The Worst Clinical Ethics Textbook Ever?

This post is going to be a great deal more vulgar than my usual fare. I apologize, but I've been having a great deal of difficulty in restraining myself over this matter, and I really need to vent.

Moreover, I literally lack the words to adequately express my revulsion. Sometimes, "Ugh" doesn't cut it.

You see, I'm taking my program's clinical ethics class this semester. Our textbook is Corey, Corey, & Callanan's Issues and Ethics in the Helping Professions, eighth edition. In other words, this book.

As the title of this blog entry suggests, I don't like it very much. It's just... incredibly bad. To be honest, "bad" doesn't really cut it here. I mean, the book even says that I'm not human.

No, I'm not joking. The relevant quote is at the bottom of Page 93:

Spirituality is an essential quality of being human, and Allen Weber believes it must be addressed in whatever form is appropriate in counseling [Emphasis added].

An "essential quality" is a defining quality. Something without an essential quality of X isn't X -- and something which has all of the essential qualities of X is X. To say that spirituality is an essential quality of being human is to say that anyone or anything lacking spirituality is not human.

It would be far less offensive if the authors had written that spirituality is an essentially human quality (i.e. that only humans are spiritual), but the context makes it abundantly clear that this is not what they mean: in Corey et al.'s view, apparently, atheists aren't human.

No, I'm not an atheist (at least by the most common definitions), but I share an atheistic lack of spirituality (and, in fact, go a great deal further than many, as an upcoming Symphony of Science video helps illustrate). As such, I'm apparently not human.

I regard this sort of statement as blatantly unethical conduct in the writing of a clinical ethics textbook. How the hell did this get past the editors?

Of course, this is just one line in a 587-page book. If this was just an isolated problem, I wouldn't be nearly so frustrated. Unfortunately, however, it's not. The problems start far earlier... with the book's very definition of ethics.

"Ethics" is defined on Page 14. There are three statements which can be considered defining:

... ethics pertains to the beliefs we hold about what constitutes right
conduct.

Ethics are moral principles adopted by an individual or group to provide rules
for right conduct.

And, finally:

Ethics represents aspirational goals, or the maximum or ideal standards set by the profession, and they are enforced by professional associations, national certification boards, and government board that regulate professions. Codes of ethics are conceptually broad in nature and generally subject to interpretation by practitioners. Although these minimum and maximum standards may differ, they are not necessarily in conflict.

I've shown these quotes to several actual ethics professors. "What the fuck?" was the most common response.

You see, that's not what ethics is. Ethics is the branch of philosophy concerned with the evaluation of human conduct. Ethics is the study of what is right and wrong, the study of how we should act and how we should treat our fellow human beings.

By contrast, this book defines "ethics" as "following the rules set by your profession". What the Hell?

I could go on and on about the flaws in this book. These include its "discussion" of the issues surrounding proxy consent (it doesn't exist), its discussion of the issues surrounding involuntary committment (which boils down to, "consult with your colleagues and follow the law"), and many, many others. I just wouldn't be able to post this review in a reasonable timeframe if I did.

All of this raises a very important overarching issue, however: this book is being used to educate clinical professionals (who often likely never get much education beyond what's in the book). A substandard clinical ethics textbook promotes substandard and unethical treatment of clients -- meaning that it hurts and even kills people. As such, I have to conclude that both the publication and use of this textbook (qua textbook) is highly unethical.

In conclusion, however, I suppose I should revisit the headline of this post and ask the inevitable question: is this the worst clinical ethics textbook ever?

I don't know. I sincerely hope I am never in a position to test that hypothesis.

Edit: Corrected a couple of typos.

An Open Letter to Buzz Aldrin

Today is Autistics Speaking Day. For those of you who are unfamiliar with the event, it's an autistic reaction to the highly-misguided "Communication Shutdown Day", a day in which we autistic people make as much online "noise" as possible... on the day in which hordes of people are voluntarily abstaining from our preferred means of communication.

I won't discuss why the whole idea is a bad one. Others have already done so -- far better than I ever could. Instead, I'm going to post an open letter to one of the major participants in this farce.

Dear Mr. Aldrin,

When I was a child, the Apollo missions were a great inspiration to me. They truly stand out among the achievements of mankind as a spectacular triumph of science and a shining example of what man is capable of if we truly try. You, along with the other Apollo astronauts, were my childhood heroes. Your triumphs fanned the flames of my love of science, helping raise it from the bare embers of a childhood interest into a lifelong passion. Your successes comforted me when things seemed hopeless, helping to reassure me that even the seemingly impossible was often within reach.

