A new drug ...

There is a new drug being tested for autism, according to this. It is supposed to supply some sort of enzyme to help digest proteins. The first article I read said the inventor/found claims that studies have shown that some autistic children can't digest protein. This was news to me.

Well, apparently, they are talking about the whole gluten-free, casein-free (i.e., gfcf, to those in the know)(and for some, soy-free) diet thing. But I was unaware of any studies that showed that any autistic children really were not capable of digesting these or any other proteins.

We're not GFCF, by the way. I tried it for a few months at first. It did turn out that T's twin brother really was having serious issues with dairy, because boy did he react when I did the challenge part of the elimination test (i.e., gave them dairy for the first time after weeks of no dairy), but T -- results were less clear. I had T tested for gluten allergy, and although I know those tests are not determinative, they were negative. I hated being gluten free. Turns out, I really really love gluten. who knew?

We went back on gluten. I couldn't tell any difference, honestly.

But I have continued to wonder. There sure are a lot of true believers in this diet. Can they all be wrong? Maybe I've made a mistake? I don't know.

Also, I have been struck lately by an amazing fact: our paleolithic ancestors did not eat any grains or dairy (or beans, either, by the way), at least accordong to the experts I've been reading.

In case you didn't know, supposedly we are still genetically identical to those ancestors, who turned eventually to the ways of agriculture when their meat supplies ran low. Before that, we didn't grow food or raise cattle.

And boy did they eat a lot of meat. It was about 50% of the diet, apparently.

And when we started eating all those grains etc., you know what? we got shorter as a species. we got some other diseases, too.

Pretty interesting.

So ... more to think about.

Not saying 'not'

since thinking about T's struggles with the word 'or,' I've also been wondering (not for the first time) about how he expresses negation. If Simon approached him and he wanted Simon to leave him alone, for example, instead of expressing that he did NOT want Simon to touch him, etc., he would say "want Simon to run." It's true he often says "don't want any" if I offer him something, but I think it's scripted, just a memorized phrase. I coached it by saying "you don't want any?" every time he rejected something (this took probably months, by the way). After many months of effort, he is starting to be able to use the word 'no,' but I suspect this may be scripted too. I made up games and songs and stories involving things I knew he already knew the answer to. I pointed to something blue, for example, and said, "is it orange?" "Noooo." "is it purple?" "Noooo." "Is it blue? Yes! Yes, it is blue!" I did with other things he loves and knows, like letters and numbers. Also names of people. Animals. Really, anything he knew the label for. But even when started to get that right, he didn't immediately get how it applied when I asked him, for example, if he wanted something. He's getting it now, but it has been hard.

And so I guess, in case there ever were any question about it, that T really does have autism. I found an abstract to a 1978 article called Linguistic negation in autistic and normal children:

"Young, severely maladaptive autistic children with some speech competence were compared to normally developing 3-year-old children of lower and middle class and 5-year-olds of lower class on negation tasks. All subjects were shown 12 sets of cards depicting negative contrasts designed to elicit semantic categories of nonexistence, denial, and rejection and were tested for production, imitation, and comprehension. Syntactic and semantic analysis revealed that autistic children were superior imitators and poor producers but showed skills in comprehension comparable to a 4-year-old's level of functioning. While retarded in some functions, the experimental group produced syntactic structures that were more rigid, suggesting the significantly greater use of imitation as a major strategy in linguistic coding."

I could have gone all day long without seeing the word "retarded." Do you know what I mean? Ah, the good-old 70s. While the grown ups were talking about love and peace, some of us lived in mortal fear of being accused of riding to school on the "special bus." Ah, third grade.

But I digress. (Who me? never!)

So, I try to find out more. I seem to have bitten off more than I can chew, yet again. I got this tantalizing power point in which every other word is some sort of specialized jargon. Oh, if only I could just download some sort of glossary into my brain so I could read this stuff. But I learn there is something called "intraverbal" behavior that these people seem to claim is somehow teachable. I think? and it's related to having problems with negation. Maybe some day I can figure it out.

