Former neuroscientist here. The fundamental problem of psychiatric medications is that the brain is wildly complex and the drugs are very broad-spectrum, activating multiple receptors, including ones you don't want. If you're lucky, a medication is both effective and not too onerous in its side effects.
It's like trying to fix a bad logic gate in your CPU with a soldering iron.
Unfortunately, brain science is still in its infancy, and it may be decades more before we have good drugs for mental illnesses (assuming they can be treated by drugs at all, which may be impossible for certain diseases/people.)
I am a cognitive neuroscientist currently in a post-doctoral training program in autism spectrum disorder.
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.
I feel compelled to add that aside from (or interact with) genetic risk factors for autism, exposure to excessive immune system antibodies during pregnancy appears to be involved in a significant number of autism cases. Moreover, in rodent models ASD like symptoms in pups have been created by exposing the dam to compounds that ramp up the immune response in the pregnant dam. I think there are real possibilities for preventive medicine here. Citation:
http://www.sciencedirect.com/science/article/pii/S0006322316...
This is weak evidence, further weakened by not being shown in humans.
I suppose some variants of autism could be caused by essentially autoimmune reactions. Good luck showing causation. You would need full immune library of thousands of mothers and their children. Further luck in fixing the problem, you cannot just immunosuppress the mother.
What is worse, is that symptoms of autism tend to show up quite late in many cases. Few years of age which suggests some sort of an inherited problem though potentially also autoimmune.
You think I covered all the evidence in my forum post?
Yes there are many question left, but right now there is evidence in non-human primates and rodents with causal experimental models, and in humans differences in brain morphology and intellectual disability are associated with increased levels of maternal cytokines and chemokines during gestation in humans. Of course, it would be unethical to do random assignment in humans to a condition causing a large cytokine response in mothers.
As far as treatment that is a difficult question. Active filtration might be a possibility. In any case, there is more of a possibility here for prevention than gene therapy, imo.
Unless you accept eugenics of course or perhaps in vitro fertilization. Somewhat dirty words nowadays.
Or if the problem turns out to be metabolic and thus possible to work around.
Compared to drugs, it is no treatment at the moment. Damage done by autoimmune disorders early in life can rarely be fixed. Diagnostics are years off at the very least.
There are certainly ethical issues associated with detection of autism risk during pregnancy allowing the choice for termination. I'm not sure about your point though.
Fixing things after it has happened is generally hard. I am no immunologist, but preventing excessive immune response is a possibility maybe for prevention of the injury (not completely removing the immune response, just retarding it).
First you have to know what to look for. As many cases of autism are unexplained, there appears to be no symptoms to look for. Big leukaemia would be detected while taking a routine sample during pregnancy as done already for testing of blood immunoreactivity alongside known viral and bacterial infections. (Full blood group test preferably.)
However to find less obvious immune reactions first we need to know what are we looking for and when. (during pregnancy or after)
To find out requires a comparable effort to human genome project. That is progressing as ImmGen project (currently mouse stages), Human Immunology Project (ImmuneSpace) and probably some others, but getting precise and numerous enough samples during pregnancy is problematic.
Parallel research is going into toxins in utero, later immune reactions after exposure to toxins and so on. Yet more is going into studying infant microbiome esp. gut microbiome which would be related to method of delivery, feeding, exposure to chemicals and so on.
Any of the above might prove crucial. Or all of them. It is a young and exciting field.
Honest question - do you think dietary fiddling around with different intakes / vitamins / fibers / sugars might also be worthwhile avenues to test on a case-by-case basis? I mean, I ask simply because I've seen a couple anecdotal tales of behavior changes (just a difference, not all Pro/Con) by eliminating cow milk. Switching that out changed, well, something and it seemed to have significant effects.
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.
The problem is that such interventions have low quality support if any at all.
In some cases removing underlying allergy or intolerance can help, even immensely. (Typically casein, gluten or both.) These diets are still quite hard to follow especially for a child. Moreover, common replacements are potentially problematic too (soy, nuts) Contact a nutrition specialist, don't attempt on your own.
Diet rarely if at all leads to a cure, but can be a useful tool. Rarely. Evidence is more against.
Perhaps. My area of expertise wasn't ASD, but I know that for other disorders, like epilepsy, extreme ketogenic diets can be helpful, especially for children. I wouldn't be surprised, especially given how many gastrointestinal issues are comorbid with ASD.
