Updated: Jul 21
A Research Update
by Ellen Ridley, Prof Debbie Riby, Prof Sue Leekam
What was the purpose of the research?
In 2018 we asked parent members of The Fragile X Society to tell us about their child’s social interactions via an online survey. In this post we give an update on why we conducted the research and what we think our findings mean.
Navigating the social world is complex and relies on a range of social skills. We all vary in our social abilities and have different ways of interacting with others. For people with neurodevelopmental conditions, social skills and social behaviours may develop differently and this may have an impact on the flow of an interaction. We know that social interactions can be difficult for some children with neurodevelopmental conditions such as Fragile X Syndrome (FXS).
We were interested to find out how parents of children with FXS and other neurodevelopmental conditions would describe their child’s social interaction style.
But what do we mean by social interaction style?
We can think of social interaction style as our usual ways of interacting with people. To successfully navigate the social world we must adapt how we interact in response to factors such as emotional signals (e.g. facial expression) and familiarity of the other person.
Unusual or inappropriate interaction styles may place individuals in a socially vulnerable position.
What data did we collect and how?
We designed an online survey which asked questions about social interactions, social vulnerability and general background information.
Parents were presented with 5 descriptions of social interaction styles and asked to select one description that best described their child’s social interactions (see the Table below for these descriptions). We used items from the Social Vulnerability Questionnaire to examine levels of social vulnerability.
Parents were invited to complete the survey if they had a child (5-17 years) with a diagnosis of FXS, Autism, Williams Syndrome or ADHD. We selected these neurodevelopmental groups as previous research tells us that many people in these groups may have communication and relationship challenges.
We also recruited parents of children without a neurodevelopmental diagnosis to assess what social interaction styles and social vulnerability look like in the general population.
This sort of approach is referred to as a “cross syndrome design”. It is a valuable approach as it can tell us about potential differences in behaviour between groups as well as the commonalities.
In total 262 parents completed the survey, including 18 parents of children with FXS.
What were the social interaction style findings?
The findings for the FXS group are shown in bold in the Table at the bottom of the page (including examples of the different interaction styles). To summarise the FXS findings:
The majority of parents (40%) reported that their child had a passive style of interacting (generally does not initiate interactions but responds to them).
24% of parents endorsed an appropriate but shy style (interaction primarily with well-known people)
18% of parents endorsed an aloof style (tends not to interact)
18% of parents reported an active style but with unusual features (social approaches made but may be inappropriate)
Description 1 in the Table relates to a style that is appropriate overall. We found that no parent in the FXS group selected this as their child’s most usual style.
Crucially, parents across all neurodevelopmental groups reported a mix of social interaction styles.
What were the social vulnerability findings?
We found no meaningful difference in the level of social vulnerability reported by parents across the four neurodevelopmental groups. In other words, the groups showed comparable levels of social vulnerability.
A really important finding was that the level of social vulnerability in the neurodevelopmental groups was significantly higher than that reported for the group of children without a neurodevelopmental diagnosis.
The presence of an intellectual disability did not explain the elevated levels of social vulnerability (72% of children in the Autism group and 79% of children in the ADHD group did not have an intellectual disability).
When we examined the relationship between social interaction style and level of social vulnerability, we found that unusual styles (active-but-unusual, passive and aloof) all made an important contribution to level of social vulnerability.
What are the take away messages?
· Social interaction styles vary within and across the neurodevelopmental groups studied here
Very often neurodevelopmental groups are described in terms of the average person with a particular diagnosis. For example, Autism has traditionally been linked with a preference for social avoidance. While this may be the case for some autistic people, it certainly does not describe everyone with an Autism diagnosis.
More recent research is shining light on the vast variability within people with the same diagnosis, in many areas of behaviour as well as cognition. Our findings from this study lend support to this in that the children we studied did not neatly fit into a category of social style.
· Social vulnerability was evident across neurodevelopmental conditions and substantially higher than in children without a neurodevelopmental diagnosis
While social vulnerability has previously been documented in the Autism and Williams syndrome literature, for the first time we show evidence of social vulnerability in FXS and ADHD.
Such heightened social vulnerability in children with neurodevelopmental conditions demands further research. This study focused on the potential contribution of social interaction style to heightened social vulnerability. Going forward, it will be important to understand the potential role that other aspects of development play in making some children particularly socially vulnerable. For example, what role does intellectual ability play? What other social skills are important? And what about other aspects of behaviour such as heightened anxiety?
What if I want to know more?
The research was carried out by researchers at Durham University and Cardiff University.
For more information please contact Ellen Ridley, firstname.lastname@example.org
The study feeds into a larger project seeking to understand social vulnerability in children with neurodevelopmental conditions.
We give thanks to the families who completed the online survey and to the Fragile X Society for their support in recruitment.