Position of an "Asperger Association" about the DS

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TPE2
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04 Sep 2010, 7:36 pm

This is (a translated version of) the position of Asperger's Syndrome Association of my country about the new DSM.

Note that it is basically an association of parents (until very recently they presented themselves as an association for "parents, educators and friends of people with AS").

Quote:

The [Association], like similar organizations in other countries, follows with much attention the debate that it is happening in the scientific community about the so-called DSM-V.

The position of [Association] in this issue is the following:

Asperger’s Syndrome should remain in the autism spectrum, but with a differentiated diagnosis.

Only with a differentiated diagnosis will be possible to achieve a better efficacy at the level, namely, ot the training of social skills.

A person with AS has, in most of the cases, awareness of his difference, his “social maladjustment”, and can be helped to develop his cognitive potential, who is, in many cases, extraordinary, and, by other side, he can, with good directed support, try to surpass his obstacles.

People with AS don’t feel as fitting in a diagnosis of Autism. They see themselves as people aware if their difference, with ideas, tastes and opinions about life. In spite of being different of what is “standard”, they have opinion about most issues and about themselves; this not happen with autists, even high-functioning.

All work of [the association] has been in the sense of making society to understand and integrate the people with AS, and this work has giving good fruits. The society is understanding the difference (eve if in some cases small) between AS and autism, even high-functioning.

Having present that AS is the mildest level of autism, it is the conviction of [the association] that it should continue to defend the dignity, individuality and characteristics of each person with AS, being also this a reason to defend the maintenance of AS as a differentiated diagnosis.

What do you think?

My first opinion is that their vision of autism is totally wrong.

Last edited by TPE2 on 05 Sep 2010, 7:29 am, edited 1 time in total.

Meow101
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04 Sep 2010, 8:29 pm

While I agree that their vision of autism is wrong, I can't help but agree that the AS diagnosis should be preserved. My reasons have more to do with the fact that I have concerns that if the AS diagnosis is eliminated, clinicians will also have the same "mental picture" of autism and see an AS child or adult and rather than "lump them" with their mental picture of an autistic person, call them NT and "just quirky" or 'just odd' and open up the door to the idea that they can change if they just try hard enough. Having lived with that idea for over 40 years, I don't like the idea that it could become rampant again.

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leejosepho
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04 Sep 2010, 8:57 pm

TPE2 wrote:

A person with AS has, in most of the cases, awareness of his difference, his “social maladjustment”, and can be helped to develop his cognitive potential, who is, in many cases, extraordinary, and, by other side, he can, with good directed support, try to surpass his obstacles.

That sounded good to me the first time through, but then not after pondering it a little longer. The idea of "can be helped to develop his cognitive potential" does not exclusively belong to people with Asperger's Syndrome. The outcomes of autistic people receiving help are not all going to be the same, but the fact of some people eventually reaching higher levels externally should never give them preferential treatment.

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Dnuos
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04 Sep 2010, 9:39 pm

On a less serious note, I'd quite like it if they changed the name of "Asperger's" to something else~

Anyways, I'd agree that their vision of autism is wrong, and yet, that the diagnosis should stay in. Worst case scenario, they should just lump it in with high-functioning autism... isn't the only difference between HFA and AS, a difference in IQ? Er...

Callista
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05 Sep 2010, 12:02 am

Quote:

Having present that AS is the mildest level of autism, it is the conviction of [the association] that it should continue to defend the dignity, individuality and characteristics of each person with AS, being also this a reason to defend the maintenance of AS as a differentiated diagnosis.

This is wrong. This is very wrong.

Do they have any idea how offensive that is? "Let's defend the dignity and individuality of people with Asperger's... by stating that they're NOT LIKE ALL THOSE OTHER AUTISTIC PEOPLE?"

I'm sorry. This is just wrong. I am AUTISTIC. I don't care if it's Asperger's type or some other. I am not going to "defend my dignity" by pushing other human beings away and refusing to associate with them.

Plus, Asperger's is NOT the mildest kind of autism. It is merely the kind with the fewest symptoms.

I apologize for the allcaps, but I'm not removing them. My original impulsive reply contained some... interesting language.

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jec6613
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05 Sep 2010, 12:27 am

Indeed, some of my symptoms are far more severe than somebody with Autism as a diagnosis has, yet because I had no cognative delay I have AS.

The DSM is a manual designed by the US Army in the post WWII era and its diagnostic criteria are based on the services someone is likely to require rather than any underlying neuropathy. The services required by someone with AS versus somebody with Autism versus somebody with PDD-NOS are usually quite similar, so they've been and are being lumped together. Keep in mind though, that you must also include an ICD-10 diagnostic code for medicare/medicade/any other government sponsored program, even in the US, and at least for now AS will remain in the ICD-10.

Perhaps the Asperger label will remain as a person with Autism who does not have cognative impairment, but it will no longer be a seperate syndrome listed in the DSM-5, and frankly I don't care either way. My medical alert card doesn't list, "Asperger Syndrome," it simply says, "Autism Spectrum," because the specifics are just not useful to a medical professional unless I can articulate my individual differences (and if they're reading that card, then I can't), as every person on the spectrum is very different.

