OTQualitativeAutism : the international journal of research and practice2024

'Most people have no idea what autism is': Unpacking autism disclosure using social media analysis.

Chris Edwards, Abigail M A Love, Sandra C Jones and 3 others

PMID 37606257

WHAT IT FOUND

Users posting about autism disclosure described it as often bringing misunderstanding, stigma, job loss, poor healthcare, and relationship harm.

They wanted respect, privacy, and inclusive systems so disclosure is not needed to get basic accommodation.

Key findings

01Workplace discrimination was the most frequent disclosure topic, with users describing job rejection, bullying, reduced responsibilities, or dismissal after disclosure.

02Autistic users worried that disclosing to healthcare professionals could lower their standard of care, and reported disbelief, arguing, and infantilization.

03Users said organizations should provide accommodations and inclusive workplace systems so personal disclosure is not required to receive support.

STILL TO COME

How it was doneWhat they foundWhat it means for OTs

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What it does not show

The data were public social media posts, not a representative sample of autistic adults. The study could not collect demographics, so it cannot describe the age, gender, or background of the users. The researchers could not always tell whether the person posting was autistic or a stakeholder. The posts were retrospective, and the researchers could not follow up with users to clarify experiences. The search used terms like disclosure, so people who described sharing or telling in other words may have been missed. Social media users may be more likely to post negative experiences, which could make negative disclosure outcomes more visible than positive ones. The analysis looked at individual posts without the surrounding conversation, so context may be missing.

Declared interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

The easy way to misread this

Do not read these posts as proof that disclosure causes job loss or poor healthcare. The data were self-selected public posts, not a representative sample, and many users may have been more likely to share negative experiences.

Read it on PubMed →