On Autistics Speaking Day

Today is, once again, Autistics Speaking Day. Through happy coincidence, it also happens to be part of the early voting period in my state's election cycle during a major national election.

I live in Florida. Those of you familiar with practical politics here in the US should have some idea of what this means regarding the significance of my vote.

Guess what? I chose to make my voice heard in a far more significant way than a mere blog post.

It took, as it happens, about forty minutes, most of which was spent in a line. For those of you who go, I recommend bringing a book -- the paper kind -- because the legality of cell phones and the like in voting areas is... well, an issue. It's illegal to use them here; no idea about elsewhere.

And, if the person reading this happens to be a politician? Yes, people with disabilities vote.

And that means that we can vote for (or against) you.

In the end, as I said, that's far more important than a mere blog post. Today, for me, was not just Autistics Speaking Day.

It was Autistics Voting Day.

On Bad Parents

Today is Autistics Speaking Day. To follow in the tradition of last year, I'm going to take the opportunity to talk about something that I wouldn't normally blog about. Be forewarned that this is not -- at all -- a pleasant topic. In fact, it's downright disturbing. If you are a parent to an autistic child, this will be particularly disturbing to you. If you are autistic yourself, it will be equally disturbing in a completely different way. Be forewarned.

Towards the end of September, the blog The Thinking Person's Guide to Autism hosted a series of exchanges referred to on-site as the Self-Advocate/Parent Dialogues. If you haven't read it, I strongly recommend you do so -- including the comments. Yes, I know that's ten-eleven (depending on how you count) blog entries, many of which have an inordinate number of comments. I make this recommendation anyway -- and recommend it strongly.

During that exchange, a lot of issues -- many of which are very important -- relating to the parent/self-advocate divide in the modern autism world were discussed. By and large, the parents present were interested in helping their child and were willing to respect and try to understand the viewpoints and interests of autistic people. And, while I can't directly confirm this, I strongly suspect (and have no reason to disbelieve) that those parents love their children and wanted to do what they could to help them. I believe (and have no reason to disbelieve) that, to those parents, their involvement in autism issues was not primarily about themselves or their personal interests and desires, but rather about trying to raise their children.

One fact, however, was not mentioned during that dialogue, and it's a simple fact that while the above can almost certainly be said about the parents who participated in the Dialogues, it certainly cannot be said about all parents. Put another way, not every parent of an autistic child is a good parent.

"Good" and "bad" are relative, of course, and everyone makes mistakes. I'm not trying to demonize or stereotype the parents of autistic children here.

Still, there's an attitude among parents' groups characterized by the presumption that each parent loves their child and is generally trying to raise their child as best they can. There are three real problems with this -- and I've already discussed the first one. Specifically, parents are human and thus fallible. Even if a parent is trying to raise their child as best they can, this doesn't mean that they are.

The second problem with that presumption is far simpler. It simply isn't true.

I know I've repeated myself here. This was deliberate. The point needs to be driven in -- preferably with a metaphorical sledgehammer.

For years, I've been reading coverage of parents doing truly awful things to their children. Take for instance, Marguerite Famolare, as quoted in this article about the Judge Rotenberg Center. According to her, the center's systematic torture of her child is great -- after all, if she shows him the remote control to his shock harness:

He'll automatically comply to whatever my signal command may be, whether it is 'Put on your seatbelt,' or 'Hand me that apple,' or 'Sit appropriately and eat your food,'" she says. "It's made him a human being, a civilized human being.

I have to rather strongly disagree with her definition of humanity. Beyond this, I think that the quote speaks for itself.

Then there's the case of Karen McCarron, who I recently learned is trying to appeal her well-deserved sentence and get a new trial. Her story is, in a way, much simpler to explain -- she murdered her daughter and blamed her actions on said child's reified neurology. According to her lawyer, McCarron believed that Jesus would bring her child back, sans certain reified aspects of how she learned and experienced the world.

I did not select these two cases at random. While I could have picked from a lot more, including many not on that list (which is rather outdated at this point), they serve as illustrations of the fact that there are some phenomenally bad parents out there. Some of said parents have autistic children.

More importantly, however, they serve to illustrate another factor -- the ways in which certain attitudes prevalent in the autism world can be used as justifications for truly monstrous acts towards autistic people. When I object to, for instance, the reification of autism, I am doing so for damned good reason. When I talk about psychosocial stigma, I am not talking about something even remotely close to trivial.

Finally, these cases are public -- they have public documentation which I can link to. Trust me, I have a lot of examples from personal experience. I've spent a surprisingly large amount of my professional life trying to clean up the messes that bad parents and poor parenting decisions (of various sorts) have left behind.

The third problem with the attitude I referenced is central to the attitude itself and not the underlying beliefs. There is an old saying that "sympathy for the guilty is treason to the innocent." The saying -- and the underlying meaning behind it -- apply here. Yes, parents of autistic children often function without adequate support, are stressed, are under incredible pressures, etc. If, however, we choose to allow this to detract even one iota from our condemnation of this sort of parent's inexcusable actions, if we say that Karen McCaron's actions were "really about a lack of support" or some such, we are essentially arguing that the act of torturing or murdering an innocent child is excusable.

