There is, and has been, a lot of noise about autism in the last day, week, months, years. The ‘news’ from the US regarding that Paracetemol (Tylenol/Acetaminophen) use by pregnant women causes autism, has just increased this noise to a deafening level.
So here are some ‘Pro tips’ for Autistic advocacy on social media.
Before you jump in to comment, pause and think:
“Who am I speaking to, what outcome do I want, and is this worth my energy?”
Some people are not reachable, some accounts aren’t even real. Some comments are there to sow discord and make you wound up. For the real people, their take on autism often travels with other political positions, they shift goalposts, and they feed on attention. You do not owe them replies. Logic does not land where fear or bad faith is running the show.
If you must engage with them, remember: You are unlikely to change their mind and so are not really talking to them. You are talking to the people watching quietly, the lurkers, the unsure, the undecided. Speak to them instead.
If you choose to engage, do it with purpose. Be brief, clear, civil and kind, even if you feel the other person does not deserve this. Name the claim, give some facts, invite people to think it through, ask them to be critical. Then stop.
Have a ready script. Post once, and once only. Not too long or short. Keep it accessible: plain language, short paragraphs; use mine below here if you need to: copy it, adapt it, do what suits you.
Protect your capacity. You do not need to debate. You can mute, block, or walk away. Saving your spoons is part of the work.
You may not change a bad-faith mind, but you might inform someone else’s.
This is a script (tongue-in-cheek, yet factual) for you to use as you please, inspired by the nonsense being put out by the US government:
Q: Why do Autistic people exist?
A: Their parents boinked
Q: How did that happen?
A: Well when two people are attracted to each other…
Q: No seriously!
A: One or both parents are Autistic, and they passed their genes onto their child.
Q: I have an Autistic child and I’m not Autistic.
A: Says every unidentified parent ever who every day engages in Autistic behaviours, but doesn’t like to recognise that in themselves (because masking). But also, potentially: congrats, you’re a carrier. Genes shuffle, traits skip, surprise!
Q: It definitely comes from Dad, not me
A: Of course, because all the focus is always on boys, women are never generally overlooked, dismissed, or misdiagnosed by health services across a whole load of experiences, and generations of Autistic women definitely haven’t all been characterised as “quirky”, “anxious”, or ‘hysterical’. How many anti-depressants have you been on over the years, by the way?
Q: It must be the Tylenol/paracetamol (other made-up causes are also available)!
A: The research history of autism goes back to the beginnings of the 20th century, and anecdotally we can recognise ‘Autistic traits’ in people going back thousands of years. People were solidly being identified through the 1920’s onwards, though some of the labels might have been different. Paracetamol only first became mass-produced in 1955. Before you bring up vaccines or any other of the ridiculous things thrown around as causes, being Autistic also pre-dated vaccinations and probably all those other things and the same responses below apply (change the name but not the narrative).
Q: Aha! But the numbers of autistic people have grown ridiculously since then so it must be connected.
A: Show me the data where the increase in autism identification maps with an increase of Tylenol use since 1955. I’ll wait.
And while I’m waiting explain to me your understanding of the phrase “correlation is not causation”.
And also while I’m still waiting, I’ll sit here and read the multiple studies covering MILLIONS of children that entirely disprove any link between Tylenol/paracetamol and some being Autistic.
Q: Oh but that one study..?!
A: Yes, tell me all about your deeply flawed one study, that runs in contradiction to every other study out that covers 1,000 times greater numbers and is 1,000,000 times more scientifically robust that fulfils your confirmation bias.
Nor do these studies recognise the co-occurring pain narratives that can go along with being Autistic such as Hypermobile Ehlers Danlos Syndrome (as one of many examples) that might force an increase in the use of pain medication during pregnancy (there is still no evidence of paracetemol being a cause, only a response).
