DSM 5 Pilot study: Most kids with PDD-NOS no longer considered on spectrum

[jodifla]

The initial field trials are showing that most kids listed with PDD-NOS would be reclassified under the DSM 5.

http://www.najms.net/?p=11058

Abstract.

The new diagnostic criteria for autism spectrum disorders. (ASD) are due to be released in May 2013. The impact. of changes made in the new criteria is yet to be evaluated.. Here we performed a retrospective study on a cohort. of ASD patients diagnosed by DSM-IV criteria, aimed. to compare the diagnostic performances between DSM-IV. and DSM-V. We reviewed the medical records of 163. patients with possible clinical diagnosis of ASD.. Ninty-three (57%) of them met the DSM-IV criteria. for Autistic disorder, the rest 70 cases were either. PDD-NOS (n=39) or Asperger’s disorder (n=3) or without. sufficient information in medical record to perform. a clinical diagnosis (n=28). Upon re-evaluation using. the new diagnostic criteria in DSM-V, only 60% of. patients with previous diagnosis of autistic disorder. met the new criteria. One individual who was previous. diagnosed as PDD-NOS met the new diagnostic criteria. for autistic disorder. The present study revealed. a significant difference in diagnostic yield by new. and old criteria. This pilot comparative study reveals. that the ASD diagnostic criteria in DSM-V are stricter. than that in DSM-IV and autism patients diagnosed. using DMS-V criteria tend to be more severely affected.. The new criteria will have immediate impact on the. clinical diagnosis and management of individuals with. neuodevelopmental disorders and it will affect the. prevalence estimate of ASD in population as well..

 

[preschoolmom]

Fascinating. My son's diagnosis is PDD-NOS. I wonder where this would leave him? He is considered "high functioning" - but that doesn't mean he could function in public school without services (he can barely function in public school WITH services)...



Thanks for posting this! Good information here!

 

[Escape2Disney]

My daughter is in the same boat as the PP. I'll be interested to see how it changes services.

 

[bookwormde]

I think that PDD-nos kids are being missed says more about the quality of the evaluation than the actual standard

 

[jodifla]

Here's another study that says most kids DXed with PDD-NOS won't fit the new ASD criteria in the DSM-V

http://crackingtheenigma.blogspot.com/2011/05/what-is-pdd-nos.html

...Under these rules, 64 of the 66 children in the PDD-NOS group would not meet the criteria for Autism Spectrum Disorder. To the extent that Mandy et al.'s data are at all representative, this suggests that the overwhelming majority of people who currently meet criteria for PDD-NOS would not be considered autistic under DSM 5 and may not receive any form of diagnosis.
...

 

[jodifla]

And here's a response for the American Psychiatric Association about the changing criteria:

http://autism.about.com/od/diagnosi...-Child-With-Pdd-Nos-Is-No-Longer-Autistic.htm

"Furthermore, PDD-NOS does not have associated diagnostic criteria, as it was originally intended to be used only sparingly for children who didn’t meet criteria for autism or Asperger disorder. "



Of course, it's actually being used for more than half of the cases of autism these days.

 

[Singledad]

this makes me worried. yes yes it does... as my child is currently under evaluation for PDD-NOS, and what happens to kids like mine if they are not labeled and thus 'qualify' for services?

 

[jodifla]

Most of the PDD-NOS children would fit into a new category, Social Communication Disorder, which would not be considered "on the spectrum,'' according to the pilot studies.

You don't need an autism label to get services. Anyone one of the 13 federal categories gets a child services.

 

[Singledad]

You don't need an autism label to get services. Anyone one of the 13 federal categories gets a child services.

I know, I am just concerned because the category my daughter is under right now is limited to by age and she is going to need to be reclassified to retain services.

This is a private (non-school based) evaluation. but I know these results will effect how to school handles the question of what, if any, services will they give my child next year.

 

[preschoolmom]

Well, I find it interesting that PDD-NOS makes up so many of the new diagnosis. I understand that they are just wanting to clarify - but the new language based label doesn't really describe my son as well, IMO.

My son may be "mild" on the spectrum, but he is still very clearly on the autism spectrum (as much as I wish he wasn't).

