Autism, Cannabis Oil, and the Tragedy of Hope | Vol. 2 / No. 43.3

Photo: Stephen Charles Thompson (anon_lynx), CC BY-SA 3.0, via Wikimedia Commons

Sometimes you have to give things up to be an honest skeptic.

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Few situations are more trying to a skeptic’s worldview than that of a suffering loved one for whom there is as yet no adequate scientifically-supported help. It’s the same for non-skeptics, of course: snake-oil salesmen have been forever taking advantage of the absence of adequate (let alone perfect, or even pleasant) treatments for cancer, but really anywhere that a dearth of scientifically-proven treatments exists there are people to fill that gap with one thing or another.

And the problem isn’t that these people are always malicious. Oh, certainly many of them are. Make no mistake about it, “woo purveyors” have been knowingly selling snake-oil and fake cures for centuries. But if you ask me, the real problem isn’t them. It isn’t even the willful ignorance that believers often employ, the differing standards of evidence they have for their own beliefs vs. those of the scientific establishment, or the confirmation bias that backs up the way they read cherry-picked studies that only support their initial conclusions. These are all problems, yes. But surpassing them all is something rather tragic.

The tragedy is that the weak link, the flaw that leads to magical thinking in the absence of evidence, to the “god of the gaps” thinking, is hope.

Take the recent ruling by an advisory panel in Michigan, recommending that severe Autism Spectrum Disorders (ASDs) be added to the list of things treatable with medical marijuana (the final say on legality is still months off). This was hailed as a victory by hopeful parents, but as David Gorski points out over at Science Based Medicine, there doesn’t appear to be any convincing evidence upon which to base this decision. They weren’t even clear on what kind of cannabis oil would be permitted, leaving it to parents to be “responsible for growing the plants or acquiring the cannabis, and they are in charge of dosing, frequency of use, and method of ingestion.” For example some cannabis oil is high in THC — which gets you high — and some is high in CBD — which doesn’t (or both). Does that matter? Shouldn’t we determine that?

Are there some promising studies that suggest further examination of the effects of specific cannabinoids in specific applications? Yes, but further research is definitely needed. That doesn’t mean there won’t be any benefits found in cannabinoids, but it also suggests we should be really cautious when deciding whether or not to administer them to children. Especially when — and Gorski really makes this distinction clear, too — we’re talking about the difference between pharmacognosy and herbalism, between finding out what the active compounds are and administering them after careful review, and not really knowing what’s in it but just administering the whole plant and hoping for the best.

But when the options that have been examined scientifically hardly seem to have an effect, when your child is scratching himself and biting others, unable to be calm or to communicate in even the most basic of ways… well it doesn’t take a whole lot of empathy to see where these parents are coming from. They’re scared, they’re hurting, and they’re finding nothing from science but the cold hard reality that we don’t have an answer for them. At least not yet.

And that’s where the maybes creep in.

“I heard from Susan at work that her best friend’s sister’s kid is like little Jimmy, and that they’ve had a lot of success with cannabis oil.”

“I read online, because, you know, people talk about it. Do you think we should try it?”

“I’m at my wits’ end, I don’t know what to do — maybe it would help. What have we got to lose?”

Anecdotes start taking the place of research, bad research starts taking the place of peer-reviewed and double-blinded trials, and then the activism starts.

“I can’t believe they won’t let us try it. What’s the harm?”

“Pot isn’t dangerous, I smoked a lot in my teens and I’m fine.”

“It’s my child, what right do they have to tell me how I can and can’t try to help my child?”

When it comes to medical marijuana, I don’t know what to tell you. The science isn’t really there yet, but I’m a proponent of legalizing recreational marijuana, so if you’re an adult, and you want to smoke it because you say it makes you feel better, then really, who am I to stop you? I don’t care if you drink, why should I care if you smoke pot? But when it comes to administering drugs to children, especially ones who can’t communicate with you enough to even offer a hint at self-determination, I think we have to be really, really circumspect. Administering drugs to someone is, I would argue, in the same category as sex and boxing: as John Oliver recently put it, if only one of you has agreed to it, the other person is committing a crime.

We allow medical professionals to administer drugs to children because we have scientific evidence that it is in their best interests, and if it later turns out not to be, there is almost the guarantee of lawsuits. Medical marijuana and cannabis oil have not, in my opinion, cleared that hurdle, regardless of comparisons with the recent legalization of OxyContin for 11-16 year olds. In that case, one has been proven effective, if potentially hazardous when used incorrectly. The other has been proven neither. And so we wait.

But even as we wait, it’s important to remember that behind it all — behind the premature justifications, the self-righteous defenses, the anecdotes and the deliberate cherry-picking of evidence — is often nothing but an honest desire to help a loved one, and the desperate hope for a solution. And that’s what I mean by the “tragedy of hope:” that sometimes often the only thing that keeps us going — hope — is something you have to pass up, or at least save for later, when you view the world through the eyes of a skeptic.

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Richard Ford Burley is a writer, library worker, and doctoral candidate in English at Boston College, where he’s studying remix culture and the processes that generate texts. In his spare time he writes about science, skepticism, and feminism (and medical marijuana) here at This Week In Tomorrow.