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 OTARC research into language preferences, see Dr Simon Bury’s 2020 paper summary.

Language paper summary

In communications intended for a general audience, OTARC will avoid:

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

In 2023, we established the 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.

In 2024, we will be recruiting a larger pool of people, with assistance from Autvisors who have indicated an interest in co-designing research and who will be our Community Research Partners. We will contact Community Research Partners to work with OTARC staff and students on specific research projects to ensure all of our research has involved Autistic community members in its design and delivery.

Understanding the experience of Autistic working mothers in Australia

This research project was spearheaded by Autistic Master of Clinical Psychology student (now PhD scholar) investigator Kate Gore and guided by supervisors Dr Melissa Gilbert, Dr Susan Hayward, Dr Rebecca Flower, and Associate Professor Josephine Barbaro; the focus was on exploring the experiences of Autistic working mothers. This study, deeply rooted in Kate's personal and academic background, prioritised participatory research design to address a critical gap in the existing literature at the intersection of motherhood, Autism, and employment.

Central to this participatory approach was the close collaboration with a dedicated Advisory Group comprising five Autistic adults. Their lived experiences and subject matter expertise played a pivotal role in shaping the research questions, interview guide, and recruitment materials, ensuring the project's relevance and cultural sensitivity. This collaborative design aimed to empower the targeted community and validate their perspectives.

The research team recruited 10 Autistic working mothers, aged 34 to 50, through social media, emphasising inclusivity and diversity in participant selection. The semi-structured interviews were tailored based on the Advisory Group's input to explore participants' experiences as mothers and employees separately. Ethical considerations, including participant debriefing, member checking, and fair compensation, underscored the commitment to respectful and inclusive research practices.

The research team employed inductive reflexive thematic analysis in the analysis phase, integrating participatory elements through member checking. Participants actively contributed to interpreting their interview transcripts, ensuring the findings authentically reflected their experiences. This participatory approach enriched the research process and amplified the voices of Autistic working mothers, fostering a sense of ownership and empowerment within the study.

This study has been published.

Publication summary Autism in Adulthood article