Unnecessary alarm has been caused recently by an ill-advised academic paper which suggested that the rise in Tourettes diagnoses since the start of the pandemic has been caused by kids spending time on Tik Tok and imitating influencers who are Touretters. This has received an urgent and immediate rebuttal by a second group of academics, who have rightly point out the many flaws in the first paper’s argument, let me summarize them for you.
First of all the paper cites eco-anxiety as causing a rise in Tourettes, but without really defining or measuring eco-anxiety, nor linking it to the TS symptoms. Even if the paper had done so with their small sample, correlation does not infer causality, this is some basic science.
Second, the suggestion that young people are affecting a major neurological condition buys into the vilification of ND symptoms as “attention seeking” this is stigmatizing and dangerous.
Finally, the paper is completely ignoring the needs of the individuals, their treatment options, support they might need.
The rebuttal also makes an excellent point about the current trend of open access scientific papers, which has both improved public engagement with science but also comes with a risk. In the normal run of things, a paper which had no scientific credibility would be debunked before it reached public consumption. A few doozies have always typically slipped through the peer review safety net. However, prior to open access, the types of knowledge that were passed on were typically summaries which had been crafted following introduction, replication and evaluation of new ideas or critiques with multiple papers, not this sort of off-the-cuff ableism. By taking away the filter, we are exposing people to unformed immature ideas with a sheen of credibility by virtue of their publication.
Denying Validity Of Symptoms Is Overt Ableism
Tourettes is known to be under diagnosed. Many simple tics, such as throat clearing, are written off as allergies. Tics are also known to get worse in times of anxiety. Not all tics develop into Tourettes, but they can nevertheless be distressing for individuals. So it is plausible that as symptoms are increasing, the social media Touretters are helping young people to understand what is happening to them in a way that public health advice has completely failed to do.
Under these circumstances we could predict an increase in TS diagnoses. What is needed here is better diagnosis options, support for young people and more awareness about Tourette Syndrome and Tic disorders more broadly, not assertions that the kids need to stop “making it up!”
And it’s not just Tourettes. We still have scientists suggesting that ADHD is not real, that neurocognitive differences are caused by traumatic experiences, that Autism in girls is “just anxiety” and that Dyslexia is a “middle class problem.” Yet genetic studies are quite reliable and validate the presence of neurominorities via combinations of genetic differences.
The reason there are still disputes among professionals is because we haven’t translated genetics to reliable diagnosis protocols yet. We still rely on behavioral checklists which are subject to bias and could well be complicated by trauma, anxiety and educational background. This bias leads to systemic under diagnosis of specific groups (women, Black Indigenous People of Color, and transgender people) despite accusations of over diagnosis in others. But to suggest that conditions are over diagnosed because people also have mental health needs undermines the efforts of decades of campaigning to improve access to diagnosis. It also suggests that those conducting diagnoses are unreliable or malevolent, which needs addressing as a standard of practice, not a minimizing of neurominorities. Picking through a case history should be something that happens between a professional and a client, not a throw away comment taken out of context.
Online Spaces Require Professional Boundaries
The question of whether scientists are making reasonable critiques has a straightforward pathway for exploration which will naturally sort out which arguments have validity or not. We determine a research question, gather evidence and analyse it. That’s what science is for. We owe it to those who are affected by our debates and discussions to test new ideas and refine them before inflicting them on others.
Behind every claim that ADHD is “mainly” or “increasingly” trauma, or that Tourettes is “just” mass hysteria, there are individual human beings, who are trying to navigate their way through education and employment, through life, with significant challenges. What is abundantly clear in the data is that ND people are subject to excessive exclusion – higher rates of exclusion from school and incarceration, lower levels of employment. Putting forward any argument which can undermine effective diagnosis and treatment is dangerous.
When neurodivergence is suspected, this should be referred on to someone appropriately trained, not called out on the internet, even if it is in a published preprint. If a neurominority status is challenged, this should be done with care for the psychological wellbeing of those involved, who tend to experience neurodivergence at the identity level, not as an illness (I am Dyspraxic rather than I have Dyspraxia). We (particularly women) tend to be disbelieved and misdiagnosed with mental ill health for many years before diagnosis, so this questioning the validity of our identity can be triggering for us. Practitioners casting aspersions with neither evidence nor connection to the population they are referring to is therefore deeply unhelpful. While we wait for scientific clarity, we should still support each individual with all presenting medical, psychological and social needs. No amount of anti-anxiety meds are going to compensate for a dopamine deficit and only treating anxiety is not going to resolve Autistic isolation. It’s not either or, it’s potentially both. Neurodiversity is still a messy science, but it doesn’t have to be poor practice.
The Plural Of Anecdote Is Not Data
If you are a neurodivergent person, or an employer, or an ally, I encourage you to challenge bad science when you see it. Avoid taking things as gospel truth, just because someone has an MD or a PhD or has published a single study with a small sample. Notice when a professional states “all people with X are in fact Y” – all or nothing thinking is not good science. Be aware of grand statements or critiques that have no data to back it up, this is also not good science. Ask questions, ask for their sources when they make statements that challenge your lived experience. Raise a concern with a professional body if you think a practitioner or paper is harmful.
If we are coming out of the ivory tower, we’re going to need to be able to defend our assertions publicly. When scientists behave like the social media influencers they often denigrate, they are gossiping, not sharing knowledge, no matter how credible their publication. As the internet connects us across boundaries and hierarchies those with power are also more exposed, and so we’re going to have to learn to manage our own boundaries, temper our speech and apologize when we get it wrong. I’ve had to work hard at balancing my own lived experience with the influence of my position. I’ve been called on it (thank you Judy) and I’m learning. Building a respectful debate between practitioners, researchers and communities of lived experience is a work in practice, in which we are all active participants.