Writing a Character With Down Syndrome (Ultimate Guide)

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Writing a character with Down Syndrome (DS) can be refreshing, empowering, loving, and yet fraught with fears. What if I screw this up? What if I misrepresent someone? What if I unintentionally fall into stereotypes, biases and offend someone?

You don’t want your fears to suppress the inclusivity in your writing. But you are still afraid – about misrepresentation, injustice to the character, and lack of accurate detail. You want to keep your character with Down Syndrome just as they are – unique, respectable, versatile, and interesting. Your only question is how and this article is your ultimate guide.

Like with any other character, writing a character with Down Syndrome should start with research. Next, give them a unique and powerful voice of their own. You can do this by selecting a POV bigger than their condition yet impacted and informed by it. Another tip is to keep the plot focused on the character that happens to have Down Syndrome, not on the syndrome itself.  In the end, respect their whole unique personality – don’t let them be defined by their condition. They are not bound to one personality, job, capacity, or any other restricted set of characteristics.

Read my post on How Many Characters Should A Book Have?

To write any character, it is helpful to:

  • Understand them (their values, ethics, motivations, and desires)
  • Respect them as individuals
  • Explore their experiences, history, mannerisms, and strengths and weaknesses
  • Give them a unique voice
  • Explore any conditions they may have
  • Remain informed and unbaised

The same applies to writing a character that incidentally has Down Syndrome.

Let’s see how!

Research graphic for writing characters with Down Syndrome

Research to Write Characters with Down Syndrome

The starting place of writing realistic characters of any kind is deep and thorough research.

Research into questions like:

  • What is Down Syndrome?
  • How does Down Syndrome affect an individual?

By the way, see the links to research and video interviews in this post to answer these (and many more) questions.

Research is a basic step of every character writing or world-building process. Why are we even mentioning it here? It’s because most writers believe that the research for writing a character with Down Syndrome is different from the research we conduct before creating people without a condition. In truth, it is very much the same

So, how do we approach a character without a physical, mental or emotional condition?

  • We see them as a person.
  • We pick up their personality from their behavior, worldviews, and interactions.
  • We don’t rely only on their apparent traits and their overt behavior.
  • We make them multi-dimensional (having many sides, not just one side).
  • We develop our curiosity in the person as him or herself, not as a son, daughter, sibling, or student of someone else.
  • We approach them as a full and complete person because.
  • We understand them because we can understand ourselves to some extent.

This approach is often missing when writers explore and create characters with Down syndrome. It is also largely missing when we view these characters in literary work (or movies) because most literature on them misses one thing – their voice.

And their voice is missing – not because it is absent in them – but because we believe that we cannot understand it or because we don’t realize it is there.

So, without meaning to, we turn a deaf ear to what they have to say. We miss their completeness, their originality, their uniqueness because we are too overwhelmed by their condition.

Without realizing it, we often see them as their condition rather than a complete and full and powerful person who just happens to have Down Syndrome.

Therefore, the first step in researching people with Down syndrome is to know them in person. Spend some time in person (or even virtually) with individuals who have Down Syndrome.

There is no better experience to inform your writing of characters with this condition.

Yes, researching Down Syndrome with its patterns and characteristics and challenges is essential (we’ll get to that). But researching and writing a character with Down Syndrome goes so much deeper than their condition.

Yes, seeing them from the viewpoint of their parents, siblings, and colleagues is crucial. But the research will lack a foundation if you don’t first listen to them and their views about themselves.

That’s why, in this post, you will find not only links to research articles from trusted medical websites, but you will also have the opportunity to watch videos of individuals with Down Syndrome answering common question about their disorder.

Research Links to Write Characters with Down Syndrome

Understanding and empathy is the foundation of writing a character with Down Syndrome.

Use the following links to begin your journey of research and understanding:

Skip generalization graphic for writing characters with Down Syndrome

Skip Generalization

The need for this research isn’t necessarily reduced if you are a close relative to a person with Down Syndrome. On the contrary, the need may only intensify.

Why? Simply because when you have a close family member or friend with Down Syndrome, you start generalizing their traits. If they are obsessively clean, you would think that it’s a common trait. And if they are shy, you might think that every person who has this syndrome is shy.

In the same way, you cannot rely on analyzing one person with this condition to extrapolate your observation to every member of this community. They all are unique, beautiful and different.

Yes, you can use your research on a single person with DS and can use that to write your character. But it is vital to understand that one person with Down Syndrome does not represent ALL people with Down Syndrome. There are many manifestations of the condition, and each person is unique.

Still, broadening your research will allow you to present your character in brilliant detail and to capture their vibrant nature with all their passion and intensity.

Interacting with more people and understanding their communication styles will allow you to better elaborate on their behavior, thinking patterns, and emotional responses.

Read my post on What Do You Need To Start Writing A Book?

