Reading HN has the benefit of making me wonder how brainwashed I am.
Reflecting now, maybe it's my deeply held belief that everything is propaganda[0] and nobody that appears smart is honest (with the possible exception of a handful of Finns I have met in person and Western Europeans that I have met online, plus a couple scions of the ultrarich or geniuses I have had the luck to uh hang out with, the last category of totally unknown autistic --compared to Demis-- and thus defying the assumption of "appearance"..? anyways.. )
.. so should I be absolutely terrified of myself "just appearing smart but in no way autistic" to others? A question to ask the therapist :)
>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.
What's more plausible? Did they cure low functioning autism in two years? Or did they simpily miscategorize the kids and the kids grew out of their diagnosis as they matured?
I got bad chronic constipation after four years as a strict carnivore. I didn't get relief just by adding back fiber, but I did by adding fermented foods like kimchi. I wonder if ferments are a more natural way than fecal transplants to repair the gut microbiome, possibly treating autism. Studies have been non conclusive, but this story makes me think it's worth pursuing.
I wonder if there’s any study linking C-section birth, autism and microbiota? Or newborns that have to stay in incubators?
I understand a newborn gets its microbiota naturally by contact with the mom in the first days, maybe all the sterile environment involved in surgery changes that.
>> In early 2022 Krajmalnik-Brown and colleagues patented a specific bacterial formulation and spun-off a commercial company called Gut-Brain Axis Therapeutics.
I was a little surprised to see this.
So the university researchers use time and money from the university to make a discovery, extending on previous published research, and then patent it and start their own for-profit?
Excuse my ignorance, but is that how it's done generally? Where's the upside for all those who are potentially affected?
It kinda makes sense - Presumably the university is involved somewhere still, and it needs to be commercialised somehow, but..
Many autistic children have extremely limited diets. For example, a geneticist friend of mine saw a case where an autistic child had been referred for genetic testing because of horrific, chronic, spontaneous wounds on gums and skin. Turned out to be scurvy, because he had exclusively eaten Wheat Thins for the last 3-4 years, which aren’t fortified with vitamin C.
I would fully expect that a monotonous diet leads to a heavy skew in the gut microbiome as specific bacterial species that thrive on that diet are selected for, others against. It makes some sense that a fecal transplant could repair the damage. If the diet has shifted or expanded, the transplant could lead to long term benefits by restoring newly-viable bacterial species, perhaps by facilitating digestion of the new types of food.
I’d be curious to see a factoring out of the diet composition, gut microbiome, genetics, and severity of autism symptoms.
We usually call these our "safe foods" and yes, it is a very real problem for many of us in the autistic community, specifically around nutritional deficiencies. In a similar vein, as a child I went several years just eating plain Cheerios. For a close friend it was chicken nuggets.
Given how many kids are told to just "shut up and eat it" - and/or didn't have extreme pickiness but got DX'ed perhaps as an adult - I'd say there's a ton of research required to even suggest this as a plausible cause (even for a limited number of cases). It might make things worse, but I highly doubt it's causative.
The number of stories I’ve read in the last 15 years that amount to: “desperate after years of trying everything, we bought a blender and ground up my wife’s shit and put it up my butt, and within a 24 hours I was totally fine”
I would still be cautious with such findings. Many autistic people are picky eaters, also some of them have issues with peristalsis. This might affect the microbiome as well. While it's plausible that it might help a subset of people, we should not overgeneralize since autism is a very heterogeneous condition, usually with pronounced genetic predisposition. Overall, it doesn't seem to be a cure.
Title is a bit misleading. It’s not a fecal transplant. It’s tablets and powder (for the pitt-hopkins cases) of microbes from fecal donors. Consumes orally.
It is marked as having results submitted but quality review has not been completed.
N=60 and a placebo group, which is better than the N=18 and no placebo group of the first study.
There have been so many small scale trials showing amazing autism improvements that failed to replicate in larger, better controlled trials. I wouldn’t get excited yet.
The typical pattern is to show unbelievably good results in the first open-label trial with a small number of patients (their n=18 trial that claims to have cured severe autism in many children), squeak by with some marginal improvement in the next trial over placebo, then the third trial becomes a game of trying to keep the study small enough that they can hope to p-hack a result that the FDA might accept.
That said, your reasoning is probably still correct. There's no placebo group, and a lot can change over a 2-year follow-up, with participants aged 7-17. Maybe they went to speech therapy or just matured and learned more coping behaviors. The 2019 followup also notes that 12 of the 18 participants made other diet and medication adjustments. They claim the adjustments were minor but that's still more noise, and it doesn't account for unreported social/environmental changes.
> There have been so many small scale trials showing amazing autism improvements that failed to replicate in larger, better controlled trials. I wouldn’t get excited yet.
Unfortunately yeah, it's unlikely anything exciting will replicate in a larger RCT other than maybe the gut biome improvement since that seems directly mechanistic, but that's just a gut feeling.
