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Say Good-Bye to Your Child's PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified)

By June 30, 2011

Earlier this week, I noted that that the American Psychiatric Association's new Diagnostic Manual, the DSM 5, will no longer include the official diagnosis of Asperger syndrome.  Another autism spectrum disorder that will disappear - probably forever - is PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified).

PDD-NOS, as it's currently described, is a sort of dumping ground diagnosis, in that it includes anyone who presents with some but not all symptoms of autism when those symptoms cannot be otherwise explained.  Some people with PDD-NOS are relatively mildly impacted by social communications delays and/or repetitive behaviors and interests; others are severely disabled, but have only some of the specific symptoms ascribed to autism.  As might be expected, PDD-NOS is not an especially popular diagnosis among parents or clinicians, so its demise is not likely to be mourned.

The question, of course, is what will happen to those children and adults who currently have a PDD-NOS diagnosis?  Will they still fall under the autism spectrum umbrella when the new DSM goes into effect in 2013?

I asked the American Psychiatric Association, and they provided an answer.  If you don't have time to click on the link right now, I'll give you the short version.  The answer (not surprisingly) is - maybe.  It depends.

More About PDD-NOS and the Autism Spectrum

Comments
June 30, 2011 at 12:04 pm
(1) mamafog says:

There are some new disorders listed in the DSM-V revisions, I wonder if some of them may be used in place of PDD-NOS at times.

http://www.dsm5.org/ProposedRevisions/Pages/InfancyChildhoodAdolescence.aspx

I hope we will read more discussion about these changes and the new disorders, like Social Communication Disorder.

June 30, 2011 at 1:28 pm
(2) lisa says:

Autismfog – yes, I am sure that social communications disorder and other new diagnostic categories will be used in place of PDD-NOS. Meanwhile, some kids will still remain in the autism spectrum category if their symptoms are appropriate.

Lisa

June 30, 2011 at 2:14 pm
(3) KWombles says:

Lisa, the link with the “answer” is your PDD article last updated in 2008.

June 30, 2011 at 2:27 pm
(4) Lisa says:

aw jeez – I’m so sorry! am changing that right now. thanks for the catch.

Lisa

June 30, 2011 at 6:04 pm
(5) KWombles says:

Looks like the DSM-V will give our kids more labels rather than less, with the hope that with a string of labels, the specific needs of each child will be more clearly delineated than with just a vague autism diagnosis.

June 30, 2011 at 6:30 pm
(6) autism says:

Kim – yes, that’s the hope… but my worry is that many kids could wind up with two or three discrete labels, or with such complicated labels that it’ll be hard to sort out their issues and needs. I get the sense that the specific new “flavors” of autism will wind up being even tougher to say and understand than PDD-NOS!

And then there are the kids who will have the social communication disorder label, and may ALSO be intellectually disabled and may ALSO have anxiety disorder…

Anyway, I can see plusses and minuses.

Lisa

June 30, 2011 at 9:05 pm
(7) Ross Coe says:

Why not call it what it is, vaccine injury.

July 4, 2011 at 2:41 pm
(8) Venna says:

Because it isn’t vaccine injury, that’s why. My son has autistic disorder but he didn’t get his vaccines until after his symptoms were well established. The science does not support your claim. Science does, however, support that autism is a genetic disorder determined by how the brain develops prenatally and particularly mutations in the De Novo genes (there is research done, and still being done on this). That being the case, vaccines have nothing to do with it, but those who understand science and how it works have understood that to be the case for years.

July 4, 2011 at 10:04 pm
(9) Maurine Meleck says:

New Report just came out from study by NIH–autism cause is overwhelmingly environmental
The decision to change DSM that way is to hide the real increase in autism`(it hasn’t increased-it’s just that they changed the DSM to include them all under one umbrella.
Autism-the word is pretty useless anyway. It encephalopathy-not autism-from vaccines or whatever other environmental toxin caused it.
They need to take autism-or encephalopathy out of the DSM and away from psychologists and psychiatrists who seem to be unwilling to admit it’s not in their realm of study and never has been. It’s not a psychological disorder, but a metabolic disorder and needs to be treated by medical doctors and DAN doctors in particular.
Maurine Meleck, SC

July 26, 2011 at 1:46 pm
(10) Virginetta says:

I agree with you 100%

June 30, 2011 at 11:46 pm
(11) Malia says:

I’m concerned that children like my son who didn’t consistently demonstrate difficulties he was having to those assessing him will miss out on therapies they actually need. For example, it’s not that he didn’t have stereotypical behaviors and routines; however, within the confines of the doctors office where the sensory triggers were different, he didn’t demonstrate them to the same degree as he did at school or in the car. Also, our impression of their impact on his learning changed over time; that is, when he wasn’t talking, we were generally so focused on getting him to talk that we didn’t notice things like chewing on his collars or that he was flapping his hands – just a little back and forth down at his sides. As he acquired language and our concern over that lessened, then we began to notice the more subtle stereotypical movements he did have. Having a diagnosis “on the spectrum” meant that we did have access to an OT and a behavioral psychologist, who were able to help us figure out what sensory triggers would bring out which movements and mitigate them so that my son was more able to stay relaxed. If he only had a speech-related diagnosis, we would not have had access to such help.

July 1, 2011 at 8:11 am
(12) autism says:

Malia – that’s a very interesting point… our son has some behaviors that might or might not be considered “stereotypical,” depending upon your point of view, and I suspect different people would view them differently. In part, that’s because stereotypical behaviors and stims are similar but not always identical.

For example, Tom has invented a sort of mythological world of his own, where his “animal friends” live – it’s become very complex over time, with dozens of characters. He’s built them restaurants, vehicles, houses and clothing… and he’ll almost inevitably start talking about his “friends” when he feels stressed – it’s very predictable, but it doesn’t feel “repetitive” or “stereotyped” in the usual sense, rather it’s more like an anxiety response – but I don’t absolutely know for sure.

He cries easily when he feels judged or criticized, and will generally do the same things every time he gets upset or he’s overwhelmed. Is that stereotipy or anxiety? Or both?

IMO, what’s USUALLY meant by stereotyped behaviors are obvious stims (flapping, rocking), overwhelming preoccupations (MUST check out every house for Disney videos and then talk about them to anyone who walks by), etc. But there are, of course, more subtle behavioral differences.

The interesting thing to me is that we’ve never seen any positive impact from OT … Tom enjoys bouncing, etc., but doesn’t seem to gain anything particular from the OT. We haven’t really thought about a behavioral therapist for ages, either since his behaviors are so predictable and understandable (though not typical). If someone cries or says “I’m Leaving!” when they’re upset, it makes sense – even though it may be “babyish” or even frustrating to others around him!

Lisa

July 2, 2011 at 12:34 am
(13) Malia says:

My son’s version of hand flapping was very subtle, but it was indeed still hand flapping. It was most noticeable when he was skating… he would cock one hand behind his back (like a speedskater), but then he would also flap it up and down like a duck quaking as he took each stride.

Another clear stim he had was chewing on his collars, but I just didn’t connect it to being a stim until much later. I believe they now make and market particular chewable jewellry to help curb this behavior.

My son’s tendency to rock was a stim we certainly recognized whenever he did it in the car (often bouncing so hard other drivers would stair at us at lights). However, when he tends to do it in the rocking chair at home, we tended not to think about it as a stim at all… but actually it still is… but a good rock also helps him to relax (just like granny knew it helped her). :D

July 1, 2011 at 11:44 pm
(14) Sandy says:

A point to maybe think about is many therapies don’t require a diagnosis, in the private sector anyway. For many, not having a diagnosis often get’s insurances to cover the therapies. Private sector therapy often do their own evaluations per their service even if there is one previous or a diagnosis or not.
Therapies, or related services public school-wise is always going to be difficult regardless.

A child can have sensory integration disorder and not have autism. A child can have speech delay and not have autism. A child can have behavioral issues and not have autism. Those services would still be available to that child.

July 2, 2011 at 12:19 am
(15) Malia says:

I agree Sandy, but I also think the availability of private services is somewhat dependent on family income levels, even in the US where private services are generally more available than in Canada. In Canada, public health care has, to some degree, suppressed the emergence of private care and therapy options; such that some families from Canada do travel to the US to receive such services when they must obtain them at their own expense (i.e. not under our public health care system.

In my son’s case, he almost certainly would not have had access to an OT and behavioral therapist if his diagnosis was merely a speech disorder; and the school continually expressed a need for the diagnosis to be reaffirmed every few years in order to be able to maintain his classroom aide, which was certainly critical to his success in graduating high school.

July 2, 2011 at 9:05 am
(16) Sandy says:

Canada of course has a different health care system than the United States does and it’s difficult to know what other countries use things from the American Psychiatric Association, or create their own. Just because the American Psychiatric Association is changing the diagnostic criteria labels doesn’t mean other countries will also adapt to that. Assuming PDD-NOS will ‘disappear – probably forever’, that would be true of the United States only.

