- What is Down's syndrome?
- What causes Down's Syndrome?
- What is the incidence of Down's syndrome?
- When was Down's syndrome discovered?
- Do people with Down's syndrome have a particular personality type?
- Can men & women with Down's syndrome get married and have children?
- What was life like in the past for people with Down's syndrome?
- What is life like now for people with Down's syndrome?
- What does the future hold?
- What is the correct terminology regarding people with Down's syndrome?
- Can you tell the facts from the myths?
Down’s syndrome is a genetic condition caused by the presence of an extra chromosome in the body’s cells. Down’s syndrome is not a disease, and it is not a hereditary condition. It occurs by chance at conception.
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.
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. It is estimated that there are around 60,000 people with Down’s syndrome living in the UK.
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.
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 sameness 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.
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.
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.
In the past it was believed that there were many things that people with Down’s syndrome could not do when in fact they had never been given the opportunity to try.
Today these opportunities have never been greater with many people with Down’s syndrome leading rich and varied lives. However there is along way to go and much work to be done before all people with Down’s syndrome, both children and adults are given the opportunity to partake fully in all aspects of community life.
The Government has recognised this and has completed the first full review of services for people with learning disabilities in 30 years. This has resulted in the White Paper – “Valuing People: A New Strategy for learning Disabilities for the 21st Century”, in which the key principles – legal and civil rights, independence, choice, inclusion – are to be reflected in every aspect of the lives of children and adults with learning disabilities. “Valuing People” applies only to England. Similar strategies are being introduced in Scotland, Wales and Northern Ireland.
It is hoped that services will continue to improve for people with Down’s syndrome and that our society will become fully inclusive, embracing diversity rather than condemning many people with Down’s syndrome and their families to a life of social exclusion. The International Human Genome Project has been successful in sequencing chromosome 21. As research continues on this small set of genes, it is hoped that the future will bring greater understanding of the development of people with Down’s syndrome and why there is a higher incidence of certain medical problems in people with the condition.
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”.
What does the DSA do for people with Down’s syndrome and their families?
For 40 years the Down’s Syndrome Association, has worked hard to improve knowledge and understanding about people with Down’s syndrome amongst the general public. We believe that this is the key to society recognising the value and contribution children and adults with Down’s syndrome make to our communities. We provide information, counselling, support and advocacy for people with Down’s syndrome, their families/carers and professionals. We champion the rights of people with Down’s syndrome to help ensure they have the support opportunities they need to live lives of their own choosing.