Creatively Ironic

My son has to be reminded from time-to-time not to get up and pace the room during school. He maybe does this once every other day or so at home and is often deep in thought about his favorite subjects.

Yesterday, from the back seat of the car he said, "Mom, I've figured out how to pace without leaving my seat".

"How do you do that?" my wife inquired.

"I just move my brain from side-to-side" he explained.

OK - let's see how many "causes" of autism I can think of off the top of my head:

• Autism is linked to couples who have a difficulty conceiving
  
• Autism is linked to children who watch too much TV before the age of 3
  
• Autism is caused by mercury poisoning as a result of vaccines
  
• Autism is linked to "older dads"
  
• Autism is caused by having an "extreme male brain"
  
• Autism is caused by measles virus in the stomach brought on by vaccines
  
• Historical: autism is caused by fairies or gremlins who substitute the normal child with a changeling.
  
• And of course, the grandfather of them all: Autism is caused by "refrigerator mothers".

Wikipedia has a good list of these and a lot more (minus the recent ones)

I like the wikipedia entry for autism. This is from the first paragraph:

Autism is classified as a neurodevelopmental disorder that manifests itself in markedly abnormal social interaction, communication ability, patterns of interests, and patterns of behavior.

This entry also makes a claim about prevalence that I didn't know. Namely, that although autism is four or five more times likely to effect boys than girls, if the autism is severe, then the ratio is more like 1 to 1.

Speaking of prevalence, UPI writer Lidia Wasowicz does a good job talking about the fabled "1-in-166 children with autism" myth:

The ubiquitous one in 166 figure popping up on and off the Internet is the simplified form of six in 1,000, the highest rate studies suggest for the most liberally inclusive category of autism, which encompasses the mildest forms of the condition, scientists say.

I linked to another article on autism by her in an earlier post. The National Institute of Child Health and Human Development (NICHD) estimates more conservatively that the incidence is 1 in 1,000 children.

One would have hoped that new age therapies for autism were fading out in favor of proven ABA methods. Not so for 16 children in Harbin, China according to this article: Beluga whales helping children with autism in China.

Experts said that the sounds by beluga whales can help to treat infantile autism by stimulating thee [sic] children's nerve cells, which will be more effective when the children make direct contacts [sic] with the animals.

Less bad is that the kids are only exposed to these shenanigans for 30 minutes 3 times per week. Still, one could imagine the transportation to the site, washing, waiting, and post therapy routine to consume at least another 1 hour, 3 times per week. That's 4.5 hours of time lost per week. Over the 20 day therapy routine, the child would lose 30 hours of therapy. That's a lost opportunity for more effective intervention.

It's interesting that the article also states that the kids are "given medicine and get other treatment" after the 20 day course. Here's hoping that the "other treatment" is ABA based.

Nothing has been more frightening to us than discovering our daughter missing from our house. This has happened three times in the last 2 years - and no times in the last six months (knock on wood).

The first time happened at a relative's birthday party. It was an evening party and we were sitting by the front door watching her ascend and decend the stairs right in front of our eyes. Other parents started arriving to pick up their children. There were lots of waves and goodbyes. About 5 minutes after we last noticed her, she was gone. A search of the house and under everything yielded no trace. We frantically started searching the neighborhood. After about 10 minutes (seems like an hour) we called 911 and reported her missing. We described her to the police as a 6 year old girl, barefoot, wearing a purple sparkle dress, and carrying a magic wand. At the same time we were leaving the description, a family in a house about 100 yards from the party called 911 and reported her found. The details matched except they reported her as being "about 10". They had heard her come up on to their porch and sit down on the swing outside their door. They opened the door, were a little surprised, and asked if she'd like to come inside and have some cookies and milk. She did. They asked for her phone number and she recited it perfectly - the years of ABA and generalization training really paid off. Unfortunately, we were not at home, so they left a message on our machine.

After the police figured out that they had the right kid, they put us together. She got lots of hugs from a relieved family. We vowed never to let it happen again, but our daughter, though autistic, is a clever little girl and she had been given cookies, milk, and hugs the last time she escaped, so why not try again after the fuss was over ...

Teaching a new skill to an individual with autism requires special attention to how skills are actually learned. This usually starts with a clear functional analysis that breaks the skill into its component parts, and then trains each skill separately- combining them piece-by-piece. Each piece requires a certain fluency (rate per minute and response time per task). Finally skills need to be generalized so that they can be performed across a wide variety of circumstances. This process focuses on the outcomes of the instruction, rather than the so-called "structure of instruction" that is targeted by most classroom instruction.

