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Exploring the Diagnostic History of Autism

By May 30, 2011

If you've never actually looked into the diagnostic history of autism, it's worth your time to compare and contrast today's "autism spectrum disorder" with earlier diagnostic labels and symptoms.  I  just came across a nicely-packaged collection of prior descriptions of "autism" as presented in earlier versions of the Diagnostic Manual versions I, II, III and III-R, available at  Roy Grinker's "Unstrange Minds" blog.  It makes intriguing reading!

For example, autism (not ASD as we know it today) was lumped in with childhood schizophrenia until the 1980 DSM III, and was then listed as "infantile autism" with these descriptive criteria:

DSM III (1980)

Diagnostic criteria for Infantile Autism

A. Onset before 30 months of age

B. Pervasive lack of responsiveness to other people (autism)


C. Gross deficits in language development


D. If speech is present, peculiar speech patterns such as immediate and delayed echolalia, metaphorical language, pronominal reversal.


E. Bizarre responses to various aspects of the environment, e.g., resistance to change, peculiar interest in or attachments to animate or inanimate objects.


F. Absence of delusions, hallucinations, loosening of associations, and incoherence as in Schizophrenia.

Even more interesting (to me!)  are the criteria for PDD-NOS, which was first described in the 1980 DSM III.   Based on these criteria, my son would come nowhere NEAR PDD-NOS - his present diagnosis!

DSM-III (1980)

Diagnostic Criteria for Childhood Onset Pervasive Developmental Disorder

A. Gross and sustained impairment in social relationships, e.g., lack of appropriate affective responsivity, Inappropriate clinging, asociality, lack of empathy.

B. At least three of the following:

1. sudden excessive anxiety manifested by such symptoms as free-floating anxiety, catastrophic reactions to everyday occurrences, inability to be consoled when upset, unexplained panic attacks,

2. constricted or inappropriate affect, including lack of appropriate fear reactions, unexplained rage reactions, end extreme mood lability,

3. resistance to change in the environment, e.g., upset if dinner time is changed, or insistence on doing things in the same manner every time, e.g., putting on clothes always in the same order,

4. oddities of motor movement, such as peculiar posturing, peculiar hand or finger movements, or walking on tiptoe,

5. abnormalities of speech, such as question-like melody, monotonous voice,

6. hyper or hypo-sensitivity to sensory stimuli. e.g., byperacusis,

7. self-mutilation, e.g., biting or hitting self, head banging.

C. Onset of the full syndrome after 30 months of age and before 12 years of age.

Absence of delusions, hallucinations, incoherence, or marked loosening of associations.

Exploring these past and future diagnostic criteria has really opened my mind to how idiosyncratic such distinctions really are!  It reminds me forcibly of the classification activities often undertaken in elementary school classrooms.  Kids are broken into groups and given identical collections of 100 buttons, and asked to organize them into groups.  Naturally, each group takes a different approach: some organize by color, some by size, some by number of holes, some by shape, and so forth.  Which organizational approach is correct?  The answer, of course, is "there is no right answer."

Where would you or your child have fit under past diagnostic criteria?  How helpful is the present DSM-IV?  And... how do you feel about the idea that such diagnostic categories are changed and changed again over the course of any individual lifetime?


Comments
May 31, 2011 at 12:03 am
(1) fatinsuma says:

I was diagnosed w. “childhood schizophrenia” at age 7 (1972). Institutionalized, put on Stelazine, Haldol.

May 31, 2011 at 10:31 am
(2) zusia says:

Lisa, when you write:

“Even more interesting (to me!) are the criteria for PDD-NOS, which was first described in the 1980 DSM III. Based on these criteria, my son would come nowhere NEAR PDD-NOS – his present diagnosis!”

…you’re making the very common mistake of mixing up PDD which the criteria was for, with PDD-NOS, which is Tom’s diagnosis.

PDD-NOS was created as a sub group under the overarching topic of PDD in the DSM-IV as a category that describes children with developmental delays who do not meet criteria for autism disorder, Asperger’s, CDD, or Rett’s.

Children with PDD-NOS typically have a couple of traits that are associated with autism, like difficulty with social interaction and social communication, but they also can have a combination of traits usually ascribed to other differences, a little sign of ADHD, a little bit of OCD, etc., but not enough for a full autism or Asperger’s diagnosis.

Prior to the DSM-III, children with autism features were diagnosed as childhood onset schizophrenia or, more commonly, simply referred to as developmentally delayed, since the milder cases simply grew up in the family home, and required no outside intervention. My family had such members and my husband’s brother as well.

For what it’s worth, my son would have qualified for the above outlined Childhood Onset Pervasive Development Disorder had the diagnosis been around a decade ago. And he would have qualified for each criterium.

May 31, 2011 at 10:46 am
(3) autism says:

You’re right, Zusia. Sorry for that error: PDD is now essentially identical with ASD, while PDD-NOS is a sub-category of those diagnostic umbrellas.

Wouldn’t it be nice if they picked more distinctive titles?!

