Autism disclosure – the online conversation

Why

Autism disclosure relates to the sharing of an Autistic identity/autism diagnosis. This is a complex decision that can be positive and helpful, or create a lot of problems. As this is a complex decision, researchers have called for more ‘real-world’ exploration of this topic rather than simply asking research participants questions.

One option is the analysis of public social media data as this can minimise researcher involvement and provide access to conversations happening naturally. This can include data across several years, from a range of people globally, and communicating through social media plays to the strengths of many Autistic people.

Autism researchers have started using social media data in recent years, but nobody has captured what people are saying about autism disclosure.

What are Autistic and non-Autistic people saying online about autism disclosure? What are their perspectives? What are their experiences?

The research

The Australian Digital Observatory provided us with three years (2020 – 2022) of public posts related to autism disclosure from Reddit and Twitter. These platforms were selected given their open and accessible nature and high number of active users. The posts were from both Autistic and non-Autistic users.

We analysed:

We found common themes in what people were saying about disclosure experiences and perspectives.

What we learnt

Find out more

Webinar

In this webinar, ARCAP researchers, Dr Abbey Love and Dr Chris were joined by Jane Mantzalas from the Olga Tennison Autism Research Centre to explain how they explored social media to gain insights into the disclosure and burnout experiences of Autistic people.

Related research

Disclosure experiences of Autistic adults: In this study, ARCAP researchers followed a group of Autistic adults over a two-month period to understand their motivations for disclosing they are Autistic and the experiences they encounter along the way.

Making a difference

Autistic adults feel the impact of society’s lack of understanding of autism on a daily basis whether they disclose or not, with widespread stigma and experiences of discrimination across contexts.

• While these findings emphasise a dire need to increase autism knowledge across employers, healthcare, and the general population, it also means Autistic people require more support navigating these potentially life-changing decisions.
• Forms of media have an important role to play in promoting more accurate and more diverse portrayals of autism rather than promoting stigma and discrimination.
• Society needs to assume more responsibility in promoting an inclusive world and shifting the burden from the Autistic community.
• This research both complements and adds new information to previous disclosure research. We commonly found themes of employment discrimination and the emotional burden such as masking, but also discovered new themes such as the importance of media and Autistic representation.

Research team

Dr Chris Edwards, ARCAP

Dr Abigail Love, ARCAP

Professor Sandra Jones, ACU

Dr Ru Ying Cai, ARCAP

Dr Vicki Gibbs, ARCAP

Funding

Autism Spectrum Australia (Aspect)

Margot Prior Award 2022, Australasian Society for Autism Research (ASfAR)