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How common is AS?

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Blueskygirl
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05 Sep 2011, 8:27 pm

Verdandi wrote:
Blueskygirl wrote:
Verdandi wrote:
And then there's this woman I know whose granddaughter has all the signs of autistic disorder, but because she'd had some ABA-type therapy before she was finally diagnosed, a psychiatrist diagnosed her with PDD-NOS instead, to reflect her "improvement."


Oh gosh. I just don't know what's going to happen to the PDD-NOS in a couple of years. Does everyone with a PDD-NOS label go get retested, or does it automatically become an autism diagnosis? This is confusing.


My understanding is that everyone who has a PDD diagnosis now (as in autistic disorder, asperger's syndrome, PDD-NOS, and childhood disintegrative disorder) will automatically have an ASD diagnosis. The assumption is that most people diagnosed with any of these already fits the autism criteria, and the distinctions are not actually helping so much as creating confusion.

Like I see a lot of discussion here about how PDD-NOS is treated a certain way, but what I read about it and hear from others is that it's extremely inconsistent. I also know of many people who have received multiple ASD diagnoses over time, and that seems to come down to whichever diagnosis you get depends on who diagnoses you and what information they have for the diagnosis.


But those who are diagnosed pdd-nos don't fit the criteria...but they can be diagnosed with that if they show a few traits of autism/aspergers. See, so this is what I'm confused about. My daughter's neuropsych alluded to the fact that if she develops an obsessive special interest (this is what she's missing) then I'd take her back to test for Aspergers...if her motor stereotypies get better and socially she thrives, then she said she won't ever need to be retested...that I'd just put her eval in a box somewhere and forget about it. She said that in her case, the only thing it could be, if anything, is aspergers since she never had a speech delay. Or maybe they are just changing the DSM criteria to make it easier to meet the criteria for an autism diagnosis overall...?? Meaning, today those who only have a couple of traits and don't meet criteria today...those same people could meet the criteria with the new changes? See, I don't know if that is the case, or if they are just getting rid of the extra terms...Aspergers/PDD....but the criteria isn't changing overall...



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05 Sep 2011, 8:52 pm

Blueskygirl wrote:
Or maybe they are just changing the DSM criteria to make it easier to meet the criteria for an autism diagnosis overall...?? Meaning, today those who only have a couple of traits and don't meet criteria today...those same people could meet the criteria with the new changes? .


My personal opiniom, from what I have reading, is that the new criteria for ASD will be more difficult to meet than the present criteria for autism (let alone PDD/NOS and AS)! Today, you need 6 symptoms in 12 (and a minimum of 2 in 4 for social interaction and 1 in 4 for restricted interests) for a diagnosis of autism; in the new criteria, you will need 5 symptoms in 7 (3 in 3 for social interaction and 2 in 4 for restricited interests).

In reality, I suspect that, if DSM-5 is approved as it is, from 15 years now we wil be discussing "What happened to the autism epidemic?", and the anti-vaccination groups will be saying "our campaign alerted the people for the dangers of vaccines, brutally reducing the autism rates!".



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05 Sep 2011, 9:00 pm

Blueskygirl wrote:
But those who are diagnosed pdd-nos don't fit the criteria...but they can be diagnosed with that if they show a few traits of autism/aspergers. See, so this is what I'm confused about. My daughter's neuropsych alluded to the fact that if she develops an obsessive special interest (this is what she's missing) then I'd take her back to test for Aspergers...if her motor stereotypies get better and socially she thrives, then she said she won't ever need to be retested...that I'd just put her eval in a box somewhere and forget about it. She said that in her case, the only thing it could be, if anything, is aspergers since she never had a speech delay. Or maybe they are just changing the DSM criteria to make it easier to meet the criteria for an autism diagnosis overall...?? Meaning, today those who only have a couple of traits and don't meet criteria today...those same people could meet the criteria with the new changes? See, I don't know if that is the case, or if they are just getting rid of the extra terms...Aspergers/PDD....but the criteria isn't changing overall...


Your neuropsych is basing an AS diagnosis on whether or not your daughter has a special interest? This is the kind of thing that's behind the consolidation of diagnoses. To meet the criteria for AS you only need one of these four:

Quote:
(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


Only one of these is about special interests. If she has "motor stereotypies" (C) that fits the criteria for (II), and she doesn't also need special interests to be diagnosed with AS.

Many people diagnosed PDD-NOS do fit the criteria, but some diagnosticians treat it as if it's "like autism, but milder" and some even say it should be milder than AS - but in reality, a lot of people with the full range of severity are diagnosed with it, and many should fit the autistic disorder criteria, or at least the AS criteria.

