
Autism's drug problem - chc2149
https://spectrumnews.org/features/deep-dive/autisms-drug-problem/
======
KingMob
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.)

~~~
6stringmerc
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.

~~~
SubiculumCode
Gastrointestinal issues are common is ASD, and can aggravate ASD
symptomatology. This is a hot topic of research.

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empath75
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.

~~~
LifeQuestioner
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.

------
reitanqild
_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.

~~~
jasonlotito
> 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.

~~~
bryondowd
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.

~~~
reitanqild
My thoughts as well although I wish my kids were a little bit more interested
in lining things up.

Mine has so far tended to pile things up and tell me they were "decorating".
:-)

Before I start thinking about the autism spectrum I need to see serious
communication problems, lack of empathy etc but then again I am no specialist.

~~~
shaftway
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.

Also, obligatory, #IAmNotADiagnostician

------
DanBC
England has a thing called "STOMP" to reduce polypharmacy and over medication
of people with learning disability.

[https://www.england.nhs.uk/wp-
content/uploads/2016/06/stoppi...](https://www.england.nhs.uk/wp-
content/uploads/2016/06/stopping-over-medication.pdf)

[https://www.england.nhs.uk/2015/07/urgent-
pledge/](https://www.england.nhs.uk/2015/07/urgent-pledge/)

[https://www.rcpsych.ac.uk/pdf/2016%20QNLD%20Annual%20Forum_S...](https://www.rcpsych.ac.uk/pdf/2016%20QNLD%20Annual%20Forum_STOMPLD_David%20Branford.pdf)

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.

------
CodeWriter23
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.

~~~
sevenfive_
> heavy metal poisoning

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?

~~~
CodeWriter23
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.

~~~
taneq
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).

~~~
CodeWriter23
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.

------
marze
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.

~~~
leggomylibro
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.

* [https://www.theatlantic.com/health/archive/2016/12/spectrum-...](https://www.theatlantic.com/health/archive/2016/12/spectrum-autism-placebo/509189)

------
Kenji
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.

~~~
wu-ikkyu
>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".

~~~
DanBC
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.

[https://www.theguardian.com/society/2017/apr/17/licking-a-
ba...](https://www.theguardian.com/society/2017/apr/17/licking-a-battery-what-
its-like-to-have-ect-electroconvulsive-therapy?CMP=share_btn_tw)

[https://www.theguardian.com/society/2017/apr/17/what-is-
ect-...](https://www.theguardian.com/society/2017/apr/17/what-is-ect-and-how-
does-it-work?CMP=share_btn_tw)

~~~
valuearb
Placebo effect.

~~~
thatcat
I doubt the physical changes caused by electrodes on your brain are imagined.

~~~
wu-ikkyu
Placebos can have biological effects

------
wu-ikkyu
>>“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.

[1][https://en.wikipedia.org/wiki/Autism#Diagnosis](https://en.wikipedia.org/wiki/Autism#Diagnosis)

See also:

[https://en.wikipedia.org/wiki/Autism_rights_movement](https://en.wikipedia.org/wiki/Autism_rights_movement)

~~~
Kenji
>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.

~~~
DanBC
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.

------
leggomylibro
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.

~~~
Diederich
> 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.

Generalizations are seldom helpful.

------
BatFastard
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!

------
ipunchghosts
Depression and IBS have the same problem.

~~~
AstralStorm
This is probably because both are symptoms or at best syndromes instead of
diseases.

