Post-diagnostic psychoeducation and autistic adult’s experiences of disclosure

Lay Summary
Literature Review
“Psychoeducation” involves to learning and understanding one’s own mental health condition and is a commonly used component in talking therapy. Some adult autism services within the UK routinely offer psychoeducation adapted for autism to support recently diagnosed autistic people to learn about autism and help them come to terms with the diagnosis. It is unknown whether autism psychoeducation for newly diagnosed adults is effective as no systematic review of the research literature has been done. The aim of this review is to find out whether autism psychoeducation designed for autistic adults without a learning disability is effective for improving autistic people’s quality of life and mental health, including depression, anxiety, and self-esteem. The review also explores whether psychoeducation increases acceptance and knowledge of an autism diagnosis.
The results showed that psychoeducation on its own or when combined with another common psychological therapy, such as mindfulness-based therapies and cognitive behavioural therapy, had some positive effects for improving depression, anxiety, and quality of life in autistic adults. Only a few studies reported data for self-esteem, knowledge, and acceptance. There were no effects on self-esteem but some positive effects were shown for knowledge and acceptance. Quality appraisal of the study indicated that study designs varied across studies and sample size were insufficient in some studies. Furthermore, there is currently no standardised tools for measuring knowledge and acceptance of autism which could have increased the risk of bias for these two measures. A further methodological limitation of the studies published to date was that only a very small number of studies involved autistic people in the design and delivery of the interventions.
Empirical Project
Increasing number of people are receiving diagnosis of autism in adulthood. However, there are very few studies exploring autistic adult’s experiences of “disclosure”, that is, to tell others about their autism. The aim of this study is to explore autistic adults’ experiences of telling other people that they are autistic after receiving their diagnosis as an adult. Twelve autistic adults were interviewed about their experiences of disclosing their diagnosis and Interpretative Phenomenological Analysis was used to analyse the data. The interviews showed that disclosure served different functions for autistic people, including allowing them to access support, to be themselves, and to help others. Autistic people telling others about their diagnosis require them to make decisions about things like how much information to disclosure and to think about feelings and reactions of others. Some people started telling others about their potential diagnosis even before a formal diagnosis is received. There are both good and bad sides of disclosure. Some are positive experiences, like feeling accepted and finding a community. However, sometimes experiences can be negative, such as people not believing them, and these are often because of people have assumptions about autism. These experiences could also be emotionally challenging for autistic people and can also stop autistic people from having their needs met. Autistic people varied greatly on the support they received around disclosure and more consistent post-diagnostic support is needed.