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“We don’t do autism”

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61–70 of 93 posts

Re: “We don’t do autism”

#61
Side note: There are private companies who will MRI any part of your body no questions asked. 15 years ago it was 1000$ for a full body MRI. Sections were much cheaper.

Point being, how hard would it be to take pre-existing MRI plates to a specialist and buy an hour of their time to just take a look?

Re: “We don’t do autism”

#62

My close friend in Canada has two children diagnosed with autism. The Canadian healthcare system has completely failed my friend's entire family. It is by far the biggest condemnation of Canada's health care system that I've seen. His daughter was diagnosed with autism at age 3. In Canada, there is a 2.5 year long waiting list to get any sort of therapy to help her. If you want to do it privately, it costs $80k/yr, s…

Ear infections are common with autism and consistent with moderate hydrocephalus, which might be a sign of cerebellar dysmorphism. Increased intracranial pressure can distort the shape of the skull making it slightly bigger, leaving extra space for infectious bacteria, especially with exposure to water. DWV also results in the ears being placed slightly lower than normal (or maybe the rest of the head just looks bigg…

Interestingly, this is exactly what happened to me – luckily I did not need tubes, but it could be surgically fixed.

I was also diagnosed with autism, but am on the low end of the spectrum – I barely qualify as asperger, and while it was bad in early middle school (just using violence, hitting heat against walls, etc), by the time I finished high school, it was not diagnosable anymore.

Re: “We don’t do autism”

#63

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.

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 extre…

It seems that Dandy-Walker Syndrome is a known cause of some of the symptoms that show up in people on the Spectrum. i.e - there is an overlap. http://ghr.nlm.nih.gov/condition/dandy-walker-syndrome

And Dandy-Walker syndrome appears to be directly linked to Cyst growth and hence at least diagnosiable via MRI.

Re: “We don’t do autism”

#64

Earlier quoted context omitted.

http://link.springer.com/article/10.1007/BF01418470#page-1

No wait, now I can :) As you can see, the linked article concerns treating intracranial cerebrospinal fluid cysts when treating hydrocephalus (and is effective as far as I know). Now: what does this treatment have to do with the cyst presented in the original blog? The purpose of the shunt in your link is to allow venting of cerebrospinal fluid. Is the cb-fluid flow somehow blocked in the case of the autistic brother…

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Re: “We don’t do autism”

#65

Earlier quoted context omitted.

No wait, now I can :) As you can see, the linked article concerns treating intracranial cerebrospinal fluid cysts when treating hydrocephalus (and is effective as far as I know). Now: what does this treatment have to do with the cyst presented in the original blog? The purpose of the shunt in your link is to allow venting of cerebrospinal fluid. Is the cb-fluid flow somehow blocked in the case of the autistic brother…

The cyst mentioned in the original article (and shown in the MRI image at the top) is a posterior fossa CSF cyst that most likely formed as the result of hydrocephalus. Basically, it's the same thing. This is an example of how confusing all of the terminology underlying autism is. In some patients, CSF cysts, hydrocephalus, Dandy-Walker Variant and "autism" may all be very much related or referring to the same thing.…

What do you find confusing about these different medical conditions? Hydrocephalus is a condition that can arise from various defects in the brain, Dandy-walker is defined otherwise. Do you think that a CSF cyst is required for an individual to develop autism and if so, wouldn't the link be kind of obvious to medicine at this point?

Re: “We don’t do autism”

#66
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…

That's.... interesting....

I've just had a look at the Marfan page (http://www.marfan.org/about/signs) and there's a lot that I seem to match there: long skinny body type, all my fingers are double jointed (not as flexible though as in some of those photos), flat feet, crowded teeth, I had congenital cataracts and also early-onset (around 2 years of age) glaucoma and had a spontaneous pneumothorax when I was around 18 (which wasn't severe but did recur once).

Wondering if I should have the test. Well aware of the tendency to see oneself in medical articles though!

Re: “We don’t do autism”

#67
post #23

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.

Your conclusion is true only if the results of these tests are completely unrelated to each other.

Over-testing is still a problem, but it's important to use correct statistical modeling.

Re: “We don’t do autism”

#68

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…

I've started and stopped my own response to this article about a half dozen times, but this post gets to the crux of it very well. I've worked in a research lab studying the neuroscience of autism (via MRI and FMRI, even), and this article is a classic example of a little knowledge being a dangerous thing. The author has taken a bundle of half-understandings about an extraordinarily complex field, and tried to tie them together in to a Unified Theory of Autism, with predictably bad results.

I don't really blame the author - it's the most natural thing to do in the world when faced with something like a loved one being diagnosed with autism, and this is far from the first time I've seen it happen - but it's always a little frustrating to see.

Re: “We don’t do autism”

#69
post #63

Earlier quoted context omitted.

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 extre…

It seems that Dandy-Walker Syndrome is a known cause of some of the symptoms that show up in people on the Spectrum. i.e - there is an overlap. http://ghr.nlm.nih.gov/condition/dandy-walker-syndrome And Dandy-Walker syndrome appears to be directly linked to Cyst growth and hence at least diagnosiable via MRI.

Dandy-Walker Syndrome is rare, though. MRI scanning all people diagnosed with autism just to check for it would be not be justified.

Re: “We don’t do autism”

#70
This is practically a textbook example of why we are not supposed to treat friends and family: the inability to take an objective view.

Two phrases in this article stands out for me: "I was certain that I had the right condition when I finally came across Dandy-Walker Variant", followed not long after by "The fit, given my brother’s behavior, was remarkably good."

This was accompanied by some trash-the-experts discussion of a perfectly reasonable deliberative process in an ambiguous case.

The author is experiencing a colossal case of a) denial (in the psychological defence mechanism sense) and b) confirmation bias, and put his brother through unnecessary procedures out of the resulting tunnel vision. He throws around terms like "hypothesis" without any conception of what it means to formulate and test one, and references journal articles as supporting evidence like a desperate defence lawyer on a bad police procedural show.

Having self-justified forcing his brother through invasive and unnecessary procedures, he demonstrates utter lack of self-awareness with: "I noticed was that his speech, which had always been slurred, seemed distinctly clearer and faster to me, and still does." Like most cranks, despite having tossed around the idea of a hypothesis, the author still excuses himself from making a quantitative study.

What happened here is that an emotionally burdened guardian has been afforded the latitude to conduct an unethical, statistically meaningless and unscientific medical experiment on a subject incapable of giving informed consent. In my moral view, it is solely the motivation (apparently) borne of fraternal concern that separates the author from some extremely gruesome historical figures.

The lesson for those of us who make decisions every day, from the technical to the human, is to recognise the red flags signalled by an overloaded, hopelessly biased mind - and adjust our credulity accordingly.

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