Megadoses of Amino Acids!

There’s a new study, reported in the LA Times (and elsewhere), that a rare form of autism that is accompanied with epilepsy is treatable with drug store supplements.  Or something to that effect.

I admit, I haven’t read the study.  I don’t need to – I know the effect it will have.  We’re going to see protein-diets, with protein-moms arguing online about what kind of protein cured their kids.  Great.

Sure, if this study found something that helps people with their lives, helps with epilepsy, in some cases, that’s a great finding.  I will note that the study is missing one key element: people – it tested mice, which while similar to some people (oh, sorry, I was thinking rats, not mice), aren’t exactly people.  So they have a way to go.  That’s assuming it’s not another bogus study about an autism cure, like the precursor to the last 10 or so fads in autism “treatment”.

Personally I have little tolerance for this type of thing.  Oh, no, not little tolerance for helping people with epilepsy, but rather how this will be clung to by some as their hope, while they give kids who don’t have these genetic sequences a bunch of dietary supplements (or, worse, completely screw with the kid’s diet unnecessarily).  I’m assuming the study found something real – only time will tell there (and a bunch of autistics who know science way better than me will rip it apart in a few days if it’s bogus anyhow).  I also note that the researchers say this isn’t a general cure for autism (and probably say they aren’t even sure it’s a cure for whatever type of autism they are curing).  But it will be treated that way by many – mark my words.

We don’t need quack cures.  We need to have a say in our lives.  We need a place in society – whether we get cured or not.  We should be able to have some control, some ability to live our own dreams.  That’s where I’d like to see the attention.  Not a bunch of people who will be sure that their kids have that genetic sequence and will be cured by a bunch of who-knows-what purchased at the local health food store.

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3 Responses to Megadoses of Amino Acids!

  1. K Hedges says:

    I agree that the results of this study are likely to be blown way out of proportion. I completely agree they need to do tests in humans, but otherwise this seems like a reasonable study and the extrapolation to humans isn’t unreasonable. I was pleasantly surprised that the LA Times writeup was so clear that it affects only a rare form of autism/epilepsy. If you’ve ever read the warning labels on stuff with aspartame about people with PKU, that’s a genetic condition where the person can’t break down one of the amino acids found in aspartame. Unless they eat a special diet that minimizes it, severe brain damage ensues. This study seems to have found the opposite–people who break down an amino acid so fast that their brain doesn’t get a chance to use it. After checking the abstract for the actual study, I didn’t see any distortions in the LA Times piece; it seemed like a good translation for non-biologists. Which doesn’t mean they’ll understand the limitations, however.

    Therefore, I also agree that a lot of people are going grab this idea and start giving their autistic kids BCAA supplements even if they don’t fit the symptom profile for this rare condition. However, I’m glad that something that can benefit (at least a few) autistics came out of this research–though it’s likely someone will instead market a prenatal test to detect that variant. If followup studies show that the supplement really does reduce seizures for people with that gene variant, whether or not it affects the person’s autism, that would be great. From what I’ve read from autistics with epilepsy, autism is part of them but they’d LOOOOVE to get rid of the seizures. I doubt this supplement would be useful for epilepsy in people without that gene variant, though I’m sure people will try it anyhow.

    One thing that’s particularly annoying about people trying to treat themselves (for anything) using drug store supplements is that there is so little regulation of the supplement industry that the label is likely to resemble the contents only by coincidence! When inspectors (or even Consumer Reports labs) test regular retail supplements, there may be none of the active ingredient advertised on the label, or there may be more than listed–which could lead to overdosages. There may be intentional adulteration with drugs to get the desired effects, or unintentional contamination with heavy metals, inactive plant material, bug parts, or rat feces.

  2. I haven’t read the scientific paper yet (disclaimer). But I honestly think that quite often, autism is exacerbated considerably by other factors. For me, I have a very over-reactive sensory system. If I manage to make my sensory system happy, I can pass as NT some of the time. (I don’t generally try, but I do have the ability to put on the show for brief periods). If my sensory system isn’t happy, I go absolutely insane, and it can cause shutdowns, meltdowns, loss of words, and all sorts of other more typical autistic behaviors. Now don’t get me wrong – when my sensory system is happy, I’m still autistic, but I’m much better able to learn, think, and process what I WANT to, as opposed to when my sensory system is unhappy, and I can only try to process the misery-causing thing. So this is a ramble in which to say that if you stop the seizures of people with this particular gene variant, I have absolutely NO DOUBT that you would see improvements in behaviors – remove the stress, and you get a much happier, more capable of learning/focusing/etc. individual. Still autistic, still with a brain that processes differently, but with a brain that is able to focus on other things.

    I think this is also the reason that some people see great improvement with certain diets – who could learn and focus and function if their stomach is in constant pain?! ESPECIALLY someone who is autistic, and has a tendency to hyper-focus on one thing. When I’m hurting, I can’t function, because all I can focus on is the pain. Fix the problems that are causing discomfort and misery, and you end up with a (still autistic) person who can focus their energy on other things. Of course you’re going to see “behavioral improvements”. Seems like a no-brainer to me…

    • Mind, that doesn’t mean I’m out there approving the idea of a “cure” – I don’t want a cure for being autistic, and I don’t support it. What I *do* support, is finding any and every way to help make my world, and every person’s world free of pain and misery. I don’t like studies like this that say “CURE FOR AUTISM”, though I do think that at least they didn’t quite do that… “cure for epilepsy that is linked to autism in mice” might be a better response. I do sincerely hope that parents don’t just blindly force this on their children.