The DSM-V criteria are different:

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

I do not know if this will make it harder to meet the criteria - they've been doing clinical trials to see if the criteria work. Hopefully, if they're too stringent, they'll be modified appropriately. I have less faith in the criteria themselves than I do in the consolidation of diagnoses.



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05 Sep 2011, 9:02 pm

TPE2 wrote:
My personal opiniom, from what I have reading, is that the new criteria for ASD will be more difficult to meet than the present criteria for autism (let alone PDD/NOS and AS)! Today, you need 6 symptoms in 12 (and a minimum of 2 in 4 for social interaction and 1 in 4 for restricted interests) for a diagnosis of autism; in the new criteria, you will need 5 symptoms in 7 (3 in 3 for social interaction and 2 in 4 for restricited interests).

In reality, I suspect that, if DSM-5 is approved as it is, from 15 years now we wil be discussing "What happened to the autism epidemic?", and the anti-vaccination groups will be saying "our campaign alerted the people for the dangers of vaccines, brutally reducing the autism rates!".


One thing about the DSM-V criteria is that each of the seven criteria listed covers a broader range of behavior that is typical of people on the autistic spectrum - so it might actually be easier to meet each individual criterion than it is in the DSM-IV.

But I do share your concern - that it'll become too hard to diagnose people.



Blueskygirl
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05 Sep 2011, 9:10 pm

All of this talk has prompted me to get my daughter's eval...be back....



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05 Sep 2011, 9:22 pm

Verdandi wrote:
Blueskygirl wrote:
But those who are diagnosed pdd-nos don't fit the criteria...but they can be diagnosed with that if they show a few traits of autism/aspergers. See, so this is what I'm confused about. My daughter's neuropsych alluded to the fact that if she develops an obsessive special interest (this is what she's missing) then I'd take her back to test for Aspergers...if her motor stereotypies get better and socially she thrives, then she said she won't ever need to be retested...that I'd just put her eval in a box somewhere and forget about it. She said that in her case, the only thing it could be, if anything, is aspergers since she never had a speech delay. Or maybe they are just changing the DSM criteria to make it easier to meet the criteria for an autism diagnosis overall...?? Meaning, today those who only have a couple of traits and don't meet criteria today...those same people could meet the criteria with the new changes? See, I don't know if that is the case, or if they are just getting rid of the extra terms...Aspergers/PDD....but the criteria isn't changing overall...


Your neuropsych is basing an AS diagnosis on whether or not your daughter has a special interest? This is the kind of thing that's behind the consolidation of diagnoses. To meet the criteria for AS you only need one of these four:

Quote:
(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


Only one of these is about special interests. If she has "motor stereotypies" (C) that fits the criteria for (II), and she doesn't also need special interests to be diagnosed with AS.

Many people diagnosed PDD-NOS do fit the criteria, but some diagnosticians treat it as if it's "like autism, but milder" and some even say it should be milder than AS - but in reality, a lot of people with the full range of severity are diagnosed with it, and many should fit the autistic disorder criteria, or at least the AS criteria.

The DSM-V criteria are different:

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

I do not know if this will make it harder to meet the criteria - they've been doing clinical trials to see if the criteria work. Hopefully, if they're too stringent, they'll be modified appropriately. I have less faith in the criteria themselves than I do in the consolidation of diagnoses.


Okay - They did the Gilliam Asperger's Disorder Scale (GADS)Asperger's Quotient 57 Low/Not Probable
Social Interaction - Scaled score - 2
Restricted Patterns Behavior - scaled score 4
Cognitive Patterns - scaled score 3
Pragmatic Skills - scaled score 5

...and the ADOS

Communication - 2 (raw scores) Cutoff autism spectrum - 3
Reciprocal Interaction 6 cutoff autism spectrum - 4
Total - 8 Autism cutoff - 8imagination/creativity - 0
Stereotyped behaviors/patterns - 2

If you add everything together, it's really 10, not 8...but for some reason, she just added communication and reciprocal interaction together to get 8...??



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05 Sep 2011, 9:26 pm

TPE2 wrote:
Blueskygirl wrote:
Or maybe they are just changing the DSM criteria to make it easier to meet the criteria for an autism diagnosis overall...?? Meaning, today those who only have a couple of traits and don't meet criteria today...those same people could meet the criteria with the new changes? .


My personal opiniom, from what I have reading, is that the new criteria for ASD will be more difficult to meet than the present criteria for autism (let alone PDD/NOS and AS)! Today, you need 6 symptoms in 12 (and a minimum of 2 in 4 for social interaction and 1 in 4 for restricted interests) for a diagnosis of autism; in the new criteria, you will need 5 symptoms in 7 (3 in 3 for social interaction and 2 in 4 for restricited interests).

