Wednesday, May 27, 2009

The Statistic

There are times when nothing makes sense. The universe, despite its patterns, seems random, chaotic, and even cruel. Yet, reality simply is. We can study statistics, predict possible outcomes, develop complex models for nearly every contained system… yet on the personal level those models are useless.

We can predict that one person of every thousand contracts a given disease, a numeric formula safely separating the person from the calculation. Risk management, economics, and various sciences step in for the analysis. Everyone involved digests the numbers and accepts them as theoretical models.

Yet the model is meaningless to the statistic… that one person.

Parents hear statistics and worry. Contexts are often missing, especially comparison to other statistics. How dangerous is something, really, when compared to other risks?

We know travel by car is very dangerous, but it is familiar. We worry about the unusual, the strange.

In 2004, 27 children died in cribs according to the U.S. National Center for Health Statistics. That's it... 27. By comparison, 6047 people died that year trying to cross the street. Yet, we worry a lot more about cribs than street crossings.

Two years ago, six children were harmed by swimming pool filtration systems. One was fatal, sadly, at a Minnesota country club. Now, we have state and federal regulations covering filtration system inspections.

What does this have to do with autism?

Statistics and anecdotes compete for the attention of parents. Statistics and risk analysis might indicate one thing, as measured and tested by scientists and researchers, but parents hear and read personal stories. These stories matter more.

In fact, I've read numerous studies that show people who read a personal story simply cannot relate to the statistics afterwards. You read about a child's negative reaction to a treatment, a vaccine, an over-the-counter medication, an educational strategy, and you remember that negative story. Negatives are far, far more memorable. Recalling negatives helps a species survive -- we evolved to be cautious.

Personal stories affect us. Statistics don't. That's why horror stories about dangerous cribs, swimming pool filters, and even exploding cell phones scare us. We remember those stories, especially if we lack enough positive offsets. Because we don't have an accident every time we ride in the car, we rationalize the risks. We understand driving does not always equal death. But, how familiar are we with vaccines? We don't get them every day. How familiar are we with special diets? Hyperbolic chambers?

The unfamiliar is hard to understand -- even with statistical analysis.

No matter how many numbers I cite, no matter how scientifically and statistically valid the results, what matters to a parent is what he or she has read, seen, or heard anecdotally. The people they meet, the other parents they talk to, the conference gatherings, all matter more
than any statistics. It's human -- lot logical, but human.

And, even with statistics, that one person who does react to a "statistically safe" treatment, medication, etc., won't care about the statistics. We want "safe" to mean "0.0% risk" and that's simply not possible. So the one injury, the one horror story, matters.

I worry about tornadoes. I know that statistically, the last deadly and destructive tornado where I live was nearly 20 years ago. I still worry. It's not logical, as least not statistically, but tell that to the families affected by a storm. They aren't mere statistics.

We try to avoid risks. Curiously, we don't always avoid the statistically significant risks. We avoid those risks that scare us the most.

Monday, May 25, 2009

Sore, exhausted, trapped

I have been very sore and sensitive for the last few weeks. My back, legs, and hands ache. Unfortunately, this drains me of any ability to deal with things I dislike.

Trying to start a cultivator, also known as a tiller, I yanked too hard just as the starting cable seized. This pulled my shoulder, ripped skin from my middle finger, and caused a shooting back spasm. I was already tense and unhappy with progress on the house, so this left me even more tense, more anxious, about the yard and house.

I don't like where we live. I hate being semi-urban, living within Minneapolis. The disorder of urban life is hard on my senses, as it is. The fact our yard is yet one more thing that's disgustingly incomplete annoys me.

We've already made plans to have the garage painted. The crew will prep it, let us repair some of the wood, and then it will be painted white. I am at least glad it is one less thing we will need to do. I hate seeing the peeling paint, rotted wood, split planks, and other issues around the garage. Having it painted will be a good thing.

The yard has to be done this summer so we can sell the house and escape the city next year. While I am hoping to land a professorship or other position in the West, if we're stuck in Minnesota we still must sell this house. I cannot stand the location at all and it's affecting me very negatively. I hate thinking about where we live, day after day.

