Where are all the autistic children of dentists?

photo credit-Conor Lawless
Creative Commons license

Once again, the purported link between mercury/thimerosal and autism is in the news. This months "Archives in General Psychiatry" contains an article which looks at the continuing increase in the reported prevalence of autism in California while the amount of mercury is declining, and there is also an accompanying commentary in the same issue.

This article and commentary were discussed by Kristina Chew. Mark Blaxill, a leading proponent of the "autism=mercury poisoning" line of thought, backpeddles somewhat without totally conceding that the theory is dead. Brett of 29 Marbles asks what it would take for either side to change their mind.

Although I ultimately look to science to inform my opinions on things such as causality, I am not above referring to common sense, which is not a bad place to start when considering what kind of studies should be done.

One of the things that has made me doubt the whole autism=mercury poisoning thing from the start are dentists, and the amalgams they place. Specifically, where are all the autistic kids who had dentists and dental assistants as parents? More specifically, where is the large group of autistics that are 35-55 years old that had dentists or dental assistants as parents?

Why do I choose that age range? For a couple of reasons. Since autism wasn't described until the 1940's or so, I wouldn't expect older autistics. Also, this period would correspond to a time when dental caries were rampant (pre-fluoridation of water), as well as a time when handling of mercury and amalgam in dental offices was very casual. Mercury and metal filings (silver and zinc) used to be hand measured into a device, which then shook them together (right at the chairside) until they became a soft "amalgam" which was then packed into the cavity in the tooth. The dentist is typically "right in your face" as (s)he packs the amalgam into the tooth.

While some people today still blame mercury fillings for the exceedingly small amount of mercury vapor that is released by chewing on amalgam fillings, no one disputes that the greatest period of exposure to mercury is when the amalgam is first being mixed together. Since the 1970's or so, dental amalgams have come in a pre-proportioned sealed container, which minimizes the amount of mercury in the air in a dental office. Also, the number of amalgams that are placed today, while still large, pales compared to the past. Fluoridation started in the U.S. in 1955, and by the 1960's started to catch on. This resulted in a lot less exposure to mercury per child.

But between the time that autism was first described and the decline in amalgam fillings being placed in children there should have been an epidemic of children identified with autism, which declined as fillings per child dropped off. There should have been an even bigger incidence in the children of dental workers (dentists and dental assistants) who were occupationally exposed on a large scale to mercury vapor.

Where are they?

There are no studies that have shown this, and I am not even aware of any anecdotes of this phenomenon happening.

How much accommodation is enough?

That was the question I asked myself when I read the story of Sophie Currier, an MD/PhD graduate of Harvard University who is asking for additional break time during testing for her medical license because she is breastfeeding.

The test that Currier is taking is the USMLE Step 2, a nine hour test that is the second of three tests that are necessary to become a fully licensed physician. A physician must pass at least the first two steps prior to starting their residency training. This test is usually taken one year prior to completing one's medical school education. That way, if you are not successful the first time, you have another chance to take the exam the following year, prior to starting residency. Evidently Dr. Currier took the test when she was 8.5 months pregnant the first time, and failed by a few points. If she doesn't pass the test this time, she'll have to delay starting residency for at least another year, until she passes the test.

I have a lot of sympathy for physician/mothers. Both jobs are very time consuming and tough, and juggling two full time jobs is next to impossible. One of my heroes during my internship year was a fellow intern who was a single mom to a 2 year old (her husband couldn't handle having a wife that was "smarter" than he was, so left her when she was in med school). We all tried to pitch in and help her out, but there was no doubt that that doctor mom fully pulled her share. She asked normal favors of us (as all friends would), but never asked for any special considerations because of her situation.

So my first inclination when reading the story was to think "Why couldn't the board give her some extra time to pump during the test? It's a 9 hour test, with only 45 minutes allocated to break time. Surely they could make some accommodation. I mean, this can't be a unique situation." But then I continued reading the article:

...Currier has already received special accommodations under the Americans with Disabilities Act for dyslexia and attention deficit hyperactivity disorder, including being granted permission to take the test over two days instead of one.

