Thursday, December 30, 2010

What's A Mental Disorder? Even Experts Can't Agree

This article is from NPR's “All Things Considered.”
What's A Mental Disorder? Even Experts Can't Agree
by ALIX SPIEGEL

The American Psychiatric Association's Diagnostic and Statistical Manual, or DSM, updated roughly every 15 years, has detailed descriptions of all the mental disorders officially recognized by psychiatry. It's used by psychiatrists, insurance companies, drug researchers, the courts and even schools.

But it's not without controversy: The proposed changes suggested this year have sparked a kind of civil war within psychiatry.

In a small condo on the beach in San Diego lives Allen Frances, who blames himself for what he calls the "Epidemic of Asperger's." Frances edited the last edition of the DSM, and he's also the new DSM's most prominent critic.
As one with a graduate degree in “Rhetoric: Scientific and Technical Communication” I am aware of the complex nature of the DSM editorial process. Though I specialize in language education and autism, I have spent a fair amount of time researching how “autism” is defined by clinicians, researchers, educators, and the general public. There is less consistency than one might imagine.

This NPR report first addresses the perverse incentives some parents encounter in public schools. As Grinker reported in Unstrange Minds, parents do “shop” for diagnoses when they know a child needs additional supports. What the individual diagnosis is matters less to parents than what services are provided by a school.
Surprising Incentives

It's not that Frances doesn't think that Asperger's exists and is a real problem for some people; he does. But he also believes the diagnosis is now radically overused in a way that he and his colleagues never intended. And why, in his view, did Asperger's explode? Primarily, Frances says, because schools created a strange unintentional incentive.

"In order to get specialized services, often one-to-one education, a child must have a diagnosis of Asperger's or some other autistic disorder," he says.

"And so kids who previously might have been considered on the boundary, eccentric, socially shy, but bright and doing well in school would mainstream [into] regular classes," Frances says. "Now if they get the diagnosis of Asperger's disorder, [they] get into a special program where they may get $50,000 a year worth of educational services."
I admit to witnessing this firsthand as an educator and advocate. I have met parents who shopped, taking a child to three or even four clinicians until the “right” diagnosis of “autism spectrum disorder” was finally official. Though it is rare, it does bother me. If two or three psychiatrists or educational psychologists refuse to offer the desired diagnosis, maybe it isn't the right diagnosis. It troubles me that parents in some school districts share lists of the experts most likely to offer an official diagnosis with the least effort.

To combat such diagnoses, the DSM must be precise so it can be universally and rigidly applied during initial screenings. When you offer a broad definition, using criteria such as “social impairment,” each clinician will have a subjective idea of what constitutes an impairment. Qualifiers such as “significant” impairment are no better, since that is also subjective.
"Anticipate the worst. If something can be misused, it will be misused," Frances says. "If diagnosis can lead to overdiagnosis and overtreatment, that will happen. So you need to be very, very cautious in making changes that may open the door for a flood of fad diagnoses."

As far as Frances is concerned, the new DSM is proposing too many diagnoses that are written in too broad a way, meaning that ultimately a huge number of new people will be categorized as mentally ill.
We can only wait until 2013 to know the final DSM criteria for various mental health conditions. At that time, the arguments will become even more heated.
The final draft of the DSM-5 won't be published until 2013. In the meantime, people like Allen Frances will agitate for the number of diagnoses and their scope to be reduced. And the small group of people in charge will face the difficult question of what to put in — and what to leave out.

Monday, December 27, 2010

Holiday Season

My wife an I spent the holiday at home, with one friend, and that was fine with us. We'll likely spend New Year's Eve quietly watching movies, as well. Our ideal holiday, like most days off, is spent quietly with just the two of us. That's about as social as either of us wants to be. I might want out of the house at times, but I don't want to attend social events.

I never enjoyed family gatherings, which are just too loud and too stressful. I want to enjoy a holiday, which means I don't want the stress of people. Yes, Thanksgiving, Christmas, and New Year's Eve are about family, but I can call and e-mail family members. I don't need to be in a crowded house, anxiously waiting for the holiday to end.

Holidays were rarely pleasant as a child. I dreaded them. I still do. The fact we are several thousand miles away from family was somewhat "helpful" over the last five years. It means we can be alone without offending anyone.

I care about my family, but crowding gatherings into a day is too intense.

Saturday, December 18, 2010

Autism and Adults

On one of the many popular autism blogs, the old myth of "no autistic adults" once again made its appearance. The argument is autism is "new" and an "epidemic" — the proof is that there are so few adults with autism receiving services.