The city is dirty. It's horrible during the winter and the months of either side of winter. In summer, the trees form a tunnel I dislike. Coupled with the cars on either side of the road and you end up with streets too narrow for more than one car, making driving a matter of negotiating with oncoming traffic.

There are many, many things I am sensitive to in the city. The narrow streets. The potholes. The dirt and filth. The unkempt yards, and houses in need of repairs. The traffic signals and stop signs are irregularly spaced, often with no apparent logic to traffic flow. It's noisy most mornings, with buses and city trucks. I hate feeling trapped. Tall buildings. Sirens. Crowds. I want silence.

The last two weekends we have went to parks. I like the parks, even if I ma having trouble walking. I like to be away from the sense of being in a city. We went to the Minnesota Arboretum, more than 1000 acres of plants and wildlife. We saw cute little animals, birds, and plants. The tram was too crowded, and left me very tense, but walking along trails with just the two of us was nice. Much nicer. I need that calm. I really love the water features, from fountains to small lakes. Anything calming is better than the city.

So, the house must be done. And yet, working on the house ends up painful. Very painful. I resent the pain. It reduces my ability to block out thoughts of where I am. The pain is one too many things.

Cities are horrible, crowded, noisy places. It takes energy for me to face the city. A lot of energy. I don't have that energy when I am in pain. I'm exhausted and the one place that should be relaxing -- home -- makes me even more tense. I hate this house. I despise it. Yet, ironically, improving it is necessary to get rid of it.

My left hand stings where the skin is missing. My back is so sore, I can barely sit up to type this.

I need to be in a suburb, with space around me. I need some distance from other people. Even inside the house, I can't stop thinking about what is outside. I can't stop seeing all the problems with the house. I just want to be somewhere else. The sooner, the better. I need to get a job elsewhere. All this work for a Ph.D better pay off with something better than living like this.

Thursday, May 21, 2009

Another Step

Tonight, slightly after midnight, I e-mailed a second draft of my dissertation prospectus to my academic adviser. It was shy of 20K words, about 40 single-spaced pages.

It has been a long journey, certainly. The prelims, the oral exam, and now the dissertation. I won't make my goal of having the doctorate before 40 -- I'm already there -- but I will have it at 41. I guess that's not too bad, all things considered. There were several tangential journeys along the way.

Maybe it is too early, but I am wondering what might be next.

Uncertainty is uncomfortable. I like routines. School was a routine. Teaching was a routine.

Now what?

There's the job hunt. There's the prospect of moving. There's uncertainty. In academia, if that's where I remain, there's the stress of trying to earn tenure. Anxiety.

But, at least I proved I can do it. I survived a graduate program. Now, to get the dissertation done, defended, and those letters Ph.D after my name. Then I can really worry about change.

Thursday, May 14, 2009

College and Realistic Goals

I often speak on post-secondary education and students with special needs.

Every student I have met has "special needs" and quirks. Every human has limitations. Therefore, I have been stunned lately to hear and read advocates suggesting students with autism disorders or similar limitations can "do anything they want." No one can do "anything" simply because he or she wants.

Our personalities and physical traits do set some limits.

So, while I believe that most students can master a great many things — the key being practice and dedication (genius is effort) — there are some obstacles we cannot remove.

Reading some recent blogs and articles, I was troubled by how many think students should receive special accommodations, even waivers of some admissions requirements. One advocate even argued that a student with severe dyslexia and autistic traits should be able to become an air traffic controller. Wow. Hello? Reality? I admit it... no one would want me trying to track a hundred planes in the air.

I do believe we should accommodate students within reason. The problem is agreeing on what is reasonable.

We need to admit that some disabilities eliminate certain jobs from consideration. There might be exceptions, but in general, physical limitations can be dangerous in some professions. The courts have recognized this, as well. In one case, the courts ruled that a deaf nursing student could not hear and respond to machine alerts. The risk to patients precluded the student from completing the program.

Beyond the idealism of preparing "better citizens" and life-long learners, the reality is that post-secondary education is career preparation. I cannot, in good conscience, claim that a student unable to work under pressure is going to be able to handle some professions.

I had a student claim that it wasn't fair to give a future engineer a timed test. Sorry, but even engineers can face extreme pressures. Not only are there deadlines, but some engineers do deal with matters of life and death. Structural engineers might be contacted following a disaster, emergency personnel needing to plan safe evacuations. It's an extreme example, but realistic.

