The Autism Enigma

December 12, 2011 8:27 PM

The Autism Enigma is a documentary that explores the potential link between gastrointestinal bacteria and the disorder. It is viewable online through CBC's The Nature of Things. [Full show on Vimeo, for those outside Canada.]

The Finegold study

The MacFabe study

posted by never used baby shoes (38 comments total)

And of course, neither of the two studies say word one about vaccines, so what's the first comment in the "viewable online" link? So thank you very much Dr. Wakefield. One day we'll have autism nailed and people will still be doing stupid shit and jeopardizing their children's health thanks to your fraud.

That rant out of the way, I'd be interested to see the effects of other carboxylic acids since we regularly tack them onto proteins for various regulatory purposes (for example, octanoic acid and the hunger response).
posted by Kid Charlemagne at 8:47 PM on December 12, 2011 [12 favorites]

ANECDATA: THING1 isnt autistic but not only did his allergies "explode" right after his MMRs, but as i was trying to learn how to manage the 17 different allergy markers of a 2 year-old, i found out he had many medical problems (immunological & gastrointestinal) that seem to be common among autistic children.

it was talking to many autism parents that i learned what questions to ask of a MD & the value of switching to a family MD with a strong understanding of immunology & nutrition. if you meet my son today, you'd never know he had so many health issue when younger. in many ways, i feel we got lucky.
posted by liza at 8:49 PM on December 12, 2011 [1 favorite]

Really interesting, thanks for posting. Haven't watched the documentary, but do they suggest why the bacterial flora might be different in autistic children? Where is most of this stuff originating from? The mother in utero? Or is the suggestion that autistic children's immune response is different, allowing for more diverse flora in their intestines?

neither of the two studies say word one about vaccines

In fact, the Finegold study does mention that mercury may be a pathway for bacteria-related autism, mentioning vaccines with mercury as a concern. But I have zero interest in that fight.
posted by one_bean at 9:13 PM on December 12, 2011 [2 favorites]

it's a scientific fact.

Not debating that even a little bit. My job for 15 years was pretty much based on the notion that it's embarrassing when your product causes people to develop horrible autoimmune issues compared to which death might be preferable. (Initially it was thought this was a result of someone who should have been doing my job not doing their job - turns out it was something different.)

But here we have real live honest to God experimental data. It's mouse data, but it at least flies in formation with some human observations and it's got high correlations, reasonable dosing, a hypothetical method of action (I'm looking mostly at the MacFabe paper here) and whats the first response? ZOMG Vaccines!

It's like someone from Mothers Against Drunk Driving showing up to make comments about how dangerous drunk driving is during a discussion of power tool safety, with the difference being that the correlation between drunk driving and plowing into a tree is pretty well established and largely Lancet retraction free.
posted by Kid Charlemagne at 9:14 PM on December 12, 2011 [5 favorites]

As a brother of a young woman with autism*, I've learned not to get too excited about any find, as so few things pan out. I'm cautiously optimistic science is getting closer.

And it seems like alternative medicine is largely full of false starts and quackery that people won't reject even after it's been disproved. At least in conventional medicine, therapy that's harmful gets discontinued. It's heartbreaking to see parents not ready to accept their children's reality do stuff like hyperbaric oxygen chambers or chelation therapy, both of which are potentially dangerous and do more harm than good at best. And don't even get me started on the anti-vaccination movement, which seems to be running on nothing but momentum now that Wakefield's been discredited and thiomersal has been largely removed from the vaccine market with no results. If vaccines caused autism, even indirectly, the data would show it.

I get that parents want to help their kids and get the best, cutting edge treatment, but at a certain point, you have to accept that there's a big chance your child will need regular occupational therapy through the developmental years (expensive even short term, and much of it likely to be weaseled out of by the HMO). Add in the factor of potential long term needs of your child beyond adolescence, and suddenly, the idea of risking $20,000 on a hyperbaric oxygen chamber and similar things on the off chance it works doesn't sound so good compared to your child ending up in a state home when you die or run out of money.

