DSM5, Will some of us loose the diagnosis?

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Ai_Ling
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08 Sep 2011, 4:11 pm

As I look more into the dsm 5, since they are eliminating Asperger's diagnosis does this mean some of us on the milder end of aspergers will lose the overall diagnosis? Because while studying the new DSM5 classifications and the Aspergers classifications. The threshold of an autism disorder is higher.

Quote:
Autism DSM 5 Criteria:
Must meet criteria A, B, C, and D:

A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:
1. Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,
2. Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.
3. Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people

B. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:
1. Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).
2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).
3. Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
4. Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).


Quote:
Aspergers:

(I) Qualitative impairment in social interaction, as manifested by at least two of the following:
(A) 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
(B) failure to develop peer relationships appropriate to developmental level
(C) a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)
(D) lack of social or emotional reciprocity

(II) Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:
(A) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(B) apparently inflexible adherence to specific, nonfunctional routines or rituals
(C) stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
(D) persistent preoccupation with parts of objects


In catagory I(or A), a person must meet all the social deficits criteria whereas in Aspergers, a person only had to meet 1/2. In category II(or B), a person must meet 2 out of the 4 whereas in Aspergers a person must only meet 1. The autism one is mostly the same except the symptoms are more heavily elaborated on. The only real difference is in Catagory II, D is removed and is replaced with sensitivity issues. What I see, is that their raising the threshold to be diagnosed with an ASD. So many of us mild aspies who were diagnosed under the DSM 4 are at risk of loosing our diagnosis?

Im gonna see Learning Disorder specialist soon out of the same center which I was originally diagnosed. Im going to ask them if I risk loosing my diagnosis. This is a concern for me, cause Im just starting the job world and right now I qualify for job assistant services(and accomidations) and I dont want to loose my access to this.



btbnnyr
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08 Sep 2011, 4:23 pm

I don't think that people will be losing their existing diagnoses. The new criteria will be used to make new diagnoses, but they can't expect all the already-diagnosed people to be re-evaluated according to the DSM V.



League_Girl
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08 Sep 2011, 4:32 pm

Wouldn't any mild aspies meet the new DSM V criteria?

If I don't meet it, I might just say I have Beth syndrome (as a joke) and label myself as having autistic tenancies and learning issues and anxiety.



gramirez
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08 Sep 2011, 4:51 pm

You won't lose a diagnosis, changes in criteria only affect future diagnoses.


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gothicfeline
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08 Sep 2011, 4:52 pm

Yesterday I asked my therapist about the DSM V rumors. Specifically, I asked that if they do change the way ASDs work if that means my diagnosis will change. According to her, all old diagnoses will stay the same. The new DSM will only be addressing new diagnoses.



Ai_Ling
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08 Sep 2011, 5:55 pm

Dont people get reevaluated here and there to see how they progress? Im not sure how this goes, I'm probably going in for a reevaluation within the next couple of weeks. I was diagnosed Dec of 2006. So its been almost 5 yrs since Ive been diagnosed. My life has changed very significantly since. Tho much is due to being a young adult and being forced to grow up an extremely rapid rate.



Ettina
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08 Sep 2011, 6:09 pm

The new criteria actually fit me better than the old ones, I'm apparently shifting from PDD NOS to clearly autistic. My impression is most of the autistics on WP are more obviously autistic than me, so I doubt many of you will fail to meet the new criteria.

By the way, it's a good idea to ask someone you know if the criteria fit you instead of just self-rating. I thought some things didn't describe me that actually do, according to my parents.



SyphonFilter
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08 Sep 2011, 7:19 pm

It doesn't make sense to have a diagnosis of AS one day and suddenly not have it the next.



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08 Sep 2011, 7:29 pm

Nope. I think it's just going to be reqonised as HFA or ASD. I personaly wish they would have done away with the term "Asperger's" a long time ago because it sounds too much like "ass burgers" and people are naturaly going to want to poke fun and be mean about it. Most people, even doctors don't have a clue about AS to begin with but are famalair with autism. I personaly can't see what's so wrong with HFA or ASD.