But what's the alternative? Do no medication whatsoever?
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?
I think that depends on the quality of your psychiatrist and physician. ADHD treatment with pharmaceuticals (e.g. adderal) is fairly effective and proven. Outcomes are frequently worse when left untreated, as they too frequently seek to self medicate (leading to drug abuse) or end it (suicide) when left untreated.
Even for mild cases we have a small bit of evidence for treatment, even in adult untreated cases. Not a lot. It is very tricky to differentiate from other psychiatric disorders, especially as they often are comorbid.
I read advice message boards from time to time, and there are so very, very many people asking questions that include 4 or 5 different psychiatric drugs that they're taking, for a litany of different trendy diagnoses and how they keep changing the doses and adding more and more to counteract side-effects, and it's like -- have you ever just considered, like, 'therapy'? People have been sold this bullshit that if you're not happy all the time, if you're not productive all the time, that you're somehow sick or suffering some sort of deficiency. Sometimes in life you have to be sad, or bored, or distracted. It's part of what makes life worth living.
Everytime I hear the ad for that medicine to counteract opioid-induced constipation, it makes me want to burn down the entire medical industry in this country. We're medicating ourselves to death.
I can't find a link to it now, but I read an article a while back where they did a random study of elderly people taking multiple prescribed medications, having some of them just stop taking all medicines-- and on average their medical condition improved. Even people that were taking heart medication, or things like that.
Remember though that every condition is different, and it sounds like you're looking at drugs for people on the spectrum to solve these things: " sad, or bored, or distracted"
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.
Connor was diagnosed with autism early — when he was just 18 months old. His condition was already obvious by then. “He was lining things up, switching lights on and off, on and off,” says his mother, Melissa. He was bright, but he didn’t speak much until age 3, and he was easily frustrated. Once he started school, he couldn’t sit still in class, called out answers without raising his hand and got visibly upset when he couldn’t master a math concept or a handwriting task quickly enough.
So far it sounds like textbook bright kid with ADHD to me.
Edit: reading further it seems thats what they originally though too. I have yet to see anything in the description of the first kid that suggests autism. Then again I am no specialist.
> I have yet to see anything in the description of the first kid that suggests autism.
"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.
Don't all kids like to line things up and play with light switches? Like, I'm pretty sure every child I've had contact with did stuff like this often enough.
Maybe there's a difference that you can see in person, like body language and such, but from the text description there, it sounds like perfectly normal play for a toddler.
Edit to add: I have limited experience with children on the spectrum, but I have 8 younger siblings spanning 25 years that I've watched grow up and helped raise. Unless they are all on the spectrum, I'm a bit at a loss.
It seems a little weak to me too. But I think it's one of those things about degree of behavior. My kids would enjoy flipping lights on and off at that age too, but only for a few minutes, or with breaks every now and then. I've had some limited exposure to kids with autism, and I've seen them happy to do things like this for hours at a time. Since it was specifically called out in the article I'm assuming it trended toward longer periods.
That being said it's a generalization and like (basically) everything having to do with autism, generalizations only apply to a very limited set of the population, and can be difficult to distinguish from stereotypes.
As someone who exhibited many of Connor's behaviors while growing up and whose mother was suggested more than once by teachers to have me medicated, this whole story gives me a weird and uncomfortable feeling - especially when I saw his parents ultimately took him off medication.
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.
That kind of repetitive and obsessive behavior is much more on the Autism spectrum than ADHD. And it's possible to have both ADHD and still be on the spectrum - want to talk about a painful combination of traits to have.
Agree it seems odd. When my daughter was diagnosed, she had been pretty normal till age 3. Was learning lots of words, etc, then suddenly started backtracking, till by age 3 and half she barely spoke and had heavy eye aversion. That's classic autism, normal till somewhere in the 2-3 year old range, then quickly regresses.
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.
Same with our son; over the course of several months, it was almost as if a blanket had been pulled down over him, starting about age 3. It was a pretty heart-rending experience for us.
With massive, painful and often thankless effort over the next 10 years, he has grown sufficiently to be in a normal junior high school, though he has a good bit of assistance.
He still has no friends. I mean that literally. He is quite pleasant but has quite a few 'strange' benaviours.