This sounds like they're on to something, but time will tell. Luckily, this doesn't sound like it'll inspire anything dangerous. I earnestly hope that they do figure out a treatment with some effectiveness from this. And I also hope the scams and well-intentioned quackery produced around this that are ineffective (say, rebranded lactobacillus cultures) won't be too expensive.

*Please don't take this as an appeal to authority, I'm just stating my opinion after my experiences. It's hard not to be cynical when your hopes are raised and crushed so often.
posted by mccarty.tim at 9:24 PM on December 12, 2011 [6 favorites]

[Starting now - go to MetaTalk or email with derailing vax discussions. Period. Thank you.]
posted by jessamyn at 9:35 PM on December 12, 2011 [11 favorites]

I just finished watching the episode and I thought it was very good and informative. It seems like the gut is a vastly unexplored frontier. I had no idea that what goes on in them could be transmitted to the brain. I'm sure there are other conditions that could be explored this way, but it doesn't seem sexy enough to catch the attention of the media.
posted by Calzephyr at 9:47 PM on December 12, 2011

Tried to watch the video through the CBC link, but it's telling me the content isn't available. Is that because I'm not Canadian or did they take it down because of too much traffic?

I'm open to new theories about autism, because new theories are all we have. But I have to admit that I'm immediately skeptical of theories involving the gastrointestinal track, because of a certain gastroenterologist.
posted by sbutler at 9:49 PM on December 12, 2011 [1 favorite]

I get that parents want to help their kids and get the best, cutting edge treatment, but at a certain point, you have to accept that there's a big chance your child will need regular occupational therapy through the developmental years (expensive even short term, and much of it likely to be weaseled out of by the HMO). Add in the factor of potential long term needs of your child beyond adolescence, and suddenly, the idea of risking $20,000 on a hyperbaric oxygen chamber and similar things on the off chance it works doesn't sound so good compared to your child ending up in a state home when you die or run out of money.

I think these go hand-in-hand though. There's something immensely scary and sad about the idea that your child has a disability that will last throughout their life, especially one that might significantly impact their ability to care for themselves when you're gone. The other factor is how mysterious autism is, in cause and treatment, and how inconsistent it can be. Sometimes going on this diet or adding that supplement really does make an appreciable difference for one patient--but will do nothing for another.

I think these factors make some people--even smart, well-meaning people--vulnerable to hucksters and magical thinking. They want to try anything, because hey, who's to say it won't work? No one really knows what's going on, right? And some degree of experimentation is encouraged and probably beneficial (because as mentioned, sometimes it's really inexplicable what will work and for whom), but it becomes easy to lean on that, especially because it's scary to face the idea that you probably are not going to find a silver bullet.

It comes down to lack of knowledge and fear for your kid's future, and those are hard forces to resist. I think that, once we've got the understanding of autism that we do of, say, Down's syndrome, things will get better. The other thing that would help (to resolve the "fear for the future"), of course, is having a society and institutions that are actually committed to helping the disabled live full and secure lives, but that might be an even tougher fight.
posted by kagredon at 9:50 PM on December 12, 2011 [4 favorites]

um, and because I don't always get these things across as well as I want to: I don't mean to say that autism--or any disability--necessarily implies a "lesser" future or one where the PWD won't be able to look after themselves, and what I describe is in no way the universal experience of people with autism or other disabilities or their families; there's a really broad spectrum of outcomes and prognoses and experiences and responses and I'm just talking about one particular subset of those.
posted by kagredon at 10:02 PM on December 12, 2011 [2 favorites]

Sorry sbutler (and everyone else outside our borders), but CBC video is generally available only in Canada [/pity].

However, I did find the full show on Vimeo (without the annoying opening ad from Rogers). It's a little choppy for me here, and you get someone else as narrator in place of Suzuki, but it seems to be the same content.
posted by maudlin at 10:04 PM on December 12, 2011 [1 favorite]

Oh shoot, I never thought to check if CBC video would be available outside of Canada. Thanks maudlin!

