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What My Son's Disabilities Taught Me About 'Having It All' (theatlantic.com)
222 points by twakefield on Aug 14, 2012 | hide | past | web | favorite | 85 comments



> "You know cognitively, he's functioning at the bottom 1 percent of children his age," [our neuropsychologist] said. [...] "That means 99 percent of children are doing better than he is." [...] He waited, seemingly perplexed. "Having seen what I saw, and of course you have to be with your son all the time -- I have to ask you, how do you have the patience?"

I'm confused, can anyone offer any insight as to how a neuropsychologist would be genuinely surprised by this case? I would have expected that a rather large percentage of a general neuropsychologist's (or at least one that specializes in children) patients would be people who "function at the bottom 1 percent".


I had major problems with that story as well - I used to work as a medical tech in neurology, and half our patient load were kids.

Either the story is made up, she's misreading sympathetic commiseration for astonishment, or the neuropsych is massively inexperienced. Although the bulk of kids I saw were not like that, cases like the one in the article are not rare. One kid I saw had a left hand that was like leather because biting it calmed him down. Academically interesting, but not astonishing, and certainly not something you should be eroding the parents' confidence about. The only kid I saw that was truly unsettling was one whose throat didn't work properly and constantly sounded like he was drowning in saliva. He literally could die at any time, and his mother said that you just have to get used to the sound.

The thing is, most parents with severely mentally impaired children deal with it. They kind of have to, because the choices are largely limited to "deal with it" or "let your life fall apart". Occasionally we'd get parents who would morosely define their lives around their child's problems (or even worse, munchausen-by-proxy, but that was really rare for us to see), but for the most parents it was a sense of 'life marches on'. I think the article gives a great sense of that, but the reactions of the neuropsych really disturbed me.


I get the impression that section was very much from the authors view.

Whilst I know nothing of bringing up a child with such a condition I do know other close to me that have had to care for someone full time. And to be frank most of the time they would have looked "astonished" by such a question but take the opportunity to discus the matter, see what can be done to help the situation (in case close to me, such a conversation lead to them having a outside help every once in while so the carer could have a break).


It's not an uncommon strategy for clinicians to use questions like that to get parents or patients, who are dealing with an inordinate amount of stress, to let down their defenses with the intention of directing them to self-assess their resolve. The author may be able to take care of her child now, but how about when he's 18 years old, when his outbursts may start to hurt others. There are some families who are capable of overcoming the challenges of raising a developmentally disabled child to adulthood (such as this family) and there are some who can't. I've had patients break down and cry when asked pointedly challenging questions like this, however ultimately, this can be a helpful process for the parties involved when applied correctly.

I suspect that the author and others here have missed the true, veiled purpose behind the question, however that does not detract from the overall aims of her article or the clinician. In the end, the clinician's prodding has led to a led to a deeper raison d'ĂȘtre for both the author and the reader.


What's so surprising about a comment like that? It seems like a way to build some rapport with the parents - a recognition that they have a hard job - a harder job than other parents with handicapped kids. And how the parents respond to a question like that would be illustrative to the doctor as to what sort of support the kid is receiving or can expect in the future.

I had a friend at uni who really struggled financially through no fault of her own (parents where farmers going through a drought, she had a serious illness, her sibling was mentally handicapped) and when she went to see the financial counsellor at uni, she asked him "So, what's my situation like?' and he replied 'Well it's pretty bad ... to be honest, your situation is the worst I've ever seen!"

She actually laughed when she relayed the story to me. She said it was a bit of blow to have confirmation that her situation was so bad, but it was also an immense relief to know that she didn't have to feel guilty about struggling. Her situation was bad - but she was still coping. That gave her a big boost of confidence that she could one day escape her troubles (and she has).

In the same way, I read the comment from the neuropsychologist in the same way, an attempt to build some rapport with the parents.


Assuming the article is completely accurate, the doctor's phrasing and mannerisms (e.g., shaking his head, emphasizing not only that the child is in the bottom 1% but that 99% are better than him, "seemingly perplexed"), don't seem consistent with your explanation. His comments and tone don't strike me at all as being encouraging or reassuring, he just sounds completely dumbfounded by the parents' situation, almost as if he pities them for having such awful lives.


I didn't read it that way at all, either. It was sympathy and amazement. Shacking his head in astonishment, and perplexed at how they can handle what they must.

Maybe it's because I've been on the other side, seeing that shaking head and being asked that question, but it doesn't at all come across anything less than support and encouragement.