He stims, he struggles with communicaton, he struggles with social cues and social situations, he has meltdowns (though, much, much less now), he has limited interests (Mario, anyone?) and sensory issues (very, very picky eater).

So, to me, they can call it a language disorder, but that isn't the whole picture. Not at all.

 

[jodifla]

I was listening to a Yale lecture from their autism study section and one of the leading professors there said only 1 in 700 has classic autism; the rest of the Dxes are for PDD-NOS or Asperger's.

Here's the new DSM V proposal that is undergoing pilot studies now:

http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94#

Autism Spectrum Disorder

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).

C. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

D. Symptoms together limit and impair everyday functioning.

And the severity levels:

Revised January 26, 2011

Severity Level for ASD


Social Communication


Restricted interests & repetitive behaviors

Level 3

‘Requiring very substantial support’


Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning; very limited initiation of social interactions and minimal response to social overtures from others.


Preoccupations, fixated rituals and/or repetitive behaviors markedly interfere with functioning in all spheres. Marked distress when rituals or routines are interrupted; very difficult to redirect from fixated interest or returns to it quickly.

Level 2

‘Requiring substantial support’


Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions and reduced or abnormal response to social overtures from others.


RRBs and/or preoccupations or fixated interests appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress or frustration is apparent when RRB’s are interrupted; difficult to redirect from fixated interest.

Level 1

‘Requiring support’


Without supports in place, deficits in social communication cause noticeable impairments. Has difficulty initiating social interactions and demonstrates clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions.


Rituals and repetitive behaviors (RRB’s) cause significant interference with functioning in one or more contexts. Resists attempts by others to interrupt RRB’s or to be redirected from fixated interest.

 

[toodycat]

This is interesting to me because my son was classified with PDD-NOS in 1996, but he never had anxiety, meltdowns or repetitive behaviors. His IQ is in the normal range, but he has about a 40 point difference between performance and verbal. His only sensory issues were loud noises and bad smells. He was pretty withdrawn socially, had speech deficits, auditory processing issues, attentional issues and was very concrete in his interpretation of things. He didn't stim at all and he wasn't ritualistic. He wouldn't naturally intuit social norms, but if you said, "Don't do such and such. Others find it in inappropriate" he knew not to do it anymore. When he started school, I didn't have them classify him as autistic on his IEP because it was so long ago that people tended to write off a kid with that diagnosis. So, he was always "multiply handicapped" or "other health impaired." He received tons of services from the school starting with full day special ed. pre-school with speech four times a week and movement therapy twice a week; speech and OT and self-contained classes in kindergarten and first grade and collaborative classes with academic support, speech and OT through middle school. In high school, he remained in collaborative classes and kept the speech services. He always got decent grades (with tutoring sometimes), never had any outbursts or meltdowns in school and was never picked on by others. Kids would try to engage him or support him, but he didn't always know how to respond. He was just very quiet and kept to himself. When I would involve him in socialization groups for autistic kids, he never had as much in common with them as I'd hoped. Only one socialization camp (in Atlanta) really worked for him. He had to interview with a psychologist before being placed and the group he was in was full of boys who were more or less the same. It was a great experience. Now, he is in his senior year of high school. He's met all the graduation requirements, been admitted to a pretty good college and is learning to drive. He has friends in school, but he still won't make the leap to invite them over. Although the PDD-NOS diagnosis was probably the most appropriate diagnosis of its time, I kind of wonder if Social Communication Disorder would have been more accurate. It doesn't really matter at this point as he got what he needed when he needed it.

 

[clanmcculloch]

Thanks for sharing that Jodi.

You know, after reading that, I'm not sure how somebody would end up with a diagnosis of PDD-NOS without fitting that criteria. My Aspie certainly does. If it's missed then it really does say more about the person doing the evaluation than it says about her. As her advocate, I'd be pushing back. Of course it's easy for me to say since we've got a great support team and all of her education and special ed and medical team would be right there beside me supporting the fight for her diagnosis.

 

[bookwormde]

I would not get to excited since by the time the standard is final we are going to have pretty good set of genetics scans of the genome to identify those who have parts of the autism genetic set. Then is will just be about what level of impact it has.

bookwormde