Statement on language and participatory research

Our research shows that many people with lived experience of autism prefer the use of identity-first rather than person-first language (Bury et al., 2020; Kenny et al., 2016). We do also acknowledge that some people with a diagnosis of autism prefer person-first language. Where it is practical, we use each individual’s preferred language.

For more detail on our research into language preferences, see Dr Simon Bury’s 2020 paper summary.

Language paper summary

In communications intended for a general audience, our representatives will avoid:

• the use of ‘disorder’ and ‘condition’
• using ‘deficits’ when describing characteristics and traits associated with autism.

In 2023, we established our Autvisory Committee as a stakeholder reference group to meaningfully include Autistic people and their families in all stages of the research-to-practice lifecycle. The group comprises nine Autistic adults and is co-chaired by Associate Professor Josephine Barbaro and Perrin Date. The Autvisory Committee is working with the co-chairs to inform and guide an OTARC Participatory and Inclusive Research Framework, and provide expert lived-experience advice on strategic opportunities.

We have recruited Autvisors with consideration of communication and access needs, socioeconomic and educational background, disability, identity (including race, religion and culture), gender, age, body shape/size, and LGBTQIA+ membership to ensure that a diverse range of Autistic people are represented on the committee.

Improving quality of life through neurodiversity-affirming partnerships

The Autistic and autism communities consistently identify quality of life as a top priority. Yet, no evidence-based support programs have focused directly on improving the quality of life of Autistic children and their families, until now.

Bloom is a neurodiversity-affirming support program led by the Endowed Chair for Autism Research, Professor Dawn Adams. The program is co-produced by a neurodiverse team that includes Autistic, otherwise neurodivergent, and neurotypical researchers. Additionally, Bloom collaborates with both Autistic-led and non-Autistic-led organisations. The content of Bloom is based on what the team learnt from 57 Autistic adults and parents of Autistic children (70 hours of interviews), ensuring the program is grounded in lived experience. The team’s commitment to inclusive design, from initial development through to sharing results, was recognised with the 2024 Autism CRC Inclusive Research Practice Award.

The program consists of eight weekly, two-hour sessions co-delivered by an allied health professional and an Autistic Guide (Autistic adult). This co-delivery model is central to Bloom’s success, bringing together professional insight and lived experience in a way that builds trust, connection, and shared understanding.

Parents who participated in Bloom consistently described it as a safe, inclusive, and transformative space.

I am in awe of how well they facilitated this. Because of all… the different communication ways and the extremely safe space that they created was just brilliant. - Riley

Others highlighted the power of connection:

[The inclusion of Autistic perspectives in Blooms design and delivery] in itself was very, very helpful for me in that particular time in my journey. – Sammie

Feedback from parents, Autistic Guides, and allied health professionals showed Bloom was:

• feasible (high retention, attendance, and completion rates),
• acceptable to participants, and
• delivered with high fidelity.

Importantly, parents reported improvements in child, parent and family wellbeing as well as family and child quality of life, an outcome rarely measured. For the children parents reported improvements in:

• Global health
• Emotional distress (depression, anger)
• Wellbeing (life satisfaction, meaning and purpose)
• Social functioning (family).

Facilitators and Autistic Guides shared that Bloom enriched their personal and professional development. For some, it was deeply reflective and healing:

There was more pride, more acceptance of themselves as well. – Hannah

It was a healing journey. – Hannah

unpacking and reframing ourselves in better ways. – Jin

Bloom is a model for what inclusive, co-designed supports can look like. It moves beyond consultation toward genuine collaboration, setting a new standard for equity in autism support.

As one facilitator expressed a desire to see:

Bloom, big and out and in the community and easily accessible – Jin

We do too. With the strength of this co-produced, evidence-based approach, we are one step closer to making that happen.

Supporters

Griffith University, Macquarie University, La Trobe University, Giant Steps, Reframing Autism, Children’s Health Queensland, and the STEPS Group Australia.