The "Autism Spectrum" Debate

[3113]

Short article on whether the Asperger's label ought to be kept. We discussed, a few weeks back, how the psych. association is planning on erasing the Asperger's label and make it "autism spectrum disorder." I thought this personal perspective from a father who has both an "Aspie" son and an Autistic son interesting. He thinks the labels should be kept as is.

I'm a little split myself--and that's as someone who is Aspie. I don't know if we should keep the Aspie label just because it's taken on a certain cache. Technically, Asperger's has always meant someone who is autistic. So why not call a spade a spade?

On the other hand, it's not unheard of to distinguish important differences between two things within a "family" with different names. And both autism and Aspergers conjure specific images in people's minds clarifying for them what kind of person (or child) they're dealing with. Why change this and muddy the waters?

 

[laurafairlie]

Interesting. I have always taken umbrage with some aspects of the DSM and its love of labels. I'm not sure whether it's good to change that classification in terms of the autistic spectrum. My cousin is autistic and he is quite young but he definitely is full-scale autistic with almost no abilities to interact socially. He is a sweet and beautiful boy, yet his mother has such difficulty finding good quality services to help in his education and care. She is young too, so it's even harder. He can't speak in "language," yet he communicates. He can't express his needs verbally, yet he can indicate he has a "need." It's so complicated.

Have you heard of Temple Grandin? I saw a bio about her recently and was deeply impressed with her thoughts on autism. She talks about how she thinks in pictures, not in words. She is autistic and is amazing in her understanding of animal behavior, has written several books about it. Here's a link for anyone interested: http://cookingupastory.com/temple-grandin-the-world-needs-all-kinds-of-minds

Do you think in pictures? Just curious.

 

[Xelebes]

Asperger's and HFA's differences are so arbitrary though. Based on IQ and whether or not there was a speech delay? Neither label distinguishes just how much of a disability the label is trying to convey.

I'd rather see the more nuanced 5-stepped diagnosis that they are bandying about, based on how disabling it is and what disabilities are present.

 

[englishman29]

im a support worker in the uk and have worked with a few people with both types of disorders in differing fields and on a personal level feel that the names of each disorder should stay the same. I understand the similarities of both and maybe a classification of autistic is right but i feel aspergus is a sub catorgry which should stay defined. I work with one autistic persona nd although i cant give out details due to confidentiality i will say that communication is difficult but you can clearly see that the person is able to communicate just in a different way to our established norms. You asked if we think in pictures, i think the answer is yes but we are able to explain and express ourselves from these mental pictures where as some people cant. If i was to ask anyone what their favorite memory was, they would have an image pop into their minds and then they would tell us from that picture.
I dont know about other companies or other contires but there is good care out there and when you find the right one the communication between each other is so much better, different techniques work only with trial and error and can be a painstaking job to work out and get right but after seeing such breakthroughs i cant explain the sense of relief and happyness for the parents, the idividual and the caring staffs

 

[englishman29]

ps sorry for the dire spelling etc, writting via a mobile with bad keyboard plus i am dyslexic so that doesnt help either

 

[Stella_Omega]

I'm not so happy with the change either. I agree it's a matter of scale, but along that scale exist a host of very important social and interpersonal factors, the having or lacking of which which can be crucial to the person's life.

 

[laurafairlie]

I saw a really good film done by Sandrine Bonnaire called "Her Name is Sabine." The film is a documentary about Bonnaire's sister, Sabine, who is autistic. It's a very good movie that truly expresses the frustrations, moments of joy, need for better care and treatment, and social aspects of the disorder. http://www.youtube.com/watch?v=qyp97e_MWKI

 

[stephen55]

DSM is as DSM does...

The DSM is labels, and for a good reason. It's not a textbook on psychiatry. It's a manual of how to accurately diagnose a mental disorder. It began as an attempt to bring unity of diagnosis to a field that historically was lacking in such. It's simply a way for psychiatrists to be sure that when they say they are dealing with a certain disorder, they are all on the same page.

The proposed change to the upcoming DSM-V, for autism is to merge Asperger's disorder with autism spectrum disorder into one larger entity; autism disorder....

http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94#
...for those who may want to check it out.

That said, labels may change (this is not yet chiseled in stone) but people won't. Autism itself doesn't change, Aspies will still be Aspies and the world carries on. If you do check out the APA's proposed changes, you will find that the Severity page is empty. They haven't yet decided on how to label that.

 

[laurafairlie]

The DSM is labels, and for a good reason. It's not a textbook on psychiatry. It's a manual of how to accurately diagnose a mental disorder. It began as an attempt to bring unity of diagnosis to a field that historically was lacking in such. It's simply a way for psychiatrists to be sure that when they say they are dealing with a certain disorder, they are all on the same page.
The proposed change to the upcoming DSM-V, for autism is to merge Asperger's disorder with autism spectrum disorder into one larger entity; autism disorder....

http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94#
...for those who may want to check it out.

