Mad Science!

No, this isn't about the Geier's, or any other practitioners of scientific hocus pocus.

Mad Science! was the theme for Buddy Boy's birthday party with his classmates (was I only dreaming, or did we really have birthday parties when I was a kid that weren't "themed"-our parents would host them at the house, we'd play some silly games like pin the tail on the donkey or pitching clothespins into milk bottles, have some cake and call it a day).

As readers of this blog will recall, I was just a bit anxious last week that we would have enough kids coming to even have a party. My unspoken fear was that Buddy Boy was being ostracized already as the "odd kid", and that no one wanted to attend his party because of that.

Liz mounted a phone campaign to "follow up" with all of those that hadn't RSVP'd, and we ended up with 12 kids total, out of a possible 20. Certainly a respectable showing (I would have been satisfied with 6-7, including our own 2, so 12 was great). The scientist came in and performed most of the usual type stunts that kids like, while providing some education along the way. Things like demonstrating the amazing water absorbing properties of sodium acrylate (the stuff that's used in disposable diapers), a Tesla generator, how different metals burn with different colors, and (of course) fun with dry ice. All of the kids made their own 'slime', which they got to take home with them.

Instead of gifts, we had each kid bring a book, and then we had a book exchange. It seemed to go over well. One very thoughtful young girl, who admitted that she didn't like bugs at all, brought a book all about bugs that she thought that Buddy Boy would like. He ended up picking a different book, "Diary of a Fly'.

Two hours (three with set up and take down), no major incidents (I don't count the one kid at my end of the table who was eating the cake by putting his face in it-he was being encouraged by some of the other kids), all of the kids seemed to have fun, and Buddy Boy and Sweet Pea both liked it. Not a bad day at all.

Maybe we should sponsor a couple of Mad Science parties for all of the so called "scientists" spouting all sorts of idiocy regarding autism's causes and "cures". It might raise their level of science education.

Veni, Vidi, Villi

I mentioned in my last post that Buddy Boy wanted to go see the Body World exhibit at our local science museum. I've had mixed feelings about this, as this exhibit has been surrounded by some controversy, and from what I had heard it sounded like it was more sensationalistic than educational. But a fair number of people that I know had gone to see it and were favorably impressed, so after talking with Liz and with Buddy Boy we decided to go.

The exhibit, for those that aren't familiar with it, exhibits dissected human bodies posed in various poses. Most of these poses are somewhat artistic or athletic in nature. This type of exhibit has been made possible by a process called plastination that was developed by the founder/owner of Body World, Gunther von Hagens. There are 4 Body World exhibits, which in the US circulate between various science museums. These exhibits have been shown in some art museums in Europe, but in the US they are shown as 'educational' exhibits in science museums. They have made a lot of money for von Hagens, as well as the museums that host the exhibits.

Although the hosting museum did not do anything that I considered exploitave, and had some docents explaining some things in the exhibit, on the whole I was a little bit uncomfortable with it. I suspect my discomfort stemmed from the basic difference in how the bodies were displayed, as compared to my medical dissection classes. When we dissected bodies in school, it was a special class. We were admonished to always respect those who had donated their bodies so that we could gain knowledge, the bodies were always treated respectfully, and when we were finished with them at the end of the term we had a short ceremony in the lab to "thank" them for their contribution to our learning, after which the bodies were taken away for burial.

In contrast, the bodies in Body World are posed, as I stated above. I suppose in some ways this can be justified to illustrate how certain muscles are used in certain ways, but it struck me somehow as being located somewhere between voyeurism and pornography.

That being said, the dissections were all top notch, and there was certainly knowledge to be gained for those who approached it who had not had previous anatomy experience.

As we walked thru the exhibit, Buddy Boy clearly felt that this was my domain. Whenever someone near us would ask a question of someone near them, Buddy Boy would interject "You should ask my dad, he's a doctor!" I just smiled and kept walking.

