The Book of Human Troubles
December 19, 2008 by Kristina Chew, PhD
Filed under Health
So the December 17th New York Times refers to the DSM, the Diagnostic and Statistical Manual of Mental Disorders, now in its fifth revision. Will Asperger Syndrome and “high-functioning autism” be merged? Will sensory processing disorder enter the DSM?
The revision, it’s noted, “will have consequences for insurance reimbursement, research and individuals’ psychological identity for years to come,” and, too, for our cultural understanding of what “autism” is. Perhaps it’d be more accurate to call the DSm (whatever revision), the book of being human, all too human.
I think we should ditch the thing and have a living, breathing digital diagnostic manual that could be updated about every six months, as quickly as new information has been coming in. The enormous changes in our understanding of the physiological correlates of “mental illness” that have arisen since the TR-IV have been around for years, but people have still been diagnosed and treated by the score based on these outdated criteria and information.
Or, as I should say, Don’t get me started on the DSM.
Imagine a DSM wiki……..
They should rename the DSM V :
I have a subheading for this book called Being Human (Kristina’s heading);
The Book of Life Skills and Social Skills to handle life in a better way.
Everybody needs help to get through life in itself. Some people may deny it, but it is what makes all of us humble people when we seek help in life. This book should be on every shelf in every household not just in a professional’s office. Lack of help leads to many negative things to happen. Some may need more help than others, but at least there is a way of being a helping hand.
Then there should be subcategories in the Book:
a) Life Skills
b) cognitive behavioral skills
c) children
d) Adults
e) Seniors
f) the teachings in infancy
g) Explanation of Autism and all of its associated parts (every autism specialist and people who are Autistic should help define it) It is very hard to define.
h) The Neurotypical Definition (Neurotypicals define it)
easy enough than said…
It could be like a 10,000 page book…LOL
The DSM is a political and cultural artifact, crafted under NDAs (non-disclosure agreements) at a time when we need more transparency.
The most common cultural issues cited are sexual: homosexuality is/is not a disorder? I know some transgender individuals object to their situation being listed as a disorder, now, and are demanding a change. Of course, being in the text helps them receive some medical and mental health services — but at the price of being a “disorder.”
As one who believes, based on existing evidence, that there are “many autisms” with genetic and environmental causes, I definitely see the need for a “live” Web-based DSM. We know several genetic conditions grouped closely to autism, such as Rhett and Childhood Degenerative Disorders.
My screening experience this week was horrible. The very subjective nature of the testing is nonsense. I have a badly damaged right arm, yet was being timed as I had to complete various WAIS-III tasks. Absurdity at its worst. But, the neuro-psych insisted the WAIS and DSM were the “gold standard” for evaluations. (And this at a major R1 university.)
The DSM is not perfect. The test instruments developed to help with the subjective checklists in the manual are often flawed. (I pointed out that as a Californian, I don’t use the words “pop” or “sneakers” and had to “translate the test” in my head. How would a child do this?? (There were numerous regional and cultural issues with the battery used.)
Honestly, just put the DSM online, as the ICD is online and free with comments from experts. Let people “blog” or “wiki” or whatever on the various topics. Let’s have a real social debate on the merits of the categories, checklists, and general coding practices the DSM encourages.
I get the sense I am now a “recovered” individual or am about to be reclassified as having some other disorder: psychocynicism (a complete distrust of psychology and psychiatry).
Having degrees in rhetoric, I view the DSM as shaping the choices doctors and support personnel make, when often their choices would be better if they never looked at those pages. Guidelines and suggestions have a way of becoming regulations and orders, thanks to insurance companies and public health services that want standards — codes they can check off on forms.
Sorry for the rant, but the last two evaluations were interesting contrasts and revealed just how much some “experts” do nothing more than follow guidelines, while others actually spent time interviewing family and the individual. The DSM can be a distraction, like a ball and chain the professional can’t see is easily removed.
Summation: I hate the DSM-IV, as used. I’d love to see an online version with dissenting opinions updated and debated daily. Of course, the APA would demand the copyright and never really do such a thing.
“Like all semireligious works, the DSM-III needs and exegesis.” –Donald Godwin, Dept. of Psychiatry, University of Kansas.
If we’re proposing alternate titles, here’s my entry: “Bottling The River: A Fecklessly Authoritarian and Inherently Incomplete Collection of Fatally-Context-Free Statistics and Inherently Subjective Perspectives on the Inherently Fluid and Undefinable Potentials, and Politically-Identified Difficulties, of Being Human.”
(Subject to revision.)
That was a fine rant, C.S. Wyatt.
Thanks.
“an exegesis,” that is.
Ugh.
There has always been a great deal of confusion about the differences between “high functioning autism” and Asperger’s,both among the general public,among (mental) health professionals,and those of us diagnosed with other ASDs.I know there are a lot of “Aspies” who might object,but I see no problem with merging the two.
To CS Wyatt,let me say that to a high functioning “Aspie”,who only has to deal with the simple “triad of impairments” of basic autism,the WIAS may seem “absurd” and “nonsense”,but it is a very useful tool,in assessing levels of impairment, in those,like myself, who have also have cognitive deficits,and multiple NVLDs.I was glad I was able to do such tests on a day,when my cognitive function was at its worst.
There is a reason they do such tests.
The wiki idea is terrible,because of the potential for abuse,misinformation,and those with a specific agenda,be it antivaccine,neurodiversity,or whatever presenting overly biased stuff as “the gospel truth”.
password protection would be de rigueur, I would say…….
I don’t always agree with C.S. but this—
“I view the DSM as shaping the choices doctors and support personnel make, when often their choices would be better if they never looked at those pages. Guidelines and suggestions have a way of becoming regulations and orders, thanks to insurance companies and public health services that want standards — codes they can check off on forms.” Rings so true!
The same “ailment” exists within the school systems. The checklists they use for educational diagnoses are based on the DSM criteria rather than actual daily observation of the subtle variations which occur from person to person. So frustrating.
@Roger / Niksmom
There are two “CS” posters here, which can cause confusion. I was born and diagnosed as likely mentally retarded. I was “upgraded” over the years and landed at “sometimes high functioning autistic” (apparently not always). The more I learned to mimic others, the more I was upgraded by evaluators.
For all I know, the latest might decide I’m little more than ADD/ADHD. That has actually been an evaluation in the past, on a good day. Which is why I think multiple-day, varying instrument examinations are best.
My wife would argue I’m closer to “classic autism” than high-functioning, so a single “great day” can result in strange evaluation results.
I believe, but cannot state with certainty, that the other “CS” is a more outspoken “Aspie/HFA” individual. He is definitely more political than I care to be.
@Niksmom
BTW… just read some of your information online. I was in ICU during the first year, quite damaged physically at birth. Still, not a single regret about who or what I am.
I did a Google on CS and autism… the “other” CS is apparently a lot more active online than I am. I always sign my name, in case there is any doubt.
The DSM changes and I change. I guess it only makes sense that I’ll get new labels every few years. But, “political” or “outspoken” will probably never be labels I receive relating to autism. I’m a lousy self-advocate.
My mother was always my best advocate. She and my wife are two people I’d never challenge when it comes to my health and welfare. Me? I still don’t understand why being different is such a big deal to so many people.
C. S. Wyatt