In reality, I suspect that, if DSM-5 is approved as it is, from 15 years now we wil be discussing "What happened to the autism epidemic?", and the anti-vaccination groups will be saying "our campaign alerted the people for the dangers of vaccines, brutally reducing the autism rates!".


This might be a good thing since there is a lot of overdiagnosis.



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05 Sep 2011, 9:29 pm

Verdandi wrote:
But I do share your concern - that it'll become too hard to diagnose people.


Why? It should be easier. The DSM-V seems more sane than the DSM-IV is.



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05 Sep 2011, 9:29 pm

The only test she did for Asperger's was the GADS....which was a parent questionnaire. I mean, she observed, of course...but...I believe going just off of the ADOS, she probably should have been diagnosed with Aspergers.



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05 Sep 2011, 9:38 pm

jackbus01 wrote:

This might be a good thing since there is a lot of overdiagnosis.


Citation needed.

jackbus01 wrote:
Why? It should be easier. The DSM-V seems more sane than the DSM-IV is.


Harder as in the possibility that people who should meet the diagnostic criteria may not meet them. The rationale behind the changed criteria is reasonable.

I am not sure how sanity plays into this, though. It's not as if the DSM is capable of being mentally ill. :wink:

Blueskygirl wrote:
The only test she did for Asperger's was the GADS....which was a parent questionnaire. I mean, she observed, of course...but...I believe going just off of the ADOS, she probably should have been diagnosed with Aspergers.


Yeah, what you quoted seemed strange.



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05 Sep 2011, 9:42 pm

Verdandi wrote:
jackbus01 wrote:

This might be a good thing since there is a lot of overdiagnosis.


Citation needed.

jackbus01 wrote:
Why? It should be easier. The DSM-V seems more sane than the DSM-IV is.


Harder as in the possibility that people who should meet the diagnostic criteria may not meet them. The rationale behind the changed criteria is reasonable.

I am not sure how sanity plays into this, though. It's not as if the DSM is capable of being mentally ill. :wink:

Blueskygirl wrote:
The only test she did for Asperger's was the GADS....which was a parent questionnaire. I mean, she observed, of course...but...I believe going just off of the ADOS, she probably should have been diagnosed with Aspergers.


Yeah, what you quoted seemed strange.


What do you mean? Oh, you mean based on her scores, that it does seem strange that she wasn't diagnosed with Aspergers?



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05 Sep 2011, 9:44 pm

Blueskygirl wrote:
What do you mean? Oh, you mean based on her scores, that it does seem strange that she wasn't diagnosed with Aspergers?


Yeah. I don't really know enough to know how the ADOS works, but excluding part of her score from the total seemed strange.

Well, whatever happens, it does sound like your daughter has a diagnosis that can help her get support she needs, I hope?



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05 Sep 2011, 9:47 pm

Verdandi wrote:
TPE2 wrote:
I suspect that this is the case, because the recent "romancization" (this word exist in English?) of Asperger's Syndrome (and to the fact that, in popular culture, there is only two ways of being autistic - or you live in an institution for mentally disabled persons, or you have AS).


I think Fnord is deeply underestimating the number of accurate self-dxes. I do not know why people are so fixated on demonstrating that they are most likely wrong when they very well may not be, and even professionals say that most self-dxes are likely correct. I would love to see research on this.

I picked AS because it seemed to be the best fit (I started speaking early). With more information, I think that is perhaps inaccurate, but then it is inaccurate for a lot of people who are professionally diagnosed with AS and PDD-NOS (they fit the criteria for autism) so it's not that big a deal, at least not until someone assumes that a diagnostic label means one can do more than one actually can.


Here is a link to an individual that worked up some statistics for the people that have taken the screening tests available for autism and how they fared depending on diagnosis. Looks like she put quite a bit of work into this endeavor. I'm not sure if her blog name, is the same, but I see that name here often as a user nickname.

In averaging together three of the screening tests done here, and reported on this site, her results indicated in some cases that those who were self diagnosed scored higher on the screening tests than those that had an actual diagnosis.

It's not a scientific study, but interesting never the less, for the wrong planet website.

http://abnormaldiversity.blogspot.com/2011/08/accuracy-of-autism-self-diagnosis.html

Quote:
So I selected the three diagnostic tests with the best response rates - BAPQ, ASQ and EQSQ - and assessed how many scored in the autistic range on all three tests (above cutoff on all three scales of BAPQ, over 32 on ASQ and 'Extreme Systemizer'). Significant differences were found with a p=.037, post-hoc tests indicating that the family/NT group scored lower than all four other groups:

•diagnosed AS: 84% scored 3, 8% scored 2, 4% scored 1 and 4% scored 0
•other autistic: 67% scored 3, 8% scored 2 and 25% scored 1
•self-diagnosed: 88% scored 3, 9% scored 2 and 3% scored 1
•unsure if autistic: 70% scored 3, 23% scored 2 and 7% scored 1
•family/NT: 50% scored 3 and 50% scored 0 (sample size 6)


I came across actual reference to University research done on this yesterday, but haven't been able to find it again. Will link it, if I can find it again. I believe it was done in the UK, but could be mistaken there.