Alternatively, an intended sympathetic comment is reinterpreted as exactly this in the parent's mind. Sometimes what we mean is not what is conveyed.


That line also struck me as odd. My immediate hunch is that she took some liberties with the quote, as I doubt a medical professional would ask a question like that.


I think this point was not well explained, and what she meant was that the doctor was perplexed not by the kid being 1st percentile but at the calm that the parents kept, their seeming acceptance of the situation. Which is also what is implied by the rest of the story.


I'm sure the kid isn't like that by accident. I don't believe the medical community is doing a good enough job when such children are becoming increasingly common. Hence my answer to that neuropsychologist would be something along the lines of "well, how do you have the complacency?"


Well, it's possible the autism increase is merely due to more frequent diagnosis, but I dunno...

(it's possible, sadly, that these kids maybe used to be infant mortalities back in the day - but it's also possible that pesticides, vaccines, lead paint, etc are simply poisonous to a small percent of the population as well)


Rising age of fathers explains much of the increase in autism rates attributed by discredited science to vaccines: http://archpsyc.jamanetwork.com/article.aspx?articleid=66820... Coincidentally, hormonal birth control came about about the same time as the MMR vaccine, raising the average age of parenthood.


"discredited science to vaccines" well that depends who and what doctors you ask.

Heard of Andrew Wakefield? Secondly, what is affecting fathers so badly that the older they get, the more damaged their offspring could become? Whatever's affecting fathers could be affecting children too.

http://www.haaretz.com/news/national/researchers-warn-of-rap...

Researchers warn of rapid decline in quality of Israeli sperm

http://www.haaretz.com/print-edition/news/study-quality-of-i...

Cause of decline unknown, but may be linked to children and pregnant women's exposure to local contaminants.

-- This isn't just about age. (and I suspect it has very little to do with it)


Andrew Wakefield lost his license to practice medicine due to his quackery, so you should probably use a different 'authority' for your argument from authority.


you should probably use a different 'authority'

What if I don't braveheart?


You'll continue to ignore reliable evidence in favour of the word of a man who falsified data as part of a study that was funded with the intent of supporting planned litigation, and who set up companies with the aim of profiting from his deception.

Wakefield is a quack and a fraud who has done untold damage to public health. Believe whatever else you want but please believe that.


I've had way too many downvotes to just give up on Wakefield like that.

My experience tells me, when I get voted down a lot on HN about non-hacker subjects, I'm usually right. You guys stick to your guns, I'll stick to mine.


OK, let's take a different tack on this.

Let's assume that you (or rather Wakefield) is right and that the MMR vaccine does cause autism (it doesn't but curiously it actually doesn't change much in terms of what you should do).

Given that the risk of any one of mumps (complications including pancreatitis, encephalitis, spontanious abortion in pregnant mothers, impotence in men), measles (kills 0.3% of those who get it in the US, up to 28% in developing nations) or rubbella (can cause miscarriage in pregnant mothers and cardiac defects and brain damage in new borns) is greater than the risk from autism (both in terms of impact and probability), how does opposition to MMR and vaccination in general make any sense?

Even if you accept the most extreme claims of anti-vaxxers in terms of what they might be causing and at what level, it's still better than the alternative.

We've forgotten just how potent these diseases are because we're not exposed to them often these days. Drop vaccines and that would change very, very quickly.


Get vaccinated, and you may be diagnosed with autism. Avoid vaccines, and you will live... at least for a while. And then, dying in your beds, many years from now, would you be willing to trade all the days, from this day to that, for one chance, just one chance, to tell Andrew Wakefield that he may make fun of our single-minded preoccupation with model trains, but HE'LL NEVER TAKE OUR HERD IMMUNITY!

In short: if you don't change the authorities you use, you may hurt your case :)


The problem of course is that not all vaccines are given for herd immunity reasons. Pertussis herd immunity really only exists among kids, and one way to read this is that while this is important in the public school setting, the fact is that the disease will never be controlled in the wild. The CDC makes ever longer lists of Pertussis vaccination recommendations but we have no way of really knowing what's required and once people reach the age of majority, society doesn't have many options, so relatively short-lived immunity as in that vaccine is not a global herd immunity issue but rather an attempt to control herd immunity in a very specific setting.

Similarly, you are never going to get enough herd immunity to make a flu vaccine worthy of mandating for this reason but that doesn't keep the CDC from issuing recommendations.