Lisa

May 31, 2011 at 3:46 pm
(4) zusia says:

Sorry Lisa but wrong again. PDD is not not currently “essentially identical with autism,” it’s an overarching topic that means exactly what it says: Pervasive Developmental Delay.

Many children have pervasive developmental delays– meaning their delays cross all areas of development– but are not autistic. They just have a wide range of development delays.

They may have traits that also fall under criteria for autism, like social awkwardness or repetitive behaviors or lack of eye contact but they are not technically autistic. Perhaps they have brain differences like dyslexia or NLD or ADHD or OCD, or Tourette’s, or a combination of traits that, when grouped together, resemble autism, but per current criteria, they’re not autistic.

I’ve worked with kids who have a diagnosis of PDD-NOS because they have traits of autism but they can carry on an interactive conversation. It’s their one deal breaker. My older son would have fallen into this category as a child but it was just his ADHD, a bit of OCD, and a handful of inherited autism traits.

Many people consider PDD-NOS on the autism spectrum, but it’s really part of the PDD spectrum. That said, many kids who start out with a PDD-NOS diagnosis are later re-diagnosed with Asperger’s, although some lose the diagnosis completely, or get reassigned to ADHD plus an LD.

As you know, the APA is considering reconfiguring the PDD category and calling it Autism Spectrum Disorder. Under this proposal, both Asperger’s and PDD-NOS will be eliminated. Either the person fits in the ASD category or does not, and most likely will be assigned specific separate diagnoses like communication disorder, if that applies, or chronic tic disorder– whatever applies.

I think there’s a real risk, under the proposed changes, for children with a mild combination of traits to become overlooked, and that need to be addressed, or they will get no help at all and that will lead to a worsening of symptoms, behavior issues, and depression.

May 31, 2011 at 3:56 pm
(5) barbaraj says:

How confusing is this? Differences between PDD that is specified? My son would be PDD, except the language that he lost as a toddler, and the entire regression taking place before 30 months. Had I wasn’t his “historian” he would be PDD. Makes me wonder how many make that error, not following the history given by parents can change an entire diagnosis? OOPs..but my nephew has been PDDNOS, and he regressed at age 19 months?..it’s okay because he’s aspergers now..OOPS..until they discover that aspergers wasn’t part of the ASD that he was on until last year. Gotta love all this..personally , I know my son is recovering from encephalitis, that’s how I see it, and whatever caused it may still be in question, but the symptoms match much more evenly than this psychobabble. Oh..hmm in 1992 that was Hopkin’s first “guess” for my nephew..toxic encephalopathy..which was dropped when a nice label became more suitable for the books.

May 31, 2011 at 3:59 pm
(6) autism says:

I’m sorry, Zusia, but in this case you are incorrect. In fact, the NIMH has an entire site titled “Autism Spectrum Disorders (Pervasive Developmental Disorders).” In that site (http://www.nimh.nih.gov/health/publications/autism/introduction.shtml) , you’ll find this statement:

The pervasive developmental disorders, or autism spectrum disorders, range from a severe form, called autistic disorder, to a milder form, Asperger syndrome. If a child has symptoms of either of these disorders, but does not meet the specific criteria for either, the diagnosis is called pervasive developmental disorder not otherwise specified (PDD-NOS). Other rare, very severe disorders that are included in the autism spectrum disorders are Rett syndrome and childhood disintegrative disorder. This brochure will focus on classic autism, PDD-NOS, and Asperger syndrome, with brief descriptions of Rett syndrome and childhood disintegrative disorder below.

Lisa

May 31, 2011 at 5:18 pm
(7) zusia says:

Correct, Lisa, the NIMH does indeed use this kind of descriptive language. The NIMH also talks repeatedly about “the diagnosis of ASD” when we know there is no such diagnosis of ASD, at least not in the USA. The NIMH quote is a good example of the kind of looseness that is pervasive– pardon the pun– in the media today and perpetuates the mistakes people make, like you did, when you referred to the above criteria for PDD as PDD-NOS.

Again, the current diagnostic category is Pervasive Developmental Disorder, and as such is really not yet Autism Spectrum Disorder, which is proposed.

PDD includes Rett’s Disorder, which has a known etiology, and is therefore being removed from the category. PDD also includes PDD-NOS and Asperger’s which are being removed as well. What is left (according to the APA) is Autism Spectrum Disorder — and only Autism Spectrum Disorder. People who currently qualify for PDD-NOS and Asperger’s may not qualify for ASD. It’s a different form of classification entirely. See the difference?

Probably not. Yet noting differences is really important, especially when you go public. If you care to learn more about the development of PDD and PDD-NOS, here is a good article, from the AP itself:

http://www.psych.org/MainMenu/Research/DSMIV/DSMIVTR/DSMIVvsDSMIVTR/SummaryofPracticeRelevantChangestotheDSMIVTR/PDDNOS.aspx

May 31, 2011 at 5:36 pm
(8) Lisa says:

Zusia, so far as I know there is nothing in the criteria that says autism, or ASD, or PDD, must be of unknown origin.