This documentary was of great interest to my wife and I, as our oldest son has recently be diagnosed with NVLD, which some place on the same spectrum as autism. Certainly gave us lots to think about. What I kept coming back to was the fact that I already knew that what I ate could have an impact on my mood...why would it be surprising that other effects from the GI tract could affect cognitive function

What I really appreciated was that no one was claiming a cure or that they had identified a "cause"; just that this is some interesting research that needs to be further developed along with what the developmental specialists, geneticists, immunologists, etc., are doing as well.
posted by never used baby shoes at 10:23 PM on December 12, 2011 [1 favorite]

[I added Maudlin's link for those outside Canada at OP's request]
posted by taz at 10:34 PM on December 12, 2011

That Vimeo link is from the show's producers, Cogent Bender, BTW. There's several excerpts on their Vimeo channel, if anyone wants to just dip in to a specific topic.

(And is it just me and my doomed computer, or are these Vimeo videos choppy for anyone else?)
posted by maudlin at 11:05 PM on December 12, 2011

If it's gastro-intestinal that could explain why it's somewhat hereditary. On the other hand, the link could be the other way too: Altered brain chemistry might affect the immune system along with other things the brain typically does.
posted by delmoi at 11:07 PM on December 12, 2011

Where is most of this stuff [bacterial flora] originating from? The mother in utero?

Actually, a fetus's digestive tract is sterile. Babies pick up intestinal flora, uh, on the way out.

“Inter faeces et uriname nascimur,” indeed.
posted by looli at 11:52 PM on December 12, 2011 [1 favorite]

While in the shower (where all scientific insight takes place) something occurred to me.

I'm not sure we really know how consistent our internal flora is but (on preview, what Looli said about our starter set) and whatever we pick up after that comes from our local environment. Since my siblings all had the same mother I did, grew up in the same place, etc. this could give you the appearance of heredity with no literal inheritance going on. Ah, but wait, this is the future where we move around more and more and can keep going to different doc-in-the-box offices until we find one that will give us antibiotics for our cold / flu despite antibiotics not doing any good at all against viri.

So my question is, over time is autism looking less heritable? Do the odds stay about the same between siblings if both were born in the same city than if the family moved sometime in between? Or if mom had some sort of massive bacterial infection and had to go on God's own antibiotic regimen?

This seems like the sort of thing where the data might already be out there somewhere (and I can't imagine no one else has considered it).
posted by Kid Charlemagne at 12:12 AM on December 13, 2011

Thanks for the American friendly link :) Watched it, many interesting ideas. I can't help but connect it with all the news about fecal transplants lately. It's good that doctors of all kinds are paying more attention to our symbiotic relationships with bacteria and how they do/don't work.
posted by sbutler at 12:34 AM on December 13, 2011

Really quickly, this is a really cool set of links, but I just want to note that it's unlikely that gut flora are the entirety of the story here. Recent genetic studies (e.g. -- abstract w/ article behind paywall) have increasingly found that copy number variations are associated with autism. Copy number variations involve stretches of a chromosome being deleted or duplicated; they can be inherited, of course, but also arise spontaneously at higher rates than other types of mutations. So there's a clear mechanism there for how autism could be heritable but also come from nowhere. Of course, the connections to gut flora are still really intriguing and I will be really interested to see where this line of inquiry goes.
posted by en forme de poire at 1:06 AM on December 13, 2011 [2 favorites]

As someone who is autistic, the search for always makes me really nervous. I was talking about this with fellow autistics in my friday group. it has potential, but the brain is so pliable, and there is so much going on, that there is most likely not one explanation, and the explanations that exist seem to miss one thing or another...this one doesn't explain why it seems genetic.

three other things:
a) none of these explanations are good at all about why boys are more autistic, and i think that it's frankly, a reporting issue.
b) the gut flora thesis doesn't explain why most autistics i know have close relations who are autistic.
c) this is an unusal opinon, coming from being queer, but autism is my culture, how my head works, and all of this seeking the mysterious origin of it seems to be the first gambit in curing it--which is stated explicitly by orgs like autism speaks.

i really think all of this money and energy and time to find this mysterious, el dorado like origin of the autistic brain precludes seeking an autstic culture and an autistic self. so, mcarty.tim--occupational therapy is great, but there are so many realtives talking for us, and it's occupational therapy to make us better as people, not to get rid of who we are, if that makes sense?
posted by PinkMoose at 5:03 AM on December 13, 2011 [3 favorites]

to be clearer, i find it kind of offensive, that my autism, which is a gift, is something that n eeds to be treated.
posted by PinkMoose at 5:04 AM on December 13, 2011 [7 favorites]

*facepalm*

How can any respected scientist continue to cite papers by Andrew Wakefield ?