I disagree with this in the strongest terms possible.

Such actions need to be condemned. We, as a community, owe that duty to Karen McCaron's and Marguerite Famolare's victims.

I have, at this point, been writing this blog entry all day -- essentially dropping everything else in my life to do so. It is, however, phenomenally difficult for me to do so. As I type this sentence, it is 6:17 in the evening. I have been writing this almost since I finished breakfast.

As the amount of time I've spent on this text implies, this is not an easy topic for me to write about. I don't even like to think about parents such as those two. I originally intended to write far more about them than I did... but gave up on several (actually rather important) points simply because I couldn't bring myself to write them. In fact, I even dropped one major and prominent example of bad parenting from my list -- simply because I didn't think I could stand writing out another paragraph detailing such behavior. I know for a fact that I will regret that decision.

I would love to think that every parent was a good one, that (all) parents could be trusted to act in their child's best interests, and that we could count on parental love to ensure that our parents would be our allies.

Unfortunately, I know all too well that this is simply not true.

On Paternalism, Murder, and Genocide

Most people don't think of paternalism and murder as compatible. The same could be said for paternalism and genocide. The fact of the matter is that there's nothing incompatible about the concepts.

Paternalism is an attitude. Murder and genocide are actions. They're completely different things.

To commit paternalistic murder, all you have to do is to kill someone because you believe they're better off dead -- to kill them "for their own good". To commit paternalistic genocide, you simply have to generalize this to a demographic group.

It's a sad commentary on the state of things in the world of disability that we have to seriously worry about this intersection.

A Recent Assignment

My abnormal psychology class has assigned "critical thinking exercises". In practical terms, this means weekly essays on some topic or another. The first one, which I just turned in, was a response to the question: "What do you feel are the most salient and valid criteria of abnormality? Why?"

While posting this essay, I found several typographical errors that I somehow managed to miss while proofreading it for submission. I've corrected them and added some HTML links to provide explanation and further reference. This said, my essay is as follows:


This is a pretty difficult question for me to answer, mostly because I believe the question itself is both flawed and loaded. To begin with, our textbook grossly misuses the term "abnormal", equating abnormality with dysfunction and defining the term "abnormal behavior" as synonymous with the concept of a psychological disorder (cf. p. 2). In actuality, however, the term "abnormal" simply means "not normal" and is synonymous with the term "atypical". As such, any behavior which differs from the norm is abnormal… and atypicality is the only criterion with any relevance.

While it is possible to argue that our book uses "abnormal" and its derivatives in a special sense, the use of this term in such a fashion is a gross violation of both medial bioethics and clinical ethics in general. Specifically, it violates both the principles of benevolence and non-maleficence through its effects both on informed persons who accept this equation (i.e. students learning from the book) and the effects of regarding this sort of linguistic equivocation as acceptable on society as a whole.

I certainly do not believe in linguistic determinism, but it is very difficult to deny the existence of a relationship between language and thought. How we think affects the sort of language we use, and there is a good bit of evidence that the sort of language we use effects the way we think (e.g. Tan et al., 2008). The existence of several named logical fallacies related to this (e.g. equivocation, amphiboly, fallacy by semantic shift) tends to support this general idea. Given the state of the knowledge in this arena and the precautionary principle, there is an ethical obligation to avoid this sort of issue.

Moreover, there is the matter of laypersons who hear discussions using this sort of misused terminology. It is unlikely that such persons will be aware of the issues surrounding the constructions used, and we live in an era in which the technical literature is becoming increasingly available to such people (as evidenced by publications such as PLoS and the policies of PubMed Central).

Even if the issue of the false equivalency created by this abuse of the English language is ignored, the criteria laid out in the book are problematic on other grounds. Simply put, they have been used to justify outright bigotry and abusive "treatments" which were only "justified" by this bigotry (e.g. Cartwright, 1851; Lovaas, 1987; O'Malley, 1914; Rekers & Lovaas, 1974; Chapter 14 of our book). The use of our book's criteria as sole and sufficient demarcation for what is and isn't a mental disorder is flawed, highly unethical, and not what is actually done in practice.

Furthermore, the entire construct of "mental illness" is of dubious validity and has been extensively challenged (e.g. Szasz, 2008). Even if we can't demonstrate that mental illness objectively exists, however, there remains one potential justification for the use of the concept: utility.

Simply put, we can justify describing something as a mental illness if we can demonstrate that the concept – and the medical-model approach which goes along with it – is useful. Doing so in a clinical environment, however, would require a demonstration of improved patient outcome, and it is very difficult to conduct a rigorous randomized controlled trial of the use of a concept.

Despite this, it is possible to evaluate the consequences of medicalization via the epidemiological evidence and comparing the prognosis of various syndromes in countries that have widespread access to medical treatment for mental illness and those that do not. It is also possible to do this by comparing outcomes across time-periods in a similar fashion.