Disjunction Junction

So one of the things that T is unable to get is the word "or." I say, do you want grape juice or prune juice? He says, "yes." I say, no, no, you need to PICK one. He says, "please." I pull them out and hold them both out in front of me and say: "Point to the one you want." "which one? which one?" he points at the grape juice and says "do you want grape juice?" then slowly swings to the other and says "or prune juice?" I coach him: "Say, 'I want THAT ONE!'" he does it, but ... okay, I'll spare you the agonies of this process. Suffice it to say, I think we're getting somewhere but it is DEFINITELY a process. It's been weeks. Anyhow, I think he will get it soon, largely thanks to my "story therapy."

Basically I write stories and tell them in which characters have dialogue over and over in situations that hopefully demonstrate what is going on. Our latest in the series features Veronica, whose cruel mother makes her choose between two items over and over again before she can do anything. first, she gets dressed, and has to choose shirts and pants and sweaters and socks and shoes and maybe a hat. there are always only 2 choices, and her mother always gives her the one she picks. He seems to love the Veronica stories so I'm hopeful it's because he's starting to get the "or" business.

But I've been wondering what this is all about. What does it mean that he doesn't seem to get this? Is it normal? Is it part of a communication disorder? S certainly didn't have this problem. I can't even remember how old he was when he got that he needed to point at what he wants when I offered a choice. It's been a long time. According to Laura Mize at teachmetotalk.com, typical children master this ability to choose between 2 options by 30 months. (see this helpful page with tips for how to speed things along.)

So he's about 6 months behind and counting in this, and I get the feeling that without my intervention ... well, there's no telling how long it would take him. Maybe he would just eventually get it? I dunno.

I wish I knew why it was so difficult for him. I did find an abstract of this paper: "Is this a dax which I see before me? Use of the logical argument disjunctive syllogism supports word-learning in children and adults." What the author seems to be saying is that both adults and preschoolers use process of elimination in order to map word meanings. In other words, if you use the word "dax" to refer to something in the room, and there are only 2 things in the room, one of which you've never heard named before, and one of which is a hairbrush, you will naturally say to yourself, "oh, she must mean either the brush or that thing. Since I know the word for brush is 'brush,' 'dax' must refer to that thing.

This is a pretty basic component of logical reasoning. Is it possible that there is something wrong with T's ability to engage in this kind of "disjunctive syllogism?" Is this why he didn't start learning language until I began this systematic effort to laboriously teach him language piece by piece? Is it related to his difficulty understanding 'or'? Could it be that his brain just doesn't do disjunctive?

Why I torture myself with these questions? I guess because it's looking like I can expect to get zero help from the county for T unless I go to the mat. And I really don't want to.

And part of me is getting really pooped out. Did I mention that the Emory Autism Center interacts with the autistic kids every ONE to THREE minutes over eight hours per day? Do you know how hard it is to interact with a kid every THREE MINUTES (never mind ONE!!)? When you have ANOTHER KID?? I do, thanks to my fancy new electronic timer. It ain't easy. OK, it's impossible. It really is. I just can't do it.

Am I really screwing up because I'm (largely) not succeeding at doing it? -OR- Am I killing myself by trying for no real reason, because maybe it doesn't make any difference? {are you impressed with the way I almost made my little digression relevant to the supposed subject of this entry?}

Of course the beauty of it all is that I will never, ever, ever know. Either way, I will never know whether anything I am doing made any difference or how much or if I am doing more than I need to or not enough. I will never know.

But here is one other not completely related thought: thinking about this apparently inherent tendency to think in the disjunctive reminds me of a lot of things I've read (but didn't understand) about non-duality or non-dualism. I would explain what that is, but like I said, I don't really know. You might check out the Wikipedia explanation. But the way I've chosen to interpret it for now is ... sometimes people tend to think in dichotomies, and they're not real, either because there is no true division between the two alternatives, or ... whatever. I don't really understand it. If you think you understand it, please let me know what you think it means.

