Elon Musk, Greta Thunberg, Anthony Hopkins – these are some of the public figures who have chosen to publicly share that they are autistic.
While public figures and celebrities are helping to challenge negative stereotypes about autism, a recent study found that for many autistic people, the decision to share, or disclose, their diagnosis/identity with others is fraught with fear and anxiety.
Overall, the study concluded, most people in society have no idea what autism is. This creates problems for autistic people in work, dating and healthcare, and can affect their mental health.
The decision to disclose – whether to a partner, friend, colleague or employer – is complicated, the research found. It can engender understanding, acceptance and support. But it can also result in stigma, discrimination and bullying.
Not disclosing has its problems too – it can be exhausting for a person to continually camouflage, or ‘mask’ their behaviour to try to ‘fit in’. In the workplace, it may mean the autistic person does not receive the support they need to thrive in their role.
The study was a collaboration of Autism Spectrum Australia (Aspect), Griffith University, the Australian Catholic University, Queensland University of Technology and the University of Sydney. The aim was to better understand the experiences and perspectives of autistic people in relation to autism disclosure.
Rather than using traditional methods of interviews and surveys to collect data, the researchers turned to social media, qualitatively analysing 3 years of disclosure-related posts on Twitter/X and Reddit, sourced via the ARDC-supported Australian Digital Observatory.
Autism researchers have been turning to social media for data on identification and diagnosis, aloneness and connectedness, identity, burnout, and vaccine controversy. But this is the first time that social media data has been used to explore autism disclosure.
Dr Chris Edwards, a research fellow at the Aspect Research Centre for Autism Practice (ARCAP), led the research. ARCAP is the research arm of Aspect.
“Our research question was: what are people saying [online] about autism disclosure?”, said Dr Edwards. “Rather than recruiting research participants and asking them questions we wanted answered, we looked at what people were saying online in those natural conversations and posts.”
Social media data has many advantages over data collected through traditional research methods where the researchers frame the questions, risking some bias. Also, data from social media may be more inclusive of members of the autistic community who are more comfortable communicating online and may not seek out opportunities to participate in research.
“With social media data, we get more natural conversations, especially with Reddit, where there is no word limit for a post. It’s more real world”, said Dr Edwards.
The data on Twitter/X and Reddit is also public, it’s longitudinal, it’s international, and it incorporates the perspectives and experiences not only of autistic people but of their family members, friends and carers. It’s also dynamic, continually being added to.
Getting hold of the data in a form that could be imported into research software NVivo for analysis required expertise, which drew Dr Edwards to the Australian Digital Observatory.
“I tried several ways to pull social media data from the platforms, including NCapture [a browser add-in that captures web content for importing to NVivo], thinking it would be easy, before coming to the conclusion that I needed help”, he said.
The Australian Digital Observatory is national research infrastructure for accessing and analysing dynamic human data on the web, including existing collections of national interest across Twitter, FlickR, YouTube, Reddit, Instagram, and gaming platforms such as Steam.
It received co-investment through the ARDC platforms program during 2020–2023, alongside partners The University of Melbourne, the University of New South Wales, The University of Queensland, and the Queensland Cyber Infrastructure Foundation (QCIF). It has several nodes, the QUT node being the lead.
“The QUT Digital Observatory team had really clear information about what they could do and how they could help”, said Dr Edwards. “We gave them some search terms and shortly afterwards received a sample of the data so we could check the volume and relevance before pulling the entire database together. “
The Australian Digital Observatory provided the data in a form that Dr Edwards could import directly into NVivo for analysis.
“It was a really smooth and easy process, and I want to do it again the next time we have an interest in something social-media-related.”
Creating a society where autistic people can feel safe to disclose, if they want to, is a challenge. The researchers suggest that we need to make this everyone’s responsibility, while respecting the confidentiality of disclosures, shifting the emotional burden of disclosure from ‘them’ to ‘us’, and reducing the spread of misinformation.
“It’s really going to be a slow and gradual process for society”, said Dr Edwards. “But I think this [research] adds to that process, particularly by including people who may not traditionally be included in autism research.
“And if you reflect on society over the past few years, I think you can see how things are slowly changing. The media is still a problem, [but] there are slowly becoming better autistic portrayals in TV shows and autism voices in the news.”
New paper! Many of the disclosure experiences people posted about were quite disgusting… society needs to do better @AutisticProf @ObservatoryTeam @arcap_aus https://t.co/Ae5VFIZCqd
— Dr Chris Edwards (@DrChrisEd) August 23, 2023
The results of the research have been published in the journal Autism: ‘Most people have no idea what autism is’: Unpacking autism disclosure using social media analysis.
Dr Edwards presented the findings to an ARCAP webinar which drew an audience of over 200: Social media conversations: What have we learned about autistic disclosure and burnout?
Several guides developed by Aspect to help people navigate the disclosure decision-making process have been updated with the findings.
A new project has been launched to enhance the availability and usability of internet data, the Australian Internet Observatory. Initiated by researchers at the ARC Centre of Excellence for Automated Decision-Making + Society (ADM+S), it partners with 6 universities and organisations, including the Australian Digital Observatory, and is supported by the ARDC through the HASS and Indigenous Research Data Commons.
The Australian Digital Observatory received investment (doi.org/10.47486/PL015) from the ARDC. The ARDC is enabled by the National Collaborative Research Infrastructure Strategy (NCRIS) to support national digital research infrastructure for Australian researchers.
Case study written by Mary O’Callaghan. Reviewed by Dr Chris Edwards and Dr Vicki Gibbs (Aspect Research Centre for Autism Practice (ARCAP)), Dr Marissa Takahashi (QUT), Jo Savill and Jenny Fewster (ARDC).
