‘Most people have no idea what autism is’: Unpacking autism disclosure using social media analysis

Subtheme 1.1: stigma and discrimination in employment

Workplace discrimination following disclosure was the most frequent topic shared by users, where autism disclosure was described as a barrier to employment, a cause of workplace bullying and a reason behind the loss of a job. Many users shared that their disclosure during a job interview led to an immediate rejection, ‘another job down the gurgler (drain)’ (R620). They wrote about how they could visually see their potential employer’s ‘estimation of me drop like a stone’ (T2172). Many viewed their success in the job market ‘as how well we can pretend we’re like non-autistic people . . . or whether our non-autistic employers see us as human’ (T1728). As a result, many chose not to disclose as they could not ‘get anywhere disclosing my autism. I only ever got into places by hiding it’ (T1643).

For autistic people in employment, there was reluctance to disclose due to stigmatizing views expressed by co-workers such as ‘eww, I would never want to work with someone like that’ (T1553) and subsequent discrimination from colleagues and employers. Some co-workers were described as bullying autistic staff by ‘being cruel and harassing him in some way’ (R836), and others questioned their identity, ‘yeah, but you’re not REALLY autistic, are you?’ (T2038). In other instances, autistic users detailed that they lost responsibilities in their roles after disclosing despite having the necessary certifications, such as being told they were ‘a risk to the safety of customers and associates’ (R618).

Users wrote about how discrimination and bullying following disclosure often led to them being ‘bullied out of a job’ (T690) or otherwise being ‘fired . . . for disclosing’ (T703). Users indicated that employers lacked an understanding of autism. Human resources staff would often state ‘something so completely ignorant and false’ (R283), even thinking that ‘autistic people are “brain damaged”’ (T2157). Some users revealed they lost their job immediately after disclosing; ‘fired from my job with no warning. . .’ (R719). Others lasted a few days, ‘it took them three days from when I submitted my autism paper, to coming to the conclusion to dismiss me’ (R211) and some a few months, ‘was abused, ostracized and within the year had been relieved of my job I’d been flying in for four years’ (T1322).

Subtheme 1.2: disclosure can be difficult across all relationships

This subtheme describes how hard disclosure to friends, family and potential/current intimate partners can be. Many users indicated that disclosing harmed their close friendships such as being ‘ripped to shreds by a friend of 10 years after disclosing my autism’ (T2047). In other instances, disclosure ended friendships, ‘all of my “friends” blocked me and kicked me out of their lives because they found out I was autistic . . . and one of them told me “we don’t want to be with someone retarded”’ (R513). Users commonly expressed that it ‘depends on one’s family. It may not be safe for some autistic people to disclose. In other situations, it is totally fine . . . I know instances where it has ended family relationships’ (T91).

The complexities and challenges of disclosing with intimate partners were the most common relationship topic shared by users. Although many expressed an interest in intimate relationships, some had ‘kinda given up on love, whenever I disclose I have autism to a girl I’m dating, I get ghosted’ (R753). Similar to the experiences in employment, prospective partners were described as uneducated about autism, ‘autism isn’t contagious. Yes, I have had a date ask me that once upon me disclosing my autism’ (T1522). Disclosing frequently led to discrimination and the immediate end of relationships, such as one user who received ‘I can’t handle that’ (T1941) and was immediately left during the date. This was even the case in established relationships, with some users indicating they would never ‘tell my significant other that I have autism, not even on my death bed’ (R722).

Subtheme 1.3: healthcare professionals should know better

Disclosing to a healthcare professional can ‘contextualize my experiences, should inform medication decisions, as well as other health implications’ (T1069), but users shared they often ‘worry it will result in a lower standard of care’ (T829). Negative experiences were common and occurred across a range of health professionals (e.g. general practitioners, psychiatrists, nurses, paramedics, audiologists, pharmacists and counsellors) who often demonstrated a lack of understanding of autism. This included not being believed by general practitioners, ‘you (autistic)? Impossible’ (T1525) and ‘you’re not autistic . . . we’ve been talking without an issue’ (R683). Posts referring to negative experiences with nurses were also common such, ‘every time I disclose I’m autistic to a nurse they always argue with me??? Like they take it as an invitation to debate my diagnosis’ (T87). There were instances of infantilization, ‘being treated like a fucking moron while in a full-blown autistic meltdown by these effing paramedics’ (R699). Users also emphasized a lack of autism knowledge in critical care contexts such as an emergency department, where an autistic friend of one user was told during intake ‘you can’t have autism, if you were autistic you wouldn’t be able to tell me’ (R739).

