In the recent Lancet article The gut microbiome in neurological disorders by Cryan et al, confused researchers have mistaken reducing stomach pain for curing autism (yet again).
Now, autism researchers, when was the last time you had a hurty tum?
How was your behaviour?
Having an ‘aha!’ moment now?
If you want a hint of the joys within the Lancet paper: it references Tomova et al’s 2015 paper Gastrointestinal microbiota in children with autism in Slovakia, which involves nine autistic children ages 2-9, in an unblinded study (meaning they knew which kids got the probiotic supplement) and parent reports of “behaviour.”
Apparently after the treatment autistic children showed less “challenging behaviour” which led to the the supposition that “…appropriate… microbiota is required for normal social development.” The problem is that autism isn’t a behaviour, any more than being Deaf is a “behaviour.”
Here’s Cryan in an earlier paper, The microbiome and childhood diseases: Focus on brain-gut axis, waving Medical Model of disease and disorder at us, and staking a claim in the theory that gut imbalance may manifest in childhood ‘diseases’ such as autism:
|[image: Screen shot of the abstract of The microbiome and childhood diseases:
Focus on brain-gut axis, which claims autism is a “disease” that may manifest as
a result of perturbation in gastrointestinal microbiota.]
This is why participatory research, involving actually autistic people, is so important, for example the DART project findings re: autistic people having a different, not broken, social system. I wish the researchers would get out and meet some of us.
Now, if we want a good discussion about what we do to improve autistic lives, we do the following: We look at the results of big surveys like this one from Autistic Not Weird, asking autistic people with learning disabilities and limited speech if they want curing. And we find out that the answer, generally, is “no.”
|[image: Bar chart of survey results, in which more than 50% of non-speaking
autistic respondents and more than 59% of autistics with learning disabilities/ID
“strongly disagree” that if there was a cure for autism, they would take it.]
Second, we find ways to communicate with autistic people to ask what do want. That’s been done a lot. And autistic people want:
- Better support for us and our families
- Better understanding
- Treatment for medical conditions such as epilepsy of course
- A proper voice in our future
At the moment, we have an autism industry that has done little to nothing of the above list, leaving families floundering and individual almost entirely misunderstood and unsupported. I worry greatly for autistic children left in distress and pain, and offered only some faux cure.
So, if we can reduce stomach pain in any child, fabulous. Yes please. And for adults too.
But, when that discussion involves autism, researchers must invite autistic people to co-design, to co-lead on what outcomes they want.
Then, we don’t get it wrong.
I will repeat what I’ve said for decades and believe utterly: That every single person, autistic or not, with a learning disability or not, is of equal value, equal worth, equally bringing their whole selves to the world. And equally deserving of a life of joy.
As a wise academic tutor said to us recently, the voice of autistic people is missing from nearly all autism research. In my view, as a result, we will continue to do nothing but waste time and money, leaving people in distress.
None of us want that.
Meantime, returning to Tomova’s sample study of the nine autistic children:
- No autistic voices were involved in the design, to our knowledge.
- No-one bothered asking the children if the probiotics helped them—the study included only the parent’s reports on “behaviour.”
- No-one did follow up, as far as I can see, so… we don’t know if:
- The parents just invented that their children were better behaved.
- The parents imagined their children were better behaved.
- The children felt so peculiar that they lost the ability to ‘misbehave’ as much
- Dreadful things happened thereafter
In fact, asking the children anything at all is something most researchers have never thought of, let alone asking them in ways that they can cope with (environment, methods, timings, etc).
The study tells us precisely nothing about improving autistic quality of life. For all we know, the children could have had a worse quality of life afterwards.
The ethics of such “bring me autistic children—make them take this—observe them….now get rid of them” research is appalling.
And until researchers start involving autistic people in their research in meaningful ways, it will keep happening.