That said, labels may change (this is not yet chiseled in stone) but people won't. Autism itself doesn't change, Aspies will still be Aspies and the world carries on. If you do check out the APA's proposed changes, you will find that the Severity page is empty. They haven't yet decided on how to label that.

The problem is that the labels and the descriptions of the disorders these labels signify are extremely vague. You can go to one shrink and be labeled a schizophrenic and another one and get labeled a bi-polar with shizoid features. Or you can go to one and get labeled a unipolar depressive and another and be labeled a hysteric with borderline features. The labels are all but useless in the clinical sense of the word. The shrink is still working in a subjective realm where his/her education, attitude, personal viewpoints, age and other factors play a larger role in the diagnosis than the labels.

 

[3113]

Have you heard of Temple Grandin? I saw a bio about her recently and was deeply impressed with her thoughts on autism

I did see that bio, it was very well done. But there are two problem with bringing her up. First, Temple was diagnosed as Autistic looooong before Aspergers was being used as a label. Dr. Asperger had created the diagnosis by 1954, but it wasn't until something like 1982 that it was dug up and applied, and started getting widely known, and that includes widely known among psychiatrists. So there's no way she would have been labeled anything other than autistic.

She actually might have been labeled as Asperger's given how well she was able to eventually integrate and make a place for herself in society. Which is the second thing: her bio pretty much supports the argument for getting rid of the Asperger's label in that she aptly demonstrates that Autism is a spectrum that ranges from extreme cases that can't be integrated into society, to those who are almost completely integrated and viewed as nothing more than a little eccentric.

I can tell you that when I watched that movie, I saw her do things I do, too. Not all, of course, but in some instances the only difference between her and me was a matter of degree. That includes, by the way, her remarkable photographic memory, which I (alas? thank god?) do not have. If Temple is, for all intents and purposes, and extreme version of me, and she's considered autistic, then why should I get a different label?

 

[voluptuary_manque]

As another (well-integrated and successful) Aspie, I am somewhat torn, too. Certainly there is more cache' in being Aspie than there is in being autistic, but is it clinically useful to separate us out? God knows!

 

[3113]

but is it clinically useful to separate us out?

Well. We are special

 

[stephen55]

A diagnosis in psychiatry is made over time and subject to revision....

The problem is that the labels and the descriptions of the disorders these labels signify are extremely vague. You can go to one shrink and be labeled a schizophrenic and another one and get labeled a bi-polar with shizoid features. Or you can go to one and get labeled a unipolar depressive and another and be labeled a hysteric with borderline features. The labels are all but useless in the clinical sense of the word. The shrink is still working in a subjective realm where his/her education, attitude, personal viewpoints, age and other factors play a larger role in the diagnosis than the labels.

Read the current edition of DSM, the DSM -IV-TR. You'll see a very clear lack of vagueness. (How's that for a turn of a phrase?) That individual psychiatrists might get confused by failing to do an adequate psychiatric exam or jumping to a quick conclusion is not the fault of the DSM-IV-TR and it won't be the fault of the upcoming DSM-V. When the DSM-VI comes along, there will still be lazy shrinks and there still will be patients with an overlap of psychopathology.

A patient with bi-polar disorder in full blown mania is easily misdiagnosed as schizophrenic. That is, until a good shrink looks into the patients history, treats the mania and waits for a while. I was once (correctly) diagnosed as having an acute lumbar disk herniation. I don't have that any more. It doesn't mean that the initial diagnosis was wrong.

Hysteria is not a diagnosis, even in psychiatry. Confusing unipolar depression with borderline personality disorder...ain't gonna happen.

The labels and the diagnostic criteria in the DSM-IV-TR are not vague. Or as my old professor of psychiatry would have said, "The labels and the diagnostic criteria in the DSM-III are not vague. Period. Paragraph."

You can always tell a good shrink by the care she or he takes with examining the patient and the resistance to make a snap judgment. When I was working as a GP and I admitted a patient to the psychiatric ward from emergency, I would always follow up and see how the patient was doing, even if I was not directly involved with the patient's care. Asking, a day later, "What's wrong with so and so?" and getting a definitive answer was rare. It was usually, "Damned if I know. Ask me again in a week or two."

 

[voluptuary_manque]

Well. We are special

absolutely, just ask us!

 

[laurafairlie]

I did see that bio, it was very well done. But there are two problem with bringing her up. First, Temple was diagnosed as Autistic looooong before Aspergers was being used as a label. Dr. Asperger had created the diagnosis by 1954, but it wasn't until something like 1982 that it was dug up and applied, and started getting widely known, and that includes widely known among psychiatrists. So there's no way she would have been labeled anything other than autistic.