How to write realistic characters with down syndrome blog graphic

How to Write Realistic Characters with Down Syndrome

Realism combined with artistic license is the hallmark of good storytelling. And perhaps the best source of honest and accurate information about Down Syndrome is from those with the condition. If you want to write realistic characters with Down Syndrome, watch the following videos, check out the research links, and read the rest of this post.

Let’s start with the video Questions and Answers.

What is Down Syndrome?

Can a person with Down Syndrome live on their own?

Can a person with Down Syndrome get a job?

Can a person with Down Syndrome get married?

Next, watch this video interview of an actor with Down Syndrome who stars in the movie, The Peanut Butter Falcon.

Common Characteristics of Characters with Down Syndrome

Each person with Down Syndrome is unique, but many people with Down Syndrome share common characteristics such as facial features, challenges, and health risks. Some individuals with Down Syndrome display these characteristics, some don’t. I share them simply to help you further define your specific character.

The following are some of the common characteristics of characters with Down Syndrome:

  • Flattened facial features
  • Corners of the eyes turn upward
  • Smaller ears
  • Smaller hands
  • Smaller feet
  • One single crease or line across the palm of their hands
  • Shorter neck
  • Tongue may stick out of their mouth
  • Increased risk for digestive problems
  • 50% have a heart defect
  • Increased risk of acid reflux
  • Gluten intolerance
  • Problems in school
  • Speech and language develop more slowly
  • Obsessive/compulsiveness
  • Attention disorders
  • Stubbornness
  • Tantrums
  • Repetitive speech
  • Repetitive self-talk
  • Increased risk of Alzheimer’s disease

This list is by no means meant to indicate that every character (or person) with Down Syndrome will display all of these traits or suffer these medical conditions. This is certainly not true. Each person and character with Down Syndrome is a whole, complete and unique individual.

Develop the Plot around Them (Not Their Condition) Down Syndrome graphic for writing characters with Down Syndrome

Develop the Plot Around Them (Not Their Condition)

We don’t see much literature written around people with DS. Even those novels and stories which include such characters usually take them as either incidental to the plot or supplementary.

In the first case, the complaint of under-representation persists. This complaint only grows exponentially in the second case. It’s because in the second case, the novels usually don’t take these characters as central to the storyline; rather, they take their condition as the central issue.

If a writer only highlights the limitations of the condition instead of the uniqueness and completeness of the character’s personalities, the writer may unintentionally be doing a disservice.

So, how can you respect the sentiments of people with Down Syndrome while including their contribution to the entire world? How can you write novels which depart from the myth that DS is a tragic mistake, flaw, weakness, and limitation?

You can do this by knowing and exploring their interests, passions, desires, relationships, wants, needs, strengths, failures, goals, and struggles (as a complete person) and making this knowledge central to your plot.

If you are thinking that shifting focus away from the difficulties of their conditions will deprive your plot of any conflict, think again! When it is said that the community of people with DS is diverse, they mean it.

This diversity applies to their goals, imagination, challenges, and triumphs.

Don’t Deprive Them of Their Voice Down Syndrome graphic for writing characters with Down Syndrome

Don’t Deprive Them of Their Voice

People with Down syndrome have a voice! And, like any other person or group of people, they have the right to be heard.

This is the major step towards respecting them in your story.

So, how do you allow your readers to hear their voice? The answer can vary depending on whether they feature as primary characters or are secondary ones.

Writing a Main Character with Down Syndrome

Here are a few tips for main characters with DS:

  • Create a rich and complex backstory (just like you would for any character)
  • Focus on them as a person, not their condition
  • Give them at least one person in their life that sees them (and treats them) as a person, not a condition
  • Don’t ignore their condition, but don’t define the character by their condition

Writing Secondary Characters with Down Syndrome

The key to writing great secondary characters with Down Syndrome is to give them a dynamic, rounded, and three-dimensional personality with actions central to the plot of your story.

Secondary doesn’t mean less colorful or important to the plot. It only means less “page time”.

You can also write scenes where the main character gets a chance to see from the perspective of your character with DS. Or you can show a close – and understanding – relationship between the two across the whole manuscript. Both cases will give a limited and somewhat biased (by the characters themselves) peek into the character’s opinion.

Just as we don’t want to limit a character with Down Syndrome from fully expressing themselves in the story, neither do we want to write stories where no one is biased or limited in their views of our character with Down Syndrome.

Sure, we could write a story where everyone loves and embraces and understands each other. But that is not real life. Nor is it good fiction.

Our role as authors is to capture and highlight real experiences filtered through the characters and events of our stories. We are not here to play Pollyanna (showing a perfect world) with boring plots devoid of conflict.

Showing Depth of Character with Primary or Secondary Characters with Down Syndrome

There are several options for showing depth of character with Primary or Secondary characters with Down Syndrome.

  • Make them more verbal and expressive.
  • Use symbols to let the readers deduce what your character is thinking.
  • Leave the scene ambiguous or open to pull the readers’ attention towards their intentions and thought processes underneath the plot development.