Vaccines are given for a number of reasons. Some truly present population-wide herd immunity considerations (Measles, Polio, possibly to a far lesser extent Diphtheria, but that is complicated by the fact that we simply don't know how common sub-clinical diphtheria is in vaccinated populations given that the vaccine targets exotoxins rather than the organism itself).

The vaccination regimes have become out of control. There is no need to require the vast number of vaccines that are routinely given today. Stick with the big ones. Don't require all the others. Use the others in the case of individualized risk. Yes, I know the autism theorists suggest the big vaccines are to blame but there is little evidence there. However, aside from MMR, DTaP, and Polio, there are few diseases out there which are so severe a menace to public health and safety that we can't just let people decide on their own.


Downvote and vaccinate away guys. It doesn't bother me.


I love posts like this on Hacker News!

They remind us all that what is in our heads and our hearts trumps everything else: money, stuff, conditions, and the opinions and actions (or inactions) of others who really don't matter.

Like just about everyone else here, I can add my own experiences. I'll just say that I have more of some things than I ever thought I would, but the things that I've lost remind me what's really important. Sometimes I wish I had learned this much earlier, but it's never too late...

Let's all make the most of the cards we've been dealt - one day at a time.

Thanks, OP, for the yank back to reality. Now back to work (with a smile).


Quite off topic, but well worth reading nonetheless.

So often we live out lives with the subconscious belief that we'll be happy when ...[insert big goal]. The reality is though, if we can't learn to be happy with our imperfect lives as they are today, we'll never be happy.


"Happy" is such an ambiguous word and happiness such an elusive concept. While I truly sympathize with the author, this article, like many others in similar vein, seems to offer the same kind of message as that stereotypical mom-to-spoiled-kid admonition: "Eat your food, don't you know how lucky you are? There are children starving in Africa!"

I agree that the media are trying to sell us the idea that happiness is a state to be obtained by achieving whatever is the latest definition of "success" and I agree that this is bad. But if we're trying to avoid that, let's be careful not to run into the other extreme: confusing happiness with contentment.

It is normal and natural for human beings to want more and strive for it. I think that the idea of "having enough" goes against our nature. Sure, I probably have more than I absolutely need for survival. Sure, I guess I "have enough" according to some arbitrary definition of "having enough". I most definitely "have enough" when you look at it from the point of view of someone who has less.

The point I took away from the article is that we should enjoy what good we have. That's a message I can agree with: even if you want more, don't forget to enjoy what you have now. But I can't take that one more step and settle down and say "That's enough." I still don't see why I should do that. Perhaps it'll come to me some day, but for now, all I can think of when people offer me that idea is this passage from Frank Herbert's "Children of Dune":

"[...] Tell me, Namri, are you content?"

"No." The words came out flat, spontaneous rejection.

"Then do you blaspheme?"

"Of course not!"

"But you aren't contented. You see, Gourney? Namri proves it to us. Every question, every problem doesn't have a single correct answer. [...]"


I think that the idea of "having enough" goes against our nature.

Our nature as humans or our nature as European-derived societies? Plenty of indigenous peoples around the world are/were quite happy with "having enough".

Striving for more is a cultural thing, not 'human nature'.


"Plenty of indigenous peoples around the world are/were quite happy with "having enough"."

This kind of 'reasoning' makes my blood boil. I've told this story a million times, but here it goes again: I was once in Puno in Peru, at the shore of lake Titicaca. It's a famous tourist attraction, where 'indigenous' (I loathe that word) people used to live on floating 'islands' made out of reed. The story that is portrayed to the tourists is that they still do; as happens with many of that sort of travels, I was surrounded by obnoxious 'embrace other cultures' idiots who were saying how great it was that these people still lived like they used to, and how much better it would be if we (= in the West) would also do so, and how 'authentic' it all was.

Well, we were on the first boat of the day, and along with us rode a bunch of 'indigenous' people with reed skirts who had missed their boat to the island 45 minutes earlier, because they were living in Puno in a proper house where their kids could play soccer and where they didn't have to fear at night that the very house they and their children were sleeping in would sink from right under them. While a bunch of rich white assholes (disclaimer: I'm white and by most global standards fairly rich, I guess, although I think that most of the time I'm not an asshole) were proclaiming how 'authentic' living on a reed boat was, these people who were actually living that life decided that they would get out of it as soon as they could.


Boil away. I also hate the "aren't they quaint" crowd, who think it's a shame that third-worlders buy mass-produced t-shirts these days.

But how many cultures were as driven by the need for pure wealth as Europeans were? If it's a 'human trait', why do we see broad technological development in only several areas?