There was one great "That's my boy!" moment during our walk thru. At one point there was a docent talking about structures that he pointed to on a coronal section of a person's abdominal region (kind of a one inch thick human CT scan). While pointing to the intestines he stated that a particular structure he was pointing to was very important to digestion, and before he could ask anyone to identify it Buddy Boy piped up "It's the villi!". The man looked up at Buddy Boy, smiled, and asked him if he knew why they were important. That was all the encouragement Buddy Boy needed.

Buddy Boy proceeded to explain that it was in the villi that all the important nutrients were absorbed, which then went into the bloodstream, and were subsequently carried throughout the body where they were needed. The docent put down the section, smiled, and said "I think that pretty much covers it". The six or seven people standing around him just looked at Buddy Boy in awe. I must admit that I was impressed that Buddy Boy had identified the villi from a cross section, though I suppose the hint that the structure was important to digestion helped a lot.

As the years go by, I wonder more what the future holds for Buddy Boy. Right now I'm wondering how to combine anatomy and farming into a viable career.

Birthday Celebration!

Buddy Boy turned 8 this past week. It seems like only yesterday I was holding him moments after he was born.

Next weekend we are having a "kids" birthday party on Sunday, to which we've invited all of his classmates. We haven't had a kids party in a few years, so I don't know if it will come off OK or not. So far, out of a possible 20 kids, we've received 4 'No's', 2 'Yes's', and one verbal yes (from a classmate) without a formal RSVP. I'm praying for a few more 'Yes' responses. Doesn't anyone know what RSVP means anymore????

But that's this coming weekend, and we'll deal with that then.

This past weekend we had our family celebration, which went well. In case you don't remember, Buddy Boy has a thing for farm machines (especially combines), and has narrowed that of late to all things 'John Deere'. Now while we live within easy driving distance of farms, we've never lived anywhere remotely rural. This hasn't stopped Buddy Boy from being fascinated by these machines, and there use in farming.

For Christmas Buddy Boy got (yet another) toy farm machine (A tractor with a sprayor type apparatus on the back), as well as a boxed set of 5 John Deere DVD's (we laughed when we found these-who'd of new they made such things) and the shirt he's wearing in the picture. When asked what kind of theme he wanted for his birthday, farm machines was what he wanted.


Evidently John Deere has a very good marketing department. Because besides the shirt, the toys, and the DVD's, we also found the plastic logo to stick in the cake, as well as John Deere plates and napkins for the cake.

Buddy Boy had a good time. He's been wanting to go to the Science Museum to see the Body World exhibit, and after talking about it between us and with him, we took him. I think I'll save describing that for a separate post. Suffice it to say that it went well, and Buddy Boy had a good time.

After the museum we returned home for Chinese food, presents, and cake and ice cream. One of my brothers lives in town, so he joined us. We all had a good time, and Buddy Boy went to bed with a smile on his face.

I'm still anxious regarding what's going to happen next week (will anyone show up?, will he like the party?, will the other kids like the party?) but as I said, that'll have to wait for now. I'm glad that he'll have some good memories of this birthday, regardless of what happens next week.

Primum non nocere

I was traveling all day yesterday, and didn't go online when I got home. So I missed that the verdict in the Karen McCarron case came in. As most everyone in the world with any connection with autism knows, in May, 2006 Karen McCarron murdered her child Katie by holding a garbage bag over her head until she suffocated and died. Her lawyer had argued that she was not guilty by reason of insanity, but the evidence said otherwise, as she actively tried to cover up her crime.

Karen McCarron was a doctor. A person who was trained to heal. Since at least the late 19th century, the phrase "primum non nocere" (First, do no harm) has been a common medical aphorism. The admonition is to make doctors stop and consider any harmful effects their treatment might have, and make sure that the potential beneficial effects outweigh the bad.

The last time I checked, murder was not considered a viable treatment option for anything.

The end of the trial brings a conclusion for the rest of the McCarron family who grieve for their lost child, but I am afraid that this is not the end for those who would do harm to those who are different.

Katie McCarron was loved by many, and murdered by a woman who betrayed the trust that Katie put in her as her mother, a person who was trained to heal, but chose to murder.