After seeing options for primary and secondary characters, you might want to consider how you can approach writing a minor character with DS. The kind of character that shows up for a scene, or part of a scene, and disappears from the story. These are the hotel clerks, the taxi (or Rideshare) drivers, the passerbys and onlookers.

Simple. Just like every other stock character, you can leave this character without much detail and dimension. We recommend not giving any character special treatment – in other words, treat all characters the same, including those with Down Syndrome.

Ethos, Logos, and Pathos – Tread Carefully  Down Syndrome graphic for writing characters with Down Syndrome

Ethos, Logos, and Pathos – Tread Carefully

Take a look at this screenshot from www. writing.stackexchange.com. It highlights an essential element of writing characters with Down Syndrome: to ensure that their internal logic makes sense to them. It might not make sense to anyone else, and it may have disastrous results (like the too salty food example in the screenshot), but it makes sense to the character.

screenshot of writers stack exchange user comments for Down Syndrome Post

Which one of these modes of characterization (ethos, logos or pathos) can you use to describe your character with Down syndrome?

  • Ethos (ethics, morals, values, personal standards)
  • Logos (logic, intellect)
  • Pathos (emotion)

In my opinion, ethos and pathos are most enhanced and personalized in people with DS. There can definitely be some exceptions where individuals with DS show just as much mental capacity, logic, and reasoning as anyone else.

Keep in mind that even when someone with DS is adamant about expressing their reasoning, they may be limited in translation because of the gap between their expressive and receptive language skills. Thus, if you are making an argument based on logos (logic) from the perspective of a character with DS, keep it simple and concrete.

Ethos of Characters with Down Syndrome

When you focus on their ethos, respect their versatility. Know that someone with Down Syndrome can have any belief, value, or bias just like any human being. Again, their condition can make part of (and support) that belief but that belief doesn’t have to entirely depend on their condition.

For example, they can have a belief that when they work hard on their goal, they achieve it. This belief about working hard can get input from their condition (some goals are more difficult for them to achieve) but it can also be independent of their condition.

Pathos of Characters with Down Syndrome

The pathos of characters with Down Syndrome is unique and might present some challenges. Typically, people with DS show delays in recognizing emotions. Also, their emotional intensity may differ from person to person.

They also give less time to each emotion, navigating quickly to the present moment or new emotions. Writing their pathos can be a daunting task. You must work around the lack of time they often give each emotion (coupled with their limited ability to recognize and clearly express feelings).

One method to allow readers to connect with the emotions of these characters is using subtle (or intense) expressions of emotions.

The second method is to let them express it clearly – but know that if the expression is coming from the character itself, you may want to keep that character on a higher level of emotional intelligence across their presence in your piece. This relates to consistency of character. Brilliant characters remain brilliant. Clumsy characters remain clumsy.

Characters can, and should, change over course of the story. However, many characteristics do not change.

One more method is to show the effect rather than describe (or tell) the feelings of the character. For example, it is sometimes better to write that “Tommy watched the piece of bark roll in his hand” instead of writing that he was bored, distracted or uninterested.

Ditch Black and White Thinking   Down Syndrome graphic for writing characters with Down Syndrome

Ditch Black and White Thinking

No one expects you to portray your character with DS as the sweetest person on the earth. They are human and share the same level of imperfection as any other human being. They don’t always have everyone’s best interests at heart. They are not free of negative thoughts, motivations, intentions or actions.

Being disabled doesn’t deprive them of choosing between good and bad. They can and do choose bad and wrongdoing.

Conflict (internal and external) is the lifeblood of fiction. If you take your character with Down Syndrome as a person with a complete set of goals and intentions, you can build the conflict around them (and through them) without focusing on their condition.

Again, it’s important to tread lightly and only tackle their uniqueness and versatility once you have understood them and their condition in detail.

Keep It Simple

People with Down Syndrome have a cognitive process different from people with a typical chromosomal structure. Their focus may remain on certain straightforward facts while completely ignoring other, usually more complex, facts.

They discount some events – just like everyone else – and exaggerate others. The major difference in their cognitive process lies in the types of facts they focus on.

Keep your character’s internal dialogues simple and focused – perhaps even more focused than is accurate from their point of view. In short, give them a voice but blend it (only a little) to suit the understanding needs of your readers. Most of your readers will not have Down Syndrome and will not have experienced a close friend or relative with Down Syndrome. Therefore, accuracy must be blended with understanding.

Sometimes, this means lowering accuracy to elevate understanding. Other times, it means reducing understanding to show accuracy. This is the balancing act of fiction.

Before you go, read my post on The Best Writing Books For Beginners

Down Syndrome graphic for writing characters with Down Syndrome

Wrap Up

Writing characters with Down Syndrome deserves your time, attention, and respect from initial development through final draft.

As a writer and as a pursuant of equal representation, you commit to responding to these needs. You also do your homework by researching the condition. In this way, you sidestep the trap of misunderstanding and pigeonholing while writing a character with Down syndrome. Finally, you complete the character with enough attention and voice as is required in your novel and as is commanded by the role of their character.