xmlns:og='http://ogp.me/ns#' Yeah. Good Times.: Proposed Revision to DSMV: 299.00 Autistic Disorder

Wednesday, January 26, 2011

Proposed Revision to DSMV: 299.00 Autistic Disorder

EDIT4: Thanks to aspergirlmaybe for the heads up about this! I didn't know they also had the Levels of Severity on there. This is a really important part of this discussion!!

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.


EDIT2: I'm putting this at the top so it won't get overlooked.

In my opinion, to the question of "does the label really matter?" speaking as a mother and a human being, no, of course the label doesn't matter. But the opinions of moms and human beings don't really count when it comes to kids getting services, do they? What do insurance companies and school districts think? DOES the label really matter? That's the problem I'm having with this. We don't really know the answer right now, but I worry about what this means for the future. I'm certainly not saying I have any answers, just that I worry. I do that.

EDIT3: Okay, I realize that adult aspies might take issue with what I've said above. I'm only talking about kids getting diagnosed correctly and early enough to get services



From The Proposed DSMV
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.

This would be all that's in there and there is no more Asperger's Disorder.

Edit: PDD-NOS would also be eliminated

Thoughts?



35 comments:

Anonymous said...

My first thought is to wonder why "they" are doing this? Is it to limit the number of people with a diagnosis, excluding those with high-functioning Aspergers, and effectively ensuring that only the bottom-tiered people receive assistance? I don't understand why there is a need to exclude Aspergers as a diagnosis.

Maybe Kat knows.
Kellie posting as ... *shhhh* ... Anonymous

Anonymous said...

*gasp* I meant lower-functioning, not "bottom tiered." E-gads. Still with fever. Effecting brain function. Must.lay.down.

Jessica said...

So where exactly did Asperger's Syndrome go? Did all of those kids just dissolve into thin air or are they putting them somewhere else? Ugh.

MommyToTwoBoys said...

I don't really have an opinion here. My son doesn't have Asperger's so I don't really have experience with it. I am not sure how I would feel if he did have Asperger's. Would I want him lumped in ASD or not.

But I can without a doubt say that A,B,C and D and all the little tags and sidenotes are basically a description of my son.

jillsmo said...

I would be interested in hearing from somebody who actually uses the current DSM to diagnose. Do we know anybody who does that?

I think this sucks for kids with Asperger's who will likely not be able to get a diagnoses and therefore will be denied services. Didn't somebody (Molly?) once point out the correlation between this change and the fact that insurance companies are now being required to provide coverage in some states? This would certainly help out the insurance companies, making sure these kids don't get a diagnosis.

Dani G said...

Yep, we still qualify.

Insurance companies suck balls.

This side of Typical said...

You hit the nail on the head, Jill. And by head i mean those knob-gobblers who run the insurance companies. Jerks.

jillsmo said...

I found the quote from Molly, it wasn't about the DSM: "I think it's interesting that all of these studies are coming out showing the 'ineffectiveness' of autism treatment just at the same time as insurance companies are being required to cover it."

Still an interesting theory, though

@jencull said...

well, where I live this would be a good thing because PDD-NOS and Aspie children are not entitled to the same services as a child with autism, soooooo, if they just put a general label of autism/ASD on the lot then it will benefit a lot of children here and that has to be good. There isn't a whole world of difference between all three diagnosis anyway and I think there are a lot of children misdiagnosed. One diagnosis of 'ASD' will remove the fine line and make it easier for children to get help, like I said though, that could just be in my country.

The way I see it is that a name is just that, a name, the important thing is that a child, any child, gets support and assistance to reach their potential. Does it really matter what it is called?

Jen

PS, will I have started a big fight now?? :D Maybe Ann is lurking, just waiting for an excuse to pounce on your blog!!

Life in the House That Asperger Built said...

Well, under this definition both of my kids would still get diagnosed. What really concerns me is Letter C as it pertains to girls. What's considered "early childhood"? Many Aspergirls go relatively undetected until 12. I'm pretty sure that's not "early".