Today, I am a graduate student in Nova Southeastern University's M.S. Counseling program and working towards board certification as a behavior analyst. My dream is to go into psychological research and to help raise the standards of the discipline to the point where psychology and the other "soft" sciences can be legitimately compared to the "hard" sciences in terms of methodological rigor... and to come, bit by bit, closer to the countless truths I seek. This is not to say, however, that I do not face substantial challenges in reaching my goal.

The worst of these challenges are prejudice and fear. You see, I have a disability. One of my professors flat-out told me (in writing, no less) that having it was unprofessional... in a course where a third of the course grade was participation and professionalism. My clinical ethics textbook states that I am not human. Fear-driven efforts to create a world without people like me in it have already claimed countless lives throughout the world, including at least ten innocent babies in California... this year alone. There's even a clinic within easy driving distance of my house dedicated to chemically castrating people like me.

My disability is most commonly called "autism".

This is why it hurt me so incredibly much to hear that you, one of my childhood heroes, has been raising money for a fear-mongering antivaccine group dedicated to the goals I mention above. I can only hope that you did this out of ignorance; the thought of you having done so knowingly just hurts far too much.

As you may or may not know, the proceeds from Communication Shutout Day go to the program's "global partners". In America (outside Colorado), this means Giant Steps, the Hollyrod Foundation, and the National Autism Association. It's this last which is the most concerning.

The National Autism Association is an anti-vaccine group dedicated to promoting untested, unproven, and often dangerous "treatments" for autism. They praise intravenous chelation (which risks death and brain damage, and, more importantly, involves pumping an irritant into a child's veins for at least two hours at a time). Their 2009 conference, which was held within walking distance of my house, featured a keynote presentation by Andrew Wakefield (whose unethical conduct and Mengele-like "experiments" were largely responsible for major measles outbreaks throughout Europe), a presentation blaming my neurology on MSG in vaccines, and a presentation on why my neurology should be considered a disease (among countless other things). One of their past conferences even involved a keynote from an infamous quack who makes his living chemically castrating autistic children (and who is responsible for the clinic near my home). They recently were involved in a concentrated effort to effect legislation here in Florida which would have effectively banned the flu vaccine. I am perfectly willing to provide references and further information on any of these assertions on request.

Mr. Aldrin, you are old enough to remember many of the diseases which vaccines prevent. For instance, with polio alone... the iron lungs, the countless children who were crippled for life... to groups such as the NAA, bringing back these things is worth it if it means not having people like me or my friends around. You should also remember Jonas Salk and his heroic dedication to the welfare of the children of the world. To groups such as the NAA, Jonas Salk and countless others like him are villains. I find it difficult to express the sheer perversity of this.

I will admit that the NAA has also campaigned against the more "classic" abuse of children with disabilities in the forms of seclusion and restraint. This, however, mainly serves to help legitimatize them and to help them lend support to other, wackier anti-vaccine organizations such as Generation Rescue, SafeMinds, and the National Vaccine Information Center. In a recent conference presentation on the NAA, I referred to them as a "gateway organization" because of their function in such groups' recruitment tactics.

I won't pretend that this is the only thing wrong with Communication Shutout Day. I strongly encourage you to read what Ari Ne'eman of the Autistic Self-Advocacy Network has written about the matter ( http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=122 ) and to peruse the various online writings relating to Autistics Speaking Day and the reasons for it.

In the meantime, however, I have to go to bed tonight knowing that one of my childhood heroes has chosen to raise funds for a group whose dedication to creating a world without people like me in it is so strong that they are perfectly willing to sacrifice the lives of countless innocents to create it.

Sincerely,

Alexander Cheezem

The Bigotry Defense?

Some of you may be familiar with the Alex Barton/Wendy Portillo case. For those of you who aren't, it started two years ago, when a kindergarten teacher (Portillo) had her class list off why they didn't like an autistic classmate (Alex Barton) and then had them vote him out of her class. To briefly summarize a really, really long story, Alex is now doing quite well academically in a different school district (although he still bears emotional scars), Wendy Portillo is back in the classroom (retaining her tenure) and again abusing students, and Alex's mom, Melissa, has filed a federal lawsuit against the Portillo and the St. Lucie County school district.

