Comment by slibhb | Hacker News Reader

Comment by slibhb | Hacker News Reader

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> Oliver McGowan was 18 years old when he was hospitalized in England with recurrent seizures and pneumonia. He was autistic, and he and his parents had one specific request for the medical team: no antipsychotic medications. When he had taken them in the past, they made his seizures worse and had devastating effects on his mood. Despite the family’s vehement protests, doctors gave him an antipsychotic. A few days later, Oliver suffered a lethal neurological side effect. A week later, he was taken off life support. An inquest into his death found that the drug had led to the rapid deterioration.

I don't see what this has to do with autism.

Also, I understand that receiving medical care can be alienating but I'm not sure there's a way to fix that. It's real hard (impossible?) to train people to be kind, patient, and empathetic. Being honest and not making medical errors are probably more important training targets for doctors, nurses, and other medical professionals (and more achievable).

People with more severe autism can be really tricky to deal with. According to [0] the medical staff gave him medication he was known to be allergic to in order to sedate him. [1] says he arrived at the hospital scared and agitated and was physically restrained. The staff decided to deal with this by pumping him full of sedatives rather than actually addressing the source of his anxiety.

If the staff had been given proper training into dealing with neuro-atypical patients, there would have been no need for sedation.

[0]: https://www.bbc.com/news/uk-england-bristol-54602417

[1]: https://www.bristolpost.co.uk/news/bristol-news/full-story-d...

> rather than actually addressing the source of his anxiety.

> If the staff had been given proper training into dealing with neuro-atypical patients, there would have been no need for sedation.

You're making some serious assumptions here. 1. The source of anxiety could be dealt with at the time. 2. The training would be applicable at the time. 3. A different approach would require no sedation. 4. There was time for a calming approach given what had to be done at the time.

Sure, we should improve things, but also when you end up in the ICU, the priorities are a bit different than during a routine doctor visit - we don't know whether that situation could be dealt with without any kind of restraints/sedatives.

5) they gave a patient a medication they were known to be allergic to and then they died.

The parent was talking specifically about addressing the "source of anxiety". That's separate to the medication/allergy issue.

Having a negative reaction to the meds is not the same as an allergy.

Allergies are the only place the US medical system has for repeatable negative reactions so all of them go in.

Police cant/won't be trained on how to deal the neordiversity and mental crisis, why do we think that the assembly line health care system can be?

The hospital is one of the places where you can encounter above average rates of neurodivergent people. They need to be trained. If it works or not is a different thing for which I don't have any idea

> Police cant/won't be trained on how to deal the neordiversity and mental crisis, why do we think that the assembly line health care system can be?

Why are you using police (who have no legal or ethical duty to care for or protect anyone) as a baseline for what we would expect of healthcare providers (who have both a legal and ethical duty to their patients)?

The LAPD adopted the motto “To protect and to serve”, and it was subsequently widely copied across the U.S. Besides a general mandate to protect the public at large, police are responsible for the wellbeing of anyone in their custody.

Police don't have a mandate to protect the public. This has gone before the supreme court, multiple times. Even if they are present while you're being attacked, they can just stand and watch if they think it's not safe for them to engage. (And practically speaking, they can't do it anyways, they're not omnipresent - if you live in a big city your response time for being murdered is probably over 5 minutes (where I am, it's 7+ minutes). Lot can go wrong in 5 minutes)

They do have a responsibility to protect people in their custody.

They have a mandate to protect the public that doesn’t extend to a given individual person.

They don't have any such mandate.

> The LAPD adopted the motto “To protect and to serve”, and it was subsequently widely copied across the U.S. Besides a general mandate to protect the public at large, police are responsible for the wellbeing of anyone in their custody.

That is a PR slogan. That's like trying to say Google can't be evil because their motto is "Don't be evil."

The Supreme Court has explicitly ruled that police do not have a duty to protect citizens, and that ruling has been reinforced consistently at lower courts throughout the country.

What they meant was a given citizen.

> What they meant was a given citizen.

No, that's not what they meant. The ruling itself is extremely explicit. And furthermore, that's how other courts have applied the ruling in the decades since.

It's simply factually incorrect to claim that the police have a legal duty to protect citizens simply because of a PR campaign that they launched, when there are volumes of case law that establish otherwise.

> The LAPD adopted the motto “To protect and to serve”, and it was subsequently widely copied across the U.S.

AFAIK. it hasn't been copied in that form very widely, instead, it was popularized by TV (Dragnet specifically, IIRC), and so is culturally attached to police in general, despite the vast majority of departments with any motto having different mottos.

A motto is not a mandate.

By this logic the medical system doesn’t fail diabetics in a coma if they fail to take appropriate actions?

They can

>If the staff had been given proper training into dealing with neuro-atypical patients, there would have been no need for sedation.