I will ask and hopefully get more clarification on that point when I interview the DSMV folks.

Please do not suggest that I am unable to grasp distinctions. I am perfectly capable of understanding them. The new Autism dx will include several levels of severity, so I am assuming that MANY people who presently have PDD NOS and AS diagnoses WILL in fact fall into that category.

Lisa

June 1, 2011 at 9:33 am
(9) zusia says:

Look no further than the APA with their description of the new ASD category:

http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=95#

June 1, 2011 at 11:12 am
(10) Malia says:

I could see this getting interesting… since it would imply that an ASD of any genetic origin would cease to be an ASD and become another disorder of known etiology. How then will the research community be able to claim that ASDs are all genetic in nature since the category will only include those of yet unknown etiology.

May 31, 2011 at 6:28 pm
(11) AutismNewsBeat says:

I attended AutismOne last Saturday. McCarthy still says the autism rate in 1983 was 1:10,000, and now it’s 1:110, therefore we have an epidemic on our hands. Talk about an inability to grasp distinctions. Thanks for posting this, Lisa.

June 1, 2011 at 11:17 am
(12) vmgillen says:

Let us not forget that the DSM is the product of the APA, which steadfastly held the line on treatment via analytical/cognitive models (treating as affect-type disorders; think “refrigerator mom!) until they finally realized they were losing their standing as a professional organization (new members, billable hours for existing members)… the DSM is by and for the APA, to facilitate billing insurance companies. PERIOD.

June 1, 2011 at 11:45 am
(13) Lisa says:

Whether or not one likes or approves of the APA, NIMH or the CDC, they are in fact the agencies that create the diagnostic categories, etc. So IMO it is helpful to understand their perspectives and get a handle on where they’re headed.

Lisa

June 1, 2011 at 1:07 pm
(14) vmgillen says:

Actually, in this case it’s only the APA… and NIMH and CDC are simply using the APA criteria, I believe. And, yeah, your right: I hold the APA in low esteem… Inargualbly, it is important to know where they’re coming from (protection of self-interests – without any judgement on my part) if you want to “get a handle on where they’re headed.”

June 1, 2011 at 1:25 pm
(15) Lisa says:

vmgillen – what leads you to have such a low opinion of the APA, or to believe that NIMH is so incompetent? Is this a personal opinion, or are you in a position where you have information we’re not privy to?

June 1, 2011 at 2:59 pm
(16) zusia says:

vmgillen is right– it’s the APA who comes up with diagnostic labels for mental health related issues, and I suppose it could be said that they are mainly coded for insurance carriers, although I’m sure the coding helps their data collection as well.

Lisa — NIMH is a research institute and the CDC is a government agency, part of DHHS, that oversees public health. I’m surprised you thought they were “agencies that create the diagnostic categories.” That explains some of your misunderstandings.

Like vmgillen, I have a cautious opinion of the APA and the NIMH. I actually have a more favorable opinion of the CDC but that’s for another time. ;)

June 1, 2011 at 3:19 pm
(17) autism says:

Oh, for goodness sakes, Zusia, I KNOW that the CDC and NIMH don’t create the diagnostic categories!

I grouped the APA, CDC, NIMH, etc. together in a comment because it seemed that you and vmgillen have very low opinions of all of them in general. Yet they are the organizations whose decisions, variously, determine WHAT the disorders are, WHERE money will go to do research, HOW the information gained through the research will be made available, and so forth.

Please, at some point, take some time to read some of the hundreds of articles (not blog posts) on this site, so you will see the depth and breadth of research I’ve done on these topics. While I am not a medical professional, I am not ignorant.

Thank you.

June 1, 2011 at 3:36 pm
(18) zusia says:

Not too sure why the angst, Lisa. I’m just responding to what’s been posted. The reason I stick around is because I have indeed read the articles and have also read your many questions which to me indicate a less than thorough understanding of autism. That in itself is not a problem– I’ve mentioned before that I really like the idea of your blog following the personal discovery of a mom — but it does present a problem when misinformation goes public. I know you research– all of us do– but you don’t seem to comprehend or maybe it’s that you have difficulty connecting the dots. I know it’s not because you don’t have autism— some of the best sources of autism information do not have autism themselves.

I don’t know about vmgillen– I don’t know this person — but I don’t think I’ve ever posted that I have low opinions of any of these agencies. I do have a cautious opinion of some.

June 1, 2011 at 4:36 pm
(19) vmgillen says:

In some administrative law proceedings I have acted as expert witness. An opinion should be based on more than gut instinct, and information should be secured from more than press releases. -That being said, I am EXTREMELY wary of the APA, in that their raison d’etre is supporting and enhancing conditions for their professional membership – as opposed to their “patients”, which is not necessarily a bad thing: it’s what prof. organizations are supposed to do. However, it most distinctly is not what I do: support and enhance conditions for extra-ordinary people – because I am personally connected to those people.

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