TIkTok, Instagram, Stigma, and Misinformation

 In The Politics of Autism, I examine the role of social media in the development of the issue. 

Ononuju, U.A., Ujari, C.A. Stigma and Misinformation About Autism Spectrum Disorder (ASD) on Tiktok and Instagram: Content Analysis Using #ASD, #Autism and #ASDinfo. J Autism Dev Disord (2025). https://doi.org/10.1007/s10803-025-07057-7.  Abstractzzzzzzz;

Background

This study investigates the prevalence, nature, and impact of misinformation, stigma, and general information about autism spectrum disorder (ASD) on TikTok and Instagram.
Objective

The aim of this research was to analyze the content related to ASD on TikTok and Instagram to understand the nature of misinformation, stigma, and their influence on public perceptions of ASD.
Methods

A TypeScript-based scraper was used to extract posts from TikTok and Instagram, focusing on the hashtags #ASD, #Autism, and #ASDinfo. Data was collected over a five-year period from January 2018 to January 2024.

Results

The analysis found that misleading statistics (MIS3) were the most common form of misinformation, accounting for 52.5% of all misinformation. Instagram had a higher prevalence of misinformation (85%) compared to TikTok (74%). In terms of stigma, negative stereotypes (STIG1) were most prominent, with TikTok showing a higher frequency of stigma (88.5%) than Instagram (80%). Supportive community posts (INFO2) made up 48.5% of the posts, with Instagram again leading (65%) over TikTok (63.5%), although TikTok had more interactive engagement. Chi-square tests indicated statistical significance for derogatory language (p = 0.049) and personal stories (p = 0.038), both of which were more prevalent on TikTok. No significant differences were found in other categories.

Conclusions

This study highlights the distinct dynamics of misinformation and stigma across social media platforms, with TikTok showing greater negativity and interactive content, while Instagram provided more supportive community posts. The findings emphasize the need for targeted interventions to address the spread of misinformation and harmful stereotypes about ASD on these platforms.

Antivax Influencers Focus on Mothers

 In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  Twitter, Facebook, and other social media platforms have helped spread this dangerous myth.

At Information, Communication, and Society,  Stephanie Alice Baker and Michael James Walsh have an article titled: "`A mother’s intuition: it’s real and we have to believe in it’: how the maternal is used to promote vaccine refusal on Instagram."

From the article:

Reports suggest that mothers bear the primary responsibility for decisions regarding their children’s health (Kaiser Family Foundation, 2005), including the decision on whether to vaccinate their children (Petts & Niemeyer, 2004). There is a common assumption that suburban mums represent a significant proportion of anti-vaccine advocates. Beliefs of this kind are perpetuated by the media. For example, during the pandemic a series of headlines explicitly identified mothers as responsible for spreading medical misinformation: what was referred to as ‘Pinterest moms’ (Winter, 2020), ‘Whole Foods moms’ (Lubrano, 2019) and ‘QAmom’ (Dickson, 2020). While there is a rich body of literature on the social determinants of parental decision-making on childhood vaccination, less attention has been paid to the ways in which mothers are strategically targeted by anti-vaccine advocates. In this article we compensate for this neglect by examining how the maternal is appealed to, and represented, by anti-vaccine advocates online during the pandemic. This is achieved by analysing the communicative techniques used by a series of high-profile anti-vaccine influencers, referred to as the ‘Disinformation Dozen’, on Instagram for 19 months from 1 January 2020 to 31 July 2021. Our findings reveal the ways these influencers strategically attempt to appeal to mothers as the subject and object of anti-vaccine content online, questioning the common assumption that suburban mums are solely responsible for the decision not to vaccinate their children.

...

In a retracted paper in The Lancet, Andrew Wakefield and his colleagues falsely claimed that there was a connection between the MMR vaccine, autism and bowel disease. The paper propelled Wakefield to notoriety and reignited the anti-vaccine movement (The College of Physicians of Philadelphia, 2018). Wakefield’s paper was one of many contributors to the anti-vaccine movement; the key difference is that his study received widespread media attention (Berman, 2020), coinciding with the advent of the search engine, Google, and the rise of the global internet. Although Wakefield was struck off the medical register in Britain in 2010, he remains a prominent figure of the anti-vaccine movement today, directing films that question the safety of vaccines and the intentions of the government and pharmaceutical industry, harnessing social media to build and sustain a loyal online following.