She actually might have been labeled as Asperger's given how well she was able to eventually integrate and make a place for herself in society. Which is the second thing: her bio pretty much supports the argument for getting rid of the Asperger's label in that she aptly demonstrates that Autism is a spectrum that ranges from extreme cases that can't be integrated into society, to those who are almost completely integrated and viewed as nothing more than a little eccentric.

I can tell you that when I watched that movie, I saw her do things I do, too. Not all, of course, but in some instances the only difference between her and me was a matter of degree. That includes, by the way, her remarkable photographic memory, which I (alas? thank god?) do not have. If Temple is, for all intents and purposes, and extreme version of me, and she's considered autistic, then why should I get a different label?

I understand what you're saying. It's always a sticky thicket to start rearranging and re-labeling things that are as difficult to classify as human behaviors. I wouldn't want to be in the position to make those decisions. However, I will say that I have the profoundest admiration for Temple and also the profoundest respect and sympathy for the dignity of Sabine (in the other documentary I mentioned). Sabine falls far lower on the spectrum and is barely able to get through the day without assistance. She lives in a group home and requires assistance with most aspects of her daily life. The distance between Temple and Sabine is quite wide, so there definitely is a continuum.

I am personally fascinated by all minds and most particularly by minds that follow pathways that are sometimes uncharted. The levels of abstraction and artistic potential are beautiful things to witness.

 

[3113]

Hm. Maybe we Aspies should write a song about this. A blues tune?

(Guitar riff)
"Well the DSM...they don't wanna be con-fused--"
(Twang-twang)
"And that's why they done changed the diagnosis I used to use--"
(Strum, strum!)
"Ain't Aspie no longer, into Aus-tis-tic I've been moved--"
(Pluck, pluck, pluck, pluck)
"An that's why I'm singin' the Asperger's Bluuuues...."

Take t away, VM!

 

[laurafairlie]

Hm. Maybe we Aspies should write a song about this. A blues tune?

(Guitar riff)
"Well the DSM...they don't wanna be con-fused--"
(Twang-twang)
"And that's why they done changed the diagnosis I used to use--"
(Strum, strum!)
"Ain't Aspie no longer, into Aus-tis-tic I've been moved--"
(Pluck, pluck, pluck, pluck)
"An that's why I'm singin' the Asperger's Bluuuues...."

Take t away, VM!

Love it!

 

[voluptuary_manque]

Hm. Maybe we Aspies should write a song about this. A blues tune?

(Guitar riff)
"Well the DSM...they don't wanna be con-fused--"
(Twang-twang)
"And that's why they done changed the diagnosis I used to use--"
(Strum, strum!)
"Ain't Aspie no longer, into Aus-tis-tic I've been moved--"
(Pluck, pluck, pluck, pluck)
"An that's why I'm singin' the Asperger's Bluuuues...."

Take t away, VM!

*breaks out harmonica and starts a wailing solo . . . *

 

[Xelebes]

*starts doing a rocking shuffle*

 

[Stella_Omega]

*Pulls down a washboard and slips on some thimbles*

I can talk to strange people, and get around town,
I don't do that number thing, I ain't got it down
You never gonna see me flap my hands by my ears
I'm a highfunction aspie all the rest of my years

Okay, everybody!

But them doctors want to change the diagnosis they use
And that's why I'm singin the Asperger's blooooos

 

[laurafairlie]

*Pulls down a washboard and slips on some thimbles*

I can talk to strange people, and get around town,
I don't do that number thing, I ain't got it down
You never gonna see me flap my hands by my ears
I'm a highfunction aspie all the rest of my years

Okay, everybody!

But them doctors want to change the diagnosis they use
And that's why I'm singin the Asperger's blooooos

Wheeee! That's what I'm talkin' about.

 

[voluptuary_manque]

*Waaaaaaaaaaaaaah . . . huffahuffahuffa whoaoooooooooooh!*

 

[Huckleman2000]

You people are just weird.

 

[Stella_Omega]

You people are just weird.

See? SEE? THIS is what happens when the DSM takes our label away from us!

 

[stephen55]

The Asperger's Syndrome Blues
Loosely based on a song written by a fellow intern, back in my days at Mount St. Elsewhere General Hospital.

Was doing pretty good, I had a job that payed
Now I ain't had no sleep, in twenty-seven days
Showed up at my job, they said..
Boy, you must be confused.......
You can't do this no more
I got the.. Asperger's syndrome blues

My head was alright, wasn't on no meds
Woman by my side, I even had a few friends
There's a freight train outside..
Wonder where it's going to.......
Now I can't stay in this place
I got the.. Asperger's syndrome blues

Now it's three am, don't know what's happenin' next
Ain't gonna be sleep, and it ain't gonna be sex
My momma says to me Boy..
what you gonna do......
Can't say right now momma
I got the..Asperger's syndrome blues