The presents or presence of a Theory of Mind

During my years as a Ph.D. student I have been reading (and writing) about Theory of Mind, aka the ability to attribute mental states (desires, beliefs and feelings) to oneself and others, an ability which seems to be lacking in many children with autism spectrum disorders. I'm not a huge fan of the Theory of Mind concept, as it is ill defined and ever expanding. In addition, many of the so called Theory of Mind tasks seem to hinge on language abilities as much as a Theory of Mind. And although there have been some successes to test Theory of Mind abilities in apes, Theory of Mind and language seem connected on many levels.

But this week I saw the rudimentary workings of the infamous Theory of Mind in my eldest son Lucas (3 yrs). He knows his birthday is coming up in about two months, and his little brother will have his a mere three days later. But way before that, my husband will turn.... well, that isn't really important for this story. So, I asked Lucas what he thought his dad would like to get as a present. He came up with.... a frog. Yes, a frog. No, no clue. My husband is not particularly interested in frogs, we don't keep any frogs or plan to do so in the near future, and Lucas has never displayed an avid interest in them either. So, to understand his trail of thought, I asked whether he could come up with another present. Some serious thinking happened, after which he was absolutely sure of the complete and utter bliss of his dad  if he got some bones. But not just any bones, T-rex bones. No question marks about the nature of that idea, since Lucas is very interested into that himself. But he didn't take another round of questioning as his final resolve was a bunch of flowers. Typical male instinct kicking in there, probably.

So how does this prove his developing Theory of Mind? It doesn't. But you know what, even I am unable to come up with a decent idea for my husband. So, instead we contemplated presents for his baby brother Kwint. And it didn't take Lucas long to come up with two ideas: penguins and cars. Spot on, and to his credit, Lucas does like penguins, but it's Kwint who's seriously obsessed with them. So, there you have it, Lucas has a Theory of Mind, and a diagnosis of autism is getting more unlikely every day. 

Kwint, on the other hand, is a different story. At a regular visit to the pediatrician (the American consultatiebureau), some eyebrows were raised on the subject of him not using the pronouns 'I' or 'me'. Never mind the pediatrician used a schedule for children aged 2, or the fact that Kwint is having to cope with the challenge of being raised bilingual, or even the fact that he does say words as 'mine' and doesn't meet any other criteria that would merit concerns for a possible developmental disorder. She offered us the opportunity to fill out a huge questionnaire which would be checked by specialists to see if there would be any reason for further checkups. We respectfully declined and went home only to find that the Dutch Van Wiechenschema (used at the Dutch consultatiebureau) considers it a skill for 2,5 year-olds. There still is time...

In my world, everyone's a pony and they all eat rainbows and poop butterflies!

(title comes from Dr. Seuss of course)

While I was attending a journalism class during my Ph.D. years, we had these assignments in which we had to translate scientific research into articles for magazines. It was one of the only classes I actually wanted to take, although the choice is made much easier when you have to choose between journalism and 'ethical questions in your research'.

I had fun, although I doubt my teacher approved of the subjects of my writings. One of the most interesting subjects I chose to write about was a study on the relationship between a parasitic infection (Toxoplasmosis Gondii; TG) and schizophrenia*. To summarize, rats are prone to TG. When infected, they become these kamikaze-creatures with a craving for hugging cats. This is great news for TG, because they can only reproduce in the bowels of cats. To make a long story short, rat eat TG, cat eat rat, cat scratch man or man eats cat (depending on the country you live in), man becomes schizophrenic.You still with me?

Now this is all fine and dandy, but we want scientific proof, right? So enter Professor Jaroslav Flegr, who found significant behavioral changes in humans as a consequence of infection with TG. Apparently, women become polygamous with a craving to spend money, whereas an infection in men leads to an increase in aggressive, jealous behavior. Great combination, which would fit neatly in the kamikaze theory I think. How this would be connected to schizophrenia is not clear though.