I mean, hell, if your argument is "Folks in Puno were scared that their house might sink", let me counter with "Fuck it was hard for the masses in England during the Industrial Revolution", and it was the wealthiest nation the world had ever seen to date. England was spurred to improve their lot so drastically because of culture, not innate human nature. That's my point.

Perhaps you're just hung up on the word 'happy'. Change it then to 'content'.


+1

One interesting feature of Indonesia where I am right now is that unlike any other nation I have ever been to, handicrafts are used for everyday things. If you remember, this is what Barak Obama's mother was studying when she moved here so many years ago. The fact that handicrafts are still valued, and that hand-woven (and decorated) tablecloths still decorate my mother-in-law's table, or that much of the furniture is hand-made (though this is sadly changing as Cheap Plastic Crap(TM) is replacing it) gives the country a sense of vibrancy that wouldn't exist otherwise. Even today, while mass-produced T-shirts (a major Indonesian export) are used for every-day wear, for particularly important gatherings, hand-dyed batik is still a status symbol every bit as much as hand-made suits are in the US (I have seen shirts sell in boutique markets for $500 USD!)

What we are missing is quite frankly a sense of place.

But on to your bit about the industrial revolution in England, let me suggest reading "The Servile State" by Hillaire Belloc (you can find a PDF on-line for free since it is out of copyright). He suggests that the industrial revolution, which began in England, occurred specifically because of Protestant efforts to get peasants off their land, and thus unable to earn a living other than working in the factory. While his writing style is very early 20th century, his views on history and slavery are backed solidly by everything I have ever studied directly and while the book is a sort of cult classic for Libertarians, it is hard to see why since the book is as uncomfortable with liberal capitalism as it is with socialism.


May I recommend Max Weber's "The Protestant Work Ethic and the Spirit of Capitalism"?


Our nature as actors subject to game theory.

Societies that don't believe they have enough will tend to seek out more, conquering the societies that do believe they have enough. Eventually the whole world ends up unhappy, because cultures that desire more end up committing genocide against cultures that do not have that same hunger.

I've heard similar evolutionary explanations for the hedonic treadmill and the evolution of happiness itself. There's a reason for desire: it spurs us on to do ever larger things, which makes us more likely to survive (or at least, not get killed by our neighbors who also want nice things) and pass on our genes.


That still doesn't mean it's human nature, just that it's the nature of the dominating culture. If a sheep is eaten by a wolf, it doesn't mean that it's in the 'nature of animals' to eat other animals; that the sheep all along wanted deep down to munch on meat.


Our purpose in life is to spread our genes as far and wide as possible. As such, it's not far off to say that "striving for more" is a facet of human nature; having more money, a fancier car, more goats, bigger muscles, etc is a great way to get more mates, and fulfill your evolutionary goals to a larger extent.


Fuck success, and all the glorification of it. I've been a slave to it (and ambition, which is just success in another guise) for way too long.

Why do I say this? Because I'm not fully convinced it was always me choosing success. I was choosing success out of my own broken desire to be accepted socially, as if I had to redeem myself in people's eyes. This was a false reality I'd constructed based upon negative experiences in the past. The winning move was not to become the Ideal Male Seen On Magazines, but instead to grow into my identity. I have nothing to prove, and no one to impress, ideally.

I'm not saying success is bad. I just wonder sometimes if someone benefits from all the neurosis and anxiety that the trappings of success lays for people. Capitalism? VCs? Because it seems that many elements of culture are not created with our best interests in mind.

Think about it.


The winning move was not to become the Ideal Male Seen On Magazines, but instead to grow into my identity.

Sounds like you've traded one mythology for another. I doubt there was any "identity" that you pin-pointed, decided you wanted to grow into, and worked toward growing into. Rather, I think that "to grow into my identity" here means "to grow into that which I will grow into", making it self-fulfilling.

Evolution gave us pain and suffering; indeed we shouldn't glorify it. But we should also not glorify the way things are as the way things should be. Can we all please deal with our insecurities in some other way than by making up a story saying it's all okay? The world is on fire. All is not okay.


> The world is on fire. All is not okay.

I'm well aware of this, and looking for ways to contribute to the good of humanity, rather than racking up a huge bank account. That is what I choose.


Our 'purpose' is no more to satisfy the evolutionary process than water's 'purpose' is to satisfy the Water Cycle. Evolution isn't a thing with motives, and certainly doesn't have goals. It's a description of a process - it can't impart purpose.

What you've described is bland pop psychology that homogenises human behaviour into one stereotype; that everything we do is aimed at improving mating chances. We're a lot more complex than that.


