Busting the Myths About Down’s Syndrome

By Li-Hsian CHOO

This is because one of the most important lessons I have learned as a parent to a child with Down’s syndrome is to have the “serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference.”

Many times, we encounter people, even other parents of children with Down’s syndrome or other genetic disabilities, who talk about finding a “cure” for the child’s condition. I find this viewpoint somewhat harmful as it refers to the condition as something which will “go away”. It is important to not be in denial. We need to fully understand the facts, symptoms, and parameters surrounding the condition. This is so that we can eventually come to accept the things that we cannot change. Only then can we move forward with courage to perhaps push the envelope a little to change the things we can change to help the child optimise their given potential.

Based on this particular perspective and my personal experience, I have selected 5 related myths to highlight and bust about Down’s syndrome.

Myth #1: All People with Down’s Syndrome have Severe Cognitive Disability, They Cannot Learn

The truth is that people with Down’s syndrome do have mild to moderate cognitive disability, or intellectual disability. However, this is not indicative of the many strengths and talents that each individual possesses. People with Down’s syndrome can learn but as they are known to be more visual learners who may find it hard to grasp abstract concepts, they may learn differently and require learning adaptations. So, be considerate as they may need extra time and some support to get things done or said. They may need a given task to be adapted or broken down to help them understand and complete it better.

Myth #2: Segregated Special Education Programmes are the Only Option for Students with Down’s Syndrome

It is very beneficial for individuals with Down’s syndrome who can cope, to learn or work in inclusive environments. I have written about my daughter Isha’s inclusive education experience here. I strongly believe that inclusion and inclusive education benefit all children, not only those with special needs. Inclusion is actually the theme for this year’s World Down Syndrome Day celebrations – you can find out more and participate in the meaningful #inclusionmeans campaign here.

Myth #3: Down’s Syndrome is similar to Autism Spectrum Disorder (“ASD”) as Individuals with Down’s Syndrome Can Be Categorised Across a Spectrum

The truth is that it is not similar to ASD as there is no “mild” Down’s syndrome or “severe” Down’s syndrome. Down’s Syndrome is a genetic condition. The NDSS explains it well: In every cell in the human body there is a nucleus, where genetic material is stored in genes. Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes. Typically, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. In short, they have 3 copies of chromosome 21 (this explains why World Down Syndrome Day is celebrated on the 21st of March every year). This additional genetic material alters the course of development and causes the characteristics associated with Down’s syndrome. A few of the common physical traits of Down’s syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the centre of the palm – although each person with Down’s syndrome is a unique individual and may possess these characteristics to different degrees, or not at all.

Whilst we do not have a spectrum relating to the condition, we do have a kind of “spectrum of health” for children with Down’s syndrome. Children with the syndrome have a wide variety of health outcomes depending on how they are affected by certain medical issues that are commonly associated with the syndrome. Aside from the traits mentioned earlier, some children with Down’s syndrome might have congenital heart conditions (with some needing major heart surgery), hearing problems (due to their ear structures), short-sightedness and sensory issues. These health outcomes affect their physical, cognitive, emotional and social development in direct and indirect ways. For example, a child with a severe congenital heart condition who may need a series of surgeries may also experience developmental delays as they spend a lot of time in hospitals for treatment and recovery. So, they end up missing school and other learning opportunities. A child with hearing issues may have speech and also learning delays as they may not be able to access classroom lessons in an optimal way. A child with sensory issues may not eat well, and be exposed to nutritional deficiencies that affect their physical growth.

Myth #4: People with Down’s Syndrome have Stereotypical Personality Traits e.g. They are Always Happy, Very Stubborn, Difficult to Manage etc.

Again, the NDSS puts it very well when they say that people with Down’s syndrome have feelings just like anyone else. They experience the full range of emotions. They respond to positive expressions of friendship and are hurt and upset by inconsiderate behaviour. Based on my own experience with Isha, sometimes certain personality traits and behaviour that are displayed are due to certain feelings they experience or their misunderstanding of certain things or situations. They are simply attempting to understand how the real world works and how regular people interact. For example, my daughter typically approaches her daily homework or drills she has to do in a dogged, determined and independent manner as innately, she may feel that completing these tasks makes her a “good student” who delivers all the tasks that her teacher asks, and makes her feel like “everyone else” in her mainstream classroom. She does not like to be distracted or to receive a lot of help. This can be misconstrued or labelled as “stubborn” behaviour when in fact it can be a good trait if viewed, managed and harnessed positively. So, we try to encourage her good homework ethic but at the same time, help her to learn how to receive help positively when she needs it. Sometimes, she can throw tantrums and become cranky when doing a task. We try to remind ourselves that is not because she wants to be difficult or is hard to manage, but more because she is frustrated at not being able to complete the task well in the way she wants and independently, perhaps due to problems with her fine motor skills or cognitive limitations. So, it is important to look beyond the sometimes undesirable behaviour to find out the real reason why it is being displayed, and to support the child or individual with appropriate adaptations or scaffolding so they can succeed.

Myth #5: People with Down’s Syndrome Cannot be Active Members of their Community and Contributing Members of Society, They Are Not Employable

The truth is that people with Down’s syndrome are active participants in educational, social and recreational activities in Malaysia and around the world. Many of them are included in the mainstream education system and take part in sports, music, art programmes and various other activities in the community. My Isha enjoys playing the piano and violin. She is learning to dance Bharatanatyam and has participated in several public dance performances. She swims and likes to hike at the forest hill reserve near our home. She also has rich friendships with other children that are not grounded on charity but genuine respect and affection. People with Down’s syndrome are valued members of their families and communities, and make meaningful contributions to society.

Businesses do employ adults with Down’s syndrome for a variety of positions – in banks, corporations, hotels, hospitals, nursing homes, offices and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and the computer industry, to name a few. Like anybody else, people with Down’s syndrome want to have a job where their work will be valued and an income so they can lead meaningful, independent lives. They just need someone to believe in them and to offer them an opportunity. I love this video on “The Hiring Chain” that was done last year by CoorDown, an organisation that aims to activate social communication actions to raise awareness of the potential of people with Down’s syndrome;  promote their inclusion in school, work and sport; share experiences between individual associations; identify and implement common strategies with regard to shared policy issues.

Often, the developmental barriers that children with Down’s syndrome and other differently-abled children face may not always be directly due to their diagnosis or related conditions. Rather, they are a result of the closed minds and discriminatory practices in general society. Thus, we need to work together  to actively cultivate more inclusive environments and mindsets so that there is not only a greater awareness of diversity – whether physical, racial, cultural, gender and neuro-diversity – but also a deep appreciation of it.