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 Other people are really withdrawn.
See the National Autistic Society’s definition of autism.
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.
Now in my sixties, thinking about my own autistic son’s future becomes more of a concern. I tire more easily and have arthritis, and the energy needed to be his full time carer for his physical, emotional and social needs has become more difficult.
Carer’s Assessment
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.
The National Autistic Society has an active Surrey branch. They run events, and information sessions in Surrey, and have support groups. They also have an online forum for people in Surrey.
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.
Support 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.
I’ve got more ideas of how to manage future issues we might face and I have a reduced sense of stress.
Online forum
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.
Events
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.
T always enjoys going to the youth club; he always has a smile on his face when he comes out. It improves his confidence and self-esteem. He loves that this is just for him and separate from anything else that involves his brother. A lot of T’s life revolves around his brother – his appointments, his mood swings; it’s a very full on and stressful environment. He can just be himself at your events. He can relax. He always smiles when he talks about the games, the friends he’s made, and how friendly the staff are. Nothing will ‘fix’ our situation, but it helps hugely for T to have a fun, safe and supportive outlet and break, that he deserves. Thank you.
Information and signposting
We can give you information and signpost you to other sources of support.
Learning Disability and Autism Information Hub
Surrey County Council have a hub for people to find out more about learning disabilities and autism and includes a range of resources in accessible formats.
Learning Disability and Autism Hub
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:
National Autistic Society Surrey
Appeer
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.