In the lawsuit, she was seeking an additional 60-minute break on each day. The board cited the need to be consistent in the amount of time given to doctoral candidates and said other nursing mothers who have taken the exam have found the 45 minutes of permitted break time sufficient. ...

I'm all in favor of her getting accommodations for her dyslexia and ADHD. But it appears that since she'll be taking the test over two days instead of one, then she'll have 4 hours of testing on one day, and 5 hours on another. She still has 45 minutes of break time that she can allocate over that time, to take when she wants. This may not be the extra hour of break time each day that she wants, but it appears on the surface to not interfere too badly with her breast feeding requirement of having to pump or feed every 3 hours. Also:

...The judge said the board offered Currier several special accommodations, including a separate testing room where she could express milk during the test or during break time, and the option to leave the test center to breast-feed during break times. ...

For its part, the USMLE (United States Medical Licensing Examination board) responded publicly on its website to the "Currier question" regarding breastfeeding during exams.

...How have you responded to Sophie Currier’s request for extra time to express milk?
As the papers filed in court show, NBME offered Ms. Currier a variety of comfort measures and personal item exceptions, such as permission to bring multiple, assembled pumps to eliminate the time involved in cleaning, assembling, and disassembling them; permission to pump milk while taking the test and on break time, with privacy within the constraints of exam security, in the individual testing room that she receives on account of her ADA disability. We also provided her with a sample schedule demonstrating how an examinee can flexibly manage the time to take a 20- to 30-minute break every three hours. ...

And I gotta tell ya, that's starting to sound pretty fair to me. But to give myself a little reality check before I ran my mouth off (since I am male, and therefore have never faced such a situation) I bounced this question off of a colleague of mine, herself an MD/PhD, who has small children and has breast fed. After thinking a bit, and without me even telling her the part about her getting to take the test over two days, she felt that the medical board had gone far enough. Indeed, she didn't even think they had to go that far. "Whisper Pump.", she said. To my blank look, she explained that the Whisper Pump is a wearable bra/pump contraption that you can wear while you work. It takes about 5 minutes to rig up, and pumps while you work. So it appears that Dr. Currier might not need any extra time at all in order to take the test and also pump.

I gotta tell ya, it feels a little uncomfortable arguing against someone getting an accommodation they say they need, especially when I have not walked in that person's shoes. But this one doesn't seem to pass the sniff test, and it would appear to me that Dr. Currier would spend her limited time better studying for her exam, rather than talking to her lawyer.

Mostly Good

Well, it's been about two and a half weeks since the kids have gone back to school. We keep waiting for phone calls, frantic notes, or disparaging comments, but haven't had them. We think things are going (mostly) OK.

Buddy Boy starts this year in a self-contained "communications" classroom for about 2/3 of the day, with him going out to "specials" (art, music, computer, Spanish) with his gen-ed peers, accompanied by an aide. This is more time out of the self-contained class than he had last year, and we think this is a good thing. I don't think that inclusion is the end all and be all for everyone, and don't think that Buddy Boy would thrive if he was in the gen-ed class all day at this point. But we do feel that it's a good thing for him to get to know his NT peers (and them him), and to spend some time interacting with them.

His teacher in his communications classroom is one of his former aides from last year, who is now a teacher. She seems fairly eager to try to please us, and appears to be working hard, but it is also apparent that she is in a bit over her head (somewhat disorganized, frazzled at times). But her heart seems to be in the right place, and she seems willing to talk with us on how to improve things, so we're trying not to push too hard (don't want to make her jaded in the first semester on her own).

We have discovered a few problems, like the fact that Buddy Boy was getting 60 minutes of math instruction/week, vs. 300 minutes/week in the gen-ed class. This was totally unacceptable to us, and we're working with his teacher to get it a bit more equitable. Even though we work academics with Buddy Boy on a year round basis, we don't want him set up to fail by not challenging him appropriately academically.

