Quality of life for autistic people with complex support and communication needs

This research explores quality of life for autistic people who require intensive daily support and who communicate in ways that differ from the mainstream — through AAC devices, behaviour as communication, or supported decision-making. It centres the perspectives of these individuals, their families, and the people who support them.

The research question

Quality of life research in autism has historically focused on people who can articulate their experiences verbally and independently. Autistic people with complex support needs are routinely excluded from research, meaning policy and practice are shaped without their input.

This project asked: what does a good life look like for autistic people with complex support needs, and what gets in the way?

Key themes

Being heard and included: Many participants described the importance of communication that goes beyond words — and the failures of systems that only recognise verbal or written communication as valid.

Relationships and belonging: Close relationships with family, supporters, and peers were identified as central to quality of life — yet service systems frequently disrupt these through workforce instability and fragmented planning.

Control and choice: The ability to make meaningful choices about daily life — not just formal decisions — was identified as foundational. Over-reliance on others to interpret or proxy preferences undermines this.

Service adequacy: Families and practitioners described significant gaps in specialist support, including after-hours and crisis services, workforce skill levels, and transition points between services.

Who is listened to, and who is left out

The Easy Read summary — titled Research into autism: who is listened to and who is left out — addresses these themes in an accessible format for autistic people and families.