I'm writing this blog entry about that last one. You see, the school district's defense is apparently going to be something along the lines of the argument that the incident didn't hurt Alex... because autistic children can't understand -- or be hurt by -- "negative social feedback" (or, in other words, someone else doing something nasty to them).

No, I'm not joking.

After going through quite a bit of trouble, I've managed to obtain some of the documents that the district's submitted in their defense. Specifically, I've obtained the "expert testimony" that they commissioned from two doctors: Dr. Sue Antell and Dr. Max Wiznitzer.

These are quotes from public documents available on PACER, albeit not for free. I had to jump through a lot of hoops to get them (although, admittedly, most of these were technical -- I didn't bring a memory card with me when I went to visit my school's law library, the law library's one computer set up for PACER access was an antiquated technical nightmare, and I didn't want to unnecessarily spend money to get the documents from my home system), but they're still technically public domain. As such, I've uploaded them to RapidShare to cut down on the metaphorical red tape. Feel free to host them elsewhere.

I'm not going to comment over-much on them. I'm going to let what they wrote speak for themselves. I will, however, clarify a bit on both.

To start off with, there's this section of Dr. Antell's testimony -- delivered before she ever met or examined Alex (whose full name is Caleb Alex Barton, although he does not respond to "Caleb"):

... Based upon this review, it is my opinion that CAB probably does have Autism, a disorder of language, executive functioning and social relatedness, which profoundly impacts upon how a child perceives and reacts to the language and behavior of other people.

It is further my opinion that the events described would not be expected to have any long term impact even upon a typical child who might appreciate more of what was going on around him. As they grow up, children experience numerous negative or unpleasant experiences with peers, teachers and parents. Such experiences are part of the normal experience of development. They serve to help a child develop an appreciation for the impact of his behavior on others in his world, and are important in the development of sympathy, empathy, and altruism. This is quite different from the constant and chronic bullying which we unfortunately see somewhat among older children, or the chronic systematic emotional abuse of a child by the adults in his life. In any child with Autism, such experiences are going to be processed quite differently. Depending on the extent of the pragmatic language dysfunction, the lack of social relatedness, and the impairment in the ability to appreciate another's point of view (what psychologists call "Theory of Mind") it is quite likely that many, if not most children with autism would simply have no emotional connection to such events. While they might encode and recall the "script" (i.e. the language used and the actual events), their ability to be emotionally impacted by what is almost entirely a language based experience would be anticipated to be exceedingly limited. This is not to imply that Autistic children cannot experience trauma. Rather it attempts to distinguish between possibly unpleasant events which are the result of linguistic exchanges from more primitive responses which might involve non verbal actions, or verbal communications which would produce feelings of fear or terror which are generated by non cortical brain regions.

Beyond this, we have the opinion of a qualified child psychiatrist that CAB suffered no emotional distress as a result of this incident, and another who described behavior with autism but not PTSD.

Based on the foregoing, it is my opinion to a reasonable degree of neuropsychological probability that CAB has not demonstrated any real evidence of emotional distress as a consequence of the events of 5-21-08. It is further my impression that he does not require any ongoing treatment, and depending on his ability to appreciate what is happening in such therapy, that this poses a risk of creating a trauma where none actually exists.

Two clarifications: "The events described" were the vote-out incident. The same is true of "the events of 5-21-08".

And then there's Wiznitzer's testimony:

In summary, Caleb Barton is an 8 year old boy with a diagnosis of an autism spectrum disorder (Asperger disorder) and behavioral features labeled as attention deficit hyperactivity disorder (including compatible rating scales). He has a history of challenging behaviors in kindergarten with no details of his behavioral functioning since that time (except for the report of Dr. Coleman). School records document impairment in social interaction with peers (supported by psychiatric evaluations). Assuming that his diagnoses are accurate, it would be difficult for a child with a significant impairment in socialization (compounded by the social issues associated with ADHD) to fully process and comprehend the impact of negative social feedback from peers (as stated by Dr. LoSardo "on some level he probably didn't get social significance"). Therefore, this type of event would not be expected to result in PTSD.

Dr. Wiznitzer's testimony is nowhere near as bad as Dr. Antell's... but really.

To the St. Lucie County school board, however, I have only one thing to say.