"...having more money, a fancier car, more goats, bigger muscles, etc is a great way to get more mates, and fulfill your evolutionary goals to a larger extent."

Indeed. Being rich and famous is a way to compensate for the lack of genetic traits that are typically attractive to the opposite sex (be it height, facial looks, or even race). Salman Rushdie, Jay-Z, Tiger Woods...


So what drove the indigenous in Africa to migrate to Europe?


Do you mean before the slave trade?

In early times (as in the African Pump migrations) I would assume that population pressures, and associated food shortages, would be to blame.


Jack Dorsey tweeted this a couple days ago and I thought it was pertinent: "Be happy, but never satisfied." -- Bruce Lee

http://twitter.com/jack/status/233963752347795456


Are you referring to the article? It's not off-topic if it's worth reading. I'm sure many here are rather well-off but still struggle with happiness.


Well, I'd already read (and enjoyed) this article outside of Hacker News, so when I saw it on the home page I was quite surprised as the article has no reference to technology, start ups or business in general.

With that said (& in case I was misunderstood) I have no issue with it being posted!


Every time I read a story about a kid with developmental disabilities and gut/gluten issues, I'm dying to know if they've ever tried MB12 and L5MTHF injections. God knows it changed my kid's (and my) life.


Not questioning your personal experience but do you have any scientific studies not authored by vendors of the supplements that support this. I have an autistic son, and like most parents in this situation, helping him is my number one priority. However my understanding jibes more with this NIH study which shows no statistically significant benefits. http://www.ncbi.nlm.nih.gov/pubmed/20804367

I'd love pointers to peer-reviewed studies in favour of this stuff, as I'd love to believe there's a simple solution like this... I just fear there isn't.

Again, not questioning that you feel your child has benefited - just asking what tipped the balance for you in trying this out and do you have any scientific studies you can point one to in order to research this more?


We were lucky enough that one of the first interventions we ever tried for him besides OT basically cured him. I can tell you that many, many parent in the online communities we're members of will tell you the "talked after MB12 shot" story.

So, no action we took was on the basis of a comprehensive and wide-ranging scientific study of studies... rather finding a D.A.N. doctor who knew just what to do.

What tipped the balance was that this is one of the least interventive things possible. Really THE least. Everything he takes can be had over the counter. We did it blind at the time because I had no clue about 677T and only found about it later.

To honestly answer your question, as I mentioned below, I'm getting the feeling (again, armchair, lay person only, but been living in communities real and online for a few years now) that autism is an overly or perhaps entirely umbrella term that's really capturing a number of diseases with similar pathologies. One of which would be 677T/1298C mutation, specifically homozygous or compound hetero. The good news is that it seems easy to treat.

I know not every autistic kid out there has the same root cause, but being the parent of one, and going to his (old) school, and seeing so many poor beautiful kids impacted that it just crushes my heart to pieces, and their poor parents trying so hard to fight through it all and get them help... I really have no choice but to be an advocate for getting your kid screened. It's a simple blood draw, find out their 677 and 1298 status. And if they're anything, even heterozygous, immediately get them on MB12/L5MTHF.

I fear for other parents, esp. those of vax injured kids, the road could be much harder, with chelation possibly being necessary etc (which is obiously fairly interventive and HIGHLY controversial). But if there's any chance that part of the solution could be such a low hanging fruit, I have to get the word out as much as I can.


I'm glad your child got better. But you are falling for post hoc ergo propter hoc.

If this cure is so incredibly quick and awesome, it would be amazingly irresponsible for its proponents to not run a double-blind test.

Otherwise we just get into dueling anecdotes, like http://www.chicagotribune.com/health/ct-met-autism-therapy-l...


Did I say you can cure autism with B12 shots? I don't think so. I said my son was diagnosed as autistic, showed marked improvement within 24 hours of MB12/L5MTHF injections, and after the fact we came to discover homozygous 677T mutation, for which MB12/L5MTHF would have been the primary course of treatment had we not already embarked upon that path.

My post is more about how something with a very specific root cause, e.g. methylation problems, was diagnosing as autism (across multiple doctors, naturopaths, pediatricians, etc), and how it may be the case that some subset of autistic kids could be in a similar boat. From that study itself "However, detailed data analysis suggests that methyl B12 may alleviate symptoms of autism in a subgroup of children, possibly by reducing oxidative stress."

