Thursday, 31 January 2019 is Young Carers Awareness Day. There are more than 700,000 young carers in the UK. A young carer is someone under 18 who helps look after someone in their family. We usually think of a carer as being a partner, or a child looking after a disabled parent. Although we wouldn’t immediately think of them as fulfilling the role of a carer, the brothers and sisters of a child with a disability will often pitch in and help their family in some way. They may have to provide emotional as well as practical support. Not just to their sibling, but also to their parents, who may be struggling to cope.
These young people are hidden carers. Cuts to local authority budgets mean that their numbers will continue to rise. Research shows that there has already been an increase in young carers looking after siblings. This is significant and cannot be ignored. Because it means that means there are more children who are struggling in school (it’s hard to concentrate when you have very grown-up worries, or when your sleep is affected) and more young adults not in education, employment or training because of their responsibilities at home. That can seriously affect their life chances and their mental health. We think these siblings need more recognition, and more help.
Not all siblings of children with autism have to take on a caring role. But almost all will be affected by their brother or sister’s additional needs in some way. Here’s how parents and carers can help them.
When your sibling has autism
When a child is diagnosed with autism, help and advice is available for their parents. There’s help and advice for the professionals who work with them too. However, not much help and advice is available for their siblings.
Having a brother or sister on the autism spectrum can be really difficult. Children may find it hard to understand and cope with the behaviours associated with their sibling’s autism. They may feel rejected if their sibling doesn’t want to play with them. They may feel frustrated when they don’t respond to their social advances in the way they would like.
Because a child with autism usually needs lots of help and attention, siblings can feel left out. They may have feelings of being neglected, or even start to think that their parents or guardians don’t love them as much as their brother or sister. They can experience jealousy, sadness, worry, fear, anger and lots of other emotions. Adults have a hard time putting their emotions into words, so imagine how much more difficult this is for a child! Children who have siblings on the autism spectrum might find it so difficult to talk about how they feel that they display their feelings through their behaviour instead. It is not uncommon for siblings of children with special needs to start behaving differently as a means of securing their parents’ attention.
How much should you tell your child about autism?
How much you give your child about their brother or sister’s autism will depend on their age and level of understanding. There are also different ways you can present this information. How you do it will very much depend upon the needs of the child.
Some will prefer to read a book. We have some suggestions for books for siblings on this site. Some children will prefer to watch a DVD, TV show or YouTube video. Others will be happy to discuss it face to face with you. If the last option is the case, it is a good idea to give a very basic overview of what autism is and how it affects their sibling. Then you can answer questions as they arise. When you do, be as honest as you can, and give them information in its simplest form.
Some suggestions on how to support siblings
- Explain to siblings that other people may not understand what ASD is, or know their brother or sister has it. Other people may react differently towards their sibling and that, sadly, sometimes people may react in an unkind way.
- Encourage them to talk about their feelings. Siblings may not feel comfortable talking to you about their feelings because they don’t want to cause you any added upset or worry. Encourage them to talk to someone else that they know and trust.
- They may find it helpful to talk to other siblings in the same boat as them. Or to talk to other people who really understand autism. We have a monthly support group for siblings at Toby House which members have found very helpful.
- Reassure your child that it’s okay for them to experience negative emotions like anger or sadness.
- Make sure they know that if you appear to be spending less time with them, it doesn’t mean you love them any less.
- Encourage them to interact with their sibling. Help them to understand their strengths, as well as their difficulties in having ASD.
- Give your child the opportunity to have their own space, time and privacy. Allow them to have a safe place to keep important personal items, especially if your child with ASD is prone to breaking or hiding things.
- Make individual time for them, explaining that this their time and not just a time to exclude their sibling with autism. You can make creative plans for activities you can do together and as whole family.
- Remember to praise your other child for all of their positive behaviour. By giving them very positive attention, you can help to stop them seeking your attention in other ways.
If you’d like to talk to someone or need advice on helping a child who has a sibling on the autism spectrum, do get in touch. You can call us on 0300 365 3055, or e-mail firstname.lastname@example.org.