I guess, with this wording I have a bit of a better understanding about why some Aspies are up in arms. I don't mind one bit being labeled Autistic, but as it's worded above, I wouldn't have met the criteria based on C (early childhood), and D..no one noticed it was interfering until I couldn't keep a job or a friend (again not in early childhood).

Hmm. This might be giving me a knot in my stomach. :-(

jillsmo said...

Oh crap, I didn't mean to make you have a knot in your stomach!

But, you know, the term "aspie" technically wouldn't exist anymore. What would that do to adults who self identify as such, like you do?

jen, I totally agree with you about the "what's in a name" thing, it really shouldn't matter. I just worry that by changing the definition like this, which has been both broadened by being less specific and also narrowed by eliminating those other two, would that mean that kids won't get the dx that they need? If this were the definition when Child 1 was dx'ed 5 years ago, it wouldn't have made a difference. But what about for LIHTAB above me? And what about other aspie kids? Or any kid who is mild enough that they would have gotten pdd-nos.

I like that they added the sensory aspect, but do you notice that "speech delay" isn't in there anywhere? That used to be a huge part of the DSM-IV's 299.00

Jen said...

I don't think they are eliminating Aspergers and PDDNOS as much as they are absorbing them. There will be one spectrum and then kids will fall somewhere on it. I think the main trouble some people have is that they feel Aspergers is a separate dx and they don't want to be lumped it. Here in MA Aspergers and PDDNOS are considered on the spectrum, so it doesn't really matter, and our insurance pays for therapy b/c they also consider pddnos to be Autism. Katie has pddnos and still fits the new criteria...I don't think it will change much for a lot.

Jen said...

And getting rid of the speech delay I think is good. Katie is MUCH more Aspergers, but had a speech delay so she is automatically dq'd and is pddnos, but then we meet other kids with pddnos who are SO different. And then there are those with pddnos who really are classic Autism. It's so confusing and depends on the dr you see. This might make it easier. Does the label really matter...no. But sometimes schools are strict with therapies, and I would hate for Katie to be forced to get maybe ABA all day long when she really needs social skills...kwim?

jillsmo said...

Child 1 is a lot like Katie. Looking at the current DSM he would technically have Asperger's except he had a speech delay so he can't.

Jen said...

And b/c I can't shut up...ha...I LOVE that sensory is now recognized. (or will be)

jillsmo said...

ME TOO!

Rachel Cohen-Rottenberg said...

I'm pretty happy with these changes, now that I've seen the full text. I agree with Laura that girls are still going to be less likely to get dx-ed, but that has always been the case.

I especiallly like the fact that there is a disclaimer about "may not become fully manifest until social demands exceed limited capacities." Yeow! That describes me to a T. I think that one might have seen the symptoms in my early childhood, had there been a diagnosis, and had my parents been on planet Earth.

All that being said, a short DSM entry will never describe all the multi-layered aspects of being autistic, but I think that this one goes in the right direction.

And from what I understand, people with Asperger's or PDD-NOS will not need to be rediagnosed.

sharon said...

My little guy is dx pdd-nos, but they suspect will change to Aspie once he is 3. Labels aside he is clearly Autistic. So I see some sense in the elimination of the variations. That aside however I think Aspergers does have some clear differentials from 'classic' autism. So essenially Ive diagreed with my self using a circular argument. Perhaps I'll shutup now.

jillsmo said...

Rachel, you are so right about a short DSM entry never being able to do it justice. I guess brevity is important, though, if only to just get the thing written and out the door.

When you say they will not need to be rediagnosed, do you mean that people with those current dx's will remain as such, even though they technically won't exist anymore? Will the term "aspie" still exist?

jillsmo said...

LOL Sharon. No need to shut up, despite your circular argument! Haven't you read any of the crap I've written? Logic and rationality isn't necessarily important here ;)

My son was originally diagnosed pdd-nos but was "upgraded" to autistic disorder about a year later, and like I said, if it wasn't for the serious language delay he had prior to year #3, he really is more of an aspie at this point. I guess it doesn't matter anymore, though.

