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:
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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.
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