Tuesday, 1 April 2014

Will the siblings be OK?

At a recent autism conference for parents and professionals, one of the speakers was a clinical psychologist and also sister of a young man with autism. This speaker gave an engaging presentation about being an older sister. Although there were clearly challenges for the speaker and other siblings like her, she ended up suggesting that parents needn’t worry so much because “the siblings will be fine”.

My presentation followed this speaker’s, and I was talking about siblings too. It struck me what a useful summary statement she had made.

I have recently completed a research evidence review about young siblings (children and adolescents who are brothers or sisters) of children with intellectual disability or autism. This has been published by Sibs, and is free to download. The report includes a summary of the research evidence, and some practical and future research recommendations. You can download a pdf copy of the report by following this link:

We also have two new research papers about to be published that are also focused on well-being in siblings (of children with autism). You can read the summaries of these studies by following the links below:

Three different perspectives on whether siblings are doing OK

The two research papers mentioned above are drawn from a larger study of families of children with autism that we carried out for Mike Petalas’ PhD a few years ago now. As a part of the study, we asked mothers to rate the psychological adjustment of the sibling in the family who was the closest in age to the child with autism. We also asked fathers to do the same thing, and to think about the same sibling. Finally, if the siblings were at least 11 years of age we also asked them to tell us about their own well-being.

Mothers, fathers, and siblings themselves all used the same measure of psychological adjustment – the Strengths and Difficulties Questionnaire (see http://www.sdqinfo.org/). This questionnaire measures psychological difficulties (conduct behaviour problems, hyperactive behaviours, problems that children may have with their peers, and emotional problems) and strengths (children’s pro-social, or positive social behaviour). Each of these five domains can be scored separately, and you can also generate a “total difficulties” score by combining the four psychological difficulties domains. The other very useful thing about the SDQ is that it has been used in several large scale studies of British children and so there are data available about what we can expect for typical children in the UK in terms of their psychological adjustment. We were interested in comparing reports about the psychological adjustment of siblings of children with autism with these “normative” data for British children. 

Each of the scores that are obtained from the SDQ can be converted to show whether (or not) a child is being reported as having problems at a level that would indicate some concern about the child’s behaviour or emotional problems. This means we can look at whether the proportion of siblings of children with autism scoring at high (worrying) levels on the SDQ is any different to the proportion of high levels of problems we would expect anyway for British children.

The following graph shows the proportion (%) of a sample of 168 siblings of children with autism whose mothers reported behavioural and emotional problems for the sibling at levels that might indicate concern. So, this is the first of the three perspectives – what mothers say:
There are two points I think are important to consider from these data. First, across all of the domains of psychological adjustment rated by mothers the majority of siblings DO NOT have concerning levels of problems. Second, compared to the normative data (what we’d typically expect for British children generally), siblings of children with autism are no worse off in terms of hyperactive behaviours and problems with peers. However, mothers do report these siblings as having more emotional problems and more conduct behaviour problems (and more total difficulties) than British children generally, and also as having lower levels of pro-social behaviour.

Within the same families, and focused on the same siblings, we also had SDQ ratings completed by 130 fathers. This is the second perspective (the proportion [%] of siblings with concerning levels of problems) – what fathers say:
These data from fathers about siblings of children with autism lead to three key observations. First, again it is important to say that the vast majority of siblings are perceived by fathers to be OK – they DO NOT have concerning levels of problems. Second, fathers think that siblings have fewer problems than do mothers. Third, as with mothers, fathers do report that siblings of children with autism have more problems than typical British children but this turns out to be only for emotional problems and lower levels of pro-social behaviour.

Again, from the same families, 60 older siblings (11 years of age or older) completed SDQ questionnaires about themselves. This is the final and third perspective (the proportion [%] of siblings with concerning levels of problems) – what siblings themselves say:
Three observations again can be made about these data from siblings. First, the vast majority of siblings are NOT reporting levels of problems at concerning levels. Second, siblings themselves report a lower level of problems than that suggested by their mothers and fathers. Third, it turns out that the only SDQ domain where siblings report a reliably higher level of problems than typical British teenagers is for problems with peers.

Conclusions – it depends who you ask

The data from our two research studies also lead to conclusions similar to the research review published by Sibs. Mothers, fathers, and siblings of children with autism themselves all agree that problems of psychological adjustment are by no means inevitable for siblings. In fact, all agree that the vast majority of siblings are doing OK.

Mothers and fathers in particular do agree, however, that siblings of children with autism have more psychological adjustment problems than British children generally. Siblings themselves report slightly more problems than typical young people in the UK, but these differences are not pronounced.

Mothers tend to think siblings have more problems than do fathers, and siblings themselves report even fewer problems. We cannot tell who is “right”; who is giving the most accurate report of siblings’ psychological adjustment. In many ways, this does not matter because the main point is that the answer to the question of whether siblings are doing OK depends very much on who you ask. It is important to get multiple perspectives in any clinical or research setting since asking only one person (mother, father, or sibling) will not give the full picture.