A Powerful Identity, a Vanishing Diagnosis

[snopes]

Much of the growing prevalence of autism, which now affects about 1 percent of American children, according to federal data, can be attributed to Asperger’s and other mild forms of the disorder. And Asperger’s has exploded into popular culture through books and films depicting it as the realm of brilliant nerds and savantlike geniuses.

But no sooner has Asperger consciousness awakened than the disorder seems headed for psychiatric obsolescence. Though it became an official part of the medical lexicon only in 1994, the experts who are revising psychiatry’s diagnostic manual have proposed to eliminate it from the new edition, due out in 2012.

http://www.nytimes.com/2009/11/03/he...3asperger.html

[Malruhn]

So the only thing that keeps a person from being diagnosed with slight autism vice Asperger's is OPINION?!?! That sounds screwy! I had thought that there were legitimate differences between the two.

This is sure to cause a lot of hate and discontent in the Aspie community, being forced into the autistic community.

[AnglRdr]

Originally Posted by Malruhn

So the only thing that keeps a person from being diagnosed with slight autism vice Asperger's is OPINION?!?! That sounds screwy!

I don't think that is particularly accurate. The DSM IV has this criteria for Asperger's:

A. Qualitative impairment in social interaction, as manifested by at least two of the following:
(1) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
(2) failure to develop peer relationships appropriate to developmental level
(3) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
(4) lack of social or emotional reciprocity
B. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
(1) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(2) apparently inflexible adherence to specific, nonfunctional routines or rituals
(3) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
(4) persistent preoccupation with parts of objects
C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.
D. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).
E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.
F. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.

And the code, 299.80, puts it as a subset, as it were of 299.00, which is Autism. Autism, itself, is a spectrum diagnosis, and Asperger's is at one end of the spectrum.

And the criteria for Autism are:[quote](I) A total of six (or more) items from (A), (B), and (C), with at least two from (A), and one each from (B) and (C)

• (A) qualitative impairment in social interaction, as manifested by at least two of the following:
  • 1. marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
    2. failure to develop peer relationships appropriate to developmental level
    3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people, (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
    4. lack of social or emotional reciprocity ( note: in the description, it gives the following as examples: not actively participating in simple social play or games, preferring solitary activities, or involving others in activities only as tools or "mechanical" aids )
  (B) qualitative impairments in communication as manifested by at least one of the following:
  • 1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
    2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
    3. stereotyped and repetitive use of language or idiosyncratic language
    4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
  (C) restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least two of the following:
  • 1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
    2. apparently inflexible adherence to specific, nonfunctional routines or rituals
    3. stereotyped and repetitive motor mannerisms (e.g hand or finger flapping or twisting, or complex whole-body movements)
    4. persistent preoccupation with parts of objects

(II) Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:

• (A) social interaction
  (B) language as used in social communication
  (C) symbolic or imaginative play

(III) The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder

I had thought that there were legitimate differences between the two.

So there are definite differences, the most significant likely would be communication.

This is sure to cause a lot of hate and discontent in the Aspie community, being forced into the autistic community.

They are already part of the autistic community, though.

From the article:

The proposed changes to the autism category are part of a bigger overhaul that will largely replace the old “you have it or you don’t” model of mental illness with a more modern view — that psychiatric disorders should be seen as a continuum, with many degrees of severity. The goal is to develop “severity measures within each diagnosis,” said Dr. Darrel A. Regier, research director at the American Psychiatric Association and vice chairman of the diagnostic manual’s task force.

To be honest, it does seem like this new single diagnosis of Autism Spectrum Disorder, does exactly the opposite of what he proposes, and, in fact, it would lead to a "you have it or you don't," whereas, the distinction within ASD for Asperger's seems to fill the desire for seeing the spectrum as such.

[Lainie]

I wonder if this would be an issue if there wasn't such a stigma regarding psychiatric illness. Many non-psychiatric illnesses exist across a spectrum of severity -- asthma, for example.

[DawnStorm]

IMO this redefinition makes sense. I cite depression as an example. I have heard that there is a condition known as dysthymia (sp?), which is like depression-lite. IIRC the criteria for dysthymia and full-blown clinical depression are the same up to a point. I think clinical depression has more criteria.
Then on the other end, there are severe cases of depression that do not respond to meds and talk therapy and the person has to resort to electro-shock therapy. Under strict supervision, it is effective or so I've heard.
To me, it makes sense that there would be an autism spectrum as well ranging from 'you need a lot of help' to 'you only need help with some things'.
JMO though.
I do think Lainie is right regarding the persistent stigma of any psych condition.

[Troodon]

Originally Posted by Malruhn

So the only thing that keeps a person from being diagnosed with slight autism vice Asperger's is OPINION?!?! That sounds screwy! I had thought that there were legitimate differences between the two.

This is sure to cause a lot of hate and discontent in the Aspie community, being forced into the autistic community.

A little off topic, but I chuckled at the term "Aspie community". I don't do "community". (To each his own, of course.)

[AnglRdr]

I think the difference between Dysthymic Disorder and, say, Major Depressive Disorder, is the length of time it lasts. Dysthymic d/o is a very long-term condition, whereas, MDD is fairly short-term. In my limited experience, MDD seems to be a recurrent condition, whereas Dysthymic d/o seems to last forever.

[Sister Ray]

Originally Posted by Malruhn

So the only thing that keeps a person from being diagnosed with slight autism vice Asperger's is OPINION?!?! That sounds screwy! I had thought that there were legitimate differences between the two.