What I'm a proponent of is genetic screening (a simple blood draw + lab work) for an autistic child to look for 677T/1298C mutation. That's a known problem with a known treatment and I don't think there's anything irresponsible in advocating for that.

Autism is such a wide-net term that I would have a hard time inferring any meaning from a study that simply categorizes the subject(s) in a binary autistic/not autistic manner. e.g. which ones were vax injured, which ones have gut issues, heavy metals, yeast overgrowth, genetic conditions, etc. Many children imaginably require a multi-pronged approach so to try just one particular approach against an unqualified set of subjects seems bound to disappoint.


I would have to agree about autism being a catch-all to describe a set of symptoms, but having multiple possible causes.

Alas, the B12 shots seemed to have rather small effects on our daughter. That said, I think the diet and vitamin regime that we were on 2 years ago (diet is hard to enforce at school) worked better than the drugs that the neurologist has been trying.


Not Quite:

> However, detailed data analysis suggests that methyl B12 may alleviate symptoms of autism in a subgroup of children, possibly by reducing oxidative stress. An increase in glutathione redox status (GSH/GSSG) may provide a biomarker for treatment response to methyl B12. Additional research is needed to delineate a subgroup of potential responders and ascertain a biomarker for response to methyl B12.


Why? [citation needed]


Son was diagnosed as autistic at age 2.5. Many developmental delays including speech, inconsolable screaming, waking up 8+ times a night, and on and on. Literally a day after receiving his first MB12/L5MTHF injection he started talking. In the year and a half since, along with other supplements (fish oils, B6, probiotics, TMG, Zinc, etc -- all over the counter), and cutting out soy/gluten/dairy/eggs etc he's basically a totally typical kid now - he has no therapies, goes to a normal school, is advanced in some areas.

For myself, I lived a long time with low-grade but chronic anxiety and depression and after all this went down finally had some testing done on myself and found out I am homozygous for the C677T mutation, which means my body can't make methyl-B12 or methyl-folate. (Homozygous is 60-70% reduced efficiency in the reaction). I started supplementing with the same (though I get my MB12/L5MTHF orally, not injected), and for the first time feel like a cloud has been lifted. It's been amazing.

Turns out my mom, her dad, and so on and so forth were all B-12 anemic. It took my son being severely impacted for ME to finally get tested to finally figure out for the whole family what the problem is.

The interesting part is when the methylation process is disrupted by this mutation one of things whose production suffers is glutathione. It's a very important antioxidant (http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-...). Thinking about one of the major detoxifiers of the body being broken is interesting in light of the seemingly tenuous links between "autism" and vaccines etc.

In short my armchair speculation is that there's likely a large overlap between undiagnosed 677T/1298C mutation sufferers and "autism" and when you think about injecting those kids with things that contain known irritants causing even more inflammation that the body can't clean out, it's not hard to imagine why it seems like they "cause" autism. To me it's simply more like pulling the trigger on a gun that's already been loaded and pointed to your head.

Homozygous 677T mutation rate is somewhere between 1-15% in the US.


This is...fascinating...and something I really need to study more. Given I have a family history of colon cancer, leukemia, and schizophrenia (all of which show up in the wikipedia article that is a top DDG result of "C677T mutation"[1]), there might be something more I have to care about here.

Do you have other references I could follow up on? 1. https://en.wikipedia.org/wiki/MTHFR


Be very careful listening to anecdotes. Autism is a delay, so you could do something useless like crystal therapy and have the child get better afterwards, and -- based on standard human biases we all have -- think that the crystal therapy cured him.

If you want to see what happens with an actual double-blind experiment, check out http://www.ncbi.nlm.nih.gov/pubmed/20804367


Care to further explain the purpose of these injections and how they personally affected you?


See my response below but I'll also throw out this link here that I found recently:

http://drneubrander.com/blog/2011/08/why-is-methyl-b12-stres...


They are to deal with a metabolic deficiency processing and/or digesting B vitamins. (my daughter has taken the methylated B12 shots before)


OK, I caught methylated-B12, but what's L5MTHF?


L-5 Methyltetrahydrofolate


Ah, a variant of folate / folic acid / folinic acid sort of thing. Thanks.


and for our newbies to autism spectrum jargon out there: GFCF = gluten free, casein free (no wheat, no dairy, nor things derived from those proteins)


Interesting. Have people started offering cookbooks, recipe guides, and so forth, predicated on these principles? No gluten, wheat, and dairy would knock out quite a bit of my diet.


I know someone with food allergies who swears by this one: http://www.amazon.com/The-Egg-Free-Milk-Free-Wheat-Free-Cook...