There was also a problem with them reporting that he sometimes did not go to his proper classroom after being dropped off in the morning (all children have to be dropped off at the door-no parents can come inside). We countered (with a letter of support from his pediatrician) that it was unreasonable to expect him to always go directly to his class without getting distracted along the way, and that since we couldn't walk him to his class, they should have someone meet him at the door. They now do.

A more serious problem was when we discovered that they were "not exactly communicating well" with us. Buddy Boy was supposed to (according to a written agreement) supposed to be included for 15 minutes/day in the morning with the gen-ed class with an aide. His papers have been coming home indicating each day that he attended that class and was doing his work OK. It turns out that Buddy Boy told Liz last week that he wasn't going to that class in the morning. When his teacher was asked about this, she said something to the effect of "Well, he wouldn't settle down during that time period, and was disturbing the other kids, so we put him back in the communications room and he did the work there."

ARRRGGGHH!

We can understand that if he's consistently disruptive, and after various strategies have been tried, that it may be determined that it's not the right place for him. We've tried suggesting a later time of the day, but we think that they don't have an aide to accompany him at other times, so this is why they picked first thing in the morning. We've also suggested they give him some time when the other kids aren't in there to just explore the room, but don't think they've done that. We aren't opposed to having them try different strategies, and even understand if he's temporarily removed. But to keep sending home slips saying he's going to the gen-ed class, and not indicating anything wrong, just irks us to no end. And it makes me wonder what else they're not telling us. But since he did mostly well for the second part of last year at this school, and everyone we talk too says he's doing OK, we're just writing it off to a communication breakdown at this point, and not getting into conspiracy theories.

Buddy Boy generally says that he feels good about school. But one thing I have noticed is a little increase in Buddy Boy's stress levels. He's acting out a little aggressively at home (soft head butts, slaps, and threatening language). It's nothing like he used to do, and he immediately reels it in when we call him on it, so I'm not too worried at this point. Everyone's entitled to a little extra stress when they start a new school year, start a new job, or anything else that's generally considered stressful.

Sweet Pea, meanwhile, has had a fantastic start to Kindergarten. She goes to school for the full day, and reports back excitedly each day what she's done, as well as who did what in school.

So all in all, I think things are going to be OK. We're going to keep a close eye on things, but as long as the teachers are willing to work with us, we'll keep working with them.

(Non)Sense and Sensibility

This week, in a move that can only be described as "Out of this world", the lawyer for Lisa Nowak (the former astronaut who stalked and assaulted the girlfriend of a fellow astronaut) is laying the grounds for an insanity defense because she:

...suffered from major depression, obsessive-compulsive disorder, insomnia and "brief psychotic disorder with marked stressors," defense attorney Donald Lykkebak wrote. ...

In the court document, Lykkebak also indicates that Nowak may suffer from Asperger's Disorder. ...

Of course this is not the first time that some form of autism has been linked with criminal behavior. The Virginia shootings a year ago were a classic example. One wonders when "autistic bashing" will fall out of favor, but I guess we should expect it when there is a vocal minority in families affected by autism that uses derogatory language when referring to autistics.


Meanwhile, much more down to earth (in oh so many ways) was a story recounting how a brother of an autistic person and some of his friends just finished roller blading from Florida to Maine in the U.S. (2000 miles/3200 km) to raise funds and awareness about autism. Their group they formed is called "Rolling for Autism".

Dan Tatar (whose brother Ben is autistic) and four friends from Union College in Schenectady, N.Y. made some comments at the finish line of their journey:

..."It's not a disease; it's not an illness. It's something that a lot of people have. They're interesting people; they're great people. The support network of their families and friends is incredible. That's why these people are so successful," he said, as his brother Ben hollered "Yeah!" to the crowd. ...

One of the above stories will be picked up by major news outlets, and the other, while it had significant support from a number of individuals and groups, is likely destined to be seen by a much smaller audience. I encourage all to check out the Rolling for Autism website, and drop them (or your favorite pro-autism group) a donation. Positive voices need to be heard and supported.