Adults don't receive many services. The laws and supports are changing, though. For now, the best census of adults with ASDs was done in the U.K. by the National Health Service.

The autistic adults do exist, they just were not counted in the past. Again, from 2009:

On Sept. 22, England’s National Health Service (NHS) released the first study of autism in the general adult population. The findings confirm the intuitive assumption: that ASD is just as common in adults as it is in children. Researchers at the University of Leicester, working with the NHS Information Center found that roughly 1 in 100 adults are on the spectrum — the same rate found for children in England, Japan, Canada and, for that matter, New Jersey.
Read more: http://www.time.com/time/health/article/0,8599,1927415,00.html#ixzz18WUKidww

From the U.K. report:

A study of rates of autism spectrum disorder among adults suggests that one in every 100 people over the age of 18 has the condition — broadly the same as that cited for children.
The data, collected by the NHS Information Centre, is the first to show how autism affects people over the course of a lifetime, concluding that it is similar across all ages.
People in more than 4,000 households in England were asked a series of questions aimed at assessing their psychiatric health. The results were used to identify adults with an autism spectrum disorder, including Asperger’s syndrome.
The study was funded by the Department of Health. It found that rates of autism were higher among men (1.8 per cent or 1:52) than among women (0.2 per cent). This reflects studies in children, which have shown higher rates among boys (1:48) than girls.
The report also found higher rates of autism among single people, among men with no university degree and among men who rent their homes rather than those in other types of housing. 
Many of these men were previously undiagnosed. 
The last line, most adults went undiagnosed, should not surprise us. Diagnostics changed dramatically within the last 20 years.

Wednesday, December 15, 2010

Reflections on Charted Courses

A simple question as the new year approaches: What path should I take? More importantly, what is best for both my wife and me?

I am out of ideas. The past offers lessons of what I should not do, if I pay attention. But what should I do? In general, I'm just annoyed. I feel like the last 20 years have been wasted, professionally. I'm unemployed and overeducated.

My wife and our "kids" (the cats) deserve so much better than I've been able to deliver.

It seems an inescapable conclusion after 20 years that education is not a field for me, at least not in the humanities. I don't fit politically, philosophically, temperamentally, or in almost any other way within the professions of education. I don't even fit physically or intellectually. I love learning a lot, but that's definitely insufficient in a field dominated more by political views than intellectual curiosity.

They say you should learn from the past. There are many years I dislike and will never clear from my mind. That's one of the problems with the way my brain works: I'm always analyzing the past as I try to consider what paths to take in the future. Learning from the past isn't a bad thing, definitely, but having bits of your brain stuck in the past, replaying it daily, is frustrating.

My decision to move to Minnesota and my years here will be like that. They will be stuck in my mind, haunting me.

The university experience was horrible. Beyond horrible. I should have quit before completing the doctorate and planned a way to leave this place. I hate having a degree from the university, a place I will never, never support in any way. The diploma itself is packed away somewhere where I won't shred it. I literally get physically ill near the main campus. I want to scream at people when I see the university name, logo, or colors.

Just as 2006-10 are stuck in my memories forever, so are the years 1991, 1997-98, and 2002.

The lessons of 1991 are really the lessons of 2006-10, but I didn't pay enough attention. Education, for all the talk about empathy and tolerance, is as traditional and close-minded as can be imagined.

Difference from the orthodoxy is not tolerated or celebrated, an irony not lost on me. Today I was skimming a journal and the articles were celebrating "Activist Learning" and "Rethinking Education" -- but it is the same ideological nonsense year after year after year. It's condescending, the elites telling us how great they are, but when confronted with a genuine difference they cannot adapt. The "different" people, in this version of education, depend on the kindness of the elites who will open our eyes and guide us.

Of course, don't dare require extra effort, understanding, or accommodations. Then, you're simply an annoyance to ignore that doesn't fit their favored causes.

Another conclusion is that what I want is not now, and should never have been, the primary measure of a choice.

My view is that 1997-98 should have taught me that "experts" are dangerous. I'm still trying to repair the damage done by one "Dr." (not a medical doctor, of course) who was supposed to help me address cognitive and learning differences. Instead, his advice was destructive not only to me, but to the person I consider my best friend. Apparently, his view of "normal" was the only one that mattered.