What’s your end-game here? The idea of a ’cause’ continues to show that not only that there is a really superficial understanding of what is happening here, but also two other factors:
a) That parents, notably ‘mothers’ actions are to ‘blame’, for a long time in the narrative this ‘evil’ thing called ‘autism’ has been the fault of women in some way (so many problematic and sexists and ableist aspects to unpack there).
b) Also, think about not only the subject matter, but the language being used. Risk. Danger. Unsafe. If you approach the idea of someone being Autistic as inherently bad, that’s generally because you don’t understand the narrative, or hold stigmatised views towards the idea of Autistic people. Lots of people, including parents, feel that way, indeed lots of Autistic people feel that way towards themselves. But, to me, if someone hangs their hat on the diagnostic concept of ‘autism’ being a meaningful and correct one, instead of recognising it as a limited and problematic one, shows that they have limited knowledge around the subject and could benefit from understanding it more. If you’d like to understand that better, you can visit here: ‘what is autism?‘
Q: So what has caused the increase in recognition?
A:
1. More Autistic people boinking.
2. Phenomenally improved diagnostic processes.
3. Much better and clearer ways of identifying Autistic people.
4. The platforming of Autistic people through social media en masse, globally, leading to more people recognising themselves.
5. Better research, more reflective research, more humble and less assumptive research, and a massive increase in both Autistic-led research and co-production – it’s not like there was 120 years of autism research that assumed that Autistic people are incompetent narrators to our experience and so didn’t bother asking us or working with us.
It’s almost like we’re not so puzzling that we need a jigsaw piece to represent us after all – you just never bothered to ask us and assumed your own perfection.
6. Changes in society leading to more stresses on people, along with significant pressure increases in education (meaning recognising more kids), leading to more distress behaviours becoming apparent through which Autistic people are generally identified professionally.
TL/DR: We’re better at recognising and there are more reasons Autistic people might be more obvious, or recognise ourselves.
Q: Hasn’t diagnosis of ‘mental health’ become a fad?
A: Hmmm. The neo-liberalism is strong in this one. Some might say that, I’d disagree. This whole question needs a lot of unpacking, but I’ll do it in relation to being Autistic and ADHD:
Firstly being Autistic or ADHD isn’t a mental health problem. There is definitely superficiality in a lot of social media (post likes ‘Top 5 reasons you might be Autistic!’ or ‘3 things ADHD people do!’), which *could* encourage people into thinking they are experiencing something that they might not be.
Consider though that someone goes on a very long waiting list (sometimes up to 10 years long), undertakes (often) a mass of research, and has to sit and convince a highly trained professional whose job it is to categorise you through a series of diagnostic checkpoints, and effectively prove that you are Autistic, and disprove that you are not – they idea that they are doing so because they’ve attached themselves to a fad, is frankly ridiculous.
Also, are we also now saying that all those diagnosticians are easily duped and not very good at their jobs? Good luck with that argument.
There are ‘professionals’ in the mental health world who have public platforms and who have products to sell. Look at their arguments critically, consider their biases, think about power dynamics, and evaluate the consequences of what they are saying.- In the same way that I invite you to do with me. In the meantime, I would urge you to meaningfully study the concept of identity, and understand the role of identity within this narrative, which takes us far away from diagnostic pathways, but also highlights those who don’t understand that in the world we live in which relies often on diagnostic pathways, that often identity and diagnosis, especially when it comes to neurodivergence, are intrinsically, and unfortunately entwined. Unfortunately, many that don’t understand this meaningfully, are the gatekeepers to identity.
I’ll end by saying; we’re a community and you are not alone. So many advocates and organisations have posted statements supporting our community over the past few days so please take heart from that. It’s been a tough day, among many, many tough days, but still we advocate and fight on.
Kieran
Further Reading
You might like to read my other thoughts on the current US Administration and the people surrounding it;
If you want to read more about Autism (and be much more educated than the US Administration) I would recommend starting here;
TOP 10 ACADEMIC BOOKS ABOUT AUTISM
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1 Response to "How to respond to the ‘Paracetemol (Tylenol/Acetaminophen) causes Autism’ comments on social media"
The whole thing is crazy to me. How can it be allowed that a politician can make medical claims for their own political gain that are not based on any scientific evidence? What a mad word that we live in.