Even if one follows this process, it is still hard to know if the teaching of the skill is complete. That is, does the learner really have mastery of the new skill. This excellent paper by Michael Fabrizio and Alison Moors explores a concept first proposed by E.C. Haugthon (1980) and later refined by K.R. Johnson and T.V.J. Layng (1992). This breaks up the skills mastery into four parts:

Retention: Learners can remember how to do a skill after a period of time when it was not practiced.
Endurance: Learners can engage in the skill for a long period of time without getting tired.
Stability: Learner can engage in performing the skill even if there is a significant distraction in the enviornment.
Application: Ability to generalize the skill to different environments - even environments that have not been previously taught.

This criteria for skill mastery is summarized by the acronym, RESA.

I thought that the (original) title of the article was pretty funny: "Autistic Council meets in Salt Lake". The readers picked up on it and had a short dialogue as to whether it was funny or not. Since then, the article's title has been changed to: "Autism Council meets in Salt Lake".

This one from CNN-IBN in India is a howler, but true:

Autism is a bit of a difficult disability to detect as it is a hidden disability of sorts.

The second definition in the article may be less linguistically challenged (or maybe I'm just not familiar enough with English spoken in that part of the world), but it strikes me as untrue for autism:

Autistic children have a fascination with language, but they may be unresponsive towards normal teaching methods.

Maybe the writer is thinking of Asperger's. The final definition they list is more along the standard descriptions that one reads and seems to be a paraphrase of the definition found at the Austism Society of America.

It is a developmental disability that typically appears during the first three years of life and affects the normal functioning of the brain. It leads to difficulties in verbal and non-verbal communication and social interactions.

The rest of the article (At airports autism too is a threat!) is fairly interesting- relating an experience that a family had in the airport where the security personnel refused to let their son board the aircraft because they thought he might be a danger to the other passengers. One passage that hit me:

"Our struggle is to integrate my son into the main stream society. We don't want special privilleges, but please do not treat him miserably."

As my daughter and son grow older, I am noticing more and more stares of disapproval. For the most part, I don't mind, but I often have to keep my cool and remind myself that the world of "typicals" is at least as strange as mine.

This comes from the "News Shopper, Charity News" (of all places) in an article titled: "Austim Help for Fathers":

Autism is a life-long disorder and has a dramatic impact on the life of the whole family.

It is interesting that none of these "Autism is"-isms seem to be (exact) repeats or copied from other places.

I mentioned in the previous post that much of the argumentation in the vaccine-cause-for-autism strikes me as pseudoscientific. This is not to say that the research may someday show, conclusively, that vaccines play a role (or even the major role) in the development of autism in a child. However, it is the language used presently in the arguments for this theory that lead me to question it. I often refer to an excellent survey by Lilienfeld, Lynn, and Lohr called "Science and Pseudoscience in Clinical Psychology". It contains some excellent reference articles about trends and problems in Clinical Psychology including a discussion on autism treatment methods. In the Preface of the book, they devote a couple of pages to a definition of pseudoscience. I've used it as my guide many times;

1. An overuse of ad hoc hypotheses designed to immuize claims from falsification
2. Absence of self-correction
3. Evasion of peer review
4. Emphasis on confirmation rather than fefutation
5. Reversed burden of proof
6. Absence of connectivity
7. Overreliance on testimonial and anecdotal evidence
8. Use of obscurantist language
9. Absence of boundry conditions
10. The mantra of holism

The expansion of each point has been thoughtfully reproduced at the Cult Education Forum., which includes a link to the relevant chapter in the book.

There were two articles over the weekend discussing the theory that some cases of autism are caused by vaccines- in particular, the mercury-based preservative used in vaccines called thimerosal. The first story in MedIndia.com called "MMR Vaccination on its way to regain past glory" is a short descripion of how MMR (so-called "triple jab") vaccine rates are up in India. The second article by UPI's Lidia Wasowicz entitled "Ped Med: Seeking Allies in autism fight" is a much more thorough introduction to the political stakes in finding the cause of autism. I tend to agree with the Ms Wasowicz's general conclusion:

While a strong genetic component in autism is now generally accepted, there's no consensus on the non-hereditary contributors to the disorder.

In the past, I've found myself hoping that the vaccine theory would hold up to scientific scrutiny - only to be disappointed, not only by the outcomes of the research, but also the pseudoscientific tendencies of its proponents. I also find that the "hidden Hoard" theory lacks credibility. "Hidden Hoard" holds that autism rates were always high, but underreported, therefore there should be a hidden hoard of autistic individuals who are now adults and receiving services (studies here are also inconclusive).

In my families case, we are 100% hit by the disorder- both kids. My interest in the research is not so much to find out the cause of the disorder for our own case, but to hope there will be prevention in the future so that other children do not suffer from the disorder needlessly.