Neurology, psychology, and social sciences have defined "normal" in terms of what they considered ideal: extroverted happy people, with a constant need to express emotions and desires. Anyone not matching this model is somehow defective and incapable of "normal" anything. I believe psychology / psychiatry feed the narcissistic tendencies of too many people. Not only is nothing your fault, but anyone not adoring you and your flaws is to be rejected.

I wonder how many of the academics I know have been told they are great people and should be adored?

So, education is out and I am going to pay attention to what my friends and family suggest. Doing what I want is not a plan, that's a dream. For now, I don't know what is ahead. It's frustrating to lack a sense of direction.

I thought I had a plan in 2010 (writing and more writing) but I also want to earn a living. I want to be employed in some way. Creative writing is my passion, but that's a tough career path without a safety net, like teaching. I can't bear sitting at home, writing for myself, day after day after day, without earning a semi-reasonable income.

The best employer I had was the computing services of a university. I wrote technical manuals, did some programming, and helped faculty with programming tasks. Computing is not like the humanities; you are judged by your technical skills, not your views on philosophy or politics. Technology might be the only reasonable path.

Right now, I only want to get out of the cold and far away from this city. Beyond that, I know I need to come up with something to earn money.

At least this move was good for my wife's career and education. She deserved more.

Monday, December 13, 2010

Struggling to be Positive

This week I will turn 42. And, like too many of my friends and colleagues, I will continue to be underemployed, earning much less than $1000 / month since June.

People have told me, "At least you have a Ph.D." I'm supposed to feed "better" because I've expanded my horizons.

How does that help matters? How does $40,000 in debt help me? My academic "success" hasn't translated into anything. Nothing. Zilch. Zero. Actually, it has resulted in negatives -- lost time, substantial debt, stress, and overall bitterness. What was the point of more than seven years' worth of graduate education?

When I started graduate school, the talk was of the coming wave of retirements in higher education. Some of those retirements did come, but new full-time instructors were not hired. Instead, universities are scaling back where possible.

I don't blame colleges and universities. They need graduate students and I'm sure most educators want to believe education will expand, despite the history of the last half century. Cuts are the norm, not the exception.

So, what's next? I have no idea. What I do know is that I'm tired. I hope I will locate a job. I want a job. But, things are tough right now. It is hard to explain to some employers why someone with a Ph.D. is applying for entry-level jobs. I simply want to earn some money. Not even a "living" so much as enough to help pay some bills.

After the holidays, my wife and I will try to develop a new plan. Never give up, but sometimes you have to change course.

Monday, December 6, 2010

Autism: Researchers, Scientists and Science

Researchers and scientists are human. This means that despite their best efforts, they are shaped by their own biases and experiences. It also means they exist in a world of politics -- from university politics to the politics of professional organizations. And make no mistake about it, government and non-profit organizations make research funding decisions based on politics, as well.

Most scientists and researchers I know were drawn to research for personal reasons. For example, many cancer researchers are motivated because they lost friends or relatives to cancer. The goal is still altruistic, in my opinion, but there is something that nudges each of us interested in research to pursue specific questions.

I do want to clarify that not all researchers are scientists. Researchers in the humanities might borrow terms and techniques from the "hard sciences," but social science and general humanities research is often overtly political. This research is sometimes called "activist scholarship" and the "activist-researcher" declares his or her position and goals.

I am not a scientist; I am a pedagogical researcher. That means I research ways to improve education, from minor changes to new instructional techniques. My emphasis is on language instruction and students with special needs. There is clearly a personal connection, since I have been "disabled" since birth. I don't pretend my research isn't motivated by my experiences and my desire to change language education in our schools. Honestly, I make no claim to "science" -- but I do admit I might be better suited to the hard sciences at times.

I do my best to adhere to research standards, drawing from science. This means one develops a theory, tests it, publishes, and waits for others to retest the theory. I like quantitative data, especially data that are replicable by another researcher.
Scientific method, though a human "creation," is meant to help reduce the effects of personal biases and emotions during research. I have a great deal of "faith" (trust?) in scientific process, while I don't always have faith in how governments, non-profits, and corporations fund research.

Autism research is about as political as research can get. Sadly, no matter how idealistic and pure of heart a scientist or researcher, the funding and promotion of research is controlled by groups with agendas.

If you can't get funding as a researcher, obviously you move to other research topics. It doesn't matter if you're in the hard sciences or humanities, the reality is that you must get funding and you must publish research to be employed. In academia, you have to publish one or two papers a year, appear at conferences, et cetera, or you won't earn tenure. No tenure, no job security.