Subtheme 1.4: ‘harm comes from . . . the media, including social media’

The way that the media portrays and discusses autism contributed to a reluctance to disclose. Several users wrote about how impactful it was when the media portrayed school shooters who were autistic, ‘the media likes to trot out the diagnosis in relation to school shooters . . . disclosing your diagnosis could put you in more danger, not less’ (T2011). Another user noted how their social media and the news were flooded with comments such as ‘all people with autism are MONSTERS!!!’ following a shooting incident (R546). The media’s portrayal of autism led to concerns for safety due to misinformation and inaccurate or incomplete portrayals of autistic people and this contributed to their ‘motive for non-disclosure’ (R546).

In addition, the way in which autistic people were portrayed in film and television impacted disclosure decisions as one user noted how these (in reference to Sia’s 2021 film, Music) portrayals made them ‘feel infantilized and stereotyped . . . This is why I STILL have issues embracing my autism and disclosing to others’ (T1630). The long-lasting impact of inaccurate portrayals was evidenced by numerous Rain Man references despite the film being released in 1988, ‘I can’t count the number of insensitive, ill-informed reactions to me disclosing I’m autistic as a result of bad depictions’ (T1744). This includes television references where there is concern that following disclosure people ‘will immediately think oh, like *Love on the Spectrum* or *Atypical*’ (R63). Other common television references included The Big Bang Theory, such as one autistic user who was bullied in the workplace with comments such as ‘it’s like dealing with Sheldon Cooper’ (R82).

Subtheme 1.5: ‘disclosing autism . . . it’s providing context’

On a positive note, disclosure was viewed as a way of helping people ‘understand about me . . . it would be very beneficial if they understand my brain works a little differently’ (R24). This included explaining their behaviour, so ‘people are less likely to think I’m being intentionally rude or lazy – which matters a lot’ (T113). This was common in the workplace, as telling others that they are autistic ‘would maximize my ability to work effectively with others in the lab and would best “help me help them” as a result’ (R28). Users also considered disclosure as a way of ‘providing context to our communications so we may work on understanding each other better’ (T29).

Subtheme 1.6: constant burden associated with disclosure

Autistic users wrote about the emotional impact, particularly the fear and anxiety associated with the idea of disclosure:

I don’t want to be the autistic recluse, but I’m honestly scared of the world. I don’t want to disclose my diagnosis to people whom I need to in order to receive accommodation because I’m scared of what will happen. I’m scared of being judged yet again. I’m scared of being discriminated against. I’m scared that someone will call me a poorly raised child, even though my parents raised me the right way. I’m scared I’m going to be another face on the nightly news (R793).

This emotional burden was prominent among users in higher education as well as employment settings, where there was fear that disclosure would lead to ‘fewer job opportunities’ (R627) or that it would put the ‘brakes on career advancement’ (R616). Other users expressed how they needed support and accommodations to thrive at work but felt that it was ‘impossible to request accommodations for autism without being treated like a child or murderer’ (T1476). This included parallels between disclosure and ‘professional suicide’ (T770 and T1805) or ‘employment suicide’ (T795). As a method of trying to manage this burden, ‘I mask hard . . . the effort to mask destroys me. But at least I’m seen as an equal intellectually’ (T1441). But masking can take a toll, and when one user ‘couldn’t mask any more . . . I disclosed and was bullied out of the job and it put me in hospital’ (T1577).

Subtheme 2.1: ‘treat us like we are human’

Regardless of whether autistic users disclose or not, they want others to ‘treat us like we are human’ (T824). Some users indicated they were bullied when they ‘don’t disclose’, often because they were seen as ‘the most vulnerable person in the office and the easiest target’ (R693). In response to bullying, there was a pressure to disclose, but ‘I shouldn’t have to disclose that I’m autistic for you to treat me with basic respect and dignity’ (T1156). Users shared that they did not like feeling forced or pressured to disclose to ‘gain the privilege of being treated like a human being’ (R674), even comparing disclosure with holding ‘a white flag to prevent bullying’ (T1687).

