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“We don’t do autism”

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Re: “We don’t do autism”

#51

Post by tracker1 »

DanBC wrote: post #41
thinkcomp wrote: post #39

Earlier quoted context omitted.

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…

You use exactly the same arguments as people selling mercury chelation or hyperbaric oxygen chambers or etc. There's a huge list of horseshit peddled to people with autism (or more usually their parents). http://www.autismsciencefoundation.org/what-is-autism/autism...

This isn't exactly horseshit though.. TFA is suggesting better diagnostics, categorization and research into variances in cysts and the cerebellum. As to the busy MRI schedule, it might get better if there were more of them and more usage... they are very costly, but so were computers back in the 1970's.

If a significant number of normal and autistic children/adults were scanned more of a matter of course (much like mammograms), then we might actually have better knowledge and improve real world treatment.

---- Edit for clarity

I understand that the sheer usage of mammograms has actually been shown to be a poor predictor in practice, the brain is a bit more complicated, and scanning/evaluating would take more practice... but the impact to society could be very large, indeed.

Re: “We don’t do autism”

#52

Post by Others »

joesmo wrote: post #47
narrator wrote: post #46

Is autism a purely U.S phenomenon? Has it been increasing in other countries? Is it of equal prevalence in all countries with modern medical infrastructure?

I think you're thinking of ADD/ADHD, which is a US based phenomenon/pseudo-disease. Autism is indeed a real disease: http://www.autism-society.org/what-is/facts-and-statistics/

I don't think that people should label disorders diagnosed by real psychologists as "pseudo-diseases". As far as ADHD being a US disease, can I link to: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1525089/?

Re: “We don’t do autism”

#53

Post by [deleted] »

QSIITurbo wrote: post #48
thinkcomp wrote: post #45

Earlier quoted context omitted.

Not exactly the same, because this has absolutely nothing to do with mercury, and has support in journal articles that have not been retracted on account of scandal. Search on PubMed for yourself, or start here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3677555/ The scams you mention are even discussed in the article. Did you read it? Or are you saying that MRIs are like chelation therapy?

The article does not ctrl-f to cysts, but I would be more interested to hear how you'd go about removing or treating a cyst in a developing brain 20-25 years ago. Any suggestions?

[deleted]

Re: “We don’t do autism”

#54

Post by QSIITurbo »

thinkcomp wrote: post #50
QSIITurbo wrote: post #48

Earlier quoted context omitted.

The article does not ctrl-f to cysts, but I would be more interested to hear how you'd go about removing or treating a cyst in a developing brain 20-25 years ago. Any suggestions?

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 in the blog or is the cyst located in a place where shunting does not make any sense?

Re: “We don’t do autism”

#55

Post by steven2012 »

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, something my friend could never afford. I have another friend here in the Bay Area who is a pediatrician that specializes developmental disorders like autism, ADD, etc, and he was shocked and horrified that she would not be able to get any therapy is the two most important years of her life. He said Kaiser in CA has probably the very best therapy and assistance if your children are diagnosed with autism (although this is because of a lawsuit several years ago from someone who accused them of not doing enough).

His son was diagnosed at age 1.5 yrs, early this year, and again, he has to wait 2.5 years to get this therapy. Even worse, his son has had medical issues, and his shitty pediatricians seem to chalk everything up to his autism. For example, his son was suffering for months from ear infections, but because he couldn't verbalize it, all he could do was tug on his ear, scream, and vomit. They kept going to emergency and back to the pediatrician, begging for a referral for an ENT, and she refused. She said it was likely just the son being autistic. They were furious but they literally had no other options, except try to find a pediatrician who was actually accepting new patients, which is rare in his city. Finally, after several months of this poor boy suffering daily, one emergency room doctor said right away that he had an inner ear infection and needed to get tubes put in. This required getting a referral again from the original pediatrician for an ENT, and then the ENT making the decision that he needed the tubes inserted.

