Caring for someone who is autistic can be very demanding and brings its own set of challenges. Everyone on the autism spectrum is different, but most experience difficulty with social interactions and communication, and in how they experience and understand the world around them.
The National Autistic Society has a great video (which can be seen here www.youtube.com/watch?v=RbwRrVw-CRo) on an introduction to autism for young non-autistic audiences, aiming to raise awareness, understanding and tolerance in future generations.
You may be a parent looking after a younger child with autism, or perhaps you look after an adult. No matter your situation, here are some resources and information that may help you:
Caring for a child who is autistic
Looking after a child who is autistic may mean you might need to spend a lot of time helping your child get the support they need. This can be very stressful and exhausting, so it’s important to remember to take time for yourself for your own health and wellbeing when you can.
You may find it helpful to chat to others in similar situations. We are currently running a virtual parent carer group which runs once a month online. Please call 0800 181 4118 for more details or have a look at our what’s on page – https://carersupportwiltshire.co.uk/whats-on/.
Some children find it helpful to meet other autistic children and to learn that they are not alone. The National Autistic Society (www.autism.org.uk/) has an Autism Services Directory (www.autism.org.uk/directory) that lists social groups, after-school clubs and support groups around the UK.
If you are concerned about your child’s education health or care needs, you can find out more information by contacting the early help advice team at Wiltshire Council: 0300 456 0108 or visit Wiltshire Local Offer (www.wiltshire.gov.uk/local-offer). You can also contact the Wiltshire SENDIASS team on 01225 307455, who can provide support with EHCP’s and school related issues.
The Wiltshire Parent Carer Council (http://www.wiltshireparentcarercouncil.co.uk/en/Home_Page) is a consultation and participation service for parent carers that works alongside Wiltshire Council, the NHS, and other services, to help shape better services for young people, aged 0-25 years with special education needs (SEN) and/ or disabilities. They can also offer specific advice and signposting on a range of local help/specialist services that are available. You can contact them by email (firstname.lastname@example.org) or by calling them on 01225 764647 (option 1).
The NHS also has a guide for parents looking after an autistic child which you can find here – www.nhs.uk/conditions/autism/autism-and-everyday-life/help-for-families/.
Caring for an autistic adult
It may be that your child has now turned 18 and you are still looking after them, or perhaps you look after an adult sibling, relative or friend.
There may be a lot of changes when an autistic person turns 18, they may see different doctors or health professionals or be moving to a different education setting. The NHS has a guide on changing from child to adult care when your child turns 18, which you can view here – www.nhs.uk/conditions/autism/autism-and-everyday-life/changing-from-child-to-adult-care/.
It is important to note that the general rights of parents and disabled children under 18 remain the same. Contact has some useful information on this on their website. For example, about how parents still have the right to request an assessment of their child’s needs (https://contact.org.uk/advice-and-support/social-care/how-to-access-services/needs-assessments/) and the local authority is still under a duty to arrange support and practical assistance (https://contact.org.uk/advice-and-support/social-care/what-is-social-care/) in meeting those recognised needs subject to criteria.
Once your child turns 18 you are also able to get a carers assessment from us at Carer Support Wiltshire to discuss your own needs and what may help you in your caring role.
The National Institute for Health and Care Excellence has a guide on diagnosing, supporting and caring for adults with autism, which you can access here – www.nice.org.uk/guidance/cg142/resources/diagnosing-supporting-and-caring-for-adults-with-autism-pdf-241814270149.
If you are looking after an adult sibling with autism, Sibs is a great website supporting siblings of disabled children and adults. They have handy guides for adult siblings (www.sibs.org.uk/support-for-adult-siblings/guides/), and support and advice for child siblings (www.sibs.org.uk/supporting-young-siblings/).
WSUN (Wiltshire and Swindon Users’ Network) (http://wsun.co.uk/wiltshire-autism-hub/) have set up the Autism Hub to provide information and support to autistic adults across Wiltshire.
Adult residential services:
There are different types of residential services your loved one may use as an adult. Residential services provide accommodation and support all year round. Supported living services are for autistic adults who need extra help to live in their own homes or within accommodation, whether as tenants or owner occupiers, living alone, or with others. There is also support in the community through day centres, social groups and more.
You can find out more about the National Autistic Society and these services here – https://www.autism.org.uk/what-we-do/adult-residential-services.
Caring for yourself:
When looking after someone else, it’s so easy to put your own needs behind everyone else’s, which can in turn severely affect your wellbeing and health.
Sometimes having the chance to talk to someone about how you’re feeling can really make a difference. Our Here to Talk service (https://carersupportwiltshire.co.uk/information-hub/here-to-talk/) allows you to chat with a trained volunteer, most who have personal experience with caring. To sign up, call us on 0800 181 4118, or email email@example.com
We work closely with GP practices across Wiltshire to ensure that carers receive support and good access to services through their local surgery. Many surgeries offer Carers Clinics where you can go along for routine health checks as well as an opportunity to speak to one of our Carer Support Workers. Ask your local surgery to see if they have one.*
If you feel low, anxious or stressed, it may be helpful to reach out to a mental health organisation that can help you. Read our resource page on mental health helplines, webchats and websites here –https://carersupportwiltshire.co.uk/resource-centre/mental-health/.
Advice for young carers and young adult carers
If you’re under 16 and looking after a sibling or other loved one who is autistic, have a look at our young carer website for advice and support (https://carersupportwiltshire.co.uk/young-carers/).
Autism programme providing education for families and carers
NHS England and partners across England have launched an autism peer education programme. It aims to build knowledge and understanding of autism and empower families and carers to advocate for autistic people they support to get the right understanding and adjustments in place across the services they use.
The regional Autism Central hubs deliver one-to-one and group sessions complemented by high-quality online learning and information on local services. Each session is delivered by family members and carers of autistic people who have been trained to share their knowledge and experience with others, as peer educators.
To find out more, visit the Autism Central website – www.autismcentral.org.uk