The man committed outright fraud.

And besides, autistic kids are really finicky eaters. As in dangerously, sometimes pathologically, finicky. Is it any surprise their intestinal flora might be abnormal?
posted by ocschwar at 6:02 AM on December 13, 2011 [5 favorites]

to be clearer, i find it kind of offensive, that my autism, which is a gift, is something that n eeds to be treated.

Your autism is not everyone's autism.
posted by curious nu at 7:08 AM on December 13, 2011 [9 favorites]

PinkMoose,

but isnt autism considered a spectrum? it's one thing to be able to re-calibrate learning as a family in order to deal with autism as a gift. it is a whole'nother thing to add to that managing life around potential anaphylactic shocks, environmental sensitivities, IBS, celiac disease, COLIC, etc etc

COLIC in particular became my point of solidarity with many autism parents. conventional parenting wisdom is that colic only lasts a few weeks, maybe a couple of months after birth because allegedly the baby's guts are still adjusting to life outside the womb. and many pediatricians dismiss it as a "thing that shall pass".

but then, a year passes and maybe too years and the 4-5 hours of crying really haven't stopped. now they're called "tantrums". now the kid doesn't cry for 4-5 hours straight but it's intermittent because since many can communicate and have motor skills, the colic is now manifesting as throwing stuff around, screaming, running around like manic --everything we associate with the terrible twos and the really terrifying threes but that really are the only ways the kids with health problems are saying they're in pain, something's wrong and it's not behavioural but a very physical reaction to some thing/s that is/are making their lives miserable.

in liza's perfect health care world, i would add two tests to the battery of medical interventions we have post-partum: one for genetic markers based on the family's history of medical conditions and another one for allergies. and i would ADD the allergy test to the schedule of immunizations in those first 2-3 years and just make it annually all the way into puberty. not because of the immunization per se but because that schedule in many ways coincides with kids' exposures to new foods and new environmental pressures; especially for those who end up in schools/group care at a very early age.

as i said up thread, i bonded with autism parents who were in the same journey of having to manage their kids' many health problems. not one said their autism was cured but their lives as autistic families became a kabillion times better once they were able to tweak their diets and surroundings.

when i got pregnant with THING1 i knew there was a big possibility he could inherit the allergy problems both his father and i have; but the pediatrician we had at the time didn't think we needed to do anything about it. she really wasn't big on keeping up with allergies or dealing with kids with the gastrointestinal problems of a child beyond saying "he'll grow out of it". it was because of autistic parents' successes that i not only demanded an allergy test when THING1 was 2yrs old and switched to our current family MD and allergy MD; but actually changed all of our diets.

another anecdata: of all the autism/allergy moms i've met in my health journeys, almost all of them had some sensitivities/allergies before having kids but almost all of them developed new ones after giving birth. there's only 2 moms out of like 8 i can count right off the top of my head didn't have any health changes at all.

so for example, THING1's test came back showing he had a high sensitivity to wheat. even though he isn't allergic to it nor celiac, the minute i banished wheat from our home, life became infinitesimally easier. it wasn't just THING1's "colicy" mood swings or severe IBS. MY OWN mood swings and the amenorrhea i used to suffer disappeared. their father's eczema (which both THING1 & THING2 inherited) also almost disappeared. when it came to the severe "diaper rash" THING1 suffered even after being out of diapers for a while, THING2 (who is 3 yrs younger) barely suffered it even though his was actually even worse than THING1's.

sorry about the slight food/allergy derail, but this is basically my link to autism. i learned a lot from autism moms. i learned to understand crying & behaviour as forms of language kids use to communicate when they don't have the words to describe what is going on. the learning to listen outside speech was really illuminating and it's something i've actually carried over into my work as a communications consultant.

i've never met a parent who wanted to cure their kids autism. all they really wanted was to make their kids and families healthy and happy. and that meant for many to go against conventional wisdom and in many ways become champions in new ways of dealing with not only autism but parenting.

