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“We don’t do autism”

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Re: “We don’t do autism”

#21

Post by rustynails »

DanBC wrote: post #9
PhasmaFelis wrote: post #6

> Which is to say that it’s clear whatever condition the strident, proud autistics have, it’s not quite the same condition as one that leaves you epileptic, mute, and generally unable to care for yourself. I can understand the anger here, but please understand that the problem goes both ways. Some high-functioning autistics don't seem to get that the condition can be absolutely crippling, but their belligerence stems…

Yes. Also many people with ASD recognise that they're on one end of a spectrum, and while they focus on that end they recognise the abuse and maltreatment (from crooks and scammers; from abusive carers; from abusive staff; etc) and they campaign to fix those problems. (At least this is true in the UK.)

Another aspect is parents. My wife and I had strong arguments about our child. She refused to accept our child had a problem because she has similar traits. If a parent can't look past their own faults, therapy will not make a difference. It wasn't until a few brave souls approached me that I had a basis to engage my wife that it wasn't me making it up. She misdiagnosed many things on the journey.

I feel the need to clarify something. In most ways, my wife is amazing. Very strong willed, clever, independent. She is the only partner I could work with as an equal. As we've worked things through for our child, she's benefitted in many ways too. Not surprisingly, my child's behaviour is like my father in law.

Re: “We don’t do autism”

#22

Post by digi_owl »

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.

Re: “We don’t do autism”

#23

Post by davak »

codingdave wrote: post #15

I've been working with doctors for a while now trying to diagnose some issues, and while I share the author's frustrations (believe me, it can thrash your life to shreds if you let it), he seems to be falling into a danger zone that I have been warned about. Which is that "normal" ranges of almost every metric on the human body are not well defined lines. Rather, they describe a bell curve or measurements, such that…

"Normal" lab values are typically the 95% range of normal people tested. This is why over-testing is dangerous; about one out of twenty tests will be abnormal in normal folks.

Re: “We don’t do autism”

#24

Post by [deleted] »

digi_owl wrote: post #22

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.

[deleted]

Re: “We don’t do autism”

#25

Post by darkmighty »

neurotech1 wrote: post #14
shakil wrote: post #3

So what is the author saying? That some forms of autism might be due to a cyst in the brain that affects the cerebellum and the vermis, and if you remove the cyst in early childhood, the patient would end up leading a mostly normal life, cured of their autism?

Its possible that the cyst might worsen symptoms associated with an Autistic Spectrum Disorder, although treatment wouldn't completely cure the patient. There is an above average rate of Hydrocephalus [0], particularly Normal Pressure Hydrocephalus [1] (NPH) and other forms of Hydrocephalus, as well as Spina Bifida [2], associated with Autistic Spectrum Disorders. The worst part is that moderately severe symptoms of…

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.

Re: “We don’t do autism”

#26

Post by thinkcomp »

darkmighty wrote: post #25
neurotech1 wrote: post #14

Earlier quoted context omitted.

Its possible that the cyst might worsen symptoms associated with an Autistic Spectrum Disorder, although treatment wouldn't completely cure the patient. There is an above average rate of Hydrocephalus [0], particularly Normal Pressure Hydrocephalus [1] (NPH) and other forms of Hydrocephalus, as well as Spina Bifida [2], associated with Autistic Spectrum Disorders. The worst part is that moderately severe symptoms of…

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.

Re: “We don’t do autism”

#27

Post by Mz »

PhasmaFelis wrote: post #6

> Which is to say that it’s clear whatever condition the strident, proud autistics have, it’s not quite the same condition as one that leaves you epileptic, mute, and generally unable to care for yourself. I can understand the anger here, but please understand that the problem goes both ways. Some high-functioning autistics don't seem to get that the condition can be absolutely crippling, but their belligerence stems…

Part of the problem is that autism significantly impacts social function. So does prejudice. So the minute you label someone as autistic, it becomes incredibly difficult to say how much of their daily challenge is due to inability to perform socially and how much is due to other people perceiving them differently and treating them differently.

The other thing is that many traits seen in autistic individuals and used to label them as defective are also seen in other situations and not viewed as pathology. One example I know of firsthand: The tendency to be very literal is also seen in highly intelligent and highly educated individuals and is a hallmark of good scientific work. But in a person diagnosed with autism, it is pathologized rather than praised as a virtue.

It's a complicated situation.

Edit: I apologize. I am leaving the comment here, but I feel like I replied to the wrong person somehow. Perhaps it should have just been a general comment and not a reply to. I have two sons who are not formally diagnosed but likely would qualify for a diagnosis somewhere on the spectrum. I have nothing but sympathy for your frustration.

Re: “We don’t do autism”

#28

Post by rcthompson »

shakil wrote: post #3

So what is the author saying? That some forms of autism might be due to a cyst in the brain that affects the cerebellum and the vermis, and if you remove the cyst in early childhood, the patient would end up leading a mostly normal life, cured of their autism?

Yes, that's exactly the hypothesis the author is advocating.

Re: “We don’t do autism”

#29

Post by et2o »

riggins wrote: post #8
pragone wrote: post #2

I was initially planning on writing this comment to retort a number of statements within this article, but there are far too many; additionally, they all seem to indicate a larger concept at work. Let me first say that I commend this individual for going out and researching his brother's illness on his own. It is truly a dedicated family member to go to such lengths as to attempt to understand things to the level of…

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.

Re: “We don’t do autism”

#30

Post by rcthompson »

darkmighty wrote: post #25
neurotech1 wrote: post #14

Earlier quoted context omitted.

Its possible that the cyst might worsen symptoms associated with an Autistic Spectrum Disorder, although treatment wouldn't completely cure the patient. There is an above average rate of Hydrocephalus [0], particularly Normal Pressure Hydrocephalus [1] (NPH) and other forms of Hydrocephalus, as well as Spina Bifida [2], associated with Autistic Spectrum Disorders. The worst part is that moderately severe symptoms of…

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.

MRIs were certainly performed on autistic patients in order to determine that certain physical variations in brain structure are associated with autism. But if your goal is to diagnose autism, there are much cheaper (and more accurate) ways to do so, and if your goal is to treat it, the MRI results don't really inform your treatment options, so the consensus is probably that an MRI would be nothing more than an extremely expensive way to get a vague confirmation of the diagnosis.

(Of course, if the author's hypothesis is correct, that may be about to change.)

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