PS: It's the DSM-5, not the DSM-V. They changed it from Roman to Arabic numerals after the DSM-IV.

MrXxx
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05 Sep 2010, 12:40 am

leejosepho wrote:

TPE2 wrote:

Well said. I couldn't agree more.

Quote:

Having present that AS is the mildest level of autism

Say what? This makes it seem as though AS is always milder than Autism, which simply is not true.

I don't really care anymore about the proposed change. I did at one time until I realized everything that AS is, will be encompassed within the ASD description proposed for DSM-V. It's just a man's name.

When you come right down to it, I've had a problem for a while now with the term Autism itself being used. Some other term should have been coined from the very beginnings of the DSM. The fact that they did use it has historically caused far too much confusion, and still does.

But who am I to buck almost 60 years of history? :roll:

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jec6613
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05 Sep 2010, 12:54 am

To bring the sources into the discussion, here's the document announcing the proposed changes:

http://www.dsm5.org/Newsroom/Documents/ ... 202.05.pdf

And the important bit from it:

Quote:

The recommended DSM-5 draft criteria for autism spectrum disorders include a new assessment of symptom severity related to the individual’s degree of impairment. The draft criteria also specify deficits in two categories: 1) social interaction and communication (e.g., maintaining eye-to-eye gaze, ability to sustain a conversation and peer-relations) and 2) the presence of repetitive behaviors and fixated interests and behaviors. Additionally, in recognition of the neurodevelopmental nature of the disorder, the criteria require that symptoms begin in early childhood. Clinicians must take into account an individual’s age, stage of development, intellectual abilities and language level in making a diagnosis.

“The recommendation of a new category of autism spectrum disorders reflects recognition by the work group that the symptoms of these disorders represent a continuum from mild to severe, rather than being distinct disorders,” said Dr. Cook. In addition to specifying a range of severity of ASD, the criteria will include description of the individual’s overall development, course (e.g. regression), and language. “We expect that the proposed changes will improve the sensitivity and specificity of the criteria for autism spectrum disorders, so that clinicians may be able to more accurately diagnose these disorders.”

MrXxx
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05 Sep 2010, 1:02 am

The most important document is this one:

http://www.dsm5.org/ProposedRevisions/P ... spx?rid=94

Quote:

Must meet criteria 1, 2, and 3:

1. Clinically significant, persistent deficits in social communication and interactions, as manifest by all of the following:

a. Marked deficits in nonverbal and verbal communication used for social interaction:

b. Lack of social reciprocity;

c. Failure to develop and maintain peer relationships appropriate to developmental level

2. Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following:

a. Stereotyped motor or verbal behaviors, or unusual sensory behaviors

b. Excessive adherence to routines and ritualized patterns of behavior

c. Restricted, fixated interests

3. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

It encompasses AS, and makes it far less confusing to diagnose. When you boil it all down, it's just a word. Practices and diagnoses will continue as usual. AS has been part of the Autistic spectrum for many years already. If you have AS, you have Autism. It's not a big deal.

Meow101
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05 Sep 2010, 1:02 am

The problem I see with this:

"The recommended DSM-5 draft criteria for autism spectrum disorders include a new assessment of symptom severity related to the individual’s degree of impairment. The draft criteria also specify deficits in two categories: 1) social interaction and communication (e.g., maintaining eye-to-eye gaze, ability to sustain a conversation and peer-relations) and 2) the presence of repetitive behaviors and fixated interests and behaviors. Additionally, in recognition of the neurodevelopmental nature of the disorder, the criteria require that symptoms begin in early childhood. Clinicians must take into account an individual’s age, stage of development, intellectual abilities and language level in making a diagnosis.

“The recommendation of a new category of autism spectrum disorders reflects recognition by the work group that the symptoms of these disorders represent a continuum from mild to severe, rather than being distinct disorders,” said Dr. Cook. In addition to specifying a range of severity of ASD, the criteria will include description of the individual’s overall development, course (e.g. regression), and language. “We expect that the proposed changes will improve the sensitivity and specificity of the criteria for autism spectrum disorders, so that clinicians may be able to more accurately diagnose these disorders.”

is that there is a certain vagueness there that I think lends itself to dismissal of many who are now diagnosed with AS as "not bad enough" to be diagnosed with autism. While I disagree with that view of autism, I am concerned that this is a step backward. Many people have apprehension about "labeling children" and my concern is that when they conjure up their mental picture of autism they will hesitate and be more willing to lump AS children in with the NT population than with the autistic population, thus subjecting them to the pressure to "change".

Not that there's a heck of a lot I can do about it...

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Meow101
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05 Sep 2010, 1:07 am

MrXxx wrote:

The most important document is this one:

http://www.dsm5.org/ProposedRevisions/P ... spx?rid=94

Quote:

I know that...you know that...but my concern is that someone with label-phobia is going to look at these criteria and hem and haw and go "well...how bad do you have to be to have *marked* deficits"? And what's "excessive" adherence to routines? Well, this kid has one friend, he has appropriate peer relationships....and meanwhile the kids are bullying him at school, he's not "reading" other people the way NTs are, he's getting good grades but can't stop obsessing....you know what I mean...