There is no joy in the guilty verdict. It will not bring Katie back. But perhaps-perhaps it will give some pause to those who would make videos saying that they have considered killing their offspring. Perhaps it will give some pause to those who concentrate on "getting rid of the autism" instead of loving their child.

Perhaps it will make all of us think differently when we see people disparaged, disowned, and devalued for their differences.

Playing Doctor

photo credit-Brendan Adkins
creative commons license

***Disclaimer-I am not a lawyer, so only a fool would take anything I say as legal advice ***

On a local autism list that I am on, someone wanted to go observe in one of the special ed classrooms, but was told that they couldn't, because it would be a HIPAA violation.

Huh???

It never ceases to amaze me what utter nonsense people will spew at times, especially if it serves to cover their own butt in some way.

HIPAA (for all of those outside the US, and anyone inside that US that has been asleep for the past several years, stands for Health Insurance Portability and Acountability Act. It is a law passed by congress in 1996 in the US that (amongst other things) is supposed to ensure that your private medical information stays private (except from government agencies, anyone doing research, and anyone your insurance company decides to share the info with-but that's a rant for another day).


The practical application of this law is that you have to sign a form at your doctor's office saying that you are aware of your HIPAA rights, you also sign a form for your insurance company waiving those rights (or they won't insure you), and there are extra people employed at all levels of healthcare spending time making sure that people's rights are not violated (proper forms must be filled out, and access to medical records is controlled-while any clerk at the insurance company can see your records, your doctor has to jump thru password protected hoops to prove he qualifies to see them).

The people that are affected by HIPAA are health care practitioners (like doctors, nurses, pharmacists, etc.), health care entities (like hospitals and nursing homes), insurance companies, and any business entity that contracts with either of these (like the cleaning service for a doctor's office). All of those people can get in big trouble if they start selling copies of Britney Spears' hospital records to the National Enquirer. But nowhere in any of the law is a school listed as being under the purview of this law, and I have heard no references in the media of schools and HIPAA violations.

The first question that needs to be answered, is if a school is even a "covered health care entity" under HIPAA. The short answer is probably not, unless the school is billing for the services of its school nurse or transmitting electronic medical records on patients. If the school is not a covered health care entity, then HIPAA only applies to the school nurse, and not to the school as a whole. Since the school nurse shouldn't be walking into classrooms and announcing who has what "disease" or is taking what meds, there should be no conflict from HIPAA in having student's parents coming in to observe in a classroom.

The suggestion that because other special ed students are present in a class, and that other parents might not want you to know their kids are in special ed is also very suspect. All of the kids in school know who is in special ed. Unless the school wishes to provide a separate classroom for every special ed student, it will not be a secret who is in special ed. So allowing parents to observe a class does not violate any confidentiality. Indeed, there is no expectation of total privacy in a public school. If there was, then parents could never go to any school function where they might see other students, such as athletic events, assemblies, or school outings.

There is a federal law that governs confidentiality of school records. It's a law that has been around since the 1970's, and is called the Family Educational Rights and Privacy Act (or FERPA-gotta love those governmental acronyms). According to Wrightslaw.com:

The purposes of FERPA are twofold: to ensure that parents have access to their children's educational records and to protect the privacy rights of parents and children by limiting access to these records without parental consent.

Some schools may fall back on FERPA as the reason that parents are not allowed to observe in class. But even that doesn't have a leg to stand on.

Again, Wrightslaw.com (one of my favorite sites for special education law) addresses this question well, when talking about parental involvement and what the No Child Left Behind act has to say.

Schools that receive Title I funds must meet with parents to develop a parental involvement policy and must distribute the policy to parents and the community. Parents of children who attend Title I schools shall have access to school staff, opportunities to participate in the child's class, and to observe classroom activities. (20 U.S.C. § 6318)

So, to get back to the original point. From what I know and have read regarding HIPAA and FERPA, neither law should preclude or prevent a parent from observing their child in a classroom, or observing a proposed classroom before a child is placed in it. Indeed, the NCLB act mandates parental involvement, and spells out a parent's right to observe classroom activities.

To deny such rights (IMO) means either that people in the school are supremely ignorant, arrogant, or just trying to hide something.

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.