Saturday, May 14, 2011

Asperger's Autism and PDD-NOS. . . Is there a difference?



Yesterday I listened to a very interesting talk by Catherine Lord, one of the creators of the ADOS test.  ADOS is the “gold standard” in the world of autism diagnosis, and she's a leading figure in the world of autism testing and evaluation, so I jumped at the chance to hear her thoughts on where we're headed in that regard.

People who receive an autism diagnosis are told they have one of three conditions:  Autism, Asperger's, or PDD-NOS.  The big question is, who should be diagnosed with what?  Is there a coherent sense of classification, or is it merely arbitrary or random?  She reviewed the diagnostic data for several thousand spectrumites in an effort to determine what caused a person to end up in one of those three categories.

To her surprise, after analyzing the data, she found the principal predictive factor had nothing to do with the individual.  Looking at records from a number of good university hospitals, she found places who called almost everyone Asperger, and other places where everyone was PDD-NOS. There was no discernible pattern of variation between individuals; they seemed to simply get different diagnoses in different places.

Was there more to the story?

To answer that, she looked at other factors, like IQ.  For example, many people call Asperger's "autism lite" or "high IQ autism.". Her review of Asperger diagnoses at one Ivy League school bore that out, with their Asperger kids having average IQ of 123.  However, other doctors must see Asperger's differently, because a Midwest clinic in the study has an average Asperger IQ of 85. 

She looked at quality of language in older kids and found similar ambiguity.  Asperger's is supposed to distinguish autistic kids who don't have trouble speaking or understanding language.  That can be true at age three, but what happens when kids get older and talk more?  In the final analysis she did not find any consistent measures of the individuals themselves that led to one label or the other being applied.

In my opinion, those findings support the argument that there is no consistent  standard that sets the three descriptive terms for autisms apart.  A difference at one point becomes invisible at another.  For example, you could say four year old Mike does not talk so he's autistic and Jimmy talks up a storm so he's Aspergers.  But what happens when both kids are ten and they look and sound the same?  Were the differences justified?  What purpose might they serve by their difference?

Her findings made one more strong argument for combining all autism diagnoses under the heading of Autism Spectrum Disorder, with a described range of disability or affect.

That's the way things seem to be headed for the next DSM. 

At the same time, Dr. Lord expressed concern that many people have a strong personal investment in one diagnostic name or the other, and they should be able to keep using the different terms.

Stay tuned for more tomorrow, from IMFAR 2011

John Elder Robison
Author of Be Different, 2011

6 comments:

Traci said...

Wow! Very interesting! My son is in the process of being tested. We know he is on the spectrum, but don't know exactly where. I guess it doesn't really matter! Very helpful information.

newnoz said...

I've always wished that MDs could use a more general term for a preliminary diagnosis since future therapists and councillors get fixated on the first Dx rather than keeping an open mind as to where on the spectrum a person is. This would satisfy the government and insurance people without locking the medical establishment into one view.
also it speaks to the prejudices of human beings, sometimes a certain imprecision that some medical people fall prey to (Those who should be a little more scientific in their methodogy.. but then not all MDs can be Aspergers as some of them need to have bed side manners )

This is another very thought provoking and, to me, meaningful blog addition.
Thanks John

chavisory said...

I was eventually diagnosed with Asperger's, despite not having spoken until over 3 years old...so my feeling is that the distinction is somewhat arbitrary. I've seen the term Asperger's seem to be used two different ways: to refer to high-functioning autism in which language is simply not delayed or relatively unaffected, but also when there's a component of fixation/obsession/very high ability with language. I'm very verbally adept, but my language WAS delayed, and WAS very much affected. So, in my case, what is the difference between autism and Asperger's? Why the cut-off of 3 years?

Mrs Shoutfire said...

Yes very interesting. I'm the parent of a high-IQ, high-functioning ASD child who is considered PDD-NOS rather than Asperger because of speech delay. I don't care what the professionals label these kids as long as they all have access to the same interventions and educational strategies that work well for them. It needs to be based on their current level of functioning not their lack of speech at age 3! I would prefer that the Asperger label be abolished if it continues to be a problem.

Green Eyes said...

I am in the middle of reading your book, "Look me in the eye". I am enjoying it very much. My 7 year old has Autism, but is considered "High Functioning". As he has gotten older, many people have asked me if his diagnosis is really Aspergers, but I'm not sure. He is quite intelligent, and does very well in school academically (just not socially). He did have a speech delay, but now it's more just a problem with monotone speech, or his words take a while to get out. It's like he stutters, but it's not a stuttering problem. I think it's just hard to get the words out. A problem I see today with the various diagnoses is that the diagnosis one child gets may lead to more assistance, whereas another diagnosis might not. My son is supposed to be re-evaluated in the next couple of years, and if the doctors feel more comfortable with the diagnosis of Aspergers, I think the amount of services he gets now (that is paid for by the County) will be drastically reduced.

OldschoolVgamer said...

Mr. Robison, as much as I see your point and somewhat agree, there still needs to be a distinction between different manifestations of it. As you and I have both observed, the distinction between different ASDs is kind of arbitrary and an emphasis on a spectrum thought is more accurate for the full autistic picture, BUT I don't think that the erasing of AS or any other form of autism from the diagnostic criteria is a very good idea.

While those of us with A.S., H.F.A., L.F.A., etc. are part of the same general community, both you and I notice different ways in which the autism manifests itself in the individual. While shifting to a more spectrum view of autism has the benefits of bumping up numbers, helping to get more services, and bringing us closer as a whole, it does have the potential downfall of us losing a distinctive identity and even moreso pushing us in a direction where we may be stereotyped and prejudged further.

The idea of pushing AS into a broad autism category judged by some grading system of whatever sort they decide upon may sound good at least in theory, but in practicality it may fail knowing current cultural and societal tendencies.

Many people, largely thanks to a failed public school system and a chronically biased media often get trapped into ill thinking and get caught in ignorant thinking, including stereotypes.

Let's admit it, Mr. Robison, how many times have you or I in different places been called Rain Man or retard?

Autism, despite education about it coming out and the mythicization of it being unraveled, there is still a lot of negative stigma around it. Having labels like AS and others around is a good way, regardless of the spectrum part, to distinguish differently manifested autistic qualities and away from that in my opinion.

The proposed grading system of autism on a spectrum as I've heard suggested itself seems really no different and potentially worse than using the labels that we currently do.

From what I understand, one proposed system has us graded on one of three levels: Low-Functioning, Mid-Functioning, High-Functioning with descriptions next to each that if we were to be classified on any of them could be pidgeonholing us further considering the facts you just described which can be easily seen as high-functioning or lower-functioning in different areas.

If I were to say be classified as High-Functioning, it might not be 100% accurate as indeed I would probably been in some ways, but I may be more mid-functioning or low-functioning in others.

If I was say lightly afflicted in speech and severely afflicted in hypersensitivity, where would I lie? I would go to either High-Functioning or Low-Functioning ends? Wouldn't that be kind of limiting and not 100% accurate to my specific case?

I don't like the way this is going. With the current A.S. label it makes a more fine distinction, but this system I think doesn't make much progress.

Besides, cutting it out seems like a cheap solution rather working against it than with it which is a better idea considering the effort that the community containing both you and I have put forth.

I fear that perhaps lumping us into one category, even if on some grading system, may lump us all into the same category and possibly have, at least for some people, the opposite effect to emphasizing the diversity amongst us and may bring back stereotypes that many of us in our different categories want to stay away from.

Comments anyone?