I know many people who’s children had a hard time getting services since their child had a NOS. That label has been controversial for years.

July 2, 2011 at 12:32 pm
(17) Malia says:

Oops – that should be ICD not ICM.

July 3, 2011 at 10:57 am
(18) AutismNewsBeat says:

As might be expected, PDD-NOS is not an especially popular diagnosis among parents or clinicians, so its demise is not likely to be mourned.

Over half of children diagnosed with an ASD are PDD-NOS. So in one sense, it’s the most popular of the five PDDs that comprise the spectrum.

July 3, 2011 at 11:13 am
(19) Sandy says:

Then maybe those rates will alter and a mis-diagnosis will be less likely in the future.

July 4, 2011 at 8:32 am
(20) Malia says:

That rather unfairly assumes that PDD-NOS is a “misdiagnosis” to start with.

Since you’ve also implied that the change made by the APA should have no affect outside the US, it may also depress the rates in the US against those elsewhere in the world… who would presumably go on making diagnoses on whatever basis they do today.

July 4, 2011 at 10:32 am
(21) Kim says:

I suspect this is a matter of who gets medicaid and who doesn’t. And how insurance is going to handle this when we get to the mandated “Obama Care”. It is another way to railroad the middle class into having to pay more-whether it be for insurance premiums,treatments,therapy. Although PD-NOS is a garbage bag instead of a person saying “I don’t know what’s wrong with your child”. They now are going to try and make it less meaningful, less problematic and perhaps limit the services the child already gets. Not neccesarliy the right treatment-because if they didn’t know what it was when they Dx PDD-NOS-then how could we as parents believe that just because they have “New codes” they now all of a sudden know what our children have. When before they had no idea!!! It’s another big company big insurance deal!!!! More money in their pockets I guarantee you that…And it is our children and their families who suffer and will continue to do so just to get what is needed. Proper treatment.

July 4, 2011 at 3:36 pm
(22) Venna says:

I don’t want to make light of anyone’s situation, but I don’t get what the big deal is. I have known some people who’s child has PDD-NOS or Asperger’s Syndrome and have ‘made a stink’ about living with a child on “The Spectrum”. Now people appear to be getting up in arms because the new release of the DSM-V may remove their child from “The Spectrum”. Given how ‘devastated’ their lives have been, you’d think they’d be happy to lose the stigma of ASD, particularly if it meant pinpointing more precisely what their child has to hopefully get appropriate treatment, then just to have them fall under a blanket diagnosis because they didn’t fit anywhere else. I remember when the manual was first changed to include AS and PDD-NOS on the spectrum and how angry it made people. We can’t really have it both ways, can we?

To me, it doesn’t matter how they rearrange things, it makes no difference to my son because he has Autistic Disorder. He has diagnoses other then AD also, but the manual changing doesn’t change things for my son.

Given how people want a cure, you’d think they’d be happy there’s a chance their child may have the label of ASD removed. Perhaps it’s more of how we see our children that effects things. How many of us saw our child differently after the diagnosis, even though the child didn’t change? Autism can be scary to hear, where as Social Communication Disorder isn’t quite so bad. My worry is that those who this doesn’t effect will be left behind. For them autism doesn’t change, their child doesn’t change. I believe the majority of children out there carrying an ASD label, fall under the PDD-NOS or Asperger’s category. This is obviously potentially a two-edged sword. Good in some aspects, and bad in others. Funds for autism research are already very limited, I believe this will make them even more so and attention will be removed from it, even though it is still an issue and still needs answers. Anyway, I think I should go now before I offend anyone else.

July 4, 2011 at 3:44 pm
(23) autism says:

Kim – it’s not that they suddenly know “what our children have.” They don’t know any more than they did. But they DO know what symptoms our children have, and they’re attempting to create more specific categories so that kids can be provided with appropriate supports. Right now, anyone on the autism spectrum is going to receive similar supports, whether or not they’re appropriate – and in some cases kids DON’t receive services because “people with Asperger syndrome don’t need speech therapy,” or “people with autism don’t have learning disabilities” (NOT true!).

Venna- except in the case of Asperger syndrome, which has become a way to identify oneself, I don’t think there’s strong feeling about changing a label. The strong feelings, rather, come from worries that kids with real issues won’t receive a meaningful diagnosis, and thus they won’t receive treatments or supports. I don’t know for sure how meaningful this concern will turn out to be.