I don't care what profession you pursue, there will be deadlines. There will be pressures. There will be a need to communicate with others. Even as a freelance writer, I have to communicate with people. Only a handful of professions exist without the need to navigate socially.

The point of this rambling: we need to tell students with disabilities that the world is, yes, a demanding place. You need to set realistic goals, even during your university studies. Take a path that suits your personality, your skills, and your limitations.

I actually had an autistic individual tell me he wanted to study aeronautical engineering and be a recreational pilot. His argument was that no one else would be a risk. (Completely false, unless you never fly near humans.) Nothing personal, but if you are "non-verbal" under stress, studying general aviation is not something I can support. I know that's tough. Safety first.

There's nothing wrong with being a great designer of aircraft but not getting to pilot them. I doubt most aeronautical engineers are pilots. (I forget the term, but think it's "general aviation" or something similar.)

The blunt truth is there are many things I could not do. So what? Everyone has limits. It just means my opportunities are elsewhere.

While I haven't expressed this well, I am hoping my intent is clear: be realistic and consider the future. There are a lot of career paths, so there is always something appropriate for a good student. Once you realize you might have to shift some goals and priorities, success in college is a lot easier to achieve.

Knowing your limitations is not a bad thing — it's complementary to knowing your strengths!

Thursday, May 7, 2009

Increasing Rates in California

From the San Jose Mercury News:

Autism in California increases twelvefold

By Sandy Kleffman
Updated: 05/06/2009 08:12:02 PM PDT

California saw a twelvefold increase during the past two decades in the number of autistic people who are receiving services through regional centers, a new state study reveals.

Notice this is the number of people receiving services. This may or may not reflect an increase in autism diagnoses, a decrease in social stigma, or other factors. Also, in a slower economy, more people seek public assistance.

From 1987 to 2007, the number of children and adults with autism served by regional centers rose from 2,701 to 34,656, notes a study released this week by the state Department of Developmental Services.

This is a huge increase, but I would like to know the percentage increase. I realize that California did not double in population, so no matter what this is an exponential increase in autism services. Still, will read the full report to compare percentage increases to those in other states. The differences in service rates should be interesting to analyze.

The article does indicate only the most disabling forms of autism were counted. This means that the increase is not reflective of the surge in Asperger's diagnoses.

The statistics include only people who are receiving services through regional centers, which represents about 75 to 80 percent of the autistic population, the study estimates.

The numbers also include only those with classic autism. For the most part, people with other autistic spectrum disorders, including Asperger's syndrome and Rett's Disorder, are excluded from the statistics

Sunday, May 3, 2009

Genes and Autism

This is from an interview conducted May 1 with researcher Hakon Hakonarson, the lead researcher on an autism genetic database analysis conducted by Children's Hospital of Philadelphia.

Question: Could any of these genetic differences be identified in utero?

Response: Yes, all of them could be tested in utero; we have identified 10 new variations (9 rare and 1 common) and we have replicated (and confired) four other once that were previously published (neurexin 1, contactin 4, 15q11 and 22q11). However, we do not have a yes or no answer as to whether the fetus will be autistic -- but if we are testing a fetus in an autistic family the value of the test is much higher.

I know something more should be said, but I'm not sure what.

We know that autism is a set of symptoms, without a clear etiology. But, this genetic finding certainly brings us closer to understanding some of the symptoms consistent with the DSM-IV criteria for autism disorders. Experiments on mice reveal that disabling these genes results in social withdrawal, repetitive behavior, and nervousness.

We now need to study the mechanism by which this genetic variant leads to disruption in the connection between brain cells (mostly prominent in the frontal and temporal part of the brain where the CHD10 gene is expressed).

So, we turn off a gene and the mouse (or person) suddenly matches the diagnoses for autism. The personality is affected by at least 15 protein trios in the case of most people with autism. Different trio flips results in slightly different expressions of autism. (The worst condition is probably Rhett Syndrome, and we have identified its genetic cause with some precision.)

If a personality is genetically predisposed, what does that mean? Are there aspects of ourselves we cannot control? It often appears that way thanks to neurology and genetics. I usually hope the genes are only half of who we are. Maybe they are slightly more. I hope they aren't a lot more than that.