am very grateful for having met autism parents in my early years as a mom. they are some of the most committed people i know when it comes to not only parenting but community. i never ever got from any of them a, "oh, but he'll grow out of it". on the contrary, almost always i'd end up having to take notes on the many suggestions and wisdom they'd offer.

so during those early years as a n00bie mom, autism parents were indeed a gift.
posted by liza at 7:18 AM on December 13, 2011

i know what yr saying, and i was trying to be cautious, and i am at the edge of the spectrum, so i cant talk for other folks, but you gotta be careful not to strip everything away.
posted by PinkMoose at 8:47 AM on December 13, 2011 [1 favorite]

> i've never met a parent who wanted to cure their kids autism

Hi there!
posted by The corpse in the library at 9:26 AM on December 13, 2011 [9 favorites]

I'm curious if there is a rising rate of autism among Somalis when they move to Canada, or if it's a rising rate of diagnosis of autism. Unless I missed it the documentary didn't make that clear, and that's always an important distinction to make. Blah blah increased awareness blah blah expanded definition blah blah we know the drill.

(To spare my fellow parents-of-autistic kids some time: I just watched the documentary, and although it was interesting I doubt there's anything in there you don't know in general already. It goes into interesting detail about how the gut stuff might be related to autism so it's worth watching if you have a spare hour, but there are no clear conclusions.)
posted by The corpse in the library at 10:45 AM on December 13, 2011

I thought this research was interesting, as it implies quite strongly that disorders on the autistic spectrum can have varied causes:

The biological causes of autism have been a source of inquiry and debate for half a century. The wide range of cognitive and social deficits that are diagnosed as autism spectrum disorders are often quite disabling, so there is an urgent desire to find treatments. Now, scientists are beginning to discover that not all autism-related disorders are alike. They appear to have different implications for brain function and, consequently, treatment.

b) the gut flora thesis doesn't explain why most autistics i know have close relations who are autistic.

As mentioned in the thread, you get most of your gut bacteria from your mother(although c-sections can interrupt this process). But gut bacteria populations can be affected by human genes as well, as human genes can govern the terrain the bacteria live on, as well as the human molecules that gut bacteria interact with.
posted by melissam at 11:37 AM on December 13, 2011

I sent a memail, but I cannot let this go--I consider you wanting to cure yr child of autism genocidial. I consider it genocidal in the same way that i would if you said that you wanted to cure your child of his queerness, or his blackness. regardless of how it is formed, it is a core part of his identity. regardless of the problems, that come with autism, denying their existence is intensely problematic, and no matter how cautious i can be, having someone say that they find part of my identity so odious they want to medically carve it profoundly odious.
posted by PinkMoose at 1:16 PM on December 13, 2011

& re: parents who want to cure their kids, see Autism speaks.
posted by PinkMoose at 1:16 PM on December 13, 2011

Pinkmoose, you don't know anything about the corpse or her child. You don't have a clue about what kind of effects her child feels/suffers/has from autism. She said nothing about your existence, as is appropriate, since she doesn't know you or your life. You should really dial it back when you don't actually know anything about the particular circumstances.

What I wish were an unnecessary data point, but I speak as a queer woman of color, so I get - really, really get - the issues around "curing" something like this.
posted by rtha at 1:25 PM on December 13, 2011 [10 favorites]

I saw and replied to your Memail before I saw this, but if you'd rather discuss it here I'm okay with that.

I believe that my son's autism is holding him back. There are things he would like to do that he has not been able to so far because of his autism. I don't see any benefit to his having autism, and many disadvantages. Even if society totally accepted people with autism as just being part of a diverse world -- to speak to your point of autism as being comparable to being gay or black -- he still would have problems caused by his having autism.