Scizophrenia is the most "extreme" of the DSM mental disorders, and it is a major mainstay of psychiatry. As such, it makes intuitive sense to begin by evaluating the utility of the concept of a psychological disorder in reference to schizophrenia. Moreover, there exists a single randomized, controlled trial of psychiatry as a whole in the treatment of schizophrenia: the Soteria Project.

None of these approaches yield evidence in favor of the utility of a medical model approach to schizophrenia: World Health Organization data indicates that schizophrenia has better prognosis in developing countries than in developed countries; the best outcomes to be found for the treatment of schizophrenia here in America can be found in those non-medically treated by Quakers in the 19^th century; and the findings of the Soteria Project were very much damning in regards to the effects of psychiatric intervention (see Whitaker, 2002 for review).

Or, in other words, the concept has yet to demonstrate utility in regards to treatment. If and when it does, I'll start to consider medical-model approaches ethically justified.

References

Cartwright, S. (1851). Report on the diseases and physical peculiarities of the negro race. New Orleans Medical and Surgical Journal, 7, 691-715.

Lovaas, O. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3-9.

O'Malley, M. (1914). Psychoses in the colored race. American Journal of Insanity, 71, 309-337.

Rekers, G. & Lovaas, O. (1974). Behavioral treatment of deviant sex-role behaviors in a male child. Journal of Applied Behavior Analysis, 7, 173-190.

Szasz, T. (2008). Psychiatry: The Science of Lies. Syracuse, NY: Syracuse University Press.

Tan, L., Chan, A., Kay, P., Khong, P., Yip, L., & Luke, K. (2008). Language affects patterns of brain activation associated with perceptual decision. Proceedings of the National Academy of Sciences, 105, 4004-4009.

Whitaker, R. (2002). Mad in America: Bad Science, Bad Medicine, and the Enduring Mistreatment of the Mentally Ill. Cambridge, MA: Perseus Publishing.

Edit: Corrected one more typo...

On a Recent Huffington Post Article

Around a week ago, this article was posted to the Huffington post.

Quite frankly, my initial reaction to it was to think that it was an April Fool's joke. The sheer absurdity of the juxtaposition involved in talking about healing divides while spewing hate speech is striking.

Yes, hate speech. It's pretty unambiguous. Reading through the comments, however, it quickly becomes apparent that people don't get it.

Well, some commentators do. Thanks, Kim! (And, of course, all of the other people who I don't know...)

At the moment, the commentators seem to be divided between those who engage in reification error and those who don't. This is... pretty typical, really.

In any case... let's see. The post characterizes the neurodiversity movement as being made up of "people with Asperger's Syndrome or higher functioning autism" (this is nowhere near true, and "high functioning" is considered insulting), describes ASAN as "a self advocacy movement for people with high functioning autism" (ditto), and ends by stating that "We aren't the enemies. Autism is." (Which qualifies as blatant hate speech).

I really don't know what to say here...

On Disability, Accessability, and Analogies

While recovering from my knee operation, I've been thinking about a lot of things. Some of these (e.g. my questioning how the Hell the character of Gregory House is able to function on the meds he takes) have been ultimately trivial and unimportant. Others (e.g. my thoughts on grapefruit/orange hybridization) would likely only make sense to Floridians who have experience with both joint surgery and altered states of consciousness.

Given the state of mind I was in for a while, I am very lucky that I didn't try to peel my knee.

One of the circumstances I've faced, however, is probably a bit more significant... if a great deal more mundane. As it functions as a pretty good analogy to a wide variety of disability-related issues (mostly those centered around accessability), however, I'm sharing it here.

My house has one portible phone. All of the remainder are traditional wired units. On the ninth (a week after my operation), I was sitting in my little recovery area when the house phone rang. The portible unit (which was by me) had run out of batteries, however, so I had to disconnect myself from the machines I was hooked into, grab my crutches, and hobble over to the nearest traditional phone as quickly as I could (a distance of about 20 to 30 meters, give or take). I didn't make it on time and barely missed the call.

Then I found out the hard way that I hadn't brought my cell phone with me. It, still within easy reach of my starting point, began to ring. I attempted to hobble back, but again couldn't make it on time.

Ironically enough, the calls both turned out to be the doctor who'd performed the operation which had led to me being unable to answer. Had I been able to pick up, it might have saved me some of the grief which I am facing at the moment regarding an unexpected complication in my recovery.

Suffice it to say that cold is good for swelling, but too much of it leads to freezer burns (not major ones, thankfully).

Anyway.

Had the call come via my cell phone first (which was much more accessable in both the literal and disability studies senses), I would have been able to simply reach over and answer. Instead, I wound up failing to answer due to my attempt to try the less acessable solution first.

As I said, it's an analogy. Take it as you will. I could probably write up a better article on this, but my rehab efforts are exhausting me and I have a lot of other things on my mind. One of the banes of blogging, that last one is...

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...