What is autism?
Everyone on the autism spectrum is different, but all have difficulty with social interactions and communication, and in how they experience and understand the world around them.
There are around 11,000 autistic people in Surrey (about 1% of our population). Some people with autism can have challenging behaviour which can make life extremely hard for those looking after them. Other people are really withdrawn.
Coping as a carer for someone with autism
There is a lots of helpful information out there about supporting someone with autism (especially the National Autistic Society in Surrey), but a lot less for you, as the carer and wider family.
The strain of coping, often for many years, for someone who sees the world so differently, or appears unresponsive or destructive, can be huge. You may feel you spend a great deal of your time fighting to get the support and help both you and the person you support need.
The person you care for may not want outside support or may struggle to engage with services or new people, making it harder to get support and a break.
It’s also not uncommon for there to be more than one person with autism in a family. This can all put a great pressure on family life.
If you are caring for a person with autism, you can ask for a carer’s assessment from social services to discuss how your life is impacted by your caring role and get extra support if you need it, even if the person with autism doesn’t want an assessment for themselves.
This should mean support and help for you as a carer.
Many people with autism can become more independent, with the appropriate support, and services in place. It’s important that your experience as the carer (and that of any other family members) is listened to in any plan for the person with autism. As a carer you can feel ‘battle-weary’ at times, but you are the expert in supporting your loved one, and professionals should listen to and understand your knowledge and experience, and appreciate your role and needs.
Looking after yourself
As with all caring, it’s so important to also look after yourself. Caring for someone with autism can be very demanding, mentally and physically, and often isolating. You may find you prioritise their needs over your own. It’s hard, but try and find time for your own health, relaxation and social life.
Support from Action for Carers
We can talk to you about your caring situation and suggest ways to help, let you know about ACS events and support groups, as well as signpost you on to further sources of help, from the council, NHS and other charities and community groups.
We have support groups running regularly for carers looking after someone with autism, including specialist groups for carers of children and young people . It’s a chance to talk to others who understand, and share tips and advice. They are very relaxed, informal get-togethers – held at places like local cafes, and now on Zoom.
If you can’t get to a group you may find the National Autistic Society’s on-line community of help. It’s a forum for people to chat and share advice, and has a dedicated section for parents and other family members.
Action for Carers often run events for carers of people with autism, such as information days or workshops, usually with guest speakers.
We also have general events that may help you, about looking after yourself as a carer, and social activities. Take a look at all our upcoming events.
For younger carers
Many young adult carers, and carers under 18, are caring for someone with autism, often a sibling. We have specific support for both these groups with our Young Adult Carers service and Surrey Young Carers. It can be hard to have someone with autism in the family, but we have information, events and social activities to help you as a young person in this situation.
Information and signposting
We can give you information and signpost you to other sources of support. A key source of support is the National Autistic Society.
National Autistic Society
The National Autistic Society can help you if you’re caring for someone with autism, or related disorders. The helpline number is Helpline 0808 800 4104. Their website has specific information on caring matters. The Society also has support operating in Surrey:
Apeer is a non-profit Surrey organisation set up to benefit girls and women with Autism Spectrum Condition (ASC) and other neurodiverse conditions, and those around them, including their families and professionals. They provide online and face-to-face sessions and programmes, allowing autistic and neurodiverse girls, teens and women – and those around them – to enjoy activities, receive support, and connect.