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MrXxx
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05 Sep 2010, 1:23 am

Meow101 wrote:

The problem I see with this:

1) social interaction and communication (e.g., maintaining eye-to-eye gaze, ability to sustain a conversation and peer-relations)

a. Marked deficits in nonverbal and verbal communication used for social interaction:

Meow101 wrote:

2) the presence of repetitive behaviors and fixated interests and behaviors.

a. Stereotyped motor or verbal behaviors, or unusual sensory behaviors

Meow101 wrote:

Additionally, in recognition of the neurodevelopmental nature of the disorder, the criteria require that symptoms begin in early childhood. Clinicians must take into account an individual’s age, stage of development, intellectual abilities and language level in making a diagnosis.

I don't see where the problem lies with this since AS has been considered to be by most clinicians as present from birth anyway. It should have been there to begin with, and it's just there from the former Autism criteria of DSM IV.

Quote:

“The recommendation of a new category of autism spectrum disorders reflects recognition by the work group that the symptoms of these disorders represent a continuum from mild to severe, rather than being distinct disorders,” said Dr. Cook. In addition to specifying a range of severity of ASD, the criteria will include description of the individual’s overall development, course (e.g. regression), and language. “We expect that the proposed changes will improve the sensitivity and specificity of the criteria for autism spectrum disorders, so that clinicians may be able to more accurately diagnose these disorders.”

I couldn't agree more.

Meow101 wrote:

is that there is a certain vagueness there that I think lends itself to dismissal of many who are now diagnosed with AS as "not bad enough" to be diagnosed with autism. While I disagree with that view of autism, I am concerned that this is a step backward. Many people have apprehension about "labeling children" and my concern is that when they conjure up their mental picture of autism they will hesitate and be more willing to lump AS children in with the NT population than with the autistic population, thus subjecting them to the pressure to "change".

This is exactly what I originally thought too, but if you look very carefully at the criteria, nothing is being lost at all. Everything that was in DSM-IV is still there. Some of it is just lumped into a simpler broader description. I don't think anyone will be missed by this. In fact, if anything, I think many more will be found, because the DX system is so much less confusing.

MrXxx
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05 Sep 2010, 1:29 am

Meow101 wrote:

Is there a difference between "marked deficits" (DSM V) and "marked impairment" (DSM IV)?

"excessive adherence" (DSM V), from "apparently inflexible" (DSM IV)? Both seem equally as ambiguous to me. How "apparent" does it need to be? That's what we have now.

EDIT: BTW, believe me, I had all the same doubts about this thing when I first came here to WP. I wish I could remember who it was, but one really well versed user spent quite a bit of time clearing it up for me. I had a huge problem with it, and a half hour later I didn't anymore.

jec6613
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05 Sep 2010, 2:31 am

MrXxx wrote:

Meow101 wrote:

The problem I see with this:

1) social interaction and communication (e.g., maintaining eye-to-eye gaze, ability to sustain a conversation and peer-relations)

a. Marked deficits in nonverbal and verbal communication used for social interaction:

I think here is the single biggest issue I have, is that they're moving from an or to an and situation, where deficits in both verbal and nonverbal must exist. There are normally both of them, but in some people with diagnosed AS they have problems with the nonverbal but not the verbal.

Otherwise, I really honestly don't mind the change at all. I'm just nitpicking the diagnostic criteria.

Meow101
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05 Sep 2010, 10:07 am

jec6613 wrote:

MrXxx wrote:

Meow101 wrote:

The problem I see with this:

1) social interaction and communication (e.g., maintaining eye-to-eye gaze, ability to sustain a conversation and peer-relations)

a. Marked deficits in nonverbal and verbal communication used for social interaction:

Exactly. AS specifically excludes people with language delays. My verbal skills are *fine*, better than fine, in fact I have unusually good aptitude for language when not applied to emotional things or communicating anything other than facts. Yet when "reading" people, communicating emotion, and the like, sometimes I cannot even come up with words or understand what someone is trying to communicate. It's caused me so much grief in my life I can't even begin to describe it, which is why you'll *never* find me referring to AS as a "gift". I don't see myself reflected in these new criteria, which frightens me for the children of the future who will fall through the cracks and end up like me....

~Kate

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leejosepho
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05 Sep 2010, 11:03 am

Callista wrote:

Quote:

No such statement has been made, and we all know there are no two people who are identical anyway. Then, the idea of "defend the dignity and individuality of people with Asperger's" can have different meanings within different contexts. So then, and at least on the surface or at first glance, I think what we first have here is a translated statement now subject to at least two levels of interpretation (the translator's and our own) after being made by some grass-level people we do not even know.

Callista wrote:

I am AUTISTIC. I don't care if it's Asperger's type or some other. I am not going to "defend my dignity" by pushing other human beings away and refusing to associate with them.

Nobody has suggested that. I think they are looking at a "defense of dignity" within the autist's world (within society) overall.

What I think we have here is not a statement from some people who are trying to be selective or exclusive, but simply a poorly-written one from some feet-on-the-ground people trying to do something for the sake of their own children and others like ourselves.

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