If you care for someone with autism, your main concern will be how best to support them. However, you may also benefit from accessing help for yourself.
The challenges of caring
Looking after someone with autism can present a parent or carer with a number of challenges. It can also put considerable strain on relationships and on siblings.
“Because autism is a spectrum disorder, people’s experiences vary enormously, but it's generally harder for parents and carers of people with more severe autism,” says Lintilla Turner, Senior Helpline Adviser for The National Autistic Society (NAS).
The most common difficulties for carers include coping with behaviour issues and isolation.
“Coping with behaviour issues in the home can be very challenging,” says Lintilla. “Carers may have to deal with anything from toileting issues to self-harm, and this can be very hard if you’re on your own.”
Autism is an unseen disability, which means that outside the home parents and carers may have to deal with disapproval from people who don’t understand the situation. This in turn can lead to isolation. Lintilla says the NAS helpline gets many calls from parents and carers who have concerns about leaving the home because they worry about other people’s reactions to their child’s behaviour.
Many adults with autism live with their parents. “The NAS receives thousands of calls from carers of adults with autism,” says Lintilla. “One of the big challenges for these carers is the lack of services and support for adults with autism.”
Asking for help
Asking for help is a positive step that could make your situation less stressful.
- Make sure you get the benefits you are entitled to. As a carer, you could be entitled to Carer’s Allowance and the person you care for may be entitled to Disability Living Allowance. For more information, see Carers Direct: Carer’s Allowance and Carers Direct: Disability Living Allowance or call the Benefit Enquiry Line on 0800 882 200.
- Ask your local authority for a carer's assessment. This determines what help you receive from social services, including respite care. For more information on assessments, see Carers Direct: assessments.
- Call the NHS Carers Direct helpline on 0808 802 0202 (Mon-Fri 8am-9pm, Sat-Sun 11am-4pm, calls are free from UK landlines) for confidential advice on any aspect of caring, including assessments, benefits, direct payments, individual budgets, time off and maintaining, leaving or going back to work or education.
- Call the NAS on 0845 070 4004 (Mon-Fri 10am-4pm, calls are charged at a local rate from UK landlines) for advice on all aspects of caring for someone with autism, including behaviour management strategies, respite care and obtaining financial help.
- Talk to your GP who can help you, if necessary, with any issues affecting your own health and who may be able to refer you to a relevant support service such as a local carers group.
Taking a break
Because of the complex needs of someone with autism, parents and carers often find it difficult to entrust the person they care for to anyone else. But taking a break is really important for your own physical and emotional health. See if friends or family members can give you some time off to do the things you enjoy.
Your local authority or local support groups may be able to provide respite care. This is when a professional carer looks after the person with autism so you can have some time off. Depending on your circumstances, this may be offered free.
Make sure you eat well and get plenty of exercise. If you feel exhausted or down yourself, go to see your GP.
For more information on respite care and looking after yourself, ring the helplines listed above and see:
Help and support
Support from other parents and carers
Many people find it helpful to meet other people who've had a similar experience and share coping strategies. There are various types of support groups, including groups for all types of carers and groups specifically for the families and carers of people with autism.
- To find a support group in your area, see Carers Direct: peer support.
- Contact the NAS helpline (0845 070 4004, Mon-Fri 10am-4pm, calls are charged at a local rate from UK landlines).
- Visit The National Autistic Society’s autism services directory where you can search for local groups.
Help with behaviour
The NAS can provide advice on how to deal with challenging behaviour via their telephone helpline (0845 070 4004, Mon-Fri 10am-4pm, calls are charged at a local rate from UK landlines). There is also a detailed section on understanding behaviour on their website.
Telephone support
The NAS runs a parent-to-parent confidential telephone helpline (0800 9 520 520, calls are free from UK landlines). You can call at any time and leave a message. A volunteer will then phone you back when it’s convenient for you.
The service is provided by trained volunteers, who are all parents themselves of a child or adult with autism. They know what life can be like for families affected by autism and can talk through any issues, problems or feelings you are experiencing.
Online support
To talk online to other parents and carers, go to Talk About Autism, a forum hosted by Ambitious About Autism, the national charity for autism education.
NAS Help! courses
Help! courses are run by regional NAS teams across the country and are free. They are for parents and carers of children and teenagers who have obtained a diagnosis of autism. They last one day, two days, three days or six days. The courses deal with issues such as difficult behaviour, education and communication. They also provide an opportunity to meet other parents who live in your area.
The NAS also runs shorter seminars called Help! 2. These are open to parents and carers of both children and adults with autism. Subjects covered include sibling support, bullying, making visual supports, managing anger and adult life. A key aspect of the seminars on adult life is how to get help from social services. For more information, see the help! website.
