Characteristics of Autism in Sotos Syndrome

 

 

Lane, C., Milne, E., & Freeth, M. (2016)

Research Summary

 

Sotos syndrome is a congenital overgrowth disorder with an incidence of approximately 1 in 14,000. The syndrome is associated with intellectual disability. Our recent review of research focusing on cognition and behaviour in Sotos syndrome identified several behavioural issues that may be common in individuals with Sotos syndrome. These were aggression and/or tantrums, autism spectrum disorder (ASD), attention deficit hyperactivity disorder (ADHD) and anxiety. Previous research has identified that there may be an association between Sotos syndrome and ASD but the majority of studies have explored this relationship using small groups of individuals with Sotos syndrome. The aim of our research was to investigate this relationship in a large group of individuals with Sotos syndrome.

ASD is a developmental disorder which is characterised by social communication impairment and restricted interests and repetitive behaviours. Many syndromes have been identified as having an association with ASD (e.g. Fragile X syndrome, Cornelia de Lange syndrome and Angelman syndrome). In order to better understand behaviour in Sotos syndrome, we investigated whether individuals with Sotos syndrome experience difficulties with social skills, restricted interests and repetitive behaviours. These are behavioural issues that are typically observed in individuals with ASD.

Our research involved 78 individuals with a diagnosis of Sotos syndrome. Families were invited to take part in the research via the Child Growth Foundation (CGF; a UK charity that supports families of individuals affected by growth disorders) and advertisements on Sotos syndrome support groups on social media. Behaviour was assessed using a questionnaire which was completed by a family member of the individual with Sotos syndrome - The Social Responsiveness Scale, second edition (SRS-2). This questionnaire has 65 questions which relate to social skills, restricted interests and repetitive behaviours.

 A key finding from the research was that 65 of the participants (83.33%) were rated by their family member as experiencing difficulty with behaviours related to social skills, restricted interests and repetitive behaviours. This suggests that the majority of individuals with Sotos syndrome experience difficulty with behaviours that are associated with ASD. There was no difference in scores between males and females with Sotos syndrome which indicates that gender does not affect the presence of these behaviours in individuals with Sotos syndrome.

 As we had individuals with a wide age range in our research (2.5 – 50 years), we decided to see if age affected behavioural issues in Sotos syndrome. We split our participants into five age categories and compared the average score for the individuals in each category. We found a significant difference in scores between the categories, with more prominent behavioural issues reported in childhood (5 – 19 years), compared with early childhood (2.5 – 5 years) and adulthood (20 years and older). This suggests that behavioural issues in Sotos syndrome may improve with time, as an individual transitions into adulthood.

The findings from this research suggest that the majority of individuals with Sotos syndrome experience difficulty with social skills, restricted interests and repetitive behaviours. These behavioural issues are typically associated with ASD and it therefore seems that there is a significant relationship between Sotos syndrome and ASD.

For the full paper, please see:

Lane, C., Milne, E. & Freeth, M.(2016). Characteristics of ASD in Sotos syndrome. Journal of autism anddevelopmental disorders. DOI: 10.1007/s10803-016-2941-z

 

Students’ Stereotypes of Autism (Wood & Freeth, 2016): Summary of our new Open Access paper

Substantial gains have been made over the past few decades in improving understanding of autism. Most people are now aware of the existence of autism[1] and a range of high profile media campaigns are generally helping to improve public understanding of autism[2]. However, in the media particularly striking autistic individuals, for example those with savant skills or with particularly challenging behaviour, tend to be over represented[3][4]. 

We realised that before designing research interventions aimed to improve public perceptions of autism, we needed to know what the stereotype of autism is and whether any character traits that people associate with autism are seen as being particularly negative. Stereotypes are short-cuts or sets of traits and characteristics that society ascribes to a particular social group. When people don’t have direct experience of members of a particular social group, they often rely on stereotypes to guide judgements towards members of that social group[5]. 

So what is the “autistic stereotype”?

We focussed our recently published research on finding out what the stereotype of autism is among university students, and in particular those students who did not have direct experience of autism (weren’t themselves autistic and did not have a family member or close friend who was autistic) as these are the people who would most likely use stereotypes to guide their judgements. 163 students who had lived in the UK for at least 5 years completed our survey. The students were asked to report the beliefs that they felt society as a whole holds of individuals with Autism Spectrum Conditions. We asked the question this way as it has previously been shown that this is an effective way to accurately elicit stereotypes and reduce the likelihood that people will answer in line with what they believe a socially desirable answer to be[6]. 

We found that the stereotype was that autistic people have poor social skills, are introverted and withdrawn, are poor communicators, and have difficult personality traits or behaviours. It was notable that many of the positive skills and traits often expressed by autistic people, such as good attention to detail, honesty, good rote memory, enhanced perception, were absent from the stereotype. Only two of the top 10 stereotypic traits that emerged were rated as positive. These were “high intelligence” and “special abilities”. We hope that this research can be a starting point for improving perceptions of autism, forming the basis for interventions designed to reduce reliance on stereotypes of autistic people. We are now looking for ways to improve public perceptions of autism via research interventions to be conducted on people who are not autistic, and by asking autistic adults to discuss how they feel they are perceived by others in society. We need to break down the barriers that autistic people face on a daily basis and change societal attitudes so that neurodiversity is more effectively embraced!

For the full article see: Wood, C. & Freeth, M., (2016) Students’ Stereotypes of Autism. Journal of Educational Issues, 2 (2), 131-140.

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[1] Dillenburger et al. 2013

[2] https://www.theguardian.com/tmi

[3] Jones& Harwood, 2009

[4] Draaisma, 2009

[5] Brown, 1995

[6] Devine, 1989