Down syndrome – The Facts

Down syndrome – The Facts
Children with Down
syndrome are not just born to
older mothers
While the chance of having a baby
with Down syndrome does increase
with maternal age, around 80% of
babies with Down syndrome are born
to mothers under thirty-five, with 20%
of these to mothers under twenty-five
years old.
This is simply because more children
overall are being born to mothers in
these younger age groups.
Families that have a child
with Down syndrome are just
like other families
All families experience joy, bonding,
trials and challenges. This remains
true for families that include a
person with Down syndrome. For
the individuals, parents, siblings and
extended family, life carries on as
usual.
People with Down syndrome
do not all look alike
While there are some physical
features of Down syndrome that
people may share, they have far
more physical and personality
characteristics in common with
their families. A person with Down
syndrome will always look more like
1 | Down syndrome – The Facts
the members of his or her family than
another person with Down syndrome.
People with Down syndrome
experience a full range of
emotions
Just like everyone else, people with
Down syndrome are not always
happy. They can also be sad, angry,
excited, scared or joyful. Their
feelings can be hurt and there can
be days where they need emotional
support, just like their peers.
A baby either does or does
not have Down Syndrome
A diagnosis of Down syndrome is
based on the presence of an extra
copy of chromosome 21. This means
that having Down syndrome is
black or white, you either have it
or you don’t. There is, however, a
great range of abilities and features
between individuals. Some of the
characteristics of Down syndrome,
including intellectual disability and
developmental delay, may be able to
be classified using terms like ‘mild’,
‘moderate’ or ‘severe’.
No one with Down syndrome shows
all the physical signs of the syndrome.
As with all children, their physical
features give no indication of their
intellectual capabilities. Similarly,
people may have some physical sign
of Down syndrome without actually
having the condition. None of the
characteristics of Down syndrome,
including the physical signs, are
exclusive to people with Down
syndrome.
People with Down syndrome
keep learning new skills
throughout their lives
Some professionals once believed
that children with Down syndrome
were unable to learn. We now know
that, just like everyone else, people
with Down syndrome start learning
from the day they are born and
continue throughout their whole
lives. People with Down syndrome
are now attending early intervention
therapy sessions from a young age,
attending mainstream classes at
school, and continuing to learn new
skills post-school in order to get jobs.
Children with Down syndrome will
learn to walk and talk and go through
the same developmental milestones
as their siblings and peers, just at a
slower rate. Medical conditions can
hinder this and slow development,
so frequent medical check-ups
are important. With support
and patience, people with Down
syndrome can develop and enhance
skills in many areas.
WORDS CAN EITHER
HELP INDIVIDUALS TO
LEAD MORE COMPLETE
AND ENRICHING LIVES
OR CAN REINFORCE
STEREOTYPES THAT
ARE DEGRADING AND
LIMITING. OVER THE
YEARS, TERMINOLOGY
HAS CHANGED.
In Australia, the current
term for the diagnosis is:
“Down syndrome “– no apostrophe
‘s’ after ‘Down’ and small ‘s’ for
syndrome
People with Down syndrome
have a broad spectrum of
skills and interests
Some people with Down syndrome
may enjoy music, some may not.
Some may possess the talent to learn
an instrument, some may not. Some
may be active and play sports, some
may not. Some may be social and
outgoing, some may not. All people
have different skills and abilities.
Children with Down
syndrome grow up!
Children with Down syndrome
don’t remain as children forever.
Adults with Down syndrome should
be supported to have the same
rights and opportunities as people
without disabilities. It is important
to encourage independence from a
young age, and provide guidance and
education around topics like sexuality
and relationships as they grow older.
Many adults with Down syndrome
enjoy romantic relationships, with
some choosing to marry.
Individuals with Down
syndrome will most likely
comprehend more than their
speech indicates
It is important to separate a person’s
understanding from their spoken
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language skills. People with Down
syndrome appreciate being spoken
to rather than spoken about. Try to
speak to them directly rather than
through a parent or carer.
Many adults with Down
syndrome may live
independently
Learning the skills for independent
living can be a challenge, but
with improvements in education,
opportunities and community
attitudes, more adults are living
independently, or semi-independently
with some outside support.
People with Down syndrome
can live into their 60’s
and 70’s
In the past, people with Down
syndrome had a shorter life
expectancy due to untreated
heart conditions and other health
complications, coupled with a
sheltered lifestyle that resulted
from unacceptable community
attitudes. Thanks to advances in
medical diagnosis and treatment, and
increased community understanding
and awareness this has changed.
People with Down syndrome are
living long, happy, healthy, productive
lives and playing active roles in their
communities.
Avoid referring to someone as
“suffering from” being a “victim of”
or “afflicted by”, the condition, rather
the person “has Down syndrome”.
Likewise, avoid using terms such as
“poor”, “unfortunate” or “pitiful”.
Refer to the “chance” of having a baby
with Down syndrome rather than the
“risk” of having a baby with Down
syndrome.
People with Down syndrome
don’t need sympathy, just
support
An individual with Down syndrome is
an individual first and foremost. The
emphasis should be on the person,
not the disability. Down syndrome
is only one of the many things that
helps makes a person who they are,
and as such shouldn’t be the only
thing used to describe them.
Stress the individual first
• A child with Down syndrome
• An adult with Down syndrome
• A baby with Down syndrome
• A person with Down syndrome
A person with Down syndrome is
not a Downsie, a Down syndrome
or a Downs child.
Each person has his or her own
unique talents, skills and strengths.
Try not to believe or reinforce
stereotypes.