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05 Sep 2011, 9:52 pm

Verdandi wrote:
Blueskygirl wrote:
What do you mean? Oh, you mean based on her scores, that it does seem strange that she wasn't diagnosed with Aspergers?


Yeah. I don't really know enough to know how the ADOS works, but excluding part of her score from the total seemed strange.

Well, whatever happens, it does sound like your daughter has a diagnosis that can help her get support she needs, I hope?


I think so. I'm going to talk to the counselor at her school tomorrow to figure out what the next step is. I wanted to avoid more evaluations because I feel like she's been evaluated to death...I was hoping they'd go off of this one..but the school district will want their own, I'm sure. I'll just get her evaluated for social speech....she will pass a regular speech eval with flying colors. Social reciprocity and eye contact would be the concerns there. They psych said she has good social reciprocity in play, but not in conversation. That's the only thing she would need from school at this point...and it would be such a shame not to utilize it because she's in a public pre-k program right now and there is a speech teacher in every classroom.



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05 Sep 2011, 10:01 pm

Verdandi wrote:
jackbus01 wrote:

This might be a good thing since there is a lot of overdiagnosis.


Citation needed.

jackbus01 wrote:
Why? It should be easier. The DSM-V seems more sane than the DSM-IV is.


Harder as in the possibility that people who should meet the diagnostic criteria may not meet them. The rationale behind the changed criteria is reasonable.

I am not sure how sanity plays into this, though. It's not as if the DSM is capable of being mentally ill. :wink:


From what I've seen I think the DSM-V is a lot better organized in general. Why would the new criteria make it harder? Also I assumed (but I don't have any facts to back this up) that Aspergers was overdiagnosed--maybe I was wrong.



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05 Sep 2011, 10:20 pm

aghogday wrote:
Verdandi wrote:
TPE2 wrote:
I suspect that this is the case, because the recent "romancization" (this word exist in English?) of Asperger's Syndrome (and to the fact that, in popular culture, there is only two ways of being autistic - or you live in an institution for mentally disabled persons, or you have AS).


I think Fnord is deeply underestimating the number of accurate self-dxes. I do not know why people are so fixated on demonstrating that they are most likely wrong when they very well may not be, and even professionals say that most self-dxes are likely correct. I would love to see research on this.

I picked AS because it seemed to be the best fit (I started speaking early). With more information, I think that is perhaps inaccurate, but then it is inaccurate for a lot of people who are professionally diagnosed with AS and PDD-NOS (they fit the criteria for autism) so it's not that big a deal, at least not until someone assumes that a diagnostic label means one can do more than one actually can.


Here is a link to an individual that worked up some statistics for the people that have taken the screening tests available for autism and how they fared depending on diagnosis. Looks like she put quite a bit of work into this endeavor. I'm not sure if her blog name, is the same, but I see that name here often as a user nickname.

In averaging together three of the screening tests done here, and reported on this site, her results indicated in some cases that those who were self diagnosed scored higher on the screening tests than those that had an actual diagnosis.

It's not a scientific study, but interesting never the less, for the wrong planet website.

http://abnormaldiversity.blogspot.com/2011/08/accuracy-of-autism-self-diagnosis.html

Quote:
So I selected the three diagnostic tests with the best response rates - BAPQ, ASQ and EQSQ - and assessed how many scored in the autistic range on all three tests (above cutoff on all three scales of BAPQ, over 32 on ASQ and 'Extreme Systemizer'). Significant differences were found with a p=.037, post-hoc tests indicating that the family/NT group scored lower than all four other groups:

•diagnosed AS: 84% scored 3, 8% scored 2, 4% scored 1 and 4% scored 0
•other autistic: 67% scored 3, 8% scored 2 and 25% scored 1
•self-diagnosed: 88% scored 3, 9% scored 2 and 3% scored 1
•unsure if autistic: 70% scored 3, 23% scored 2 and 7% scored 1
•family/NT: 50% scored 3 and 50% scored 0 (sample size 6)


I came across actual reference to University research done on this yesterday, but haven't been able to find it again. Will link it, if I can find it again. I believe it was done in the UK, but could be mistaken there.


That's a great link! Thanks for posting it. She really did put a lot of work into that.