Thanks! Ordered.


The diet ends up being pretty close to paleo. Other things that are commonly cut are soy and eggs. And no meat that is grain fed, so that mainly leaves grass fed beef, game, lamb, etc.

It can be a real pain in the f'in ass but once on the diet I've felt and looked the best I have in years.

(I forgot to mention, in addition to being diagnosed with the 677T mutation I also found out that I had severe IgG food sensitivities to gluten, oats, dairy, soy, all eggs, all fowl meat, almonds, peanuts, cranberries... shudder to think the 10 years I spent being vegan eating tofu and seitan full-time...)


yeah, I used to jokingly call this the "pseudo-Atkins" diet, but of course, you can have a potato, or some brown rice once in a while.

Glad the diet and vitamins are working well for your family. We need to get our daughter back on a more restrictive diet, I think.


This is a fantastic heartwarming story that I think most of us will have something learn from. For me, the takeaway was, as Tolstoy said: "When is a man free? When he recognizes his burden", i.e. a graceful acceptance of circumstances that one cannot change. I have long proposed to have a course "Life Engineering" in schools teaching people metaprinciples of planning and enjoying life, this should definitely be one of the reading assignments (along with DFW's commencement speech, and many others).

Yet ... yet ... while I truly believe that the thoughts expressed here are a major part of individual happiness, if a significant portion of the society behaves/acts according to these principles, I may not want to live in such a society. Unending hunger for new things, although it generally brings about personal unhappiness, takes society forward faster; there are many examples of such personal sacrifices in science, literature, music, e.g. how many great poets/writers do you know who have a happy family life (came to mind, since I recently read an essay by Alexandra Styron).

On a different thread, (overgeneralizing, but only a bit) being content and acceptance is very common in "the East" and not just Buddhism's influence either, it is a common theme in many streams of Islamic thought. Something can be said about the effect of this in why these countries couldn't catch up with the pace of the "materialistic West" (yes, yes, there were a ton of other factors, but I think this may have been one of the major influences).


The Stoics were fond of saying "The inner part cannot be delivered into bondage." In other words, we are free when we decide to be. Nelson Mandela or Martin Luther King may have been more free while in jail than most people are on the outside as they go about their daily lives.

The upshot is that society doesn't owe me (the inner part) freedom. Society can't give that to me. It can't take that away from me. Only I can do that.


If anyone is interested in this topic, you should check out Louis Theroux's Extreme Love series http://www.bbc.co.uk/programmes/b01gvt26.

Some parents seem to echo the same sentiment, but many of them don't. While larger families seem to be able to cope, and actual appreciate having someone slightly different, many single mothers are forced into having their children taken in by the state.


Louis Theroux is an excellent reporter. He really has the gift of getting in touch with the people and stories he covers. I mean, the guy spent a lot of time with the WBC and still tried to understand them instead of going crazy like a lot of people would have.


I told a lady at my son's school, after I dropped him off one morning: "There's at least a billion people who would love to be wearing my shoes right now."


Nice read. Nothing new, just read the old Greek philosopher Epictetus. https://en.wikipedia.org/wiki/Epictetus.


I usually have a hard time ignoring the Joneses and feeling content with what I have, and I don't think that's a necessarily bad thing. Those who accomplish the most, from Thomas Edison to Bill Clinton, often do so because of this drive to be better than the rest of us and have it all. Progress depends on discontent, and it's easy to read feel good articles and exchange "happiness" with "laziness".


I think it depends on the field and the person: in politics and business, probably.

Do you think Einstein or Gauss were driven by a desire to have it all? I suspect they'd still do what they did even if they'd "made it" and were the richest men on earth.


This aside has nothing to do with autism or the writer of the article. I just want to tackle the "having it all" discussion.

When people say they want to "have it all", they're not actually saying they won't be happy until they have everything. A life without tradeoffs is literally impossible. You can't, for example, become an expert on every subject or visit every location in the world or learn how to play every musical instrument ever made. It's impossible. Rather, they want a life full of the stupid bullshit tradeoffs that you have to deal with if they don't have resources, like having to decide between a 90-minute commute vs. living in a cramped space without a dishwasher.

Those horrid tradeoffs make it impossible for most people to achieve anything great. It becomes a self-perpetuating cycle. If you're losing 20 hours per week to housework, you won't have a good career. If you don't have a good career, you won't be able to afford help. You have to bust your ass during your 20s and 30s (and preferably not have any health problems or setbacks) while you can to establish momentum, and just hope that your reproductive potential hasn't declined too much by the time you're career's in order and society has thereby given you permission to have kids properly.