Lisa

July 5, 2011 at 12:40 am
(24) Malia says:

The removal of Asperger’s may be about not providing speech therapy as you suggest; but I’m willing to bet those put into “social communication disorder” will ONLY receive speech related therapies with access to behavioral programs for those children will likely be denied. My son’s speech therapy is not what helped to me finally potty train him at age 5 or what taught me how to get him over regular total meltdowns in public places. Having a full-time classroom aide and then a part-time one IS what enabled him to go on field trips – including band trips (which also enabled him to graduate). I’m sorry that others are so severe that even all these supports do nothing. They did help my son, but without them, I suspect he may have been in a home by now – a tax dependent instead of a tax payor. It’s not about “just getting rid of the stigma” – it’s about just getting through school!!!

July 5, 2011 at 7:17 am
(25) autism says:

Malia – if you have a moment, would you email me off the list re band trips and your son’s experience? Tom is starting HS this year, and band is the one area in which he is at or above age-level ability. We have a really wonderful music program here, and the band director knows and thinks highly of Tom as a musician; he has said he’ll work to find a peer buddy within the band, but we’ve never really had that kind of situation so don’t know how it works or how to support it. Would love to know what worked for your son in terms of socializing in band, going on trips comfortably, etc!

Lisa
autism.guide@about.com

July 5, 2011 at 8:04 am
(26) Sandy says:

One has to separate disorders from other disorders. Anyone can have a learning disorder, autism or not. In the public school, the school can label a learning disorder and services can be provided without a medical diagnosis.

As for asperger’s, generally those wouldn’t get speech therapy because that diagnosis does not have delays in language or cognitive development or of age-appropriate self help skills. If a child with an asperger’s diagnosis does need those such services, then more than likely they are misdiagnosed, according to the current criteria of the DSM.

July 5, 2011 at 8:20 am
(27) autism says:

Sandy – I think that’s a misconception. While many work with speech therapists to actually learn to speak or form sounds, people with Asperger syndrome work with speech therapists to build pragmatic language skills – that is, the ability to understand and respond appropriately to idioms, jokes, and other social language. There’s a close connection, for many people, between speech and language skills and social skills, and often a speech therapist can make a big positive difference.

Lisa

July 5, 2011 at 1:46 pm
(28) jodifla says:

The Cracking the Enigma blogspot has an interesting look at PDD-NOS and the new DSM V. One study of a small group of 66 shows that most would NOT meet an ASD requirement in the new DSM-V. In fact, only two did.

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

July 5, 2011 at 1:57 pm
(29) jodifla says:

As the moderator of a message board for parents of late-talking children, I hope this slows down — or preferable stops — the rampant mislabeling of language-impaired children with autism or ASD. We have hundreds of parents on our boards, most terribly worried and confused about their children. They read the Autistic Disorder criteria, don’t see the match in their children, but are hounded into wrong labels, typically by EI or school personnel.

The truth of the matter is, ANY disability, including a language impairment, gets you an aide, OT, or anything else you need for FAPE in a public school.

Even the DSM-IV creators are appalled at the overuse of PDD-NOS, autism and Asperger’s labels today. It’s created an absolute mess, and it’s not good for anyone.

Specific and accurate labels by a skilled clinician are what children need, followed by therapies that treat the individual symptoms.

July 6, 2011 at 10:36 pm
(30) Malia says:

“The truth of the matter is, ANY disability, including a language impairment, gets you an aide.” – Not so (at least not in Canada while my son was in school). Almost any disability may have given the teacher an assistat, but it did not entitle the student to an individual aide assigned to the specific student that follows that individual student from class to class throughout the day. The disability had to be “serious” enough to warrant that – and mere speech issues were not generally considered to be in that category. ASD diagnoses presented more cognitive and behavioral issues that were seen as warranting the 1 on 1 attention. Whereas the DSM is used by other countries as a descriptive base – FAPE is exclusively American legislation.

July 6, 2011 at 11:55 pm
(31) Sandy says:

Of any disability, any number of related services can be obtained, or not. It’s all on an individual bases. Autism wouldn’t automatically get the child any more services than another disability if the child didn’t require it- public-school-wise, that is. That’s what jodifla was pointing out. A child who had a language impairment could very well get an aide, OT, or anything else if that child required it to obtain FAPE.