Autism and ADHD are often both diagnosed in the same person. Becoming very upset over failing to master something is a classic feature of autism as is struggling to understand when/how to speak and listen.
This kind of thing has a lot of support with NHS and LA care providers; from service users and their relatives, and from carers.
> “Is heavy drug use bad? That’s the question. We don’t know; it hasn’t been studied.”
We do know: Yes, it's bad. It's bad because of all the side effects. It's bad because there's risks with most meds, and you need to balance the risks against the rewards, and if there are no clear rewards it's unethical to subject someone to those risks just in case the med works. Especially so when these are children, some of whom will have lack of capacity because of learning disability, who are not making the decisions.
This article makes me really sad. I wonder if they took one sample of blood, stool, hair or spit to see if there were any biomedical anomalies to treat. My nephew's onset of "Autism" (I use quotes because the diagnostic methodology for Autism is casual observation, followed by "I said so" by a doctor) was at about 24 months. His parents refused to accept the prognosis of long term care. They instead found a licensed MD who would take specimens from my nephew and treat any observed deviations from established norms with standard interventions. So what they found over the course of about 4-5 years was my nephew suffered from a massive yeast infection, pinholes in his intestines, heavy metal poisoning, and numerous food allergies. This is an incomplete list, but for every other anomaly they discovered in his blood, stool, etc. they treated it as any trained MD would, if they were looking.
My nephew was diagnosed as "indistinguishable from his peers" at around age 8. Aside from having to eat a rotating diet to avoid the development of new food allergies, he's a normal kid now. He has friends, talks normally, is running track and field for his sport. The only thing that seems a little off with him, he loves good strong bear hugs, and I'm always happy to oblige.
You can dismiss this account as anecdotal and I'm sure many will. What I can tell you, through community connections, we know hundreds of other families who have helped their children recover to varying degrees from Autism. It's not some secret cult of medicine either, it's just a new field of study. The NIH sought my nephew for study, along with hundreds of other children who have recovered from Autism.
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?
Mercury and aluminum. Source unknown. His hair samples revealed no Mercury whatsoever which means his body was doing nothing to metabolize and excrete it. A normal person will show some level of Mercury in their hair as we all have some exposure from environmental sources. This is thought by his doctor to be due to his poor ability to produce glutathione, which comes as a result of a genetic mutation, which was confirmed via genome sequencing.
I don't care about the source of either, just that the tests ordered by the MD revealed their presence and employed chelation to remove them to normal levels.
Doesn't it raise an eyebrow that this one kid had such a litany of rare diagnoses? Maybe one or two of those things, but all of them?
I can't help wondering if the true diagnosis here should have been Munchausen syndrome by proxy (on the part of the parents) plus opportunism (on the part of the doctor).
As I mentioned above, our family has come to know hundreds of other families that have children experiencing some, all, or more of similar symptoms, and have achieved recovery using similar protocols.
Great! (Ok, some of these sounds weird to me but still I think it is great that he is now OK.)
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.
Considering autism's fundamental causes are unknown, it shouldn't be surprising drugs made to combat it don't work. Why should they? It sounds like blind experimentation combined with a bit of placebo effect.
The Atlantic actually ran an interesting article recently about how autism is also unusually susceptible to the placebo effect, as far as disorders/diseases go* - that certainly doesn't help matters.
This is a very important article, I wish I could upvote it more. The dangers of taking such psychoactive substances regularly, in combination, at such a young age with a developing brain, are not to be underestimated!
Parents need to be better informed. They make these decisions for their children when really, a few decades ago, an iron rule was that medicating mental health problems in children is to be avoided if at all possible.
Precautionary principle is good, except when it harms people. We need to strike the balance here.
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.
>a few decades ago, an iron rule was that medicating mental health problems in children is to be avoided if at all possible
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".
ECT is still used and it's an important, life-saving, treatment. It's rightly used as a measure of last resort, and there are extra controls to make it much harder to give someone ECT against their will (in England).
If it's being misused in the US that's a problem with the fucking awful state of healthcare over there, not with the treatment itself.
Not to mention that drug testing basically amounted to the following process:
1) An MD at a psychiatric asylum finds a drug somehow (plants, the mob, who knows).
2) Aforementioned MD doses half of the asylum with the drug without their consent.
3) MD publishes paper, gets drug deal and profits.
