledge to question or challenge the status quo. But, in the words of Maya Angelou, “When you know better, you do better.”
Whether you’re here seeking information about Down Syndrome because of a recent diagnosis in your family, or to learn more about a friend or colleague, I’m happy you’re here to learn - and unlearn - the most common myths about Down Syndrome (and discover some fun facts along the way, too.)
Are people with Down Syndrome misunderstood?
In short, yes. Despite our changing times, there is a common misunderstanding and a remarkable amount of prejudice.
People with Down Syndrome are often defined by their disability and their difference. Which means they are not seen as a whole person. Their identity as a person with Down Syndrome can be clouded by so many stereotypes that it is impossible to see them as an individual - for who they really are.
The truth is, a child with Down Syndrome is a unique individual, just like every other child, with their own likes, dislikes, challenges, successes, feelings, and goals. As they grow into adulthood, they can do most things any other adult can do, just on their own timeline.
As Mikey’s sister, I’ve experienced first-hand the assumptions surrounding Down Syndrome. I remember telling people about Mikey when I was a child and realizing very quickly that once I said, “Down Syndrome,” most people had the same image in their mind: someone with specific physical characteristics who is unable to take care of themselves but is “always happy.”
Mikey, like most of his peers, doesn’t fit this mold. Yes, he is gregarious and can be the life of the party, but he’s also a human with a full range of emotions. His method of communicating is 100% unique. Instead of speaking words, he uses gestures, adaptive signs, and repetitive sounds. Mikey is one of a kind and doesn’t fall into a lot of the common myths about Down Syndrome. In fact, most of the people with Down Syndrome I’ve met and worked with over the years don’t either.
Exploring these myths and stereotypes is important work. Raising awareness about one disability can lead to changes in attitudes towards disability in general. A change in our cultural tide that could help so many people feel like they belong. Let’s dig in.
10 Common Myths & Stereotypes About Down Syndrome
1. They are always happy.
Most people with Down Syndrome experience developmental delays. This means they may have a childlike approach to the world even after they become adults. Unfortunately, this has led to a stereotype that they are “always happy”. This is far from the truth. In fact, people with Down Syndrome have higher rates of mental health challenges compared to the general population, and the risk for depression increases with age.
2. You can always tell if someone has Down Syndrome by the way they look.
Nope! While many people with Down Syndrome have some physical characteristics in common, such as almond-shaped eyes, they look more like their families than they do other people with Down Syndrome. This is because they have all the same chromosomes as their parents PLUS some additional chromosome material.
3. Most babies with Down Syndrome are born to mothers over 40.
The fact is, 80% of babies with Down Syndrome are born to mother under 35 years old. There are increased risk facts for women over 40, but those pregnancies account for only a small number of total pregnancies yearly. If you’re concerned about this for yourself, talk to your doctor.
4. They do not have sexual desires or maintain intimate relationships.
This misconception is likely thanks to misguided, old thinking that assumed people with Down Syndrome are in a mental state of perpetual childhood. Not the case!
While cognitive development is based on the individual, their sexual physical development is typically on the same timeline as their neurotypical peers. As with all children, those with Down Syndrome need access to sex education in an age-appropriate way so they can understand their bodies, their sexuality, boundaries, and safe sex.
Their ability to consent is, perhaps, one of the most important aspects in determining if they are ready for intimate/sexual relationships. As parents, we might look to the United Kingdom’s Mental Capacity Act for pointers when considering if our child is able to consent. Ultimately, although we know our child best, we must also remember that our job is to listen and help them achieve as much autonomy and personhood as possible. Being a fully seen person is what we all want!
5. They will always depend on social services.
Many families find social services an important part of early intervention. Social workers, therapist, and behavior experts all have a role to play in making sure your child gets all the help they need to thrive. However, in many cases these services taper off as people with Down Syndrome grow and mature. Many go on to live independently and have full lives that are not reliant on help from social services.
6. They cannot be parents.
People with Down Syndrome can be parents! While we are still learning more about the genetics of Down Syndrome, we know that many men who have it are infertile. However, most women with Down Syndrome are able to get pregnant and need access to good reproductive education. Many of these women’s pregnancies have complications, although some are also born healthy. Ultimately, they can give birth to neurotypical OR neurodiverse babies.
7. They have a short life expectancy.
This is a myth that is happily not true. Over time, the life expectancy for people with Down Syndrome has increased significantly. Now, the average life expectancy is 60 years, and many live to 80 years. This increase has a lot to do with the additional research and learning within the medical community, and more access to health services for individuals.
