Down Syndrome Awareness Month 2024

TRIGGER WARNING: mentions miscarriage, still-birth and termination

October is Down Syndrome Awareness Month. Down Syndrome is considered a neurodivergence, as a consistent trait is that their brains work differently to the neurotypical expectation. The brain structure of most Down Syndrome people is noticeably different to the average human brain. All people with Down Syndrome experience some degree of cognitive delay, with most having a mild to moderate intellectual disability. It is said to be the most common cause of intellectual disability.

How Does Down Syndrome Occur?

Down Syndrome is a genetic condition caused by a glitch during cell division in the early development of the foetus. Translocation Down Syndrome can be hereditary, but this accounts for less than 1% of people with Down Syndrome. The cells in our bodies contain chromosomes, which are made up of deoxyribonucleic acid (DNA) coiled around proteins. These sequences of DNA are genes. Each cell in our bodies contains around 25,000 to 35,000 genes. The biological norm is for the human body to have 23 pairs of chromosomes (46 chromosomes) in each cell. People with Down Syndrome have an extra chromosome 21, meaning they have 47 chromosomes in their cells. As they have a pair of chromosome 21, plus an extra one, in each cell, Down Syndrome is sometimes called Trisomy 21.

It is difficult to communicate the current statistical likelihood of Down Syndrome occurring in Australia. Around 1 in 1,100 (less than 0.001%) people are born with DS; just under 300 people per year. However, there are also estimates that around 30% of DS pregnancies end in miscarriage or still birth, and that it is estimated that 90% of DS pregnancies are terminated when the condition is detected during prenatal screenings. If all three of these statements are true, then the likelihood of Down Syndrome occurring is around 1.3%. This differs across a range of factors, the most obvious being the age of the mother; the older the mother, the higher the likelihood of Down Syndrome.

Traits of Down Syndrome

Physically, people with Down Syndrome are likely to have:

An epicanthal eye fold, and eyes that slant upwards
A flat nose bridge
A short neck
Small ears, hands, and feet
A small pinky finger, often not parallel to other fingers but pointing towards thumb
A single transverse crease on the palm of the hand, opposed to the usual two slightly overlapping palmar creases
Shorter than average height

The range of differences in cognitive ability is much broader. It can involve any degree of intellectual disability, with the average IQ thought to be around 50. The cognitive differences can also include delayed – or even missed – developmental milestones. You cannot assume a person’s intelligence, abilities, skills, interests, or differences, based purely on the fact that they have Down Syndrome.

Co-Occuring Conditions

As with many other neurodivergencies, the likelihood of being multiply-neurodivergent is high in people with Down Syndrome. Commonly co-occurring neurodivergencies include early onset dementia (particularly Alzheimer’s), autism, ADHD, epilepsy, and mood disorders. The most commonly occurring physical health concerns include hypotonia, infections, blood disorders, vision problems, hearing problems, glue ear, heart conditions, hypothyroidism, and Coeliac disease.

Person First Language

People with Down Syndrome tend to prefer person-first language rather than identity-first language. For example, “A person with Down Syndrome” is generally preferred over “A Down Syndrome person”.

Assumptions

Society tends to make a number of assumptions about people with Down Syndrome, particularly around their independence, maturity, and abilities.

For World Down Syndrome Day 2024 (March 21st), CoorDown produced a fantastic clip starring Canadian actress Madison Tevlin. Let this video be your guide on assumptions around people with Down Syndrome…