Autism's drug problem

If you tell a parent "this drug has been shown to have a N percent chance at improving your child's life, with the following potential risks", and don't give them an alternative, what else are they supposed to do?

Autism spectrum disorder (ASD) is a disorder typified presence of repetitive behaviors and restricted interests, and by disruption to social behaviors, and yet is very heterogeneous in how it presents.

A first point I'd like to make is that there is no pharmaceutical treatment currently approved for ASD. The drugs mentioned by the article are primarily used to treat disorders such as ADHD, anxiety, schizophrenia, or gastrointestinal irritation, which are frequently co-morbid with ASD. These co-morbid disorders typically have large impacts on the quality of life of people with ASD, and frequently aggravate ASD symptomatology. However, the costs and benefits of treating co-morbid disorders have to be weighed and tested at the individual level by a responsive and knowledgeable physician and psychiatrist. In terms of treating ASD itself, this has turned out to be really really hard.

There is a saying that goes, "If you've met one person with autism, you've met one person with autism." This saying captures the tremendous heterogeneity (aka spectrum) of the disorder. There is not one cause of autism, there are hundreds or thousands of genetic causes of autism. Hundreds of genes are implicated in autism, and no single genetic mutation accounts for more than half a percent of autism cases. While many of the known genes contribute to the same major pathways (e.g. the seretonin pathway, or involved in processes of snyaptic pruning), they effect different parts of those complex pathways. Some genetic mutations will severely impact the function of the pathway, while others just make it less efficient, or different. Modern drug treatments would like to target a specific chain link in the pathway with a pharmaceutical, but such a drug would likely just help a small sliver of those with autism. Hundreds of different targeted drugs would need to be developed and then target the specific cases of autism it might help. That is a very difficult task indeed.

The FDA drug approval process doesn't make this easy. Many drugs seeking approval fail because they only help a portion of their sample, (not enough to effect the overall mean above placebo), and until researchers are able to subdivide their ASD sample into the appropriate subgroups that respond and don't respond to a treatment a priori, the FDA won't approve those drugs for treatment.

Considering I agree with you that drugs / compounds are like hammering a sewing needle into a pillow, I wonder about diet (+ exercise?) that could be started with cheaper and lower risk.

So i'm not going to focus on these - but give just something else to the topic.

But for many it's not just about these. Drugs can help relieve sensory issues for example, where heightened senses can cause literally physical pain.

I'm not pro drugs btw - as someone with a mother/brother and countless other family members on the spectrum, has worked with kids on the spectrum, goes to talks and conferences on this - therapy and acceptance are the goals I strive for.

But unfortunately - THERAPIES AVAILABLE ARE REALLY SHIT. Really. Really shit and not autism specific. They can cause far more damage than help because they attempt to "normalise" a person(make them appear to be normal to be "cured") and in the long term this has serious repercussions.

But autism is a range of disorders. My daughter was tested on a 13 point scale and scored normally on 6 of them. Lining things up, repetitive behaviors are indicators. No two kids are the same.

"He was lining things up, switching lights on and off"

That's Autism right there.

There are other things you can test for, but that right there is a big tell for me. You aren't a specialist, and I can't imagine you are around autistic children much if this doesn't jump right out at you.

My mother never had me medicated, and when reading writeups like these I'm sometimes astounded she didn't. I was a complete menace in class at times dealing with other students, emotionally immature, obnoxious, and absolutely acing all my classes. In retrospect, I was bored and overenergized, and eventually math started kicking my ass and I leveled out. I like to think I'm a "bright" person to this day. I wonder if in another timeline, I was jerking and ticcing at 9 years old.

Actually I'm tempted to dismiss your account as complete quackery. Heavy metal poisoning is a common bugbear of quacks. What metal, and where did it come from?

IMO the problem is for every licensed MD that actually cares and does everything they can to fix it there seems to be ten quacks wanting to sell therapy, juice, diets, books; you name it - they sell it.

How can ordinary people know who is who?

* https://www.theatlantic.com/health/archive/2016/12/spectrum-...

Perhaps it is because Big Pharma wasn't the beast it was now. Treatment for mental illness decades ago was still quite horrid though -- cutting up "patients'" brains (lobotomy) and electrocution being some of the methods used for "treatment".

The drugs prescribed typically have been pretty well researched for the current lousy state of neuroscience. Including reasonably good long term trials. This is why we know side effects among other things.

Few other treatments have good evidence of efficacy, much less safety.

Lack of treatment also has a pretty well known side effect profile.

Everything is a risk, including doing nothing, medicating, using placebo, being subject to just a specific kind of therapy or combination or not etc.

Yes. I always hear "Chemical imbalance" thrown around but nobody can say which chemicals and how to detect it physiologically and how the medication counteracts it.

Yeah, sure. And next you tell me that only in the hands of some supreme being we can find help. This attitude is one of the reasons that people with mental conditions have to suffer. "It's not a real diagnose. They just do it for <'reason' of the day>". Thanks, but no thanks.

I would also note that the ARM isn't really staffed or managed by folks on the spectrum, but by outsiders who think they know what's right for their charges.

Yet in some cases medication can help.

Writing about something I have seen a bit of, ADHD, it is very clear to me that some people get remarkably better lives when the get medication.

Still I hear voices trying to vilify standard ADHD medication.

For the rest of this post here is a disclaimer: I have no formal education in this - I only happen to have reasons to be more than usually interested.

Now I cannot tell you why it works biologically but I have an interesting idea why stimulants are effective against both inattentive and hyperactive variants of ADHD. My idea is that both are caused by a too high (in boring 2017) treshold for "interesting". Hyperactive kids solve this by being unusually active thereby attracting attention or otherwise make things happen. Primarily inattentive kids solve it by zoning out or daydreaming.

If my idea is right the reason why stimulants work in both cases is because it either raises the general interestingness-level or lower the interestingness treshold.

This is the case for some people, but it's not for everybody who uses these meds, not even close. A lot of people have minimal 'come-down' effects, if any at all.

As others have posted here, our brains are poorly understood, enormously complex and act and react in wildly varying ways.

Generalizations are seldom helpful.