The appointment for the ENT is scheduled for November, and it was made in July.

As far as I can tell, the Canadian healthcare system has completely failed my friend at every step. Not only is therapy for his two children far too late, not only is the private option completely unaffordable, but the doctors are untrained to deal with autistic children, don't know how to diagnose properly for an autistic child, but also the waiting times are ridiculously long to the point where it's useless.

Re: “We don’t do autism”

#56

Post by tracker1 »

rustynails wrote: post #17
shakil wrote: post #5

Earlier quoted context omitted.

Why am I getting down voted? I'm just trying to understand the article. If you disagree with the article's conclusion, its the author's hypothesis not mine. He even cites cases of children whose cysts were surgically treated and now lead normal lives.

These were certainly important points of the article. However, it was a shotgun blast that covered much more, incompetent medical profession, inconsistent terminology causing confusion, stonewalls for patients diagnosed with autism, etc. it tried to capture too much in too little space.

I would think that someone would work to categorize variance in the physical and personality affects of autism... much like Myers-Briggs for personality in general. It seems to me that it should have been broken down into sub-categories (not as the article suggests in terms of cyst affect, but in terms of autism in general... they call it a spectrum, but really what is that spectrum and how is it defined. If different characteristic behaviors are given, why not just box them up in an N-by-N grid (max 4 options over 4 behaviors), which would help categorize.

I also feel that having some MRI development scans would definitely help with correlation of data here. No, not every case would be treated, but it certainly could get better in terms of diagnosis and being able to make predictions.

Imagine if all children were scanned at 6mo, 1yo and every other year until 18... that would be much more valuable data to humanity than some other uses of big data storage out there. In this case removing the cyst early might have helped... I don't think that would be the case most of the time... but by not having a better picture, it doesn't help.

We're in a first-world nation and outspend the rest of the world combined in our millitary... we really couldn't get a couple more MRI machines per hospital to handle the capacity? They don't all need to be high resolution scans to point to more information either.

I agree with the comments of many that this confuses and dillutes a few points... that said, it's not a medical paper, it's a blog article pointing out frustration in a lack of diagnostics that could help a lot of people.

Re: “We don’t do autism”

#57

Post by tedunangst »

thinkcomp wrote: post #39
Nkdo wrote: post #38

Earlier quoted context omitted.

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…

Scan everyone and remove all the asymptomatic brain cysts just in case they cause problems in 20 years? Maybe we should also go back to removing everybody's tonsils just in case they develop tonsillitis later.

Re: “We don’t do autism”

#58

Post by thinkcomp »

QSIITurbo wrote: post #54
thinkcomp wrote: post #50

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…

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.

And to your earlier point, that SpringerLink article shows that they've been draining such cysts with shunts since at least as early as 1985, even if they didn't necessarily know what leaving them in place might result in later in life.

Re: “We don’t do autism”

#59

Post by scholia »

Others wrote: post #52
joesmo wrote: post #47

Earlier quoted context omitted.

I think you're thinking of ADD/ADHD, which is a US based phenomenon/pseudo-disease. Autism is indeed a real disease: http://www.autism-society.org/what-is/facts-and-statistics/

I don't think that people should label disorders diagnosed by real psychologists as "pseudo-diseases". As far as ADHD being a US disease, can I link to: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1525089/ ?

Real science is just about universal, whereas non-science varies with geography and fashion.

I'd be happier with "real phsychologists" if they were closer to the "real science" end of the spectrum. More like, for example, neuro-scientists, and less like psychiatrists.

Seems to me this story is about someone looking for real neuro-science and not getting enough of it. Whether that's the right quest is another matter: I don't know enough to know.

Re: “We don’t do autism”

#60

Post by thinkcomp »

steven2012 wrote: post #55

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 bigger).

Your friend should definitely see an ENT to get any infections cleared up, but an MRI wouldn't be the worst idea, either.

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