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
Theme 1: People just don’t understand autism
Society’s lack of autism understanding was described as having wide-spread impact across aspects of an Autistic person’s life including employment, healthcare, relationships and mental health:
- Stigma and discrimination in employment
- Disclosure can be difficult across all relationships
- Healthcare professionals should know better
- Forms of media are contributing to further stigma and discrimination
- Disclosure can help provide context
- Constant burden associated with disclosure
“Fired from my job with no warning …"
“Ripped to shreds by a friend of 10 years after disclosing”
“Every time I disclose I’m autistic to a nurse they always argue with me???”
Theme 2: We aren't asking for much
Autistic people shared that they just wanted to be treated with respect and dignity, regardless of whether they disclosed or not:
- Treat any person as a human being
- Autism disclosure is a personal and private decision
“Just cause YOU think it’s fine doesn’t mean it is”
"Diagnosis disclosure without consent, don’t do it”
Theme 3: Autistic representation can lead us forward
People shared the benefits of Autistic professionals and public figures disclosing:
- Autistic professional’s disclosure benefits the Autistic community
- People disclosed for advocacy and praised more public figures coming forward
“Nobody is going to understand an Autistic person like another person on the spectrum”
“Grateful for each and every celebrity and public figure who chooses to disclose their autism”
Theme 4: We need to shift the burden to non-Autistic people
People communicated how the burden should be on society to help make spaces safer for autism disclosure.
“My employer has accommodated my ADHD and autism without me ever even disclosing either … They just do what is needed to support their employees”
Publication
Edwards, C., Love, A. M. A., Jones, S. C., Cai, R. Y., Nguyen, B. T. H., & Gibbs, V. (2023). ‘Most people have no idea what autism is’: Unpacking autism disclosure using social media analysis. Autism.
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, Aspect Research Centre for Autism Practice (ARCAP)
Dr Abbey Love, ARCAP
Professor Sandra Jones, ACU
Dr Ru Ying Cai, ARCAP
Dr Vicki Gibbs, ARCAP
Started
2022
Ends
2023
Funding
Aspect and the Margot Prior Award 2022 funded by the Australasian Society for Autism Research (ASfAR).