July 7, 2011 at 12:23 am
(32) Malia says:

Autism wouldn’t automatically get the child services here either… and I clearly NEVER implied that it did… HOWEVER, a mere speech disorder diagnosis would make it very difficult to get services beyond speech therapy. I have a young nephew who has been diagnosed with a speech issue – he gets speech therapy and only speech therapy… no aide. Not all children with PDD-NOS diagnoses get full-time aides, but those who need one do have an “easier” time getting one. The impression the school board has from speech disorder diagnoses is that 1 on 1 aides are not generally needed to “correct” them. Therefore, it generally takes the obtaining of a “stronger” diagnosis to get the approvals through for an aide if one is needed.

July 7, 2011 at 12:48 am
(33) Sandy says:

I never implied any one implied anything; I made a comment for goodness sake.
There is two types of Aides. One would be for behavior, the other for academics. I personally would think for academics, a 1:1 Para would be and could be acquired for the child with language impairment. Such a child might need the work broken down for them. That’s exactly why my son has a 1:1 Para for academics. Solely due to language impairment and he needs things broken down for him, 1:1.

July 7, 2011 at 12:36 pm
(34) jodifla says:

Unfortunately, it is true that Canada is different, and that you can’t get an aide unless you label (or in some cases, MISLABEL) your child with autism. I have heard reports of Canadian parents being told their child is not autistic, but the doctor would give them an autism DX anyway so they could get more help from the school.

Luckily, the U.S. is NOT that way. Any disability gets you ALL the help you need, if you know to ask/fight for it.

It’s a travesty that so many people think their children are “on the spectrum” when they actually have severe language disorders. They empty out their bank accounts on wrong therapies, and waste their children’s precious and fleeting childhoods driving them from one therapist to another.

Hopefully, the DSM-V will change that. If that field study holds up, the number of children on the spectrum will dramatically drop in 2013, and children will be more specifically Dxed with what they actually have, making it much easier to get treatment.

One note: Children with language disorders often have “soft signs” of autism that fade out once their language comes in. Their behavior can be particularly challenging because they are SO FRUSTRATED with not being understood.

July 7, 2011 at 1:02 pm
(35) autism says:

jodifla, you say “Children with language disorders often have “soft signs” of autism that fade out once their language comes in.”

That’s interesting, but I’ve never heard it before. Where did the info come from?

Lisa

July 7, 2011 at 1:23 pm
(36) jodifla says:

Dr. Stephen Camarata of Vanderbilt talks about it. We see it over on our late talker message board all the time. Eye contact comes to mind….late talkers don’t make much eye contact, because eye contact only invites more expectation that you’ll talk! Late talkers often repeat phrases they’ve heard in movies, and people confuse this with echolalia. Instead, they are learning language by the hunk instead of the individual word. Their behavior is difficult, because they are so frustrated with being misunderstood. They can be

“The Mislabeled Child” by Drs. Eides goes through the mislabeling of all kinds of children’s disorders, and they spend a lot of time on why children with language disorders are misdiasgnosed as autistic.

July 7, 2011 at 2:28 pm
(37) Sandy says:

I have heard this before and if you think about it, you probably have, too. Children who have language difficulties or delays often are frustrated and act out. It’s like a 2 yr old prior to learning their words, their communication is to hit, bite, kick and scream and this is actually developmental stages. Once they’re able to use words effectively, those behaviors do go away. Children with language disorders often don’t go through those stages. We parents of children with autism call it a melt down. My neighbors child would be a good example. He’s speech delayed, has some behaviors where you’d think possibly autism but after being around him, you can easily see it’s a speech disorder due to hearing loss.

I will have to say a speech delayed child possibly could show soft signs of autism, and not actually have autism. Speech delays can happen for many reasons other than autism.

July 7, 2011 at 9:30 pm
(38) jodifla says:

Here are some of the Eides specific comments from their book (she’s pediatric neurologist, he’s in internal medicine):

” Children with sound processing or background noise impairments will have difficulty following social interactions and may miss social cues. They may fail to respond or make eye contact with someone who is speaking to them. Children who mishear may change the thread of the conversation or respond in odd ways. Children with auditory hypersensitivities may avoid or become anxious in noisy social environments and act in odd ways when overloaded.”

The go on to talk about how they may repeat things that mimic autistic echolalia, but that the repetitions may help them process sound.

And on the language front, they describe how children with impaired language skills mimic autism because of their high frustration, emotional lability or cognitive inflexibility because they cannot express their ideas, preferences or opinions clearly.

The also spoke about it on their blog:

Late Talking Children confused with Autism Spectrum

http://eideneurolearningblog.blogspot.com/2009/02/late-talking-children-confused-with.html

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