Hacker News Board Hacker News, browsed like a classic message board
Live data from Hacker News

“We don’t do autism”

medium.com

Post reply on HN
Print view View original

81–90 of 93 posts

Re: “We don’t do autism”

#81

Post by DanBC »

tracker1 wrote: post #51
DanBC wrote: post #41

Earlier quoted context omitted.

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…

We already scan brains of people with ASD as a research practice.

Submitted article doesn't talk about this research, but talks about use of MRI for their own pet theory.

Re: “We don’t do autism”

#82

Post by SturgeonsLaw »

tedunangst wrote: post #57
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…

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.

Number of times I've had tonsillitis since having my tonsils removed? Zero. Just sayin'.

Re: “We don’t do autism”

#83

Post by davak »

someotheracct7 wrote: post #66
bro-stick wrote: post #34

Earlier quoted context omitted.

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…

Yes. Yes you should be tested.

Re: “We don’t do autism”

#84

Post by fingerprinter »

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…

FWIW, we MOVED to Canada from the US b/c our son is autistic and we wanted to get the support Canada (specifically BC) offered.

My wife is a GP and worked at the single best hospital system in the US and we couldn't get anywhere near the support we could up here in BC. That number you quoted ($80k/year) is almost exactly the number it would have cost us to get just therapy in the US, let alone an in class-room aid and in-home tutor.

That said, getting the official diagnosis did take some time but we were able to around that by paying out of pocket (around $1500 CAD) to get the official tests and what not. Also, once you have the diagnosis, there was no waiting for therapy. We could get it right away. Our son now has an aid 50% of the time he is in school. We have in-home therapy a few days a week (we pay for most of this; only some of it is covered), and we have access to parent training and special child social training courses.

There is a very good reason we live here and it is b/c BC has a great support system for autistic children. Like any bureaucracy the Canadian medical system can be very hard to navigate and I've heard stories of people giving up b/c they can't figure out the next steps, which is terrible. But the bottom line is BC was far and away better than anything we could have gotten in the US.

Re: “We don’t do autism”

#85

Post by [deleted] »

tcbawo wrote: post #72
TazeTSchnitzel wrote: post #69

Earlier quoted context omitted.

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

I imagine a study would be warranted, if one does not already exist. If a statistically significant link could be established, why not run tests? How much does it cost to have an MRI performed? How does it compare to the lifetime medical (and social) costs of an autism sufferer?

[deleted]

Re: “We don’t do autism”

#86

Post by gnufied »

tcbawo wrote: post #72
TazeTSchnitzel wrote: post #69

Earlier quoted context omitted.

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

I imagine a study would be warranted, if one does not already exist. If a statistically significant link could be established, why not run tests? How much does it cost to have an MRI performed? How does it compare to the lifetime medical (and social) costs of an autism sufferer?

http://www.medifee.com/tests/mri-scan-cost/ in India. So to the tune of $200 max.

However in US it costs on average $3000 USD. :(

Re: “We don’t do autism”

#87

Post by beagle3 »

SturgeonsLaw wrote: post #82
tedunangst wrote: post #57

Earlier quoted context omitted.

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.

Number of times I've had tonsillitis since having my tonsils removed? Zero. Just sayin'.

Don't want to alarm you, but, be aware that you are at a higher risk for a heart attack[0][1] (and apparently various other ailments, although I can't find the other studies right now). The tonsils are apparently a "fore scout" of the immune system, and removing them hurts its effectiveness. (Similarly, the appendix is a cache of good bacteria which the body needs - removing it robs the body of the ability to repopulate those bacteria populations). Turns out those organs are not useless after all.

[0] http://www.sciencedaily.com/releases/2011/06/110601075128.ht...

[1] http://ki.se/en/news/increased-risk-of-heart-attack-after-ea...

Re: “We don’t do autism”

#88

Post by CydeWeys »

tcbawo wrote: post #72
TazeTSchnitzel wrote: post #69

Earlier quoted context omitted.

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

I imagine a study would be warranted, if one does not already exist. If a statistically significant link could be established, why not run tests? How much does it cost to have an MRI performed? How does it compare to the lifetime medical (and social) costs of an autism sufferer?

I'm just guessing here, but if even 1% of autism cases were caused by cysts or other treatable brain abnormalities, and hypothetical interventions had a 25% success rate, you'd end up spending $1.2M per case of autism cured (using the other poster's figure of $3K for an MRI scan). That seems well worth it to me. Certainly the cost delta between a functional member of society and someone that requires costly support their whole life is way more than $1.2M over a lifetime.

Of course this is like Drake's equation; taking an unknown and breaking it down into made-up numbers doesn't actually increase certainty, but fortunately, these numbers are a lot more knowable than the coefficients in Drake's equation. It's simply that I don't know them.

Re: “We don’t do autism”

#89

Post by CydeWeys »

Asbostos wrote: post #71
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…

The author is being a bit prejudiced by saying her severe examples are somehow not acceptable while more high functioning ones are. Most people are unable to care for themselves. We depend on others to help provide food and water for us, accommodation, etc. Most of us won't stay alive if we're isolated from the support of other people we depend on. Some autistic people with more extreme cases not only can't provide t…

> Most people are unable to care for themselves. We depend on others to help provide food and water for us, accommodation, etc. Most of us won't stay alive if we're isolated from the support of other people we depend on. Some autistic people with more extreme cases not only can't provide their own food, but also can't put on their own clothes.

Did you mean to say "Most [autistic] people" in the first line? Because if you didn't, then your comment seems like a non sequitur to me. Of course most people can take care of themselves. If they didn't, then society would collapse, as there would be more people requiring care than those able to give care.

This discussion isn't about the interconnectedness of the modern world. Yes, we no longer live in a hunter-gather society, and most people probably couldn't farm their own crops or hunt their own game, but that's not what we mean when we're talking about people who are unable to care for themselves. What we mean is someone who is unable to earn money, who cannot navigate purchasing food at grocery stores, who cannot arrange their own accommodation.

I live in Manhattan -- because there is no game to hunt here and no available land to farm, would you truly paint me as someone "unable to care for themselves" simply because I have to subsist on food from grocery stores and restaurants that is trucked in from farms in areas with less expensive real estate? Similarly for water that comes from the municipal water supply?

Re: “We don’t do autism”

#90

Post by CydeWeys »

scholia wrote: post #59
Others wrote: post #52

Earlier quoted context omitted.

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:…

You're using "universal" in a sense that is unfair. Science isn't universal in the sense that any finding must apply globally while ignoring contextual factors. There all sorts of ways in which differing geography, cultural practices, genetics, environmental factors, prevailing diet, etc., etc., can and do create differences in observed diseases. It's unfair and wrong to say that something is unscientific because it manifests in some places but not in others.
Post reply on HN