Your experience may well be different than his.
posted by The corpse in the library at 1:27 PM on December 13, 2011 [2 favorites]

i wrote a response and erased it and wrote it again, and i'm sort of in tears, so i should back away. i find the idea of cure really offensive to everything that is the core of my being. it took me so long to recognize this, so many decades of being mainstreamed, medicalied, so long with other people's assumptions that i needed to be cured, that the autism was holding me back, this life time of ritualised humilations. i never want that to happen to another kid, and this desire to mainstream them, means we lose so much...i was miserable because the adults in my life assumed that I would be happier w/o autism, and i got happier and more stable when as an adult i found autistics, and found my voice.

i'm sorry, that was really really harsh of me, and i am on the edge here, and i should back off.
posted by PinkMoose at 1:38 PM on December 13, 2011 [3 favorites]

I didn't mean to make you feel attacked personally, PinkMoose, and I'm sorry if I did. We have very different perspectives on autism and we can both be right.
posted by The corpse in the library at 1:45 PM on December 13, 2011

Wow, yeah, the autism spectrum is a very diverse place and talking about a cure is often about alleviation of symptoms that make affected people miserable. I have several relatives on the spectrum as Aspergers for whom the diagnosis didn't mean they needed treatment (most of them were successful adults when diagnosed like this author), but allowed them to finally understand themselves.

But I have met autistic children who can't talk and live an isolated life, spending a lot of it in a fetal position rocking back and forth. They can't live independently and would end up in a nursing home if their parents died.
posted by melissam at 1:55 PM on December 13, 2011 [4 favorites]

this is an unusal opinon, coming from being queer, but autism is my culture, how my head works, and all of this seeking the mysterious origin of it seems to be the first gambit in curing it--which is stated explicitly by orgs like autism speaks.

Yeah, there is this creepy eugenics-y vibe to the way that a lot of people talk about autism. Even the acronyms of some autism groups - DAN (Defeat Autism Now) for example - have this weird sense of autism being this bad thing that must be eliminated at all costs, instead of focusing on ways to make it easier for an autistic person to communicate and get around in the world. Yes, let's find out why we are seeing an increase in cases; but while we're at it let's invest some money and time into developing better technology & education programs that build on the talents of the individual with autism.

I also understand, however, that it's easy for someone like me who has a child with mild autism - he makes eye contact from time-to-time, is affectionate, social, creative and tells me he loves me every day - to say that someone who has a child with more a severe ASD is bad for wanting to make their child's autism go away. I know and know of parents who ache for any sign of emotional connection from their child and grieve for the lack of it; who worry about who will care for their child when they pass on. It's heart-breaking.

I hate the idea of "defeating" my son's autism - it's who he is and to take it away from him would make him a lesser, not greater, person. Seeing the world through his eyes has enriched my life in so many ways. But if my child wasn't able to communicate, stimmed to the point of self-injury, was afraid of things that the average person barely notices and had a propensity for running away - you can bet your ass that I'd want a cure for my kid.
posted by echolalia67 at 6:05 PM on December 13, 2011 [6 favorites]

Wow. It hadn't occurred to me that the had projectile vomiting the aspie in my life had as an infant (he'll grow out of it), extended colic, (he'll grow out of it) and chronic constipation (he'll grow out of it; give him apricot nectar), and his later dramatic tantrums could have had the same basis. I'd thought that the dramatic behavior was over-stimulation. Interesting that the digestive issues and the behavioral swings could have been so closely linked. I'll be watching for more research.


Thanks for the post!
posted by theplotchickens at 3:21 AM on December 14, 2011 [1 favorite]

I'm fortunate enough that on occasion I get to get to speak with someone who is connected to UC Davis's research program. She said that they have identified about 6 different autism sub-types so far and several genetic anomalies that are correlated with autism. My son is one of those people with autism that has never had any signifigant GI problems. He's a picky eater, but that's about it.

Autism is by no means a homogenous disorder; I liken it to a medical term like "nasal congestion". Think of all of the things that can cause nasal congestion - allergies, viral or bacterial infection, a cancerous growth that impedes proper drainage of the sinuses, damage to facial bones & tissues caused by a blow to the face, birth defect, etc.,.

Autism" like "nasal congestion" is just a word that describes a set of externally observed behaviors/symptoms. It will probably take decades for us to get a real handle on all of the factors involved with a person who has been diagnosed with autism. In the meantime, our focus should be on creating tools that allow a person with autism to move around the world with greater ease.
posted by echolalia67 at 7:17 PM on December 14, 2011 [4 favorites]