Having said that, when he was first diagnosed, it was explained to me that "pdd-nos is on the spectrum but it's not autism." That was kind of a battlecry for the denial that I had for the next 9 months. "he's on the spectrum but he doesn't have autism." Kinda stupid when you think about it, and this DSM version would have made my denial impossible and probably would have been better for me.

See what I mean about logic and rationality not being necessary here?

Jen said...

I think it will be really hard to get rid of Aspergers. People identify themselves as that almost like it's a religion. It's a huge part of their lives and they want to be seen differently from those classically autistic. I don't think it will be hard to move on from pddnos. I think it's only a positive move for those who have that dx. A lot of disorders have one term for a broad spectrum. Even those with something like Down Syndrome...some are super HF and some are not...but it's not like you get 3 different dx to choose from. Simple is always better.

Not Just Another Mother Blogger! said...

Speaking from the other side of the table, this new set of criteria 'fine-tunes' what is needed for diagnosis. Just like the symptoms of what constitutes diabetes have changed over the years. Qualifying for special education services, however, does not require a DSM diagnosis. The federal law is specifically written that way. If a child meets an eligibility criteria and has an educational need, they qualify. A child with Aspergers would still qualify due to deficits in pragmatic language, if nothing else.

Also, the handicapping condition does not dictate the services provided. The IEP team is supposed to provide services based on the needs of the child, not the handicap. So even if a child doesn't carry a diagnosis of autism, if they need the services based on the data gathered, they are supposed to get the services. Period.

A parent's best weapons in trying to get services and insurance coverage is data and a working knowledge of the law. Data from doctors, therapists, teachers, aides, etc., must all be considered, and if services are to be denied, there must be data to support that decision. Ask to see it.

jillsmo said...

That's all well and good in theory, but we all know that what actually happens is that school districts will say "your child doesn't have a diagnosis and isn't eligible for an IEP" regardless of whether or not this is true or legal, in the hopes that parents won't know any better and won't fight for their rights under IDEA.... and it works ALL THE FUCKING TIME. But, that's not really the point, anyway...

/end rant

aspergirlmaybe said...

I think what's missing from the discussion is the new definitions of Levels of Severity, which have finally shown up on the website after a long wait. There are three levels, so that pretty much covers the former Aspergers/PDD-NOS/Autistic diagnoses from before. (Rett's and CDD are being taken out of the old category altogether, I believe.)

I'm curious, since the levels show a description for social communication and another one for interests & behaviors, whether people could be described in different levels for each or if the clinicians will just pick the most appropriate level overall.

As far as adult Aspies who are self-diagnosed, level 1 allows that a person may do well with supports in place. What does it matter if the Aspie is the person who identified what supports were needed and set them up for herself?

jillsmo said...

Levels of Severity!!! Thank you for telling me, I didn't know they had released those. I wasn't sure they even existed at all!

Alysia - Try Defying Gravity said...

I love that sensory piece is added as well. phew. I'm pretty sure my son would have still qualified, although it's "A" that's murky for me. And still so subjective. What one doc sees as a deficit, another might not see on a different day. So I don't know.

The one thing I do like about one umbrella of spectrum disorder is that it might take away the comparisons of severity (oh, your kid has Asperger's, well mine has PDD-NOS, etc.) and maybe we can all come together as one community to fight for what our kids need. (that's the pollyanna in me...)

My brother is a psychologist, and he said that many psychologists are pushing for a different type of DSM - more of a "problems of living" where the symptoms that interfere with every day life are treated w/o a specific label, but more just because the patient needs treatment. But psychiatrists (and insurance companies and school districts) prefer labels because it's easier to classify/medicate/deny services that way if everyone fits into neat little categories. But we all know that w/ASD there are no neat little categories.
I assume the debate will continue...

Rachel Cohen-Rottenberg said...

jillsmo, my understanding is that people with an Asperger's diagnosis will end up in the low-severity category for ASD, basically because the only difference between AS and HFA in the current scheme of things is a language delay. The logic seems to be that as long as a kid starts talking, and keeps talking, does it really matter when they started? I started talking at 2 1/2, which is slightly past the cutoff for Asperger's, but because I was diagnosed at 50, and my language skills are excellent, no one thought it really counted anymore. And I agree.