Tradeoffs always exist, but there are people who are richer and more established and have a higher quality of tradeoff to face. If you're debating whether to leave a high-level position for a "risky" CEO spot at a funded startup, this is a high-quality tradeoff. If "downshifting" your career means you buy a place with a view of Prospect Park instead of Central, that's a high-quality tradeoff. If having another kid means that one spouse is going to have to give up a career, that's a low-quality tradeoff. People with enough resources (not just income, but also connections; well-connected people don't fret about getting fired and don't have to work 60+ hours per week) can have two successful careers and well-adjusted children.

The "have it all" rhetoric is an attempt people make to universalize the problem, because no one can actually have everything, and divert attention away from the more specific/parochial fact that they're miserable because they don't have enough resources (since no one likes a person who whines about not being rich). And if you want to actually achieve something in this world, most people don't have enough. Most people spend their lives bogged down in shitty details implementing the crappy ideas of the people in power.


> If having another kid means that one spouse is going to have to give up a career, that's a low-quality tradeoff.

This is not an objective statement - that's your opinion. Perhaps the tradeoff is desirable - that person may not value their career so much, or can realize the obvious - you can always return to it later.

That said, I agree, "having it all" is a completely meaningless and damaging phrase - I equate it to "being all things to all people" - ie, rather naive outlook.


If having another kid means that one spouse is going to have to give up a career, that's a low-quality tradeoff.

That depends entirely on the spouse. In a culture where 2 working parents struggling to survive is the norm, the freedom (financial and otherwise) to be able to choose to stay home to raise children if that's what you want is certainly a high-quality tradeoff.

Being forced to abandon a career when that's not what you want is a low-quality tradeoff, yes.


Pretty accurate for my case. I have a nice new home, a good family, a good job, etc... but I spend a decent amount of my spare time working on a game as a side project because it's really my passion. I try not to complain about it though because I do realize I am very fortunate. However, I do definitely feel that catch-22 where if I didn't have a full time job I'd be able to dedicate more time for my game but without my job I'd be kind of screwed. At the end of the day though, I'm happy just to try and make my game work but I can't really complain about much even if it doesn't. I won't blame anyone else or even myself really, I do try hard. I'll just keep implementing the crappy ideas of the people in power instead.


Wow! Well put.

This is also the same with money. People often say having a lot of money doesn't bring you happiness. Well neither does not having money.

Besides there is nothing like total happiness. You just have levels. Having a lot of money solves a lot of fundamental problems, giving you the room to worry about other high-quality issues in life.

You can never do away with those things, but having a lot of wealth, resources and money means you continually ensure all low level issues are taken care off and you move towards bigger things.


I don't think it takes a lot of wealth either. It just takes enough wealth to meet those low-level needs.

A lot of people spend a lot of their money on things that do not contribute to their overall quality of life and happiness. We can do with less if we are not interested in one-upping everyone else. A simple car (and only one if possible), a simple apartment in a safe community, basic food, etc. don't take a lot of wealth to maintain. What is required though, as the original author points out, is changing the expectations we have in life.

Why replace a working stove? Why is it that important that you have a new one? When I rented out my house, yes we replaced the stove but that was because the oven heating element had failed, and it had other problems. We felt that the move to a self-cleaning oven would be a good thing for the renters.

Do more with less, and the rest takes care of itself.


As michealochruch mentioned. You never get out of tradeoffs. The only thing is the more you have the more freedom you get to make 'high-quality' tradeoffs.


But my point is that you can get freedom by local optimization rather than just by getting more wealth. People lose a lot of freedom by squandering what they have.


I think though there is a deeper aspect of this. How can you be an employee and the parent you want to be, and still find time to do something great? The simple answer is you can't. You have to pick any two, and even there you have a bunch of tradeoffs. Want to breastfeed? How are you going to hold down a job unless you can have your kid around?

The work/home division makes this impossible especially for women. The answer of course is self-employment but that often means giving up on a "career."


I think this is on track to change in the next few generations with working from home being more and more legitimate. If you have the skill to do the job, you can be a software engineer that works from home 90%+ of the time today; innovations in telepresence and better collaboration software are going to really push this envelope in the future.


I think the more interesting question is whether we will see higher-value positions move more freely between self-employment and formal employment in the future. This would be the best possible solution. When it makes sense to be self-employed be self-employed. Then leverage that in getting into a higher-value job position when you return.




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