Sadly, access to good medical care for African-American people with Down Syndrome mirrors the care for neurotypical people in the Black community at large: the average life expectancy is just 35 years for them.
8. They all share common interests/like to do the same things.
People with Down Syndrome are capable of the full range of human emotions, likes, and dislikes. This is one of the stereotypes that seems so obviously wrong, but for people who have never had the joy of knowing someone with Down Syndrome personally, it can be easy to fall prey to.
Just like every other individual, people with Down Syndrome have hobbies and interests that are unique to them.
9. They will only be friends with other people with disabilities.
As with any other person, the breadth of their friendships is dictated by the range of people they socially engage with. For a long time in this country, people with Down Syndrome were segregated, sent to live in homes, and mistreated.
This isolation was based on the idea that they could not learn or be an integrated part of society and led to many of the stereotypes that still exist today. In fact, the more they are welcomed into all space, the more friends they make, and the more independent they become.
10. They cannot carry a job or have a career.
Thankfully, this is a myth that has been changing (ever so slowly) over the years. Thanks to people with Down Syndrome having access to more education, they are able to find more jobs across various industries. Not only is this effort good for inclusivity, but these employees also make invaluable contributions to their workplaces.
5 Interesting Facts About People With Down Syndrome
As more and more people with Down Syndrome are welcomed into all work and social spaces, they are able the full breadth and depth of their abilities to a wide variety of experiences. It’s become more common to see them featured in film and television (which is an important step towards representation), but did you know these interesting facts?
Chris Nikic was the first person with Down Syndrome to complete a full Ironman triathlon, an extraordinary achievement by any measure. His success was in part due to his own vision and determination (He reportedly told his dad that he wanted to own a business, buy his own house and car, be a public speaker, get married and start his own family.), but also thanks to his father, Nick, who helped coach Chris with a 1% method. This simple approach of just taking one small step each day of training proved to be the perfect wat for Chris to develop the physical strength and mental fortitude required for such a success.
A 2011 study looked at how happy and satisfied people with Down Syndrome were based on their OWN assessment. This research was meant to help new and expectant parents of children with Down Syndrome, but also helps us shift away from many of the stereotypes listed above. The study found that 99% of people with Down Syndrome indicated they were happy with their lives; 97% likes who they are; 96% likes how they look. They also went on to encourage healthcare professionals to value them, emphasizing that they shared similar.
Ellie Goldstein was one of the first models with Down Syndrome and has gone on to be an integral part of campaigns with global brands like Gucci and Nike. This representation has been an inspiration to other Down Syndrome models like Sofia Jirau.
A 16th century painting, The Adoration of the Christ Child, depicts an angel with what appears to be Down Syndrome. Although it is not the first indication of Down Syndrome in historical art and artifacts, the fact that the image is an angel raises questions about how such an individual would have been regarded during those time.
Isabella Springmuhl Tejada is the first fashion designer with Down Syndrome. Here designs are sustainable and focus on the colorful Guatemalan fabrics of her country. Her ability to show at London Fashion Week and spread her message of inclusivity through her global brand is a powerful indication of just how far we’ve come!
How Being Mikey's Sister Has Shaped My Life
Every single one of these myths and stereotypes makes me so grateful to my parents, who refused to consider anything other than having Mikey and keeping him at home to be a part of our family. A decision that was before it’s time.
Every sibling relationship is unique. Mikey and I are no different. What makes us unique is our deep bond. From the moment I held his as a baby, I was locked into being his playmate, teacher, and fierce advocate.
The most beautiful part of our relationship is how much Mikey has taught me. From Day One, we had to find our own way to communicate. This meant me learning to really listen to him from such a young age. I had to be fully present to learn about his sounds, patterns, and needs. This organically turned into us playing for hours without having to say a word.
This ability to stay present, focus on each individual person, and search for common understanding have been the most important skills of my life and career. It’s what helps me see beyond just a “client.” For me, each person is a parent, a sibling, a wife, a grandparent. Thank you, Mikey, for helping me see every individual for exactly who they are.
Community Resources
If you’re new to this Down Syndrome journey, here are some resources that may be helpful.
- National Down Syndrome Society
- National Down Syndrome Congress
- Global Down Syndrome Foundation
- Down Syndrome Foundation & Camp
- Down Syndrome Diagnosis Network
You’re not alone. If you need some one-on-one help, reach out for a no-pressure Discovery Call to see if coaching might be the answer you’re looking for.
