Monday, 10 December 2018

Communicationabilities of children with Sotos Syndrome: Research Summary

Chloe Lane, Jo van Herwegen & Megan Freeth

Sotos syndrome is a congenital overgrowth syndrome associated with intellectual disability. Previous research has reported that individuals with Sotos syndrome often have communication impairments and delayed language development. However, the nature of these difficulties has not been explored in detail. Language and communication skills are fundamental for human interaction. Effective communication can facilitate learning and enable individuals to share information and ideas so it is important to identify the extent to which children with Sotos syndrome struggle with language and communication, as difficulties may impact upon learning and social development.

Two important communicative abilities are language structure and pragmatic language. Language structure refers to understanding the rules governing language, such as the ability to construct coherent sentences in which words are used in the correct order. Pragmatic language involves understanding how to use language appropriately, such as using language that is appropriate to the context. Some individuals may have better language structure skills or pragmatic language skills, so difficulty with one does not necessarily mean that an individual will also struggle with the other. To date, these communication skills have not been investigated in individuals with Sotos syndrome. So, the aim of our research was to establish whether children with Sotos syndrome have difficulty with these skills and if so, whether particular aspects of language and communication are more problematic than others.

Our study included 31 children with a diagnosis of Sotos syndrome, ranging in age from 4 – 16 years. Communication abilities were assessed using a questionnaire (The Children’s Communication Checklist, second edition (CCC-2)), which was completed by the parent or caregiver of each child. The CCC-2 has 70 questions which are designed to assess a range of communication abilities, including both language structure skills and pragmatic language skills, as well as social relations and restricted interests.

 In terms of overall communication skills, the findings identified that the majority of children with Sotos syndrome were reported by their parent or caregiver as having difficulties with language and communication. This was defined as having greater difficulty with language and communication than typically developing peers of the same age (children the same age with no diagnosed conditions). There was no difference between overall language structure skills and overall pragmatic language skills, indicating that children with Sotos syndrome have similar difficulty with both of these aspects of language and communication. Furthermore, the findings identified that language structure skills predict pragmatic language skills, meaning that better language structure skills result in better pragmatic language skills for children with Sotos syndrome.

Four specific language structure skills (speech, syntax, semantics and coherence) were compared in order to see whether children with Sotos syndrome had particular difficulty with any of these specific skills. The findings indicated that the participants were reported as having a similar degree of difficulty with all of the skills. Comparisons were also made between the four specific pragmatic language skills (inappropriate initiation, stereotyped language, use of context and nonverbal communication). The findings identified that children with Sotos syndrome were reported as having greater difficulty with use of context and nonverbal communication, compared with inappropriate initiation and stereotyped language. Furthermore, participants were reported as having particular difficulty with social relations.

Overall, the findings from this research demonstrate that the majority of children with Sotos syndrome struggle with language and communication skills and will therefore require support with the development of these skills. In particular, children with Sotos syndrome have difficulty with the consistency of communication across different situations, with understanding and using nonverbal communication, such as eye contact, gestures and facial expressions and with forming and maintaining relationships with peers.

For the full paper, please see:

Lane, C., Van Herwegen, J. & Freeth, M. (in press). Parent-reported communication abilities of children with Sotossyndrome: Evidence from the Children’s Communication Checklist-2. Journal of autism and developmental disorders. doi:10.1007/s10803-018-3842-0

Thursday, 31 May 2018

Autistic people's perspectives on stereotypes


Summary of our new research paper, published in Autism

Stereotypes are society’s beliefs about group members. People often use stereotypes to inform the impressions they make of others. In this study we asked autistic people how they think they are perceived by others and what they think the autistic stereotypes are. It is important to know how autistic people think that they are perceived by others as this helps us to understand the nature of autistic people’s experiences. To do this we interviewed twelve autistic adults and analysed the data using Interpretative Phenomenological Analysis (IPA). IPA is an approach that enabled the researchers to find out about and understand autistic people’s lived experiences. Three main themes emerged from the analysis of the interviews. These were: (1) The primary stereotype is that autistic people are ‘weird’, (2) Autistic stereotypes have negative effects and consequences and (3) Autistic people are heterogeneous.  
Our findings indicate that negative perceptions of autistic people may lead to negative, prejudiced, behaviour if these negative perceptions are not challenged. One participant expressed frustration with how restrictive stereotypes can be, in that if autistic people behave in a manner that is considered to be counter-stereotypic, then they may not be considered autistic at all. Our study highlights that if autistic people were to internalise the negative stereotypes of autism they perceive, or believe them to be true, this will likely have a negative impact on their self-identity and behaviour. Participants tended to express the view that their autism was only one small part of autism. Some participants felt that they fit the stereotypes they described, or that certain autistic stereotypes may be accurate. However, some autistic people felt that they only identified with certain stereotypical traits, or none at all. The study therefore demonstrates the importance of viewing autistic people as individuals who experience shared traits but who are also diverse and unique.
Please e-mail Caroline Treweek ( or Megan Freeth ( for a copy of the paper.


Friday, 16 February 2018

Eye-tracking face-to-face conversations with autistic adults

Summary of our new research paper

Effective communication involves attending to both verbal and non-verbal cues, such as facial expressions and gaze direction. Faces can convey a person’s thoughts and intentions or their emotional and mental state. In this study we investigated whether some of this information tends to be missed by autistic adults during a face-to-face conversation. An experimenter systematically modified her gaze direction between looking directly at a participant’s eyes or averting her gaze away from the participant’s face at pre-determined points during a face-to-face conversation with a participant. The participant wore an eye-tracking device which assessed exactly where they were looking.
We found that when the experimenter looked directly at the participant’s eyes, autistic adults tended to look at the experimenter’s face less than neurotypical adults did. However, when the experimenter averted her gaze, differences between groups in how much attention was directed to the face were minimal. Neurotypical adults had a distinct preference for the eyes vs. the mouth but autistic adults did not. Both groups tended to increase looks to the face when listening compared to speaking, indicating similar spontaneous conversation-phase attention modification. A particularly striking finding was how much attention strategies of autistic adults differed from one another. While some autistic adults’ social attention was at least as much as neurotypical adults, others made very little eye-contact throughout the whole conversation.
Our findings suggest that looking directly at an autistic adult’s eyes when having a conversation can cause them to miss opportunities, that they may otherwise take, to attend to information on a face.

Read the full article