If people are given anti violence courses would it certainly stop violence? Doesn't matter if they have autism or not, doctors in their panic with or without training may make medical misfortune occur.

It’s not about stopping violence it’s about managing and understanding situations that appear violent but are borne of anxiety or some other emotion. Violent rage or criminal violence is a lot different than anxiety, and can be dealt with through purely social mechanisms. Certainly resorting to heavy medication to cope with autism isn’t the right way to manage behavior induced through anxiety and fear, especially if they’re known and explicitly disclosed to be toxic to the individual.

When you get right down to it, aren't most examples of violence from neurotypical people also "situations that appear violent but are [born] of anxiety or some other emotion"? Like, if a man turns up in emergency high as a kite and is worried the hospital will call the police so he shoves a doctor over and runs away, or a new mother grabs the scrubs of a nurse because nobody will tell her where her child is, it's not a great outcome to jam those patients full of antipsychotics either.

Is that certain? It's not a good solution, but it's also not a good solution to say that nurses just have to deal with agitated and combative patients for however long it takes to find or rule out non-pharmaceutical solutions. I'd question whether long-term use of forcible physical restraint is even better for the patient.

There are situations where it’s unclear what is happening and where it is clear.

In situations like this where the family tells the hospital specifically what is going to happen and what to not do, it’s not alright to do the thing that’s known wrong.

For someone severely autistic all you have to do is reduce stimulation. Sedating them isn’t the right way to handle them. Putting them in a quiet room is the right way to handle them.

In situations where there’s no knowledge of what’s going on restraining them and getting a psychiatric nurse or doctor to evaluate them is probably a better outcome than sedating them. Sedation makes diagnosis impossible. The comeback is that there aren’t enough psych staff on hand to respond in emergencies. That’s just a pathetic state of things given the human mind is the most complex part of our being and illness of the mind is prevalent and largely untreated.

Being autistic is why he got given the anti-psychotic in the first place, despite it not being in his interest as a patient, when people hear a patient is autistic or see autistic behaviour they dehumanize and give them drugs for the sake of personal convenience.

Who is going to question it - they’re autistic and the person giving them the drug was a doctor - what right do people have to question such things? As such, there’s little disincentive for doctors to abuse their patients with anti-psychotics to shut them up.

It also makes it more likely that their chart will be ignored, as obviously the request against anti-psychotics might have been the personal request of somebody with a compromised mind. The person reading the chart is a doctor, they know they’re very intelligent, so they know better.

Careful now, you wouldn't want to "dehumanize" doctors, would you?

Great question. Here's my response. My thinking is, essentially, doctors aren't really at risk of being dehumanised by having a few people like me. I also don't see myself as dehumanising them, more portraying them as flawed humans pursuing their own self-interest.

Doctors are aware of several positive correlations in Autism, autistics kick ass at the Raven's Progressive Matrices test [1] for instance. Yet the DSM-V doesn't mention this, it just defines autism as a set of deficiencies and impairments [2]. Why is this? Well it's all because the medical system has little incentive to portray their patients as able and capable - this only implies they do not need their help, and thus there is no need for them to provide and be paid for services. So with no outside criticism, this sort of attitude will just be how things are.

There's other controversies I could name, like the genocide [3], the ongoing torture [4], the open eugenics [5], the suspected eugenics [6], the historical connection between the gold standard therapy for Autism and gay/trans conversion therapy [7][8], the stigma against mental illness amongst mental health professionals [9], or worse care through diagnostic overshadowing [10]

I think the point of my posting, is I believe the attitudes towards autistic people in medicine is not good, I believe this isn't some unfortunately inevitable tragedy, or that doctors are inhuman monsters. What I more want to point out is how medical students are introduced to autism as just another pathology in their reference materials like the DSM-V from day 1, and how their views are coloured by this in a way that makes them more callous, and also how this entire attitude helps colour the views of broader society. I find the entire situation very frustrating.

[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4287210/ [2] https://www.cdc.gov/ncbddd/autism/hcp-dsm.html [3] https://en.wikipedia.org/wiki/Aktion_T4 [4] https://en.wikipedia.org/wiki/Judge_Rotenberg_Center [5] https://www.dailymail.co.uk/health/article-3377811/Britain-s... [6] https://www.psychologytoday.com/ca/blog/neurodiverse-age/202... [7] https://catalystjournal.org/index.php/catalyst/article/view/... [8] https://pubmed.ncbi.nlm.nih.gov/34407211/ [9] https://journals.plos.org/plosone/article?id=10.1371/journal... [10] https://onlinelibrary.wiley.com/doi/full/10.1111/inm.13034

My understanding is doctors will reliably treat requests from autistic patients with more suspicion than they do neurotypical patients. Either because of how people on the spectrum often communicate or how they react to stress and discomfort. You're exactly correct that this kind of behavior is always unacceptable, but historically people have excused this unprofessional behavior because it's common to find autistic communication styles confusing. The reason to talk about it like this is because we should be past the era where people feel comfortable with medical professionals being ignorant about basic patterns in common behavioral communities.