>>“This is an experiment that’s going on, but it’s a completely uncontrolled experiment.”
All psychiatric drugging is a hypothetical experiment because psychiatric diagnoses are based on subjective social observations rather than biological pathology[1]. However the psychiatric/pharmaceutical establishment still assumes biological causes even though they have no real proof. The mind is a metaphysical concept which no one understands, and yet many stand to profit on this fact by making popular but unsubstantiated assumptions.
Mixing multiple psychiatric drugs further compounds the issue, because when the companies selling these drugs are conducting their trials, they don't do so in conjunction with the myriad of other drugs that are usually prescribed to those with mental illnesses.
The mind is a metaphysical concept which no one understands, and yet many stand to profit on this fact by making popular but unsubstantiated assumptions.
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.
>However the psychiatric/pharmaceutical establishment still assumes biological causes even though they have no real proof.
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.
You don't hear that from psychiatric doctors about SSRIs because they all know it's bollocks.
In England I've only ever met 3 doctors who said mental illness was purely, or even mostly, biological. All the others, including the ones who focused on the diseases we think are biological (bipolar; psychosis) placed great importance on the psychological and social impacts.
And the alternative? Doing nothing may be even worse, depending on where they are on the spectrum.
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.
> However the psychiatric/pharmaceutical establishment still assumes biological causes even though they have no real proof. The mind is a metaphysical concept which no one understands, and yet those who stand to profit upon still want to make unsubstantiated assumptions.
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.
Just to entertain your strawman, here is an old zen tale:
>When Bodidharma, the legendary founder of Zen, came to China, a disciple came to him and said "I have no peace of mind. Please pacify my mind." And Bodhidharma said "Bring out your mind here before me and I'll pacify it." "Well," he said, "when I look for it, I can't find it." So Bodhidharma said "There, it's pacified."
When I'm not on medication I'm prone to manic/psychotic episodes and usually begin to hear voices. Maybe drugging isn't the best solution, but for me it's the only one that lets me live a normal life.
Stigmatization is certainly not the best way, quite the opposite. But my point is that "it's not a real sickness, just get over it" or "it's not a medical condition" are some of the prime examples that lead to stigmatization of mental illness.
Don't listen to anyone who tells you "just get over it" or acts like mental issues are not formidable, they are indeed talking down to you. That is not at all what I meant.
Being labeled by a psychiatrist as mentally ill is also stigmatizing though, and it often leads to civil rights being taken away from the individual. The fact that they can take away your rights without objective evidence is my concern.
This article kind of resonates with me, since I was briefly prescribed Adderall in high school. It was more an effort to strongarm me into paying attention than it was to treat a medical condition. And this sounds very familiar:
>But when the Adderall wore off each day, Connor had a tougher time than ever. He spent afternoons crying and refusing to do much of anything. The stimulant made it difficult for him to fall asleep at night.
The thing about Adderall is, it's a close cousin to crystal meth and has some serious side effects. When it wears off, there is a serious come-down, both emotionally and physically, so if you're taking it to focus in school, you're going to be a lethargic and miserable wreck by 4:00 or so.
To me, this is insane and enormously harmful. How could any parent see this, decide that the ends justify the means, and then double down with more drugs to deal with the side effects is completely beyond me.
> When it wears off, ... you're going to be a lethargic and miserable wreck by 4:00 or so.
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.
As a parent of a grown ADHD child we have struggled with the drugs losing effectiveness problem for years. One drug will work for a while, then issues like tics, physical, or verbal will start manifesting.
What I found works for my kid was changing medications frequently, it seems to work well at avoidoing the tics and tolerance. Melatonin for sleep worked great for years.
Now that our child is an adult, he finds the he can self regulate his meds well, he only takes them on days when he needs some extra horse power. And he uses Vyvanse for extended study periods and dextroamphetamine for short periods like tests.
Honesty I don't know how most parent cope. My wife is a psychologist who is trained in these issue and its still HARD. Weight gain is still an issue, so make sure you give them everything they can eat, I used to make malts every night. Which was great for him, not so good for me!
It's like trying to fix a bad logic gate in your CPU with a soldering iron.
Unfortunately, brain science is still in its infancy, and it may be decades more before we have good drugs for mental illnesses (assuming they can be treated by drugs at all, which may be impossible for certain diseases/people.)