More 'clear cut' evidence for a link is the finding that schizophrenic people more often hug with cats compared to non schizophrenic people (54 to 42 percent). Although you could argue that the fondness for cat-hugging resulted in schizophrenia for the cat-hugging people, I could easily counter that by claiming that schizophrenic people might feel a fondness for cats precisely because they can relate to the whimsical (schizophrenic) behavior of their pet-of-choice. It's the ancient question of chicken and egg, converted to cat-hugging and schizophrenia.

A final piece of evidence comes from Dr. Torrey, an American psychiatrist and great supporter of the TG-schizophrenia link. He treated infected rats with two types of medicine: medicine against TG, and anti-schizophrenic medicine. Both treatments seemed to cure the rats from their kamikaze-behavior, but the anti-schizophrenic medicine was more effective.


So although your next step might be to dump your cat, you might want to consider the fact that infection with TG is much more likely when eating rare meat.


To end in style with another quote from Dr. Seuss:
"Be who you are and say what you feel, because those who mind don't matter, and those who matter don't mind."
(And I am sure you did get the pun of Dr. Seuss? No? The Cat in the Hat? No? Well, then you are beyond my help)

*It maybe of interest to mention that a similar relationship has been claimed between TG and autism.

A day in L.A.

As I might have mentioned before, I have been planning a trip to L.A. in order to attend a workshop on the Autism Diagnostic Observation Schedule (ADOS). And I have been there! And came back! The summary of my trip? I met a lot of interesting people, I learned a lot, I saw a lot, and waited even more.

For those of you more interested in a more in-depth analysis here it comes:

Interesting people:

There were people from all around, including Japan. This turned out to be very unfortunate since the news of the earthquake and subsequent tsunami hit us on the second day of the workshop. Although definitely not comparable to the disaster in Japan, the coastal area of California (where we live) also got a warning sign because of the tsunami. But fortunately the effect of the tsunami was negligible in the Bay area.

At the workshop, I've talked to several people, all of whom had interesting stories. Of course most people were working in the field of autism, so it was not difficult to find some common ground. In addition I sorta 'met' two children, who were part of the live demonstration of the ADOS. Isn't it amazing that the kids got up on stage in order to be assessed with the ADOS in front of a hundred people? Even more so when you think that there were quite a few people in the audience who declined the opportunity to talk into the microphone.  Really! I'm not kidding. They were afraid to talk into the microphone to discuss their ideas and passed it to someone next to them who did not show microphonebia.

Things I've learned:

I am now familiar with the ADOS. It has to be said that it is an amazing instrument with a lot of potential. But it is also very difficult to score it in a reliable fashion. The ADOS consists of semi-structured tasks that try to provoke a certain type of social or communicative behavior in a semi-natural way. Although it has specific tasks, you don't actually score the actual performance on these tasks, but score the overall behavior you saw during the session. This has many advantages, but it means it's also difficult to asses whether some type of behavior was good enough to give full credit. Since the main difficulty of the instrument lies in its scoring, most of the workshop was dedicated to discussion on the scoring of the live demonstrations. As stated, we had to discuss our findings within the group. Yes, with the microphone. In addition to my new DSM classification of microphonebia, I also found out that people see very different things even when they are looking at the same thing. It wasn't just differences in opinion concerning the label of 'slightly unusual behavior' and 'normal behavior', scoring went from 'normal behavior' to 'downright off-the-wall behavior'. Especially when we got to talking about stereotyped behavior and specific interests, people differed in their observations and interpretations. The interesting thing was, once somebody saw one particular behavior that was considered to be stereotyped, other people joined with other examples and so the list got longer and longer. So the main thing I've learned concerning the ADOS, it requires a lot of practice. Not to administer it, but to score it.

Another important thing I've learned: remember your room number when you stay in a hotel.

Things I saw:

(not uncommon) psychologists playing a game on their iPhone or Smart phone during the workshop. Makes you wonder whether they do the same during a psychological assessment or interview with parents...

