On Frustration

Throughout my clinical career, there have been a number of things which I've very much wanted to say, but haven't for a variety of reasons. These range from me being generally too polite to actually say them to me believing that doing so would be counterproductive.

For a variety of reasons, this post has been backdated. I won't say when -- or where -- I wanted to say these things, although I will elaborate (somewhat) on the contexts if asked. I also will freely edit this post to add additional unsaid comments as they occur -- and will not remark on my so doing. I won't necessarily add them to the end of the lists, either.

For the most part, all of this is to prevent these comments being tied to any given workplace or person. Given the nature of some of these, they could damage the reputations or careers of the people involved, and that is not my intention. It is, however, my intention to highlight some of the things that go on in the clinical field... and why I greatly prefer academia.

To professionals:

• If I'm implementing an extinction program, please don't undermine my efforts and reinforce an extinction burst.
• This goes double if the program is for aggression. Do you think it's easy to not react when a child is hitting you? Those punches can hurt.
• Damnit, when a child hits a teacher, the correct response is emphatically not to give the child cake!
• For the love of God, lady, how the Hell did you manage to pass the BCaBA exam without knowing what extinction is?
• Lady, I read the clinical research for fun. If I'm doing something you don't understand, just ask me. I'd be more than happy to explain. If you just interrupt, undermine my efforts, and then blame me when things get worse, it really isn't going to help my opinion of you or of your professional conduct.
• If you have a behavior plan to work on, please don't work on it in the classroom while the kids are just sitting there, bored. It's not only unprofessional, it's actively against the best interests of the children. This goes double if the plan isn't even for one of the kids in the classroom.
• If you work two full-time jobs which involve acting as caretaker of a mix of autistic children and adults, I am bloody well going to assume that you know what autistic literalism is. I am also going to assume that you know what autism is. Proving these assumptions wrong is not a good way to impress me with your professionalism.
• I attempt to hold myself to very high standards of both professionalism and compotence. However, I also expect certain minimum standards of these from my colleagues. If you are working as a behavior therapist, this means that I expect you to know what certain basic concepts -- like "extinction" and "reinforcement" -- are, and I do not expect you to attempt to ridicule me for using these terms.
• I had more than enough bigotry and ridicule during my secondary education, thank you very much.
• Anti-autistic bigotry and ridicule of autistic difficulties have no place whatsoever in a special education environment. Yes, I very much will complain to our boss about these things if you engage in them.
• Lady, I'm autistic -- with all that implies. I flat-out told you that well before I ever started to work with you. If you don't understand what that means, you have no business working in a school for autistic children. You have less business trying to teach them.
• If you need something, bloody tell me. I'm not necessarily going to pick up on it intuitively.
• If a child has been warehoused -- and probably abused -- for half of her life, chances are that institutional damage is a factor. More than a little sympathy and kindness is called for.
• Please stop talking in front of the children as if they weren't there.
• Your bigoted rant is making me physically ill. The fact that it is being made in front of the children is not a redeeming factor.
• ... you have two autistic sisters, work in the field, and can't deal with autistic literalism?
• "Personal style" is valid, to a point, but developing a true personal style does not consist of taking pieces and aspects of flawed therapies and methods and merging them into a personally-appealing whole. It consists of finding a way to operate within guidelines and boundaries of best practices that you are capable of and comfortable with.
  

To parents:

• If your son has stomach problems which have required him to be hospitalized in the past, and the hospital found a series of massive cysts in his stomach... please take him to a real doctor and not some natropath. I very much do not enjoy the way he screams in pain while clutching his stomach during lunch. I also very much do not enjoy trying to teach children who are in considerable pain, and I know exactly how much even a minor stomach lesion can hurt.
• (In regards to the previous) No, I do not think that some "all-natural" digestive enzymes will solve the problem.
• Lady, your nineteen-year-old starting to show an interest in pictures of scantily-clothed women is not a sign of precocious puberty or overly high testosterone levels... and certainly not a medical indication that he should be chemically castrated by the Geiers!
• (Smiling) No, I don't think that your child's motor difficulties are "the autism". I think they're a direct result of the megadoses of Vitamin B6 you've been giving him for the last few years.
• When your child starts to exhibit symptoms of acute hypervitaminosis A, you immediately stop all supplementation. You do not just reduce the dose by ten percent or so.
• Please stop feeding your child candy whenever he punches me... or you... or anyone else, for that matter. Do I really need to explain what you're teaching him by doing this?
• No, giving him a toy is not an acceptable substitute!
• Please start showing some common sense. (Over and over again...)
• No, hookworms are not a good thing for a child to have!
• Children coming to school stoned out of their mind tend not to learn much. This is not an autism thing.
• ... let me get this straight. You're doing the body ecology diet and yogurt enemas and yet you think you're not into the woo?

