Autism information sheet and care tips.
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.”
At Three Sisters Care we have support workers who are especially trained in caring for adults with autism. Currently we support young people who are on the more severe on of the spectrum, and you are welcome to meet some of these support workers/care workers and ask about their experienced so we can work together to create an individualised care package for your loved on.
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. If this sort of reaction makes you or your relative with autism unwilling to leave the home, we might be able to help with that too.
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.” At Three Sisters Care we have support workers who are experienced with escorting adults with autism out sod ether home, so that your loved one can access the community and participate in diverse social and cultural experiences. We understand that sometimes they might display challenging behaviour, and our workers are trained in how to deal with this an die even sometimes provide two support workers for social activities if the situation calls for it.
How can I pay for all this?
There are two ways you can get support to pay for care if you can’t afford to pay yourself.
Firstly, get the benefits you're entitled to. Personal Independence Payment includes an element for carers’ costs. Secondly, your local authority is responsible for ensuring that anyone who needs care receives it and id you are on a low income, they will even pay for it. Please see our page on Paying of your care for links to the adult social services apartment sin all the London boroughs. Or call us and we can help put you in touch.
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 may also be able to provide professional "replacement care" (home care), so that you can have some time to yourself. They usually call this respite care so ask about this too when you approach them.
Help for you
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.
To talk to us about a support plan or care or support package for your relative with autism, please call and speak with our Care Manager, Una Court, on 020 770 6057 or email her on firstname.lastname@example.org.
This page is based on advice from NHS Choices