Siblings of children with autism – heroes with needs of their own

Five children dressed in superheroes outfits

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New siblings tend to come with lots of joy and great expectations, but they also bring about huge changes in the family’s everyday life. Initially, the little one will obviously need the lion’s share of everyone’s attention, which in itself might present a major challenge to the whole family. Now, suppose this new sibling turns out to need much more long-term care and attention than anyone might reasonably have expected, especially when compared to other children of the same age. This would effectively mean that the initial stage never ends; that the parents (and everyone else) must continuously devote more attention to the child with special needs. So how do their siblings cope with this reality?

There is a great deal of research centred on the parents of children with disorders like autism, which shows what a significant impact this can have on the family dynamic and how stressful it can be for the parents. I am very interested in this myself and believe that society must do much more to ensure that parents are provided with coordinated support – not only for their children but for themselves as well. Many children with disorders have siblings who, even without any neuropsychiatric condition of their own, feel the effects of their sibling’s disorder in situations throughout life – not only at home, but also at school and among friends.

Therefore, I would like to focus specifically on siblings – those who have a brother or sister with autism or some other disorder that is not immediately apparent but still has a profound impact on the family’s everyday life.

I do not want any parent in this kind of situation to feel guilty. Parents usually go to great lengths to help their children and provide them with love. Likewise, I obviously do not mean to blame those personally affected with disorders like autism. Instead, I would like to turn our attention towards what the rest of us can do – friends, school personnel and other people outside the family.

According to a number of studies, siblings of children with disorders shoulder a great deal of responsibility and feel that they are expected to be more independent at an earlier age; findings which tend to align with typical accounts from everyday life. Sadly, some are even bullied for having a sibling who stands out from the rest. Some have to put aside their own needs and feel limited in what they can or cannot do – for example, it might not be possible to just go shopping or have friends over on a whim. On the other hand, many also highlight all the ways that the situation has enriched their lives, and how much stronger it has made them. One does not preclude the other.

So, what is it like in school for students whose siblings have autism or some other disorder? Having a stressful and difficult home environment can take a toll on both sleep and homework, affecting one’s performance at school. Students in need of special support are often defined as students with disorders, but I would argue that siblings of these students might also need special support, for the reasons listed above. This effectively means that teachers must be able to identify the needs of all their students, which tends to be easier said than done. That is why I believe the school health service must take an active role in addressing this issue as well.

There are groups specifically designed for siblings of children and adolescents with autism and other disorders. However, I know from experience that it can be difficult to provide a format that actually motivates siblings to participate in such groups, especially depending on which age group is involved. As such, I think our primary goal should be to recognise these children and adolescents in everyday life, whether in school, among friends or during other activities. That being said, I do believe that organised sibling groups can be an important and valuable piece of the puzzle.

So, what can we do?

I think there are a number of rather basic measures we could take to make things easier for these siblings. Simply talking to the teacher (or some other adult) every now and then about how things are at school – whether in class or during recess – can make a huge difference. Parents of friends can offer to drive and thereby enable participation in activities that would otherwise be impossible. I could go on, but hopefully the point should be clear by now. Help make life easier for the whole family – especially those oft-forgotten siblings.

Blog post by Gunilla Westman Andersson

Credit: Jan Olof-Andersson

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