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The Pegasus Psychoeducational Programme for Young People Diagnosed with Autism Spectrum Condition
To promote empowerment and reduce self-stigma when a young person is diagnosed with autism spectrum condition (ASC) it is essential that they receive psychoeducation, to help them learn about their diagnosis in a positive way. Until recently there were no evidence-based guidelines on how to communicate the diagnosis of ASD to children or their parents. Neither were there any psychoeducational packages available for this purpose. We designed and evaluated PEGASUS, a group psychoeducational programme for young people with ASC. PEGASUS focuses on capacities as well as difficulties: it emphasises that having ASC means being different, but not inferior, to people without ASC. It is aimed at enhancing self-efficacy and development of compensatory strategies through understanding of individual strengths and areas of specific support needs.
Objectives:
The study’s main objective was to evaluate the efficacy of PEGASUS. The design of our novel intervention is based upon principles of self-management and cognitive behavioural therapy (CBT). The programme comprises 6 weekly sessions, each lasting 1.5 hours with separate parallel sessions for children and for parents. We aimed to evaluate the acceptability of the intervention to children and their parents. We aimed to evaluate the extent to which participants could acquire a balanced understanding of the child’s unique strengths and difficulties and to enhance self-management strategies tailored to that child’s individual needs.
Methods:
In total, 48 children (9-14 years) with diagnoses of High Functioning Autism or Asperger’s Syndrome and their parents were recruited. Half were randomised to attend the PEGASUS groups and half to the control group, in which they were offered no input over and above “treatment as usual”. In total, five PEGASUS groups each including 4-6 children were run. Primary outcomes are of ASD knowledge and ASD-related self-awareness were assessed using a questionnaire specially developed for this study (the Autism Knowledge Quiz). This was completed by both children and their parents. Children also completed the Rosenberg Self-Esteem Scale, a self-concept scale and the Strengths and Difficulties Questionnaire (SDQ). Parents completed the SDQ, the Social Responsiveness Scale, the Parental Stress Index, a measure of parental self-efficacy and a measure of utility of ASD diagnosis. Data were collected at 3 time points: at baseline, after 3 months (i.e. immediately post-treatment) and at 6-month follow-up, by researchers blind to group allocation. The Vineland Adaptive Behaviour Scale was administered at baseline and at 6-month follow-up.
Results:
At the end of PEGASUS, ASC knowledge (β=.29, p<.001, 95% CIs [.13, .44]) and ASC self-awareness (β=.42, p=.001, 95% CIs [.17, .67]) increased significantly for those who attended PEGASUS (n=24) compared to controls (n=24). This effect persisted at follow-up, three months after PEGASUS ended.
Children who attended PEGASUS reported more ASC-related personal strengths than did controls and PEGASUS did not cause any reduction in self-esteem.
Conclusions:
PEGASUS enhanced participants’ general knowledge of ASC and awareness of their own unique strengths and difficulties. This RCT provides initial evidence for PEGASUS’s efficacy as a psychoeducation programme for people with ASC.