We should be asking which groups are funding research, supporting journals, and why. It isn't that I don't trust my colleagues -- I do -- but I do worry about a handful of powerful (and apparently obsessed) groups controlling the purse strings directly and indirectly. Something to consider, even if one tries to adhere to the ideal. Someone writes the grant checks or persuades politicians to support specific research priorities.

What If MRI is Right, Dx is Wrong?

I posted a link to this article a few days ago:
In Study, MRI Scan 90% Accurate Identifying Autism
The full story cautions that this is merely one study, but it is interesting. From the story on CNN's website:
Scientists are finding more pieces of the autism puzzle of with the help of MRI scans of brain circuitry, according to a study published Thursday online in the journal Autism Research. 
By scanning the brain for 10 minutes using magnetic resonance imaging, researchers were able to measure six physical differences of microscopic fibers in the brains of 30 males with confirmed high-functioning autism and 30 males without autism.
Here is my question:
What is confirmed high-functioning autism?

HFA is not a standardized diagnosis, as it does not appear in the DSM-IV. It is a subjective diagnosis, and there are constant debates as to what differentiates HFA from Asperger's Syndrome or PDD-NOS. I have even heard discussions claiming it is easy to confuse "moderate" (whatever that means) autism with a "correct" diagnosis of ADD/ADHD with co-morbid conditions.

I have to wonder, what if the MRI is correct when it identifies a specific physical form of autism (what we might call a physical expression or manifestation, though I dislike both terms for etiological markers) and the psychological diagnosis is "wrong" by some measure?

We know that one person (take me, for example) screened by different "experts" with different backgrounds can be diagnosed with several different and even conflicting conditions. Even the medical experts make mistakes; it is hard to tell some forms of seizures from migraines, for example. If a patient has a complex history, an accurate diagnosis is a challenge for even the best neurologists.

What if the MRI is more accurate than traditional autism diagnostic instruments? We already know that diagnostic instruments, especially screening questionnaires, are of variable quality. I'm merely wondering, since MRI tests are less variable, less subjective, what if the MRI is accurate and some of the existing diagnoses of test subjects were wrong? (Yes, I know "right/wrong" is a complex argument, as well. I'm trying to stress the subjective vs. objective nature of the MRI.)

I'm not claiming there is nothing special about those subjects the MRI did not identify. What I am suggesting is that the MRI researchers might have stumbled upon one, and only one, unique form of autism we could label as a physical condition of the brain. I'm certain there are other "autisms" to be discovered, as well.

Friday, December 3, 2010

In Study, MRI Scans Detect Autism

In Study, MRI Scan 90% Accurate Identifying Autism

The full story cautions that this is merely one study, but it is interesting. From the story on CNN's website:

Scientists are finding more pieces of the autism puzzle of with the help of MRI scans of brain circuitry, according to a study published Thursday online in the journal Autism Research.

By scanning the brain for 10 minutes using magnetic resonance imaging, researchers were able to measure six physical differences of microscopic fibers in the brains of 30 males with confirmed high-functioning autism and 30 males without autism.

The images of the brains helped researchers correctly identify those with autism with 94 percent accuracy, says Nicholas Lange, an associate professor of psychiatry at Harvard Medical School and one of the study authors.

"No one has measured what we measured," says Lange of the MRI test he and Dr. Janet Lainhart from the University of Utah developed.

While previous studies using different types of scans have been able to identify people with autism, Lange says, "no one has looked at it [the brain] the way we have and no one has gotten these type of results."

Lange is quick to caution that this type of test is not yet ready for prime time. "We do not want to give anyone false hopes that this is ready for the clinic yet. This method, this test, needs to be tried [and confirmed] with many more subjects outside our laboratory," he says. Plus, the research needs to be expanded to many more study participants and tried on younger people with autism and those who are not as high-functioning as the subjects in this first trial.

It is interesting and points to the physical nature of autism, which I consider important. If we can map which areas of the brain are at work (or not at work) in autism, that might help us with everything from therapies to prevention.

Thursday, December 2, 2010

The Skeptical OB: Autism and mother-blame

The Skeptical OB: Autism and mother-blame

It's an interesting read, especially the comments. I'm not going to add much, beyond a simple observation: When people don't trust a medical doctor and Harvard instructor, I'm no longer as stunned as I once was.

It is also clear from the comments that people can get confused when they don't read carefully. A good blog post, if you read it carefully.