And I could think of plenty more...

The Autism Resource Fair

I just got back from the local autism resource fair. There were quite a few booths there, of wildly divergant quality. I picked up a simply absurd number of fliers, pamphlets, and other miscellaneous items, all of which advertise some service or another.

This was mainly because I went in there looking to get one copy of every flier, brochure, business card, or other miscellaneous promotional item. I'll be spending a long time trying to separate the wheat from the chaff.

Of course, the usual quacks were there. Some were easier to identify than others. At the same time, though, some of the stuff there was pretty darn cool.

That and I may have found a lead or two towards continuing my supervision after my practicum ends.

Research Priorities

There was a recent conversation on the ASAN discussion list about research priorities and the ASAN's policies about supporting (or not supporting) certain lines of research. While I cannot speak for the ASAN as a whole, I can outline my own opinions on the matter.

It is common practice to divide research into so-called "basic research" and "applied research". Simply put, basic research involves finding out what the heck's going on; applied research figures out how to change and/or improve it. Basic research produces knowledge which informs and guides applied research; applied research produces what we commonly refer to as "technology".

For an example, a study that investigates the way autistics learn would be basic research. A study that investigates how to best teach autistic students would be applied research. For obvious reasons, the latter sort of study benefits considerably from the former -- it's far easier to design a teaching method when you understand how your student learns.

Judging the value of applied research is comparatively simple and straightforward. Its value is a function of that which it creates. Research into ways to make autistic children act like neurotypical children, for instance, is highly valued by those who view this as an important treatment goal and actively opposed by many (if not most) of those who do not.

Attempting to judge the value of basic research, however, is notoriously more tricky. Most people, however, judge the value of a concerted effort into investigating a basic research topic as a function of the value (or percieved/expected value) of the applied research that it is expected to inform.

Because of this, you can tell a lot about a person (or an organization) by the areas of research (basic or applied) that they prioritize. Autism Speaks, for instance, funds a lot of research into the genetics of autism. What does this area promise?

Well, given that gene therapy is (at least for now) a pipe dream and the extent to which we (don't) understand the human genome, the main benefit of knowing which genes cause or contribute to autism would be in the area of testing. Simply put, that knowledge would allow us to develop a genetic test.

The primary "advantage" of a genetic test is that it can be done prenatally. Going by historical data on how such information has been used, this means that it will be used to selectively abort fetuses that will develop (or are judged "at risk of developing") into autistic children.

This says quite a bit about Autism Speaks.

As for my own research priorities? I just want more basic research into the ways autistics think and learn. There's a reason why I almost always enjoy Michelle Dawson's papers.

Autistic Pride Day

Today is Autistic Pride Day. Frankly, I hadn't planned to really celebrate it -- I have too much on my plate right now to take time off for something like that.

That said, it's certainly been one for the history books.

I woke up and find news of a new study, one which looks like it may be a breakthrough on par with Pasteur's pitri dish when it comes to the education of autistics.

No, this isn't an understatement.

Of course, "may be" is the operative phrase. All I have so far are the mass-media accounts and the article abstract. While Michelle Dawson, one of the study authors, was kind enough to e-mail me the study earlier this afternoon, I haven't read it yet.

Still, hearing about the paper got me excited enough that I missed my exit on the way to my practicum and barely got there on time. I spent most of the day like this, really -- my autistic forgetfulness (for lack of a better term) comes out more when I'm emotional.

My practicum was interesting, but I've been working with NT kids as of late (the children at Baudhuin have been out since the 5th), so I won't discuss that more.

I also went to Nova's medical library to check out a few books for a lit review assignment I'm working on.

Then I drove back to Weston (making a series of forgetful errors on the way, this time due to issues in my personal life), and spent a while searching for florists with specific (and fairly obscure) knowledge.

When I finally got home, I sent out a few e-mails, read a few news stories, recieved the study I mentioned above shortly thereafter, and started preparing for class. While doing the above, I spent a while playing with a hyperactive boxer (who wouldn't leave me alone otherwise) and comforting a three-legged dog who's terrified of thunderstorms.