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Anti-vaccine advocates also appeal to public fears about vaccine ingredients as ‘artificial’ and ‘harmful’ (e.g., the mercury-based preservative, Thiomersal) by implying a causal link between vaccines and autism. Many of these online marketing campaigns deliberately target mothers as the primary caregivers of children. Anti-vaccine messaging is also amplified on social media by influencers, who pursue fame online as a vocation for profit (Baker, 2021).

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In addition to his highly publicised MMR study, Wakefield has produced and directed a series of films, including Who Killed Alex Spourdalakis (2015), Vaxxed (2016) and 1986: The Act (2020), all of which purport a connection between vaccines and autism. Instagram was chosen as the site of data collection as this was – at the time of data collection – the main platform used by these influencers. The site’s algorithm also actively recommends COVID-19 vaccine misinformation (CCDH, 2021a). The images shared on Instagram serve as powerful modes of persuasion that are often difficult to regulate (Baker & Rojek, 2020).

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In addition to these personal anecdotes, hashtags are commonly used to extend audience reach. This is achieved by associating anti-vaccine messages with popular protest movements, such as Black Lives Matter. For example, theories of medical racism, which draw attention to the racist policies and practices that historically informed the medical academy (e.g., unequal access to health care, the segregation of medical facilities and involuntary medical experimentation on racial minorities – see Nuriddin et al., 2020), began to circulate on Andrew Wakefield’s account on 2 June 2020, a week after George Floyd was killed. Several of Wakefield’s posts in the following week drew on this theme of medical racism to encourage vaccine hesitancy by claiming that the government is ‘endangering’ black children via vaccination despite knowing that ‘African American boys are 236% more likely to be diagnosed with autism when vaxxed with MMR’. The theme of medical racism, which is presented as ‘the new apartheid’, was also employed by Kevin Jenkins and Robert F. Kennedy Jr., before Kennedy’s Instagram account was suspended. While the issue of medical racism appeared to have limited impact, Wakefield’s association of anti-vaccine content with the Save the Children charity proved to be more effective in extending audience reach. From the 3 May 2021, Wakefield hijacked the #SavetheChildren, #SaveourChildren and #SavetheBabies hashtags to promote his new film, 1986 – The Act. This resulted in a significant increase in engagement with likes on subsequent posts using these hashtags more than doubling from 1171 to 2990. The #SavetheChildren hashtags not only made Wakefield’s posts more discoverable, they associated the anti-vaccine movement and the Save the Children movement as common efforts to protect innocent children from harm.

Antivaxxers and Social Media Workarounds

 In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  Twitter, Facebook, and other social media platforms have helped spread this dangerous myth.

Kiera Butler at Mother Jones:

There is an article on “Merck Fraud” from Robert F. Kennedy Jr.’s anti-vaccine group Children’s Health Defense. There is a “vaccine guide” that warns of harmful additives and hidden adverse reactions to immunizations. There is a site that urges people to be part of the COVID-19 vaccine “control group” by not getting vaccinated; there is a place where you can purchase a tank top that says “separate pharma & state.”

If the content in these links were posted on Instagram itself, they could trip the platform’s misinformation algorithms because they contain factually incorrect statements. (The vaccine guide link, for example, suggests that vaccines cause autism, which isn’t true.) If the algorithm picked up on this, the account could be suspended or even banned. But Janny Organically and a host of other Instagram users have figured out a clever workaround: They’ve found sites that allow you to curate a list of links under one tidy and unassuming URL. Janny Organically uses one of two very popular link curating platforms: a Milwaukee-based company Campsite.bio. Another is Linktree, an Australian company. Campsite.bio doesn’t share much about its size, but its client roster includes some big names: Dell, USA Softball, and the popular WNYC radio show Radiolab, to name a few. According to Linktree’s website, it has 8 million clients and offices in Sydney and Los Angeles. Instagram users also have the option of using a link-list service called Linkin.bio, which is hosted by Instagram itself.

I counted dozens of popular anti-vaccine Instagram accounts that use link lists, including a chiropractor in San Diego with 33,000 followers, an essential-oils-peddling homeschool mom in Tennessee with 101,000 followers, and an Australian podcaster with 80,000 followers. Some organizations use them, too: A powerful anti-vaccine advocacy group called Freedom Keepers United uses a Campsite link on its Instagram account, which has more than 66,000 followers. Another anti-vaccine group, Moms for Liberty, uses Linktree in several of its local chapters.