This is sure to cause a lot of hate and discontent in the Aspie community, being forced into the autistic community.

No. Asperger's syndrome has as a requirement that the individual not have a speech delay in childhood. Some who are called "Asperger's" have in fact had such a speech delay and should be diagnosed with autistic disorder or PDD-NOS. It's become an assumption that anyone who has average or above-average intelligence must be Asperger's; autistic disorder to those people can only occur with mental retardation. Of course, this isn't the case, but it's ingrained in some people's minds.

Sister "and of course there's the 'anyone with asperger's is not really autistic' crowd to deal with..." Ray

[Lainie]

Originally Posted by Troodon

A little off topic, but I chuckled at the term "Aspie community".

Now that you mention it, that is a funny term.

Although I suppose it's intended to include family members of people with Asperger's as well.

[Bryan With a 'Y']

Originally Posted by Malruhn

So the only thing that keeps a person from being diagnosed with slight autism vice Asperger's is OPINION?!?!

Yep. The educated kind of opinion we like to call clinical judgment.

There are some medical diagnoses, like a broken bone or a pathogen we can test for and see, that are objective and consistent. The DSM doesn't work that way. Every disorder in it is a 'syndrome,' defined not because we know what it is, but because statistically we see these sets of symptoms recur. There's overlap and it's messy, and any of these syndromes, when we eventually figure out the biological substrate, could ultimately turn out to actually be several different conditions. Or several of them could turn out to be different expressions of a single underlying cause.

So defining a given syndrome, or assigning a patient to one versus another, is more a matter of what's useful than what's 'true.' It's educated opinion, but it's all opinion. And so far, it's the best thing we've got.

[snoozn]

My middle daughter is high functioning autistic and I suspect I have undiagnosed Asperger's. I think it sounds like a good idea for the most part. I did have to chuckle at

But if people are told they should be evaluated for autism, he went on, “they will say: ‘No, no, no. I can talk. I have a friend. What a ridiculous suggestion!’ So we will miss the opportunity to assess people.”

But I hope it will be the opposite, that having the "cool" aspies on the spectrum will make HFA people feel less weird about their autism. My daughter and I were just talking about the differences the other day after discussing Jon Robison's book. I will definitely have to tell her about this article. Sometimes when things go really well or really badly she will either credit or blame her autism, and she's always interested in hearing about autism and autistic people in the news.

Whether or not putting Asperger's into the autism spectrum is a good idea, I think it's good that they're going to change the stupidity of only looking at a person's "most serious" problem.

[RivkahChaya]

Originally Posted by Lainie

I wonder if this would be an issue if there wasn't such a stigma regarding psychiatric illness. Many non-psychiatric illnesses exist across a spectrum of severity -- asthma, for example.

First, autism, PDD-NOS, Rett's, Asperger's syndrome, childhood disintegretive disorder, mental retardation, learning disabilities, Tourette's Syndrome, and other DDs I may have forgotten, are not psychiatric illnesses, they are neurological disorders. They don't respond to psychiatric medications (other than to the extent that sometimes such meds can sedate a person out of exhibiting many of the most noticable behaviors), or talk therapy (expect to the extent that some children with these disorders get teased, so they have trauma as a result, not as the cause, of the disorder).

It's an important distinction, because true psychiatric disorders are usually either organic neuro-chemical imbalances, extreme stress reactions, or caused by induced chemical imbalances, like the long-term problems experienced by drug users or alcoholics who are sober, but who are still having problems because their brains may need years to reconfigure themselves to a drug-free state.

Anyway, when I was working in an agency that assisted adults who had been developmentally disabled children, the term Asperger's was used to refer to a specific kind of high functioning autism. One of the criteria that was particular to Asperger's was clumsiness. Nearly all the Asperger's people had had occupational therapy, and still had problems with things like tying their shoes, and had poor handwriting. They tended to be hard workers when they had a project that interested them, though, and even when there was simply something in it for them, they could do pretty well, because they were good at some abstract things like delayed gratification, and "job = money = things you can buy that you want." High-functioning autistics generally had normal or even very good coordination, but even when they were very intelligent, and had good language, had trouble with concepts that required them to think temporally (I do chore I hate every day for a two weeks; then I can go to King's Island).

However, those things, which I thought were really important distinctions, didn't make it into the DSM-IV.

[AnglRdr]

FWIW, our agency lists all of those Rivkah noted as mental impairments. Neurological disorders, for purposes of my work, are those which involve insult to the nervous system.

[Lainie]

Originally Posted by RivkahChaya

First, autism, PDD-NOS, Rett's, Asperger's syndrome, childhood disintegretive disorder, mental retardation, learning disabilities, Tourette's Syndrome, and other DDs I may have forgotten, are not psychiatric illnesses, they are neurological disorders. .

My mistake -- and actually I know better. But I think there is a stigma attached to neurological disorders, too -- to anything that's not obviously physical.

[RivkahChaya]

Originally Posted by AnglRdr

FWIW, our agency lists all of those Rivkah noted as mental impairments. Neurological disorders, for purposes of my work, are those which involve insult to the nervous system.

Disorders of brain structure are neurological impairments, because the brain is a big lump of nerve cells. It's a great big part of the nervous system. What does your agency call cerebral palsy? Multiple sclerosis? Those originate in the brain, and are considered neurological disorders. Is a stroke victim neurologically impaired?

[AnglRdr]

CP and MS and CVAs are neurological disorders, because they involve actual insults to the nervous system. MR, PDD, autism, et cetera, are not able to be identified as insults to the nervous system.