But ... where I'm going here is ... could it be that some special individuals are just born without this tendency to interpret the world in dichotomies? The rest of us are certainly famous for our false dichotomies. And some of us are famous apparently for denying the existence of dichotomies the rest of us are pretty settled on. And even our computers think that way, don't they? with their zeros and ones. on or off. we love to see the world in pairs. stop and go. yes and no. mind and body. man vs. nature. young and old. we've even paired up colors, although we call those complements.

Could it be that this lack of the disjunctive is part of what has made so many autistic geniuses through history? Could it be that some people -- BECAUSE they are unburdened with (false) dichotomies -- are able to think "outside the box?"

Could it be that this tendency to think in the disjunctive puts the rest of us in the box?

Too Much Stimulation and Too Many Toys

I wonder, in the voluminous theories out there, if anyone has ever questioned whether autism rates could be up because we are just overstimulating our babies? I'm sure I didn't have a third of the toys as a child that my twins have had since birth. I'm not saying that having an object around that was deliberately designed to be fascinating could cause autism. But I can't help but wonder about kids on the edge. Kids that maybe could go either way. Was there a moment when T could have become NT but something tipped him the other direction? Was it that first day I put him in a bouncy seat so I could nurse his twin brother? What if I hadn't had a C-section and been horribly anemic? What if I could have carried both babies at once? What if I had carried him more, worked harder to get him to gaze back with me, worked harder to get him regulated, used less distraction to try to manage the difficulties in taking care of two newborns? What if he had been an only child? What if we lived outside in a tent, with no toys, no electric lights, no laptops, no trains, no traffic .... I know you're not supposed to ask yourself these questions, but it's so hard not to. Especially if you really want to know what it is. And I do. I really do. Well ... I know none of those things CAUSED autism, but they couldn't have helped, you know. What if the difference between today and yesteryears is that kids who were at risk had a better second chance?


what if there's nothing new causing autism, but there's less of the things that in previous years would have masked it or healed it?

Vitamin D follow-up

I skimmed the article that my pediatrician referred me to at the Vitamin D Council. I have to admit the author said a couple of things that bothered me. Granted, I did not read it deeply, so I may have glossed over some things.

But he suggested that there is some need to explain why identical twins are more likely to both have autism than fraternal twins. Really? Isn't the reason for that somewhat obvious? I will go back and read it again, maybe I misunderstood his point. But what is remarkable about this? Wouldn't you expect identical twins to be more similar than fraternal twins?

I was also bothered by his suggestion that african-americans "may be" more likely to have autism. I saw no actual data on this in his article, but I am pretty sure I read the precise opposite not long ago somewhere else, although maybe I'm mistaken about that. But he seems to be just guessing that African-Americans may have higher rates, and I did not like that. I found it particularly off-putting, actually, that his reasoning was partly based on an assertion that rates of mental retardation are higher among african-americans. I have no idea if that is true, but today, the majority of children diagnosed with an autism spectrum disorder are not retarded, nor do I think that the majority of retarded children have autism. So ... this left me less inclined to buy into his theory in general that Vitamin D deficiency might lead to autism or somthing that is autism-like.

But he pointed out that there seem to be more autistic children born in March, and that caught my attention, because my twins were born at the end of February. I haven't looked up the actual studies on this point yet, so I'm not sure if it's true. But did discover that there DO seem to have been a couple of small studies correlating autism rates with areas that are more cloudy or overcast.

It IS true that I was on modified bedrest and stayed in the house in the same lazboy chair for most of my last trimester. And it's also true that although I consumed gargantuan quanities of milk, I was carrying twins and wasn't taking Vitamin D supplements.

I started reading up some more, and I came across this article on Medscape: "Vitamin D Deficiency: Implications Across the Lifespan." I was struck by this statement:

"It has been shown that above 35° north latitude (Atlanta), little or no vitamin D3 can be produced from November to February."

I'm in Atlanta. So ... I looked it up. It turns out my house is actually at 33° 47' 50.1216," so ... what does that mean? fyi, the pediatrician told me some time back actually, that she thought we could not make enough vitamin d here in the wintertime, even if we stayed outside all day long. I'm just guessing that maybe she has a different opinion about how much of it we actually need?

