For New Parents : General

Here you will find answers to questions that we are often asked. If you do not find what you are looking for, please call our helpline and speak to one of our specialist advisers: 0333 1212 300

 

Please click on a question below to expand.

For more information, see our families and carers section.

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

2. 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.

Down 2 Earth group

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.

Read about the experiences of some adults


Life today photograph Karen

Karen


Karen has just held a party for her friends and family to celebrate the tenth anniversary of moving into her flat. Karen part owns her flat and she has a dedicated team of three staff who support her on a daily basis. A staff member sleeps over each night to make sure that Karen is safe. Karen fills her week with visits to the Gym, college courses in IT, numeracy, crafts and massage, listening to rap music and watching wrestling. Karen travels to and from college on her own using public transport. Karen loves playing football and visiting the Science Museum. Karen finds writing difficult so she dictates her poetry to one of her support workers so that they can write it down for her.

Life today photograph Tom

Tom


Tom lives in a residential home with other adults with learning disabilities. Support is on hand day and night if Tom needs it. During the week he enjoys going to a day centre and a Mencap social group. Tom is quite active and he enjoys dancing, swimming and table tennis. Tom adores animals, particularly monkeys, and when he feels comfortable he loves to list the things he likes.

Life today photograph Tessy 2

Tessy


Tessy lives with her aunt and she has a little spoken language in Czech and English. She helps her aunt with the cooking and household chores. Tessy loves to make things with her hands and she expresses herself in colours and shapes. During an average week she does yoga, gardening in a herb garden, ceramics classes and glass mosaic classes. Tessy enjoys bird watching, walks and studying nature.


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”.

10. What does the DSA do for people with Down's syndrome and their families?

For 45 years the Down’s Syndrome Association, has worked hard to improve knowledge and understanding about people with Down’s syndrome among 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 and support 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.

11. I am interested in working with people with Down's syndrome - how can I get started?

There are many people who are involved in the lives of people with Down’s syndrome (and usually with a range of other special needs as well). A few examples are: careworkers, teachers, learning support assistants, social workers, speech therapists, and learning disability nurses. In most cases, people gain a general qualification first, and then specialise in an area of learning disabilities. If you are interested in being a careworker, there are many courses available in social care, and some employers offer in-service training. A careers advisory service is the best place to go for up to date information on training, and to talk through the options that you are interested in.

It is a good idea to gain some voluntary work experience, as it will give you an idea of whether or not you will enjoy the work, and will also stand you in good stead with employers. There are volunteer bureaux in most areas with information on local volunteering opportunities. You can find out which is your nearest bureau by contacting Volunteer Development England.

12. Can you tell the facts from the myths?

Fact or fiction? Children with Down’s syndrome are only born to older parents.

Fiction. 80% of children with Down’s syndrome are born to women younger than 35. However, the likelihood of having a child with Down’s syndrome does increase with the age of the mother.

Fact or fiction? People with Down’s syndrome are always happy.

Fiction. People with Down’s syndrome have the same feelings and moods as everyone else.

Fact or fiction? People with Down’s syndrome cannot form relationships.

Fiction. People with Down’s syndrome are perfectly capable of forming all types of relationships with people they encounter in their lives, be it friendship, love or a dislike of someone.

Fact or fiction? Men and women with Down’s syndrome can have children.

Fact. Women with Down’s syndrome can and have had children. It has been recorded that two men with Down’s syndrome have been fathers. The information about fertility in people with Down’s syndrome is very outdated and based on research in institutions where men and women with learning disabilities were kept apart.

Fact or fiction? All people with Down’s syndrome will eventually develop Alzheimer’s disease (dementia).

Fiction. Alzheimer’s disease is not inevitable in people with Down’s syndrome. While all people with Down’s syndrome are at risk, many adults with Down’s syndrome will not manifest the changes of Alzheimer’s disease in their lifetime. Although risk increases with each decade of life, at no point does it come close to reaching 100%. Go here for further information.

If you have any problems, call us at the DSA on: 0333 1212 300.

photograph: Monkey Business Images/Shutterstock.com

Did you know…?


  • Around one in every 1000 babies born in the UK will have Down’s syndrome.
  • There are approximately 40,000 people in the UK with the condition.
  • Although the chance of a baby having Down’s syndrome is higher for older mothers, more babies with Down’s syndrome are born to younger women.
  • 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.
  • Down’s syndrome is not a disease. People with Down’s syndrome are not ill and do not “suffer” from the condition.
  • People with the syndrome will have a learning disability. The learning disability affects a person’s ability to learn, it does not mean they cannot learn.
  • Today the average life expectancy for a person with Down’s syndrome is between 50 and 60 with a small number of people living into their seventies.

About the Down’s Syndrome Association


  • Last year we responded to over 8,500 telephone enquiries on our switchboard from members, professionals and the general public, and over 3,800 calls on our helpline.
  • Our website was visited by over 466,034 people from over 150 countries worldwide.

 

 

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