And then I had a professionalism and ethics class... intended for behavior analysts. Considering how... off... I think our ethics textbook is (it's a future blog entry whenever I get around to writing it), that about speaks for itself.

And I'll be going to bed shortly since I have to get up early tomorrow. Joy.

And People Forget Bayes Once Again

There's been a lot of psychological research that boils down to one simple statement: people without statistical training don't get Bayes's Theorem... and even people with statistical training tend to ignore its implications in day-to-day life. Put another way, people ignore base-rate data when evaluating probability.

I was reminded rather strongly of this by a comment on Natural Variation. To wit:

"There's probably no genotype that exactly matches what we call autism. But the phenotype is highly heritable, apparently, so in principle it should be possible to find a genotype->phenotype mapping that is more convincing, e.g. 60% matches and 5% false positives. When they come up with a gap of this size, they'll probably start seriously talking about genetic screening."

If we develop a prenatal test that correctly identifies autistic children 60% of the time and delivers a false positive 5% of the time, what are the odds of a foetus developing into an autistic child given that the test returned a positive?

If you ask most people, they'd scratch their heads in confusion. Many would settle on 95%, some would settle on 60%, and a few would answer with a figure slightly over 92% (60% divided by the sum of 60% and 5%, or 60/65).

The actual answer, however, is none of these... for the simple reason that there are a lot more non-autistic children than autistic children. That five percent would be effectively multiplied by all of the non-autistic children it was used to test.

That answer depends highly on prevalance estimates, but let's not go there. For the sake of simplicity, I'm going to use the popularized 1/150 figure. Suffice it to say, however, that the prevalence of autism depends on how you define the word "autism"... and a lot of other things.

This gives us:

• P(A), or the probability of a foetus developing into an autistic child without testing, as 1/150, or about .6%.
• P(A'), or the probability of a foetus developing into a non-autistic child without testing, as 149/150, or about 99.3%.
• P(BA), or the probability of an autistic foetus getting a positive test result, as 60%.
• P(BA'), or the probability of a non-autistic foetus getting a positive test result, as 5%.
• P(B), or the probability of a randomly-selected foetus, autistic or not, getting a positive test result. This can be calculated from the above, as P(BA)P(A)+P(BA')P(A'). Doing the math, this works out to 161/3000, or about 5.37%.

Given that last figure, you should see where this is going.

In the end, the probability of a positive result on the test above correctly indicating an autistic child is a spectacular 12/161... or about 7.5%. The other 92.5% of the time... the test would be indicating that a non-autistic child is autistic.

Mass Media Stupidity

I recently came across a particularly appalling example of poor journalism from the New York Daily News. I was utterly shocked... and that's saying something.

Forget issues of correlation and causation. Forget a lack of understanding of scientific methodology. Forget not "getting" statistics (and especially the meaning of statistical significance) and hypothesis testing. The media usually screws all of these up, but this one's failure is more basic.

This article is reporting on a CNN piece.

When the news starts reporting what other news services say as the news, you know that it's time to find a new news source.

Hubris Syndrome: The Newest Psychiatric Disorder?

Although it may seem like it at times, not everything I read is about autism. Not all of it is about ABA, either.

Among other things, I at least try to keep up with what the psychiatrists are up to, no matter how crazy I may think they are.

And yes, I think the psychiatric establishment needs its own services. A recent paper published in the prestegious neurology journal Brain helps illustrate why. Coauthored by an American psychiatrist and a member of the UK House of Lords, it sets out to identify and provide case studies of a "new" mental disorder for potential inclusion in the DSM-V and the ICD-10.

The paper's title? "Hubris syndrome: An acquired personality disorder? A study of US Presidents and UK Prime Ministers over the last 100 years."

To quote the paper: "But the matter can be formulated differently so that it becomes appropriate to think of hubris in medical terms."

... yeah.

The proposed criteria for hubris syndrome included seeing the world as a place to "excercise power and seek glory", a predisposition to act to enhance their image. (And a concern/obsession with said image), use of messianic hyperbole, regarding themselves as their country/nation, using the royal "we", excessive confidence in their own judgement, extreme self-confidence... and a number of others.

The paper then went on to "diagnose" George W. Bush, David Lloyd George, Neville Chamberlain, Margaret Thatcher, and Tony Blair.

It also notes that Ritalin looks promising as a treatment.

And these are the people who classify autism as a disorder. Somehow, I'm not surprised that we made the DSM.