Sensory Issues

3 days ago Ang dropped by my blog and commented on my vacation travelogue:

Enjoyed reading about your vacation. We kicked around a Colorado road trip this summer as well, but were concerned about the sensory stuff associated with elevation changes. (Ended up going to St. Louis instead). I'd be interested in knowing if Buddy Boy had any problems? Or does he generally not have sensory issues anyway?

I almost replied that "No, Buddy Boy doesn's have any sensory issues." Then after a bit I thought, well no, he doesn't really have any sensory issues, if you don't count things like when he orders grits and sausage (one of the few restaurant foods he'll eat) the grits have to be the right consistency. Or the fact that when he gets stressed a bit, he reverts to chewing on things (something that he doesn't do nearly as much as he used to. Or that the sun bothers him when it's too bright, the music's too loud when he doesn't like it, too soft when he does, and yeah, he's not wild about clearing his ears to equalize at altitude.

But a couple of things stand out. One, that all of these things are worlds easier to manage (both for himself as well as us) than they used to be. And two, that we really don't notice them much anymore. They're just part of who he is, and how he is. And accomodating him and what sensitivities he does have is not that big a deal, and comes naturally.

We plan ahead and let him pick which of his stuffed toys to take with him as a comfort item. I always carry a few extra McDonald's straws in the car (they're thicker and heavier than other restaurant's straws, and hold up better for chewing). His soft sweatshirt jacket is left in the open in the car, so that he can lay on it as need be (or escape under it). Although we give him gum to chew as we climb in the mountains, the first time his ears are about to pop he gets anxious. We've talked about it ahead of time, though, and subsequent times are weathered quite well by him.

So I guess the bottom line is, Buddy Boy is not nearly as sensitive as he used to be, he's gotten better at figuring out ways to help himself and communicating to us how to help him, and we've gotten better at anticipating things that might need amelioration.

So there aren't any issues, after all. I was right to begin with.

Things that bug me

I've talked about how we had a pretty good IEP meeting with the school this year. But there are a few things that still bug me. As these things aren't what I consider the "most important" things, we haven't pushed real hard on them up to this point. But they're still important, so we are still formulating how to go about effecting change over the next year.

The first thing is how Buddy Boy is treated at lunch. Sometimes he doesn't want to eat lunch. He takes an ADHD med to help him concentrate at school (it works reasonably well), but one of its side effects is that it decreases his appetite during the day. Sometimes he's hungry and wants to eat, sometimes he doesn't. We don't care, as Liz always gets a good breakfast in him, and he eats when he gets home (after his med has worn off).

The school, however, has taken to punishing him when he doesn't eat his lunch. If he doesn't eat his lunch, they won't let him go to recess, which is his next thing after lunch. Liz has tried explaining this to them, but they still don't get it. Basically this bothers me on a couple of different fronts. First, he's our kid, not theirs. He's of normal height and weight. There is no medical reason that he needs to eat lunch. And we've told them its OK if he doesn't. But they think that their judgement should supercede ours in this matter. What's up with that? Secondly, we place a high value on recess. We think it helps to have physical exercise, opportunities for social stimulation, and just plain time to wind down in the middle of the day. So withholding recess is (in our minds) withholding a vital part of what we consider therapy and teaching for Buddy Boy.

The next thing is that they don't have anyone walk him from class to class, then "write him up" when he doesn't get to where he's going. I think this is one of those things that comes from assumptions being made because he is very verbal. This last week he got distracted/interested in something outside while transferring from one room to the next. So he left the building. This is the first time he's left the building this year. This, of course, caused a mini-panic at the school, resulting in 6 people going after him, and Buddy Boy initially running from them before returning to the building. For this he got written up and spent the rest of the day doing "independent work", rather than being taught by teachers.