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Verdandi
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08 Sep 2011, 7:35 pm

Just from hearing what my therapist had to say today ("Your brain does not work like everyone else's" was a quote - and she didn't mean it pejoratively, rather we were talking about our communication issues) and what my diagnostic report said, I think I fit the criteria easily. All seven out of seven.

I have misgivings but on the surface it looks like it'll be easy for most to meet the new criteria, despite needing to meet more of them.



aghogday
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08 Sep 2011, 7:40 pm

Aspergers and Autism seem to fit perfectly in the new criteria to me. I didn't realize until recently that PDD NOS is presently, statistically, the majority disorder diagnosed on the Autism Spectrum, as reported by Wiki.

Current DSMIV requirements for PDD NOS

“a severe and persistent impairment in the development of reciprocal social interaction associated with impairment in either verbal or nonverbal communication skills or with the presence of stereotyped behavior, interests and activities”

I found some recent research related to the working groups that are revising the DSMV.

Research was done on a group of children currently diagnosed with PDD NOS and 64 out of 66 were missing the required Repetitive or stereotyped behavior, interest and activities element found in the new ASD criteria in the DSMV, but not required for a diagnosis of PDD NOS in the DSM IV. This issue was reported to the DSMV working group.

http://crackingtheenigma.blogspot.com/2 ... r-new.html

Quote:

Social Communication Disorder - A new category in DSM 5
A couple of weeks ago, I posted on a paper by Mandy and colleagues, which aimed to better characterise kids meeting current (DSM IV-TR) criteria for PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified). Their conclusion was that most of these kids had social and communication difficulties but not the repetitive and stereotyped behaviours (RSBs) that would have given them a full 'autistic disorder' diagnosis.

Under proposed revisions to diagnostic criteria (DSM 5), PDD-NOS is supposed to be subsumed by a broader category of "Autism Spectrum Disorder". However, Mandy et al. pointed out that the proposed criteria for Autism Spectrum Disorder require evidence of RSBs, and so would actually exclude most of their PDD-NOS kids.

In a new paper, Prof Francesca Happe, a member of the DSM-5 working group, outlines the rationale for the proposed DSM 5 changes affecting autism spectrum disorders. The paper overlaps to a large extent with her excellent blogpost on the SFARI website. However, she also references the Mandy et al. paper, acknowledging that many individuals with PDD-NOS may miss out on an Autism Spectrum Disorder diagnosis because they don't have repetitive or stereotyped behaviours.

Here's what she has to say:
“Recently, Mandy et al. raised concerns that many children currently receiving [a PDD-NOS] diagnosis will not meet proposed DSM-5 criteria for ASD because of a lack of restricted / repetitive behaviour. For these children, the proposed new neurodevelopmental diagnostic category of social communication disorder will be relevant. This diagnosis, it is hoped, will more clearly and accurately capture the pattern of impaired social and communication abilities seen in the largest subgroup now labeled PDD-NOS”.

On the DSM 5 website, the new disorder is defined more formally:
"Social Communication Disorder (SCD) is an impairment of pragmatics and is diagnosed based on difficulty in the social uses of verbal and nonverbal communication in naturalistic contexts, which affects the development of social relationships and discourse comprehension and cannot be explained by low abilities in the domains of word structure and grammar or general cognitive ability."

Effectively, SCD seems to be official recognition for what researchers and practitioners have previously referred to as "Pragmatic Language Impairment" rather than a replacement for PDD-NOS. The emphasis is very much on the communication side of things, particularly conversation skills, with a suggestion that social difficulties are a secondary consequence of impaired communication. That's my interpretation at least.

