Caring for someone with autism

If you care for someone with autism, your main concern will be how best to support them. However, you will both benefit from getting help for yourself.

There’s no denying that looking after someone with autism can be demanding, and it can put considerable strain on relationships.

Lintilla Turner, senior helpline adviser for The National Autistic Society (NAS) says: “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.

“Coping with behaviour issues in the home can be very challenging. 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"  it's a condition that can be very disabling, but gives no outward physical signs. This means that outside the home, parents and carers may have to deal with disapproval from people who don’t understand the way people with autism can act and behave.

This sort of reaction can make both the person with autism and their family carers unwilling to leave the home, according to Lintilla. She says the NAS helpline gets many calls from parents and carers who face this problem, and it’s an issue that can lead to the whole family becoming socially isolated.

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 the condition.”

Ask for help if there’s autism in the family

Asking for help is a positive step that could make your situation less stressful. Here are a few tips that can help both you and the person you look after: 

  • Get the benefits you're entitled to. As a carer, you could be entitled to Carer's Allowance, and the person you care for may be entitled to Personal Independence Payment.
  • Ask your local authority for a carers' assessment. This determines what help you receive from social services, including respite care.
  • Call the Carers Direct helpline on 0300 123 1053 (Mon-Fri 9am-8pm, Sat-Sun 11am-4pm) 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.
  • Talk to your GP about any issues affecting your own health; if necessary, they can refer you to a relevant support service.

Taking a break from caring

Because people with autism have complex needs, parents and carers may find it difficult to entrust the person they care for to anyone else. However, taking a break is really important for your own physical and emotional health. Friends or family members will usually be willing to give you time off to do the things you enjoy – and they will also be the ones that the person with autism knows and trusts.

Your local authority or local support groups may also be able to provide professional "replacement care" (home care), so that you can have some time to yourself. This may be offered for free, depending on your circumstances.

Make sure that you're eating well and getting enough exercise. If you feel exhausted or down, see your GP.

Read more about getting time off from caring, or read the advice from the NAS on short breaks and respite care.

Help and support for carers

Many find it helpful to meet other people who have had a similar experience and share coping strategies. There are various types of support groups, including those specifically for the families and carers of people with autism.

The NAS has an autism services directory where you can search for local groups. Alternatively, you can call the Society’s helpline for advice on (0808 800 4104  calls are free from UK landlines).

The helpline can also advise on how to deal with challenging behaviour, or you can read about understanding autistic behaviour on the NAS's website.

The helpline is staffed by trained volunteers, who are all parents 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 for people caring for someone with autism

To talk online to other parents and carers, go to Talk about Autism, a forum hosted by Ambitious about Autism, which is the national charity for autism education.

Page last reviewed: 07/05/2014

Next review due: 07/05/2016

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