However, disclosing often made the situation worse. Autistic users commonly wrote about how disclosure led to experiences such as being ‘dehumanized and treated like you’re disposable trash’ (R671). Other users described the frustration of infantilization, how people ‘suddenly change and start treating me as if I’m stupid or talking to me like a child’ (R103). In one instance, a user shared how their autistic colleague was ‘frequently bullied. People called him creepy, annoying, and awkward . . . then he disclosed and they all started handling him with kid gloves (while still talking behind his back obviously)’ (R738). While many autistic users specifically avoided disclosure as they did not ‘want to be talked to like a child’ (R85), many posts indicated that ‘either way I lose’ (T699).

Subtheme 2.2: ‘privacy matters to us’

Autistic users commonly stated that disclosure was a personal and private choice, not to be forced, not to be non-consensual, ‘just cause YOU think it’s fine doesn’t mean it is’ (T1240). For instance, in response to a grandparent oversharing with new neighbours, an autistic user was left ‘completely distraught . . . she didn’t have any right disclosing . . . It’s absolutely humiliating and I hate this so much’ (R531). These experiences were common in workplaces. In some cases, co-workers shared this information ‘to my manager without my knowledge’ (R356). In other instances, it was the manager in the wrong despite their good intentions, ‘my boss, in an effort to help, disclosed the fact that I am autistic, to the ENTIRE BUILDING STAFF’ (R453). This decision took away agency and privacy from the autistic user, ‘my new employer just told the team I had autism . . . but fuck. Pretty sure disclosing my disability isn’t legal. I wouldn’t have chosen to disclose to the rest of the team’ (R371).

Subtheme 3.1: autistic professionals’ disclosure benefits the autistic community

Users expressed being drawn to roles that directly supported the autistic community and that their disclosure often added value to their role, ‘because nobody is going to understand an autistic person like another person on the spectrum’ (R100). Users wrote about how they would be ‘happy to have an autistic therapist’ (R12), but the ‘stigma is so bad that they don’t feel they can disclose’ (T1846). An autistic therapist shared that they disclosed when it ‘feels therapeutically beneficial’ (T383), and an autistic patient being aware of an autistic doctor is ‘what made me choose her’ (T1976). Users described the positive responses from disclosing in their roles supporting autistic people, where it is ‘great it is to have someone with so much insight’ (T1951) and that it explains why they ‘were good at your work with autistic kids’ (T945). Autistic educators also disclosed as they felt their experience meant ‘I can support her in the best way and I completely understand how to use stuff that works with our thinking’ (T756) and it can give ‘other autistic students hope that they can be successful’ (T39).

Subtheme 3.2: ‘we’re everywhere, & it’s time to accept it’

Users shared the value of disclosing as a form of autism advocacy, with autistic representation through public figures being a way to challenge stereotypes. Some users expressed that they ‘like to be an advocate and leader’ (R359) as it can ‘impact other people and also bring awareness’ (R52). While autistic users acknowledged the challenge and discrimination they would likely face, many saw disclosure as part of their ‘moral code’ (R359), and that ‘logically it’s the only way . . . it’s our duty’ (R498).

Beyond the ground-level advocacy, users shared that they were ‘grateful for each and every celebrity and public figure who chooses to disclose their autism. It’s good and necessary’ (T478). For example, while Elon Musk received mixed responses to his autism disclosure in our data, the positive comments from users included being ‘proud of him for bringing neurodiversity to the national stage!’ (T1401) and that it ‘gives hope to guys like me, and is very much appreciated’ (T1426). Further praise for the disclosure of public figures included celebrities such as Anthony Hopkins, Wentworth Miller, Melanie Sykes and Julia Fox and that ‘we love to see it’ (T6). Users also expressed a mutual desire for more autistic role models, ‘autistic youth need autistic adult mentors, teachers, coaches, guidance’ (T134) and that ‘those of us who can disclose make it easier for those who come after us’ (T1719). Users also shared a view that ‘I hope more successful autistic people do come out in the future to help break this harmful stereotype’ (R484).