Social-emotional instability in individuals with Rett syndrome: parents' experiences with second stage behaviour.
BACKGROUND
While the medical profession often terms behaviours in individuals with Rett syndrome (RTT) in the second stage as 'autistic-like', parents disagree with this description. The present study focuses on a comparison of parents' experiences with the social-emotional behaviour of the child with RTT in the second and subsequent stages.


METHODS
In collaboration with the Dutch Rett Syndrome Organization, 51 parents of children with RTT in the Netherlands took part in the present study. Parents completed an online questionnaire to clarify their experiences of the social-emotional behaviour of their children during and after the second stage of RTT. Both quantitative and qualitative analysis techniques have been used.


RESULTS
The results of the paired-samples t-test show that parents see significantly less social-emotional behaviour in the children during the second stage of RTT than in the subsequent stages. Parents reported that their children did not seek as much interaction. From the parents' descriptions, it would seem that the children are willing but unable to interact with their environment.


CONCLUSIONS
Like previous research, our study leads to doubts about the appropriateness of the label 'autistic-like' for the behaviour of individuals in the second stage of RTT. While behaviours of individuals with autism and individuals with RTT may resemble each other, quality and intentions may differ. Still, future studies are needed for further clarification.
Department of Special Needs Education and Child Care, University of Groningen, Groningen, The Netherlands.
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Munde
Department of Special Needs Education and Child Care, University of Groningen, Groningen, The Netherlands.
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Vlaskamp
Department of Special Needs Education and Child Care, University of Groningen, Groningen, The Netherlands.
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Ter Haar
D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D018450:Disease Progression; D004644:Emotions / Q000502:physiology; D005260:Female; D006801:Humans; D010290:Parents; D015518:Rett Syndrome / Q000150:complications / Q000503:physiopathology*; D012920:Social Behavior Disorders / Q000209:etiology / Q000503:physiopathology*; D055815:Young Adult
Rett syndrome; autistic-like behaviour; emotionally sensitive; parents' experiences; social-emotional behaviour