I'm sorry, but easy distractability is part of who Buddy Boy is. And we think it's necessary for the school to make sure that he gets from one room to another. I don't think he's being "bad" when he takes off, and therefore don't think he should be punished when he does. Just becuase he's verbal, doesn't mean his internal regulation is up to snuff when compared to his same aged peers in 1st grade. I think it's something they need to deal with, and not make a discipline issue.

Finally (for now) one thing really bugs me personally. It's something that his school did last year, and continues at his school this year. At every IEP meeting, they ask us what meds Buddy Boy is on. Like it's any of their business. Haven't they heard about patient confidentiality? And what are they doing with that information? The school nurse needs to know what to give him when. Beyond that, they have no need to know anything.

At this year's meeting they asked us what he was on, and I bit my tongue and let Liz respond. One of the meds he's on is Guanfacine. So Liz mentions this, and one of the teachers asks "Isn't that cough medicine?" No, I think. that would be Guaifenesin. Liz justs says no, Guanfacine is a blood pressure medicine that is sometimes used with autisitics.

I'm a doctor. I practice in a field where knowing drugs is central to what I do. These people are teachers. Every time they ask about Buddy Boy's meds I want to say "Why do want this information? And what will you do with it? Can you even interpret it? Because unless you can tell me the mechanism of action of each drug, how it interacts with other drugs, what its alpha and beta half lives are, and volume of distribution, you have absolutely no right to ask that. Because any decision you may make because of your limited knowledge may be totally wrong, and deleterious to my son."

What makes me most upset about the asking about the meds thing is, if they're making like they are knowledgeable about a field that I obviously know they are not, what other things are they equally unknowledgeable about that they think they know?

The Heights We Go To

Photo credit-Bob Reck

In a story out of North Carolina that will sound familiar to all who have lived in suburban America, a local homeowner's association has forbidden an owner to put up a 6 foot fence (which is prohibited under their covenant).

What's unusual (probably not to most reading this list, but in general) is that the reason the homeowners wanted to put up a higher than allowed fence was to keep their young autistic son from eloping from their yard.

This is one of those common problems that we often have to face. In our family, we decided to put dead bolt locks on all of our outside doors (as well as our mudroom door) in order to keep Buddy Boy from eloping when he was younger. This is against our local building code, and if the city catches us, we'll likely be forced to remove them (our local code says that there must be a latch on the inside that can release the lock). While we appreciate that we put ourselves at slightly increased risk of not being able to get out of the house if there is a fire, for us the overwhelming problem was of having our son run out of the house, which unfortunately sits on a relatively busy street. We compensate for the fire scenario by having keys placed up high near the doors.

In the incident in the article:

...Michele and Rene Guyader hoped to build a 6-foot fence to keep their fast-growing boy from falling into a sewage drain hole at the back of their steeply sloping lot. The homeowners association of their Clayton subdivision turned them down. ...

One would think that your neighbors would execute some common sense and sensibility, but unfortunately this is usually in short supply in these local situations. Some of the biggest tyrants are to be found in positions of power in these local homeowners associations.

The homeowners association was asked by a reporter to respond:

Bailey, the architectural review committee member in the Guyaders' neighborhood, said he was not fully aware of the son's condition until contacted by a reporter. He would consider a 4-foot-tall fence, topped with a see-through lattice.

The Guyaders aren't sure yet that will work. They argue an exception to the covenant is warranted because they didn't know of their son's condition before moving into Cobblestone subdivision about a year ago.

I know Buddy Boy would make short work of a "see through lattice" if he really wanted to get over a fence.

"A man's home is his castle" is the old saying. Nowadays, that holds true only if the government doesn't have a tax lien on the house, you've complied with all local building codes, and the increasingly ominous homeowners covenants, which can dictate all sorts of things which you can and can't do to your house, including what color you can paint it. I've never lived in a place where I had to sign one of these things, and I hope to never have to.

I also hope that there will come a time when common sense prevails, and people can make common sense modifications to their own house when they need to for the safety of one of the occoupants.