L.A. by night on a tour bus. This was a lot of fun, especially since some other people from the workshop also got on the same tour. We've seen it all. Well, ok, technically we mainly saw Hollywood. But that was amazing. Film sets, Universal City, the Chinese theatre (with the hand prints), the place where the Oscars are being held, the walk of fame (with the stars), you name it. Oh and we've seen 'tha ghetto' although that was not in the original itinerary. During our ride back to the hotel, we found ourselves in the midst of a huge traffic accident and we had to find an exit. This exit consisted of our tour bus going from the far left lane to the outer right lane in the midst of all the confusion (yes we had close calls), and exiting straight into the ghetto. Not that we saw scary things or anything.

Things I waited for:

Not for the food. Boy, they serve things quickly around here. But I did wait for airplanes, checks, lectures, breaks, toilet visits (there were about a hundred people visiting a social oriented workshop, you guess which line was longest, the boy's or the girl's...).

Featuring Lucas' talk. He's getting the hang of this English thing, and the translation of it:

Dad (to Kwint): "Nee, dat mag niet."

Lucas: "nee is no he? NO!"

Lucas: "Flyyyyyyy!"

Lucas: "wiels of de bus go wound en wound... up en down"

Lucas: "Mama, kijk! Mommy, look!"

Lucas (hoort een slaapmuziekje op de radio): "Sleep, sleep!"

Mama: "Kijk Lucas, dat zijn twee auto's. Two cars."

Lucas: "Dat is een twocar he?"

And funny Dutch things:

Lucas: "Mama, waar is de radido?"

Lucas: "Ik wil graag naar papa toe."

Weapons of mass-paranoia

Many people still believe there is some truth to the 'vaccination leads to autism' idea. Why? Because some researchers claim to have found evidence supporting such a link. Enter Mr. Wakefield, who conducted one of the major studies into this area, and who published an important paper on a direct link between MMR vaccination (against measles, mumps, and rubella) and autism. However, whereas he was famous for his scientific results, he's now famous for something else altogether. His paper on the link between MMR vaccination and autism has been retracted, and Mr. Wakefield has been stripped of his medical license. Apparently, he had failed to disclose the fact that he was being paid by a law firm seeking to sue vaccine manufacturers. Moreover, he has not been able to reproduce the results. The most recent news in this whole ugly mess is being published by the British medical journal BMJ, who claim that Wakefield has falsified the actual data of the original study. Disclaimer: no proof there yet.

I know for a fact that the stories around vaccination have given rise to concern in parents of children with developmental disorders. Both during my time as a researcher and during my job as a psychologist, parents have questioned me about the possibility of vaccination as the cause of their child's problems. In addition, I also heard parents mentioning that their child's autistic symptoms started around the time of the vaccination (which also happens to be around the time that major milestones in the area of language, motor skills and cognition take place). Now, IF there is clear evidence that vaccination can result in autistic symptoms, I agree that we would have to think about our vaccination program. However, we should also be aware that the consequences of non-vaccination could result in higher rates of complications or even child-morbidity.

The idea of a link seems to stick in our heads, regardless of scientific evidence to the contrary. While googling I found that 48 percent of American people participating in the Harris interactive/health day poll either believes that there is truth in a link between vaccination and autism, or is not sure. What's more staggering is that this poll has been conducted AFTER the Wakefield paper had been retracted. Only half of the people participating in the poll actually heard about the paper being retracted, while almost everyone knew about the initial results. The combination between the unlimited access we have to all kinds of information (without necessarily being able to appreciate the value and truth of it) and the preference of the media to pick up on spectacular results proves to be a dangerous one.

As far as I know, there is no convincing evidence supporting a claim between vaccination and autism. In fact, the prevalence of autism in Japan seems to increase, in spite of the fact that they discontinued their MMR vaccinations. There is also counter-evidence against a link between autism and Thimerosal (a mercury based preservative often added to vaccines). Children who were exposed to Thimerosal, either in infancy or intrauterine did not show a higher prevalence of autism compared to children who were not exposed to Thimerosal.

So yes, I give my children their shots. Although I must admit there is a flicker of doubt when our doctor wants to give my eldest son extra shots for diseases that are common in the USA. That does not make me a bad researcher, a paranoid or a gullible person. It just makes me a mom who loves her children more than anything in the world.