Can the PEGASUS Psychoeducational Programme Improve the Understanding, Well-Being and Functioning of Young People with ASD Diagnoses and That of Their Families? A Randomised Controlled Trial

Background: Despite the increased focus on early recognition and diagnosis of ASDs, very little is known about how to best help children integrate their “label” in a positive way, without negatively impacting on their self-esteem and identity. The very nature of ASDs, associated with impaired communication, insight and self-awareness, present a challenge for clinicians who are approached for advice on how to best communicate the diagnosis to the child. There is anecdotal evidence that person-centred psychoeducation, self management training and support after diagnosis can enable people to develop helpful perceptions of their psychiatric condition, and can alleviate feelings of isolation and stigmatisation (Chowdhury, 2003; Proudfoot, et al, 2009). However, currently there are no evidence-based guidelines for clinicians or parents on how to communicate the diagnosis of ASD to children or their parents. Neither are there any psychoeducational packages available for children that are designed both to prevent negative attributions associated with the diagnosis of ASD, and to increase self-awareness and coping strategies.

Objectives: The study aims to evaluate the efficacy of PEGASUS, a new group psychoeducational programme designed for children with ASD and their parents according to the principals of modified cognitive behavioural therapy (CBT). PEGASUS comprises 6 weekly sessions, each lasting 1.5 hours with separate parallel sessions for children and for parents. PEGASUS aims to enable children to acquire a more balanced understanding of their unique strengths and difficulties and to enhance self-management strategies tailored to the child’s individual needs by means of personalised ‘toolkits’ and, by extension, improve family functioning.

Methods: 48 children (9-14 years) with diagnoses of High Functioning Autism or Asperger’s Syndrome and their parents are currently being recruited. These families will be randomly allocated to treatment or control groups.  Treatment and control groups will be matched according to age, IQ, gender ratio and degree of autistic impairment. Those in the control group will receive ‘management as usual’.  Measures of ASD knowledge, self-esteem, functional adaptation and family functioning will be taken at pre-treatment, post-treatment and at 3-month follow-up. Outcome measures will be collected by researchers blind to group allocation.  

Results: The pilot study is currently underway involving 5 young children and their parents. Baseline data suggest 3 of the 5 parents were suffering significantly high levels of stress. Qualitatively, other clear themes emerging from parents are their desire and need for more support in explaining the ASD diagnosis to their children and feelings of isolation and helplessness. Groups for the RCT are due to start in January 2012 and pre-post data from three groups will be available for presentation at the conference.

Conclusions: PEGASUS is the first psychoeducational programme for children designed both to prevent negative attributions associated with the diagnosis of ASD, and to increase self-awareness and coping strategies. Furthermore, this is the first study to evaluate the efficacy of a psycho-educational programme around ASD diagnosis for children. This is a unique and potentially important study for evidence-based practise with children with an ASD diagnosis.