>Editor's note: Readers often ask us for follow-ups on memorable stories. What has happened to this story over the years? This article was originally published in 2019 but it has been re-edited and updated with new information current as of April 7, 2025. Enjoy!

Now that is something that should be done more often - especially in science journalism, but not only. We cruelly lack long-term vision - not only forward but backwards too.

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Aurornis 3 hours ago | parent | next [-]

I agree about the updates. However, news sites like this one aren’t combing through research to find things to update. They’re responding to PR outreach from companies. Did you notice there isn’t actually a link to a new publication? It’s only quotes from the company. They’re repeating PR material, not updates on the research.

There’s a subtext here that isn’t immediately obvious without reading more from the company trying to commercialize this formula: Their small phase 2 trial is underway but results haven’t fully been released as far as I can tell. It appears they’re trying to do a PR push based on their early claims of positive results, before publishing everything. If anyone can find more details please correct me if I’m wrong.

This can be a little suspicious when companies do this because before the full results are available because it’s usually associated with a rushed push to drive investor interest at the time they think it’s most optimal. When the optimal PR push timing is before full results are released, it’s not a good signal that the results are on track to be great.

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doctorpangloss 2 hours ago | parent [-]

They aren't the only company doing this exact therapy.

It isn't a good one.

When I looked at preclinical for one of their competitors, that was the exact same thing, the issue was study design. Specifically, you are shoving something up an autistic kid's butt once a day or twice a day. They only did this to the placebo arm for 3 days, and only to healthy kids, whereas the treatment arm did this for 8 weeks.

If I punched you in the chest as hard as I could once or twice a day, do you think you'd have a behavioral change? That's their endpoint. If I called it a "medical" punch, does that change anything?

Can an autistic kid learn how to answer a test to get the thing to stop being shoved up their butt? I think so. By all means though, I encourage people to make this risky investment if they think this treatment pathway is real. It sort of is! If you want a behavioral change, we have a good idea of a way to get that from defenseless kids. But not for a good reason.

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jtc331 2 hours ago | parent | next [-]

Given there are cases of sudden onset autism being resolved with antifungals, it’s at least not implausible that fecal transplants could be effective too.

	▲	Aurornis 44 minutes ago \| parent \| next [-]
		There are so many claims of autism being cured in a couple people with different drugs or supplements out there. They’re always followed by thousands of self-experimenters where nobody can reproduce the result. The explanation is almost always placebo effect. A parent or doctor is so convinced that they’ve found a cure that they change assume it worked, change their behavior toward the autistic person, and believe that a dramatic change has occurred. This is also why the placebo arm of every autism study also shows improvement.
	▲	doctorpangloss an hour ago \| parent \| prev [-]
		No. No chance. It's completely implausible. This is reflected in their actual Phase II trial - NCT06503978 - whose primary endpoint is relieving GI symptoms. It's far from curing autism. It is idiosyncratic to target this population. They could do the same trial with healthy adults, but of course, twice daily massive laxatives is not something very marketable. The reason this product is the way it is is because ASD kids cannot really say no.

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senordevnyc an hour ago | parent | prev [-]

This seems a wild theory. So in your view, effectively abusing autistic kids results in a long-term, sustained, massive reduction in their autism symptoms? Highly skeptical on that, chief. I’d bet good money it goes the other way, and causing intentional pain and suffering in autistic kids would only worsen their symptoms.

I don’t even think I understand your proposed mechanism here. So these kids have this treatment multiple times a day, for eight weeks, and nothing they do during that time changes it, but then suddenly it stops, but they modulate their behavior for many months, what, just in case it happens again? When their behavior changes during the treatment had no effect on whether they keep getting the treatment? How does that make any sense?

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embedding-shape 5 hours ago | parent | prev | next [-]

The typical publishing methods kind of favors that approach of publishing new articles instead of updating existing ones though, for better or worse.

Maybe science journalism should just adopt a wiki-model instead, where there is one article per "subject" then any new (confirmed?) information/data goes into that, and interested people can subscribe to updates there instead.

Wikis generally have much better long-term maintenance given the right individuals running it, compared to a "publication journal" where things tend to get out of date eventually, with no way of actually seeing when old articles get updated.

	▲	Sharlin 5 hours ago \| parent [-]
		No problem with publishing new articles, as long as they're properly contextualized and link to their predecessors – and the latter updated to link to the new information as well.

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aaron695 4 hours ago | parent | prev [-]

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