I'm on the autistic spectrum, but not well-versed in matters related to autism.

Can you please give some examples of autistic communication styles?

This is purely for my own edification. I'm not trying to construct some kind of elaborate undercover rebuttal.

I am not well versed on them either! I was thinking of things like people on the spectrum finding eye contact uncomfortable (as opposed to connecting), or perhaps a focus on sub-points of the conversation which others find difficult to follow? People who are on the spectrum can describe it better than I:

>The reason for this is that natural, honest and authentic autistic communication - like giving ample detail, avoiding eye contact, pausing before answering Qs and giving direct, literal answers - mirrors the style of communication neurotypical people tend to adopt when they lie.[1]

[1] https://twitter.com/AutisticCallum_/status/15581860392939028...

It sounds like hyperbole. I told a dentist I was allergic to ibuprofen and she prescribed it to me. Some doctors will never respect you and think they know better. Just avoid those that don't do nice things like listen to you but also not enablers thsr want a lot of money.

Good luck!

> I don't see what this has to do with autism.

Paradoxical responses to drugs are more likely in those with autism [1], which has been noted with benzos [2, 3].

1. https://www.spectrumnews.org/opinion/clinicians-must-put-mor...

2. https://pubmed.ncbi.nlm.nih.gov/2826308/

3. https://www.cambridge.org/core/services/aop-cambridge-core/c...

Just train more doctors. For some reason the Western hemisphere is extremely resistant to large scale training of healthcare workers. Train doctors like engineers and you won't have a shortage of good ones.

A big part of the basic problem in the US is the artificially limited residency system [1], which has gotten so bad that states are now explicitly letting foreign doctors skip residency requirements to work in the US [2].

[1]: https://www.aamc.org/news/medical-school-enrollments-grow-re...

[2]: https://www.medscape.com/viewarticle/993693?

But won’t you have more bad ones? We need better mechanisms to properly deal with incompetent/careless med workers.

You -might- have a slightly higher proportion of “bad ones,” but you would also have a system with less of a capacity shortage. In turn, the harms from lesser practitioners would likely be less, and you could more readily suspend for misconduct.

Some of those we consider bad ones might even be considerably better under a little less time pressure.

Interesting. The harm that a doctor can do is very serious though. Who are the unlucky shlubs who get the bad end of the distribution?

Not having sufficient care can do some pretty serious harm. It's not like all the new doctors we'll be adding will be worse than the existing set.

Taking your argument to the extreme: if we have no doctors, they can't do any harm. Is that best? Or, we could get rid of 20% of doctors and avoid getting rid of the best, which would improve the quality of the distribution. Would that be better?

> But won’t you have more bad ones?

You absolutely will. People should be extremely careful what they wish for. Simplistic solutions like "just train more doctors" can and will have disastrous unforeseen consequences.

Are these gonna be like Soviet doctors who didn’t know how to read EKGs?

It's very likely.

The "soviet doctor" thing you mentioned is just so amusing to me. I'm brazilian, our current president is a literal communist who fancies himself the creator of a south american soviet union, he has a populist "doctors for the poor" policy which essentially consists of flooding the market with doctors via huge numbers of shitty medical schools that don't even have a hospital for the students to practice in, he's directly quoted as saying things like "we must create a new generation of leftist doctors who accept working for less"...

And now there are doctors who do not know how to identify a possible myocardial infarction on an EKG. There are doctors out there who cannot spot an ST segment elevation or depression on an EKG. Hell I've seen one doctor send a patient presenting with classic myocardial infarction symptoms home with pain meds without even running a simple, cheap, fast, non-invasive and universally available EKG. I wish I was making this up, my own goddamn lawyer made an example of this last idiot because obviously the patient died and it's just impossible to defend that conduct. I'm actually afraid of being sick and not having trusted doctors to care for me.

But of course my comment above describing this terrible situation was flagged. Welp. People here would be horrified if I described the literal quackery and charlatanism I see in this country on a daily basis. Blow smoke up people's ass tier stuff and I mean that literally. Worst part is those doctors make metric fucktons of money while the good ones are hated because they don't swindle patients with easy solutions that don't actually work.

The parents are obviously and appropriately advocates for neurodivergence.

But honestly, to your point, this is more an example of shitty medicine, especially in the ED. My family had similar arguments when hospitalists refused to give me pain medication 3 hours out of a spinal fusion. Or when my wife was bleeding out from a ruptured ectopic pregnancy and the ER guy kept telling her she had food poisoning.

One of the problems is that front line medicine, especially in the US spends alot of time dealing with the poorest, sickest, and dumbest among us.

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