The Pegasus Psychoeducational Programme for Young People Diagnosed with Autism Spectrum Disorder Enhances ASD Self-Awareness

Background:    There are several potential benefits of receiving an ASD diagnosis including access to funding and appropriate treatments. Increasing self-understanding and positive self-perception are additional important benefits for adults which have not been found to extend to children. One way to counter the phenomenon of young people feeling disengaged from or stigmatised by their ASD diagnosis is to offer them psychoeducation. Whilst psychoeducation is recognised as a sine qua non of good post-diagnostic care in ASD, there is currently no evidence-based practice in this area.  

Objectives:  We designed a manualised psychoeducational programme to teach young people with ASD about their diagnosis (level one psychoeducation) and to help them use this information to develop insight into their own unique collection of strengths and difficulties (level two psychoeducation). This programme is called PEGASUS - ‘PsychoEducational Groups for Autism Spectrum Understanding and Support. It is administered in six weekly group sessions, with parallel parent groups. PEGASUS has a strong focus on strengths, conveying the message that having ASD involves being different, but not inferior, to people without ASD. 

Methods:  48 children (9-14 years) with a diagnosis of ASD and their parents were recruited into a randomised control trial (RCT). Half were randomised to attend the PEGASUS groups and half to the control group, in which they were offered “treatment as usual” (TAU). Five PEGASUS groups each including 4-6 children were run. Primary outcomes were evaluated using the ‘Measure of ASD Understanding and Self-Awareness’ (MAUSA). Secondary outcome measures included the Rosenberg Self-Esteem Scale. Measures were collected blind, pre and post intervention. 

Results:  PEGASUS increased knowledge about ASD: Bootstrap multiple regression, controlling for ASD knowledge at baseline, showed a significant effect of group on ASD knowledge at follow up, β=.29, p<.001, 95% CIs [.13, .44]. PEGASUS increased ASD self-awareness:  There was a significant and substantial effect of group on the number of ASD strengths and difficulties listed by participants at follow up, controlling for this measure at baseline, β=.42, p=.001, 95% CIs [.17, .67]. This reflected a higher number of both ASD strengths (β=.41, p=.002, 95% CIs [.15, .67]) and ASD difficulties (β=.34, p=.001, 95% CIs [.08, .60]) listed by PEGASUS participants at follow up. PEGASUS did not change self-esteem or co-occurring symptoms of psychopathology: Controlling for baseline measures there was no effect of PEGASUS on self-esteem by self (β=.10, p=.404, 95% CIs [-.14, .35]) or parent (β=.12, p=.324, 95% CIs [-.12, .36]) report. 

Conclusions:  After PEGASUS, participants were able to name more autism-related strengths as well as autism-related difficulties compared to controls. ASD knowledge was also significantly higher in the PEGASUS group compared to the control group. Further, participants in PEGASUS did not show any reduction in self-esteem. This is an important finding, indicating that increasing insight about ASD facilitates the potential for self-efficacy and does not impact negatively on self-concept. This study is the first RCT to show the efficacy and benefits of using post-diagnostic psycho-education groups.