Well, I can't really sort that out. And with regard to my pregnancy it's academic, because I rarely left the house. But it does make me wonder about whether we could get enough Vitamin D right now, if we went outside ... all day ...

A few other thoughts:

1. I was taking prenatal vitamins. However, it appears that some forms of Vitamin A really do interfere with absorption of Vitamin D, at least according to this report from the surgeon general. Apparently beta carotene is not a problem, though. I wonder what form was in the vitamins I took? I certainly have no idea.

2. I found out at my last doctor visit that I am calcium deficient. He actually said he figured I was probably Vitamin D deficient, because you can't absorb calcium efficiently if you don't have enough Vitamin D in your body. (again, see the helpful medscape article.)

3. The obstetrician sure did take a lot of blood while I was pregnant! Doesn't it seem like someone would have figured out if I was low on Vitamin D? Maybe not. I'll never know.

So ... I don't know. I'd like to do some more reading on it sometime.

But in the meantime ... my real question now is:

1. are we getting enough vitamin d?
2. is there any harm in giving T 5,000 IU a day, as my pediatrician recommended?

Well, I won't detail it here, but I think I am convinced that the answer to #1 is probably no. Even my physician thinks I'm probably low.

I think question #2 is maybe the most important then. How much can we safely take?

It really is possible to overdose on Vitamin D, and this can cause serious problems. According to the National Institute of Health Office of Dietary Supplements (who knew there was one??):

"Long-term intakes above the UL increase the risk of adverse health effects [4] (Table 4). Substantially larger doses administered for a short time or periodically (e.g., 50,000 IU/week for 8 weeks) do not cause toxicity. Rather, the excess is stored and used as needed to maintain normal serum 25(OH)D concentrations when vitamin D intakes or sun exposure are limited [11,90]."

-- Dietary Supplement Fact Sheet: Vitamin D.

But that number (50,000 IU per week for 8 weeks -- which is over 7,000 IU per day) refers to an adult. My son is only 2 (well, almost 3), so ...

To recap, my pediatrician suggeted 5000 per day. Is that really OK? I'm not sure. The NIH actually suggests that the upper limit for regular intake is 2,000 IU per day for everyone except infants under a year old. This is a lot lower than the pediatrician recommended, although again, she was talking short term use.

The NIH goes on to acknowledge that lots of researchers have challenged NIH's numbers as being too low. Apparently, clinical studies have demonstrated that as much as 10,000 IU per day seems safe in adults. However, NIH thinks that those studies were not adequate to assess harm, and that there are no studies assessing harm in children of increased levels. Still, they tell us they are considering whether to change the levels. I looked at their footnote -- apparently they have been considering this since 1997!

My pediatrician tells me they give children with rickets about 10,000 per day for months, and that I shouldn't worry.

I don't know. I am definitely going to up both boys to 2,000 IUs per day, though, since NIH thinks it's okay. They really have not been getting anything near that.

But as for the rest ... I plan to find out how much a blood test costs, how reliable it is, and look for more up to date information on toxicity levels in children. Stay tuned!

Vitamin D

Yesterday I took my twins in to the pediatrician because they've had bad colds for a while, and one sounded a bit croup-y. She told me she'd been reading about links between Vitamin D and autism, and she thinks I should give T 5000 IU a day for a couple of months of Vitamin D and see what happens. Wow. I'm still looking into this. She suggested I read this, and I'm working on it. I haven't read the whole thing yet. Already there are claims in here that I am skeptical about, but I am keeping an open mind. I have heard lots of other autism parents claim their kids were very Vitamin D deficient and had benefited from extra Vitamin D, so I'm going to take a look. Thought you might like to take a look at it too.

More weird thoughts -- electromagnetic radiation

In the car this evening, I heard a piece on NPR about some Toyota cars that apparently are experiencing spontaneous acceleration. Some professor was speculating that electromagnetic interference was causing problems with the throttle. I didn't want to, but I couldn't help but remember ... didn't I read somewhere some "crazy" theory about wireless devices and autism? and aren't there some researchers at Harvard using some form of electromagnetic radiation to help people with autism? Now, I'm not saying ... you know. but it is kind of weird, don't you think?