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“We don’t do autism”

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31–40 of 93 posts

Re: “We don’t do autism”

#31

The basic problem seems to be the broadness of the label "autism". This broadness makes it nearly impossible to talk about it, as someone who has the mildest of social interaction problems is lumped in with someone that goes into a rage over bright lights.

'Autism' is useful if you need a diagnostic code in order to get a kid certain types of support. It's absolutely useless as a medical diagnosis.

Re: “We don’t do autism”

#32
There’s a good reason why doctors have difficulties with rare diseases—which is, of course, the rarity itself.

> In medical school, aspiring doctors spend a few minutes at most on these relatively unusual conditions.

It would be unethical to spend a lot of time studying these conditions while many more people suffer from the more frequent ones.

Sooner than later, we’ll be able to solve, say, depression reliably via pills or vaccines or whatever, and then more rare diseases will be studied much better (likewise, there was little point in spending much time on depression when smallpox was around).

Re: “We don’t do autism”

#33
There’s a good reason why doctors have difficulties with rare diseases—which is, of course, the rarity itself. > In medical school, aspiring doctors spend a few minutes at most on these relatively unusual conditions. It would be unethical to spend a lot of time studying these conditions while many more people suffer from the more frequent ones. Sooner than later, we’ll be able to solve, say, depression reliably via pills or vaccines or whatever, and then more rare diseases will be studied much better (likewise, there was little point in spending much time on depression when smallpox was around).

Re: “We don’t do autism”

#34
post #11

He spends a lot of time trashing the physicians because they won't do additional workup and chase MRI abnormalities. When he finally gets somebody to do something, he just put his brother in some temporary pain without any long lasting improvement. Yes, the doctors debated on if he has this or that specific condition, because ultimately it didn't matter because he has a condition that isn't fixable. Doctors are best…

MD, PhD such as developmental or occupational psychiatrists or psychologists whom specialize in the particular spectrum of autism behaviors/impairments help most with coping skills, because there is no "magic cure" for autism at this point. I think some supporting caregivers get frustrated and take that out on others or blame the doctors when they're barking up the wrong trees, when they're just looking in the wrong places because they don't seek out support groups or more information.

For example, what's sinister about one part of the spectrum , high-functioning autism, is that it isn't even looked at, much less labeled, and it's impossible to get SSIDI even if someone is unable to hold either a job or relationships.

Finally, the author shouldn't feel terrible... I had Marfan Syndrome my entire life and am looking (not) forward to a valve replacement. I diagnosed it correctly myself after every doctor over (at the time) 35 years missed it entirely. Doctors are too busy, don't have time to get to know their patients or catch life-threatening, so you have to know your own body and become an MD yourself because few of them are actually any good.

Re: “We don’t do autism”

#35

Earlier quoted context omitted.

What disturbs me the most is: are we really not taking MRIs of most autistic patients? How come we don't have enough data to draw clear correlations? I'm not a physician either, but it seems a perfectly valid, testable hypothesis that a cerebellar cyst is the cause of the author's brother condition, and this kind of malformation bears an impact on those conditions at large.

Definitely not. Ask most doctors if an MRI is warranted for an autism diagnosis and they'll laugh at you.

[deleted]

Re: “We don’t do autism”

#36
post #29
post #8

Earlier quoted context omitted.

I assumed that the author is himself an MD in another speciality. 1. The quote below. The most likely way the author would know this is that the author went to med school. Its possible the author interviewed MDs about their med school experience, but seems less likely. In medical school, aspiring doctors spend a few minutes at most on these relatively unusual conditions, which are thought of, and taught as, rare. By…

The author is not an MD and has not attended medical school.

how were you able to determine that?

Re: “We don’t do autism”

#37

The basic problem seems to be the broadness of the label "autism". This broadness makes it nearly impossible to talk about it, as someone who has the mildest of social interaction problems is lumped in with someone that goes into a rage over bright lights.

> the mildest of social interaction problems

That's not ASD. People misusing a diagnosis is a problem. But if they're misusing the current diagnosis why won't they misuse a new diagnosis?

Re: “We don’t do autism”

#38
post #11

He spends a lot of time trashing the physicians because they won't do additional workup and chase MRI abnormalities. When he finally gets somebody to do something, he just put his brother in some temporary pain without any long lasting improvement. Yes, the doctors debated on if he has this or that specific condition, because ultimately it didn't matter because he has a condition that isn't fixable. Doctors are best…

Not to mention wasting time that could have actually saved a life. MRI machines are highly expensive and there are always long waiting lists before you can get access to one because those things just don't grow on trees and are a limited resource (number of machines versus number of patients.)

Most doctors know better than to waste a MRI on someone that will not, in any way, benefit from it. Not when there are people with heart abnormalities or potential tumors to diagnose on the waiting list.

Unsurprisingly, the only people who agreed at first to do a MRI for his brother used an open MRI, which are far less precise than the closed ones, and usually reserved for the claustrophobic and morbidly obese. So he didn't take precious MRI time from people who actually needed it.

Re: “We don’t do autism”

#39
post #38
post #11

He spends a lot of time trashing the physicians because they won't do additional workup and chase MRI abnormalities. When he finally gets somebody to do something, he just put his brother in some temporary pain without any long lasting improvement. Yes, the doctors debated on if he has this or that specific condition, because ultimately it didn't matter because he has a condition that isn't fixable. Doctors are best…

Not to mention wasting time that could have actually saved a life. MRI machines are highly expensive and there are always long waiting lists before you can get access to one because those things just don't grow on trees and are a limited resource (number of machines versus number of patients.) Most doctors know better than to waste a MRI on someone that will not, in any way, benefit from it. Not when there are people…

Obviously moral judgments in medicine can be incredibly difficult, but who's to say that this person's life might not have been drastically altered for the better ("saved") if a MRI scan 20-25 years earlier had revealed the cyst, so that could have been removed? Then the brain might have developed normally.

The point is that the condition is time-dependent because the brain develops most in a child's early years, and scanning early could make a difference.

Re: “We don’t do autism”

#40
post #11

He spends a lot of time trashing the physicians because they won't do additional workup and chase MRI abnormalities. When he finally gets somebody to do something, he just put his brother in some temporary pain without any long lasting improvement. Yes, the doctors debated on if he has this or that specific condition, because ultimately it didn't matter because he has a condition that isn't fixable. Doctors are best…

MD, PhD such as developmental or occupational psychiatrists or psychologists whom specialize in the particular spectrum of autism behaviors/impairments help most with coping skills, because there is no "magic cure" for autism at this point. I think some supporting caregivers get frustrated and take that out on others or blame the doctors when they're barking up the wrong trees, when they're just looking in the wrong…

I think that is somewhat common situation with Marfan Syndrome. I'm fairly familiar with it because a postdoc in my lab gave a talk about it (it was her previous research) and I don't forget things easily -- but anyways, my girlfriend - who is a transplant hepatologist - told me how in her first year of internship, one of her co-interns clearly had Marfan - she didn't say anything until a patient case came up and and she quizzed the co-intern on what underlying condition the patient had... The intern couldn't figure it out until she suggested Marfan's (and he did know what it was)... Then she pulled him aside, and suggested to him directly that he might also have the condition. He was stunned for a moment, and then proceeded to get a genetic test which confirmed her diagnosis.
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