Some Links That May Have Passed the Neurodiversity Community By

Just as a series of quick notes while I try to recover some strength for next week's midterms:

Not too long ago, two reporters of my acquaintance wrote an excellent article for the Miami New Times regarding the Geiers and their political antics. They blogged on the affair (and what it says about the media) on Thursday; the entry is of general interest to the autism-relevant communities.

Almost exactly one week ago, Peter Bell and Geraldine Dawson of Autism Speaks held a pair of "forums" here in South Florida, one in Miami and one in Boca Raton. A recording of the Boca Raton forum is available in two parts here and here. I spent a good part of the week transcribing various parts of these recordings -- trying to get a record of the more notable quotes and timestamps in them. I've finished with Part One (Bell's presentation), but have yet to even start on Part Two (Dawson's presentation and the subsequent Q&A). This is unfortunate, as there's some genuinely good/useful stuff in that part.

Cleaned up somewhat, my transcript (which has various notes, etc.) reads as follows:

Part 1/Ross:

10:31 : Their advocacy efforts -- "a way in which we give the autism community a voice."

12:52 : Start of a discussion of his son's "regression".

13:14 : Implicit endorsement of the opioid excess theory (and the GF/CF diet).

14:42 : Start of the "duplo discussion" (sequence RE son's play styles)

15:28 : "... he basically disappeared in front of our eyes."

21:08 : "We're also, ah, as I said, getting ready for the adult years, um, we're actually, we had our first meeting, ah, about, ah, guardianship last week, um, which we'll be going through when he turns eighteen in January..."

25:54 : "And autism today, in some people's estimation, is an epidemic. Um, certainly the increase in the last twenty years, which we, uh, estimate at about six hundred percent, um, has reached epidemic proportions. It is better understood; um, I think most researchers would say that it's not well understood yet. We, uh, have some ideas about what some of the causes might be, um, but, ah, we certainly don't know what probably is behind the vast majority of the cases. Um, it is considered a spectrum disorder, um, I mentioned, ah, before, ah, how there are different types of autisms, um, and uh, certainly we refer to autism these day, these days as autisms, and, uh, that there are multiple types of autism. It is, by and large, considered to be a treatable disorder, ah, this notion of 'recovery' is real. Uh, and I use the quotations over 'recovery' because it's more or less a term that's defined by no longer meeting the criteria of autism after having been previously diagnosed with it, um, and it is believed that anywhere between maybe ten to fifteen percent of cases of autism, um, the child does recover or ultimately lose his their diagnosis."

27:22 : "The earlier you get it, the better the outcomes are going to be."

28:28 : "We're fortunate in that, in the mid-1990s, several national organizations were established, one of which Jackie referenced, was, which was the National Alliance for Autism Research, which had an amazing presence here in South Florida, largely because of Jackie and all the efforts that she did. Ah, another organization that was founded around the same time was Cure Autism Now, which was based out of Los Angeles. And CAN and NAAR, really, between the two of them are largely responsible for having created what is now the research -- autism research -- field, which, ah, probably totals or numbers at least two thousand scientists around the world who have dedicated their careers to autism."

29:07 (Continuing): "Um, the DAN! movement also happened around the same time, um, and sure some of you have, ah, seen DAN! doctors and so forth, and, ah, certainly, uh, this whole attitude of thinking of autism as something that they can actually ameliorate and make better and so forth, um, again, I think also contributed to that whole notion."

30:19 : (Some credit-mongering/AutSpeaks bragging. Not really politically useful, but worth listening to.)

32:58 : "We're also very involved in family services; this was a department that was formed not long after the merger with Autism Speaks, and that's about helping families, ah, live a better life through quality of life for those who are living with autism today." (compare the numbers)

35:15 : "We're very proud of, um, what we're able to do in terms of helping families."

(Discussion of what they do to "help families".)

51:10 : Community grants in Florida. Total $136,435 over three years. Compare Geri Dawson's salary.

51:56 : "Uh, we have funded, uh, four different CARD programs throughout the state, um, as you found listed here."

54:41 : "So let's shift gears and talk a little bit about advocacy and, uh, what we do in government relations, and, as I said before, this is all about giving those that have autism and their families a voice. Ah, I will do a little bragging down here and say that our AutismVotes website, which is AutismVotes.org, did recieve a Webbie award, basically being one of the best healthcare sites, ah, that's available, ah, for political campaigns."

(Lots of credit-seeking.)

56:39 : "And we've also to ha-have more dialogue with the office of disabilities. We do recognize that autism is part of the larger disability community, and so we've started to make some inroads in helping to figure out what place autism has in that, within that spectrum."

