About Down’s Syndrome

1. What is Down’s syndrome?

Down’s syndrome is caused by the presence of an extra chromosome in a baby’s cells. In the majority of cases, Down’s syndrome is not an inherited condition. Down’s syndrome usually occurs because of a chance happening at the time of conception

What causes Down’s syndrome?

As yet we do not know what causes the presence of an extra chromosome 21. It can come from either the mother or the father. There is no way of predicting whether a person is more or less likely to make and egg or sperm with 24 chromosomes.

There is a definite link with advanced maternal age for reasons yet unknown. However most babies with Down’s syndrome are born to women under the age of 35, as younger women have higher fertility rates.

What we do know is that no one is to blame. Nothing done before or during pregnancy can cause Down’s syndrome. It occurs in all races, social classes and in all countries throughout the world. It can happen to anyone.

3. What is the incidence of Down’s syndrome?

For every 1,000 babies born, one will have Down’s syndrome.

About 750 babies with Down’s syndrome are born in the UK each year.

Down’s syndrome affects people of all ages, races, religious and economic situations.

There are approximately 40,000 people with Down’s syndrome living in the UK.

4. When was Down’s syndrome discovered?

It is believed that people with Down’s syndrome have always existed. However, it was not until 1866 that the English doctor, John Langdon Down published a description of the condition, which subsequently took his name.

In 1959 Professor Jérome Lejeune proved that Down’s syndrome is a chromosomal irregularity. Instead of 46 chromosomes usually present in each cell, Lejeune noted 47 in the cells of people with Down’s syndrome. It was later determined that this additional chromosomal material results in the physical characteristics associated with the condition and the different course in development.

5. Do people with Down’s syndrome have a particular personality type?

No, people with Down’s syndrome do not have a particular personality type. People with Down’s syndrome are individuals. However, people with Down’s syndrome are more likely to use certain coping strategies. For example, it is common for people with Down’s syndrome to use routine, order and consistency as a way of rationalising and controlling their lives. Similarly, people with Down’s syndrome may also use self-talk as a way of directing their behaviour, expressing their feelings and making sense of what is sometimes a very confusing world. Change can be very disorientating especially if you have a learning disability.

In the past, people with Down’s syndrome have sometimes been portrayed as being stubborn. Stubbornness and a refusal to co-operate may be a signal from the individual that they do not fully understand what is expected of them. Stubbornness can also be symptomatic of an individual trying to exert control over their lives. The best way to help someone is to try and find out from him or her what the problem is.

6. Can men & women with Down’s syndrome get married and have children?

People with Down’s syndrome have the right to have personal and sexual relationships, and to get married. The DSA knows of a number of happily married couples where one or both partners have Down’s syndrome. It is important that young people with Down’s syndrome receive education in the area of relationships and sexuality. As in other areas of learning, they may need more support with this than some of their peers.

Both women and men with Down’s syndrome can be fertile, although both sexes have a reduced fertility rate. They therefore need advice on, and access to, contraception. People with Down’s syndrome need careful and sensitive advice about having children, as there are a number of issues to consider. Some people with learning disabilities can successfully parent their children, given the right support. However, many couples with learning disabilities decide for themselves not to have children because of the responsibility and hard work involved, or for financial reasons. Where one parent has Down’s syndrome, there is a 35% to 50% chance that the child would inherit the syndrome. This chance is even higher where both parents have Down’s syndrome. There is also a high chance that pregnancy would end in miscarriage. Women with Down’s syndrome are also more likely than other women to have a premature baby, or to need a caesarian section.

7. What was life like in the past for people with Down’s syndrome?

In the early part of the last century legislation was introduced which led to the incarceration of thousands of people with learning disabilities in institutions known as long stay hospitals. Parents were made to feel ashamed of their children with learning disabilities and were routinely told to “Put him away and forget him”. Many of the public attitudes that still exist today stem from the policies of segregation, which were continued by successive governments.

The 1944 Education Act advocated a selection process to decide which children were deemed “educable”. Children with Down’s syndrome were deemed “ineducable” and therefore denied an education. This classification determined that their lives would be spent in institutions or at home with their families who were given no support. It was not until the 1971 Education Act that it was officially recognised that no child is “ineducable”, that children with learning disabilities had a legal right to go to school.

It was also in 1971 that the White Paper “Better Services for the Mentally Handicapped ” appeared which advocated the closure of the long stay hospitals and the provision of services within the community.

In the final two decades of the last century legislation was introduced to ensure that people with learning disabilities had the right to receive services and support within their own communities. This included the right to attend your local mainstream school.

8. What is life like now for people with Down’s syndrome?

The quality of life, life expectancy and role in the community for people with Down’s syndrome have gradually been transformed as education and support have improved. In fact the opportunities for people with Down’s syndrome to lead the lives that they want have never been greater. However, we know that we still have work to do to ensure that people with Down’s syndrome have many of the same life chances that the general population take for granted.

Adults with Down’s syndrome are leading longer, more healthy, fulfilling and varied lives. Small but increasing numbers are leaving home to live with support in their communities, getting jobs, having busy social lives and enjoying friendships and relationships. Some adults choose to stay with their families and receive a service to meet their needs from Social Services. Alternatively, the person might receive a direct payment from Social Services and they and their family organise their support.

9. What is the correct terminology regarding people with Down’s syndrome?

Down’s syndrome is not a disease and therefore people with Down’s syndrome do not suffer nor are they victims of their condition. Down’s syndrome is only a part of the person, they should not be referred to as “a Down’s”. People with Down’s syndrome are all unique individuals and should be acknowledged as a person first and foremost. It is important to think of the person first, e.g. “John is 29 and he has Down’s syndrome”.

It is vital to speak about issues relating to Down’s syndrome in a way that is both factually accurate and inoffensive to people with Down’s syndrome, their families, carers and the people who support them.

We are sure you share our concerns so please take a minute to read the following language guidelines to ensure that you are not perpetuating any myths about the condition.

People with Down’s syndrome are all unique individuals and should be acknowledged as a person first and foremost. Down’s syndrome is only a part of the person; they should never be referred to as “a Down’s” or “a Down’s person”.

Don’t Say : suffers from OR is a victim of Down’s syndrome
Don’t Say : a Down’s baby/person/child
Don’t Say : retarded/mentally handicapped/backward/mental disability
Don’t Say : disease/illness/handicap

Do Say : has Down’s syndrome
Do Say : a person/baby/child with Down’s syndrome or who has Down’s syndrome. People
with Down’s syndrome are all unique individuals and should be acknowledged as a
person first and foremost. It is important to think of the person first, e.g. John is 29
and has Down’s syndrome.
Do Say : learning disability
Do Say : condition OR genetic condition

10. Myths / Facts

Only older mothers have babies with Down’s syndrome.
Myth. Although older mothers have a higher individual chance of having a baby with Down’s syndrome, more are born to younger mothers, reflecting the higher birth rate in this group.
People with Down’s syndrome are always happy and affectionate.
Myth. We are all individuals and people with Down’s syndrome are no different to anyone else in their character traits and varying moods.
People with Down’s syndrome cannot achieve normal life goals.
Myth. With the right support, they can. Small but increasing numbers of people with Down’s syndrome are leaving home and living with support in their communities. They are , gaining employment, meeting partners and getting the best out of life.