Our work revolves around caring for and supporting adults with learning disabilities, complex needs and associated challenging behaviour. Autism is one such condition that some of our service users have.
As autism is a spectrum disorder, the amount it affects someone varies, which often means individuals can remain at home and live their lives supported by relatives rather than coming under specialist care and support services such as ours. In the case of moderate to severe autism, however, it’s generally harder for parents and carers – and this is where services such as ours can be necessary.
For parents and carers who look after people with autism in the home, behavioural issues can pose problems. Carers may be faced with a number of problems ranging from toileting issues to self-harm – and having to deal with these on your own can be very difficult.
As autism is an ‘unseen disability’ – very disabling but with no external physical signs – outside the home, people will often not recognise the condition and there may be times when parents and carers meet dissaporval from people who aren’t aware of how people with autism can act and behave.
Those types of negavite reactions to an adult with autism can make their family and carers apprehensive about leaving the home. This may lead to the family becoming isolated; instances of this kind of situation arising have been cited by the National Autistic Society, with their helpline receiving calls from families experiencing isolation.
As is often the case, adults with autism often live with their parents, and one central concern among carers is a lack of services and support for adults with the disorder.
Families with an autistic member should ask for help
There are many ways you can help relieve stress that can build up from caring for someone with autism:
– Benefits are available and you should seek to ensure you are getting your entitlement: these include a Carer’s allowance, while the person you care for might be in line for a personal independence payment.
– Local authorities also provide a carers assessment to help you understand what help you can receive, including respite care.
– If you’d rather speak to someone on the phone, you can call the Carers Direct helpline on 0300 123 1053 for information on any aspect of caring.
Finding time away from caring
The needs of a person with autism are complex and therefore parents and carers may be reluctant or resist allowing the person they care for to be cared for by someone else. However, caring is a full-time job and can weigh heavily on physical and emotional health, meaning it is vital to take a break every now and again.
In such cases, friends and family can be called upon to help care and support the person while you take some time out, because they are often the ones who the person with autism knows and trusts.
Other lines of support include local authorities and local support groups who can often offer professional ‘replacement care’ so you can take a break. This may also be offered for free.
Exchanging ideas and resources
There are groups that offer a platform for parents and carers to share experiences and learn tips on how to care for an adult with autism. Look up a local group on the the national autistic society’s (NAS) directory, or use their helpline for advice on 0808 800 4104. This line also gives information about ways to manage challenging behaviour, or you can read more about autistic behaviours on NAS’s website. Other online resources include Talk About Autism, where you can talk to other parents and carers.