1:07:43 : "Believe me, when I go home tonight, and it probably won't be until tomorrow morning when we all wake up, 'cause I get home very late, uh, in the wee hours of the morning, but I'm very cognizant of the fact that when I wake up tomorrow morning and see my seventeen-year-old son, it's going to be hard to think about the progress that we've made, 'cause he still has autism, and his life is very challenging."

(Closing remarks from the 1:07:43 timestamp are well worth listening to.)

1:09:37 : "It is still a public healthcare crisis, or a 9-1-1, so to speak, um, we have to make sure that people recognize that we have, for the most part, an unexplained six-hundred percent increase in the last two decades, and we need to understand why. Um, and there is absolutely a sense of urgency in terms of what we need to accomplish in order to get the answers that we need."

1:10:31 : "I think it's also critically important that people with autism have a voice in this. Um, and even if you're not able to communicate verbally, doesn't mean you're not able to have a voice. Um, I know we, as uh, a-y'know my son is is marginally, ah, communicative, ah, or verbal, um, and y'know it's hard to really get a sense of what is it that he wants out of life and what is his future, but y'know what, we, we go through great, um, ends to try to figure out what it is that he wants, um, and I think that we have to, as a community, stop and listen, and listen to the individuals that have autism, and, and have them be a part of what we're, what kinds of decisions that we're making on their behalf."

Still More on Vaccination

I just got vaccinated yet again -- this time the vaccine even contained mercury!

I'm now heavily perseverating. Oh, wait. That's normal. Nope, still not feeling any more autistic.

Another Comment on Vaccination

I got vaccinated today -- against three different illnesses. I still don't feel any more autistic.

My arm is a bit sore, though.

On Mental Disorders, Part One

One of the major errors that people make when thinking of DSM mental disorders and the like is to think of them as diseases. While this is undoubtedly true for some diagnoses in the DSM, the fact of the matter is that "mental disorder" and "disease" are really very different concepts.

While disease categories are abstractions based on etiology, mental disorders... well, aren't. That isn't even the ideal anymore.

As I discussed in an earlier post, certain conditions must be met for something to be called a disease:

• It must be an impairment of the normal state of the living animal or plant body or one of its parts.
• It must interrupt or modify the performance of the organism's vital functions.
• It must be typically manifested by distinguishing signs and symptoms.
• It must have a distinguishing etiology (which may be simple or complex).
  

The conditions for something being called a mental disorder, however, are very different. Unlike with the concept of "disease", however, these are anything but straightforward.

Going to MedLine Plus, for instance, yields the following definition: "a mental or bodily condition marked primarily by sufficient disorganization of personality, mind, and emotions to seriously impair the normal psychological functioning of the individual—called also mental illness."

In other words, while a disease is an abstraction based on etiology, a mental disorder is an abstraction based on symptoms. While a disease is a process which causes its symptoms, a mental disorder is a label which describes them or a description of them. Classification of mental disorders makes no reference to the why, only to the what. They have no explanatory value whatsoever; to say that a psychiatric diagnosis has any explanatory value whatsoever is to commit nominal fallacy.

Even this, however, isn't really satisfying. What, for instance, does "disorganization" mean? How do you decide whether or not something "impair[s] the normal psychological functioning of the individual"? Heck, just what does "normal psychological functioning" mean?

These questions are important because of the "wiggle room" built into these terms. In the DSM-I and II, for instance, homosexuality was considered a mental disorder -- homosexuals were considered "broken" heterosexuals whose attraction to members of their own sex represented an impairment to their functioning qua members of their gender. Another infamous example of this problem featured a doctor who pathologized the desire of slaves to flee their masters (he considered whipping to be curative).

My abnormal psychology textbook provides a somewhat more clear answer: it defines one as "a psychological dysfunction within an individual that is associated with distress or impairment in functioning and a response that is not typical or culturally expected." (p. 2)

This, in turn, breaks down into four parts. To qualify as a mental disorder, a set of symptoms must:

• Constitute a "psychological dysfunction".
• Be within the individual.
• Be associated with distress and/or impairment in functioning.
• Be associated with (at least one) response that is not typical or culturally expected.

Unfortunately, none of these is quite what it seems. I'll write more on this later, but for now... just keep in mind: a mental disorder is not a disease.

Edit: Corrected an embarassing typo.