This guide explains your rights as a parent of an adult with autism.

Once your son or daughter reaches the age of 18, by law, you are not entitled to make decisions on their behalf. We outline how this may affect you while your grown-up son or daughter continues to live with you at home and what happens when they leave home. We also tell you of some ways in which you can continue to best support your adult son or daughter with autism, under these circumstances.

Reaching adulthood

Once a young person reaches the age of 18, regardless of whether they have autism, legally, they are an adult. As a parent, you can no longer make decisions on their behalf. This is because by the age of 18, most young people become independent of their parents. They may still be very close to their parents and parents may continue to offer both financial and emotional support, however, it is considered inappropriate for parents to make decisions on behalf of their children by this time in their lives. In addition, our legal system does not allow a right of guardianship of an adult, except in very extreme circumstances and for a brief time.

In Scotland, the situation is different. A young person becomes an adult at the age of 16. In addition, the Adults with Incapacity (Scotland) Act offers a range of options to help an adult who lacks the capacity to make decisions and manage different areas of their life. It makes it possible for another adult to be given powers to make decisions on behalf of someone who cannot act for themselves. For more information, see Adults with Incapacity (Scotland) Act on the Enable Scotland website (website address in the 'Further information and contact details' section below).

Caring for an adult with autism at home

This situation is complicated when a young person with autism turns 18 and is unable to cope alone. Many young people with autism continue to live with their parents until well into adulthood.

If your adult son or daughter is still living at home, social workers and other service providers will generally keep you informed and involved about the services they provide. It is not in their interest to exclude you, especially as parents and the extended family still provide a huge amount of care to adults with autism and are therefore valuable partners in the provision of care. If you are not happy with the services provided by the local authority, see our information sheet, Community care: a guide for adults with an ASD and their carers, which has information on how to complain, or call our Autism Helpline.

If you are a carer, you may need help and support and Carers UK is a good source of information (see 'Further information and contact details').

What happens when an adult with autism leaves home?

When a person with autism leaves home, your rights are not so clear. The way in which care services are provided to adults with autism is governed by the NHS and Community Care Act 1990, which says:

"The individual service user and normally, with his or her agreement, any carers should be involved throughout the assessment and care management process. They should feel that the process is aimed at meeting their wishes." (Section 3.16 of Community care in the next decade and beyond: policy guidance, published by the Department of Health)

This means that care managers should consult parents when carrying out an initial assessment and in recommending a placement, but after that, your rights as parents are not clear. However, you can do a number of things to make it easier for you to remain involved with your son's or daughter's care. Many placements will have a policy on how they involve a client's family. Ask for this policy before choosing a placement as this may give you some idea of your rights as a parent.

A person with autism can be socially isolated so you can also help your adult son or daughter by trying to maintain as many existing links as possible with friends and family. This will help them make the transition to living away from home.

If, at any time, you are not happy with the services provided and feel that they are not suited to your child's needs, you can complain either through the complaints procedure at your child's placement or through the local authority, if they are funding the care. If your son or daughter is receiving residential care from the NHS for example, if a young person with autism has additional mental health needs you still have the right to complain. You can complain about residential care in the NHS with the help of the Independent Complaints Advocacy Service (ICAS). Your local Patient Advice and Liaison Service (PALS) will have ICAS contact details (see 'Further information and contact details'). 

Citizen advocates

Parents are often their children's main advocates well into adult life. However, when you feel you are not being listened to or if you are concerned you will not always be around to represent your child, you have the option of appointing an independent citizens advocate. Citizens advocates are volunteers who befriend and get to know individuals, often those with acute needs, and help them to get their voice heard by official organisations such as health, social, education or care services. A number of citizen advocacy schemes operate around the country. For more information, contact Action for Advocacy (see 'Further information and contact details').

Further information and contact details

Action for Advocacy (A4A)
PO Box 31856
Lorrimore Square
London SE17 3XR
Tel: 020 7820 7868
Email: info@actionforadvocacy.org.uk
Website: www.actionforadvocacy.org.uk
Action for Advocacy (A4A) is a leading authority on the development of effective advocacy services for vulnerable and disempowered people. Search its online database to find an advocacy service in your area or call for more information.

Carers UK
20 Great Dover Street
London SE1 4LX
Helpline: 0808 808 7777 (open Wednesday and Thursday, 10am to 12noon; and 2pm to 4pm)
Carers UK works to improve the lives of carers by providing information and advice on carers rights and by campaigning for changes that make a real difference to carers. If you are caring for an adult with autism at home, you can get help and advice from Carers UK.

ENABLE Scotland
2nd Floor
146 Argyle Street
Glasgow G2 8BL
Tel: 0141 226 4541
Email: enable@enable.org.uk
Website: www.enable.org.uk
ENABLE Scotland campaigns for a better life for children and adults with learning disabilities and supports them and their families to live, work and take part in their communities.

Patient Advice and Liaison Service (PALS)
Website: www.pals.nhs.uk
PALS helps patients, their relatives, carers and friends who are using the NHS. For example, PALS can give you information about the NHS and help you with any other health-related enquiry, help resolve concerns or problems, and give you information about the NHS complaints procedure.

Transition Information Network
c/o Council for Disabled Children
8 Wakley Street
London EC1V 7QE
Email: TIN@ncb.org.uk
Website: www.transitioninfonetwork.org.uk
The Transition Information Network (TIN) is an alliance of organisations and individuals who work together with the aim of improving the experience of disabled young peoples transition to adulthood. Its website is aimed at parents, carers and people who work with and for disabled young people in transition to adulthood and has a range of information, including information about housing, education, money and support. TIN does not have a helpline and cannot provide direct advice to individuals.