AFAIK fecal transplants do not work well long term, has there been any research in making them more sticky? Lots of things you could trial but I have a feeling it’s the immune system responding to the right bacteria incorrectly…
The bacteria in your gut come from food, the long-term fix is to eat a better diet. Unfortunately, this is quite confusing for most people because you can't see the microbiome in your food, and the only practical way to sense what kinds of bacteria you're promoting with your diet, is to ask yourself "how do you feel" which can be affected by all sorts of unrelated things. I mean, most people don't even really think about how they feel, they wouldn't be able to answer the question.
First they gave them the name "assburgers" (aspergers) and now this is the solution medicine is proposing?
It's like the medical community wants all high functioning autistics to get bullied like hell in their formative years. Similar irony to "lisp" being unpronounceable by the very people who have a lisp.
> Prior to the study, 83% of participants had "severe" autism. Two years later, only 17% were rated as severe, 39% as mild or moderate, and incredibly, 44% were below the cut-off for mild ASD.
First website where I've had to disable first-party JavaScript just to be able to read a text-based article. Even Firefox's reader mode was hijacked by their anti-ad-blocker script. Shameful.
I find this interesting because my first awareness of a link between gastrointestinal problems and autism was in the retracted so labelled "fraud" paper by Andrew Wakefield et al in 1998 which noted a link between gastrointestinal disease and autism in the subjects of the study.
In fact it is the subject of the paper, not the MMR vaccine which was the cause of the "controversy".
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[ 5.2 ms ] story [ 79.6 ms ] threadThis comment should be deleted.
Just kidding.
Reading HN has the benefit of making me wonder how brainwashed I am.
Reflecting now, maybe it's my deeply held belief that everything is propaganda[0] and nobody that appears smart is honest (with the possible exception of a handful of Finns I have met in person and Western Europeans that I have met online, plus a couple scions of the ultrarich or geniuses I have had the luck to uh hang out with, the last category of totally unknown autistic --compared to Demis-- and thus defying the assumption of "appearance"..? anyways.. )
.. so should I be absolutely terrified of myself "just appearing smart but in no way autistic" to others? A question to ask the therapist :)
[0] https://www.psypost.org/intelligence-makes-people-more-trust...
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.
I understand a newborn gets its microbiota naturally by contact with the mom in the first days, maybe all the sterile environment involved in surgery changes that.
I was a little surprised to see this.
So the university researchers use time and money from the university to make a discovery, extending on previous published research, and then patent it and start their own for-profit?
Excuse my ignorance, but is that how it's done generally? Where's the upside for all those who are potentially affected?
It kinda makes sense - Presumably the university is involved somewhere still, and it needs to be commercialised somehow, but..
I would fully expect that a monotonous diet leads to a heavy skew in the gut microbiome as specific bacterial species that thrive on that diet are selected for, others against. It makes some sense that a fecal transplant could repair the damage. If the diet has shifted or expanded, the transplant could lead to long term benefits by restoring newly-viable bacterial species, perhaps by facilitating digestion of the new types of food.
I’d be curious to see a factoring out of the diet composition, gut microbiome, genetics, and severity of autism symptoms.
that’s not going to help any.
> About two-thirds of all scurvy is found in autistic people.
https://news.asu.edu/20190409-discoveries-autism-symptoms-re...
actual paper:
https://www.nature.com/articles/s41598-019-42183-0
Is kind of impressive.
More like fecal food?
It is marked as having results submitted but quality review has not been completed.
N=60 and a placebo group, which is better than the N=18 and no placebo group of the first study.
There have been so many small scale trials showing amazing autism improvements that failed to replicate in larger, better controlled trials. I wouldn’t get excited yet.
The typical pattern is to show unbelievably good results in the first open-label trial with a small number of patients (their n=18 trial that claims to have cured severe autism in many children), squeak by with some marginal improvement in the next trial over placebo, then the third trial becomes a game of trying to keep the study small enough that they can hope to p-hack a result that the FDA might accept.
That's a slightly different clinical trial on adults, not children like the posted article. I think this is the clinical trial registration: https://clinicaltrials.gov/study/NCT02504554. Here's the followup report in 2019: https://www.nature.com/articles/s41598-019-42183-0
That said, your reasoning is probably still correct. There's no placebo group, and a lot can change over a 2-year follow-up, with participants aged 7-17. Maybe they went to speech therapy or just matured and learned more coping behaviors. The 2019 followup also notes that 12 of the 18 participants made other diet and medication adjustments. They claim the adjustments were minor but that's still more noise, and it doesn't account for unreported social/environmental changes.
> There have been so many small scale trials showing amazing autism improvements that failed to replicate in larger, better controlled trials. I wouldn’t get excited yet.
Unfortunately yeah, it's unlikely anything exciting will replicate in a larger RCT other than maybe the gut biome improvement since that seems directly mechanistic, but that's just a gut feeling.
An unexpected result for sure.
All applicants will be fed recycled byproducts for free.
It's like the medical community wants all high functioning autistics to get bullied like hell in their formative years. Similar irony to "lisp" being unpronounceable by the very people who have a lisp.
Pretty incredible if true!
In fact it is the subject of the paper, not the MMR vaccine which was the cause of the "controversy".