Quality of life and wellbeing of autistic individuals with complex support or communication needs

The perspectives of autistic individuals with complex support or communication needs are not always shared or heard, and there is relatively little known about their perceptions of life needs and outcomes. In response, the Australasian Autism Research Council (AARC) identified this as a research priority area. This project aimed to take the first step toward addressing the priorities set by the AARC by exploring how quality of life and wellbeing are defined by, and for, autistic individuals with complex support and communication needs. The project also looked at what factors may enhance or reduce wellbeing.

The study identified 236 research studies that investigated the quality of life and/or well-being of autistic people (aged 3–83 years). Ten per cent of the studies were conducted in Australia and only one study conducted in New Zealand. However, over 50% of the studies published were published in the last five years. 

Examining who is reporting on the quality of life or well-being of autistic people, we found that:

1. Proxy informants provided information in over 30% of the studies. 
2. Autistic individuals without any reported co-occurring conditions provided information in 31% of the studies. 
3. Autistic individuals with a co-occurring condition provided information in 34% of the studies. However, the co-occurring conditions that the autistic participants had varied significantly and even within these studies, autistic people with specific co-occurring conditions were sometimes excluded. 
4. Studies that did include autistic individuals with co-occurring conditions sometimes modified procedures or methods to be more accessible and inclusive. 
5. Few studies reported using community involvement to design studies, which may then be impacting on accessibility. 

This project is a foundational step that aims to inform future research in this area. By identifying those whose voices have not yet been heard, and the methods used to hear such voices, we can inform future research in a way that expands the perspectives reported, thereby ensuring the findings benefit all.