As Happé suggests, it seems likely that many people who currently reside in the PDD-NOS pigeon hole would meet the SCD criteria. However, I'm not sure that the criteria necessarily capture the extent of the issues they face. As Will Mandy mentioned in his comment to my post:
"Our clinical experience is that children with PDD-NOS (i.e. mainly individuals with severe autistic social-communication difficulties, but without high levels of repetitive and stereotyped behaviours) are similar to those with a full autism diagnosis in terms of their functional impairment."
How this will all play out in practice in terms of access to services and interventions, I don't pretend to know. I'd certainly welcome comments from people better informed than I.

Reference

Happé F (2011). Criteria, Categories, and Continua: Autism and Related Disorders in DSM-5. Journal of the American Academy of Child and Adolescent Psychiatry, 50 (6), 540-2 PMID: 21621137



This is still a work in progress, but if the statistics in the general population of people with PDD NOS, are anything like the numbers presented to the working group, of individuals diagnosed without Repetitive, Stereotypical Behaviors and Interests (RSB), there is a potential here for a significant impact on the statistics on Autism, as well as the people with PDD NOS without the DSMV Autism Spectrum Disorder RSB requirement.

It will be interesting to see how it all plays out, but considering the potential number of children diagnosed with PDD NOS without RSB's that receive services through schools, based on their Autism Spectrum diagnosis, I would think some kind of adjustment would have to be made to accommodate these children.

I'm not sure what kind of impact this will have on adults with PDD NOS, but diagnosed children, particularly those with PDD NOS are often monitored and evaluated on their symptoms, and are the lion share of statistics on the prevalence of Autism. The latest numbers provided by the CDC were restricted to 8 year olds, most of which were in special education classes.



Ai_Ling
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09 Sep 2011, 3:55 am

Ettina wrote:
By the way, it's a good idea to ask someone you know if the criteria fit you instead of just self-rating. I thought some things didn't describe me that actually do, according to my parents.


True, but my parents dont really understand all this clinical information besides my parents are highly biased in the idea that theres nothing wrong with me. My mom couldnt see the social deficits. I could try ask a close friend of mine whos a psychobiology major. I know she'd understand the clinical language. Tho my friend tends to use the same bias. I get told a lot by friends, that Im not any more different(weirder) then most people. There's always those people who are kind weird, and Im apparently not anymore weirder then weird NTs.

When I look closely at the DSM 5, I technically have all the social deficits in catagory A but I only think my symptoms are clinically significant in A1. But thats just my own opinion. In catagory B, I technically have 3 and 4. But for 4, my sensitivity issues are sooo mild, there not/rarely ever problematic. So I dont think thats a legit symptom.



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09 Sep 2011, 4:34 am

You shouldn't lose your current diagnosis but there may be an issue if you apply for services and they insist on you being reassessed. I think governments make their own rules about how to deal with this. The new criteria may not pick up current PDD-NOS and some mild AS in this case.


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SteveBorg
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09 Sep 2011, 6:18 am

I know this is a bit of a tangent, but I find it interesting that they included the sensory challenges many Aspies face. This isn't something I've seen in any prior criteria.


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Ravenclawgurl
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09 Sep 2011, 8:38 am

SteveBorg wrote:
I know this is a bit of a tangent, but I find it interesting that they included the sensory challenges many Aspies face. This isn't something I've seen in any prior criteria.


actually i think it was included in dsm III then taken out in either DSMIII-R or in DSM IV not sure which but im pretty sure taken out in DSM III-R



iSpy
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09 Sep 2011, 6:13 pm

No I do not think that people will be losing their existing diagnoses.

I have been tested 3 times.

1. 1988 Autism
2. 2009 diagnoses with Asperger's and a very high IQ. But That was Deleted
3. Retested due to error on the 2009 test and IQ test. I have Just Autism and not Asperger's. Due to a lot of stuff. :(
I know I will not be losing my existing diagnoses. :x

The 1988 one was put under the rug and but shows up in 2009. I forgot what DSM They say I was tested under back then. I do know they say I got 14 out of 16 and you had to have 8
After the last test I like to just put it all back under the rug and just not know. :!:


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