I wanted to write something about siblings as I had a very intense experience with my daughter which I feel I should share. This information also applies to close friends, cousins or any children who are close to an autistic child.
I was sent some conference papers of interest from a friend in the USA – they were all really useful, but one in particular had a huge effect. The paper was about siblings – discussing the levels of understanding siblings would have about autism at different ages. What you tell your other child/ren about autism will depend greatly on how old they are.
It was mentioned that at 5 (my daughter’s age at that time) there were a few questions you could ask the sibling to gauge their understanding and open up discussion if necessary. First – just to ask if they had ever heard the word ‘autism’ – it is likely they might have no knowledge of the word, even though it might be used around them often – this was the case with my daughter. I asked did she know what was different about her brother – and she said ‘he can’t talk – he needs help to learn’. That was a good answer and demonstrated an appropriate level of understanding –The paper suggested you should reassure the sibling that they couldn’t ‘catch’ autism - that it was something you were born with, and I did so. The next part really blew me away – I asked her, did she know ‘why’ Archie couldn’t talk and she said ‘yes, I remember, I hit him on the head when he was a baby and you made me sit on the stairs’ – it was like a blow to my stomach! Of course I got a grip of myself, hugged her and reassured her it was nothing to do with that incident – and she visibly relaxed. Can you imagine the effect on her later in life if that had become buried in her sub-conscience?! Thank goodness I was sent the paper!
Anyhow, I’d like to recap on the main points of that paper and recommend a couple of books, I’d also recommend looking in your local area to see if there are any sibling support groups.
A pre-school age sibling may not know what the word ‘autism’ means – that is ok. Usually they will focus on some of the obvious and specific issues about their brother/sister – like ‘he rides a bus to school’, or ‘he spins a lot’ - and its fine to leave it there. At this age it is important they feel safe. You should give simple, concrete explanations. “Archie is shouting because he is cross”, “Archie is using pictures because he doesn’t know how to talk”.
Early Years children will begin to realise their brother/sister is different. They will look for explanations, and are starting to have simple understanding of cause and effect. This, along with their developing imagination, makes them prone to drawing false – and sometimes upsetting – conclusions. They also may begin to worry if they can catch autism, like a cold if they hear it referred to as an illness. They may worry they caused the autism with bad thoughts, or that it might be from eating ‘bad food’. At this age, children must be told autism is not something you catch, but are born with – again, simple, concrete explanations. You’ll probably need to discuss it several times before they really grasp what you are telling them. At this age siblings tend to notice most the behavioural problems and lack of speech – they don’t necessarily notice the failure to play or socialisation issues. They won’t be likely to think about the long term future for themselves or their sibling.
Children this age may feel fear, anger, jealousy, sadness or worry. They need reassurance and empathy from their parents and the opportunity to put their fears and distress into words without judgement.
Middle childhood (7 to 10), children are beginning to understand some of the facts about autism and will possibly appreciate the biological origin, the need for special education, and understand why you need to spend so much time. Implications for the family and the future will still not be clear – they will have some idea of the longer term, though the picture is likely to be sketchy.
In this age group there will be a dawning of recognition of the profound impact of autism on their siblings life, and some developing understanding about problems with intimate relationships in the future. At this age children are also much more likely to question the fairness of the situation in terms of parental time, who gets blamed for altercations, the difference between expectations of them regarding their behaviour in comparison to what is expected of their autistic sibling. Parents should consider disciplining the child with autism even if it is not effective as behavioural intervention – it will give the sibling a sense of justice and fairness. At this time parents should also be aware of the social impact of having a sibling with autism – children can find it embarrassing when their autistic sibling behaves strangely, or get annoyed when people keep asking them about it – they will need help from their parents in dealing with peoples responses, ways to explain matter-of-factly.
Pre-teens and teenagers are capable of understanding intellectually about autism, but are not adults and therefore lack the coping skills to handle the emotional experiences. The challenge now is not explaining the facts, but helping the teenager think about how his siblings’ autism impacts upon him and his family. They may well feel emotional pain thinking about their autistic sibling. They may worry that they will be expected to care for the sibling after the parents die, or if they will have autistic children – at this age we become capable of thinking about the distant future. These kind of concerns are difficult to voice through worry about upsetting parents or feeling ashamed. A parent bringing up these questions can help the feelings seem normal and acceptable. Teens are not always known for their openness and may only accept a few minutes of talk before they move onto other things. That’s fine. Give them time to think and they will be more likely to come back later with questions.
There is a lot more information about siblings – in particular, how to avoid them internalising their worries and emotions, which could lead to poor emotional and mental health in the book written by the author of the paper.
"Siblings of Children with Autism: A Guide for Families (Topics in Autism)"
Sandra L. Harris; Paperback
Also I recommend
“Everybody is Different” A book suited to 7-13 year old siblings, and “My brother is different” A book suited to Early Years siblings – both available from the NAS online bookstore www.nas.org.uk
If you have found this information useful, please consider making a small donation to Archie’s Learning to Live Appeal.
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