The Asperger's label will go away. That doesn't mean that people who have been dx-ed with Asperger's will stop using it. I think a lot of people will be hanging onto it for dear life. For some, it's an important piece of identity, while others just want to distance themselves from the stigma of the word autism. (I support the former reaction, but not the latter, btw.) For clinicians, Asperger's will appear as an initial dx that has been reclassified, and they'll move over to calling kids with Asperger's by the new definitions.

I don't know where PDD-NOS folks end up on the spectrum, since I don't know anyone dx-ed PDD-NOS. Maybe someone else can answer that question.

Not Just Another Mother Blogger! said...

PDD-NOS is going away because it's too vague, and it's a "throwaway diagnosis"--basically, the person saying that is saying "if it walks like a duck and acts like a duck, it must be a duck, even if it doesn't actually look like a duck." I know that there are doctors who throw that diagnosis on a kid because they have no idea what is going on and don't want to spend the time figuring it out. Other disorders are losing their NOS options as well.

You also have to consider that there are quite a few people out there with Asperger's who don't need any services other than a point in the right direction. Ther very definition of a disorder is that it interferes with quality of life, and the person is not able to function as a result. If you have Asperger's, if you are okay with it, and it doesn't cause you to lose your job and end up living in a box under the interstate bridge, then it wouldn't be a disorder.

That's the theory anyway.

And most of you should just pack up your stuff and move here to Texas. My district seems to bend over backwards to give parents just about every thing they could ever dream of asking for. But you didn't hear that from me...

jillsmo said...

So. Um. What is your district, exactly?

Life in the House That Asperger Built said...

Jill, YOU didn't give me a knot in my stomach, the new criteria is. :-)

You're fucking amazing!

Life in the House That Asperger Built said...

Oh, and I don't really care if it's in a book or not, I just like the word Aspie.. :-)

Cheryl D. said...

My daughter has a high-functioning Autism diagnosis officially even though the psychologist that diagnosed my daughter said that her diagnosis is actually Asperger's. Why did she label her HFA then? Because the state of California doesn't recognize Asperger's as autism. The psychologist gave my daughter the HFA label because she considers Asperger's to be a form of HFA. Like California, the state of Texas also doesn't recognize Asperger's as autism. So, if you live in California or Texas and have an Asperger's diagnosis. You're screwed. You get NO services! I know people here with kids that have PDD-NOS diagnoses and they too are screwed. Regional centers don't consider their cases to be severe enough to warrant services.

I think it's MARVELOUS that the Asperger's and PDD-NOS labels are going away as official diagnoses. They're confusing, plain and simple.

However, just because the official diagnosis is going away doesn't mean people won't still identify themselves as having Asperger's or being Aspies. I consider my daughter to be one even though she doesn't have the official diagnosis. I can't see this changing!

Life in the House That Asperger Built said...

Oh, and after reading some more of the comments, I'm not one who doesn't want to be known as Autistic. I frequently tell people I have an ASD. In fact, I'm more likely to use that term when describing myself IRL. But "Aspie" is a nice nickname. And since Hans Asperger found the SAME thing as Kanner at the same time on another continent, I think it's ok to still use it. And I'm not changing my blog to Life in the House That Kanner Built. It just doesn't have the same ring. :-)

spectrummymummy said...

I'm another person who likes the new criteria. My daughter got two different diagnoses (PDD-NOS and Asperger's Syndrome) as we had two evaluations done at the same time (long explanation). She'd definitely still qualify under the new criteria.

I have no problem saying she has an ASD, but I love the term Aspie too, I don't see it going away as a self-identifier. And it doesn't matter which diagnosis we'd go with anyway here, services are the same (great school district, no insurance coverage).

Alicia D said...

I am both a doctoral level clinical psychologist (who worked for years with the developmentally disabled and ASD population) AND the mother of a "low functioning" (for lack of a better word) teen with Autism. Since Ive been a SAHM for almost 6years i am TOTALLY out of the loop! It was very interesting to see this. I didn't have a real emotional or "gut" reaction to the new criteria. I see the drawbacks of labeling on a human level, but they are important for conveying information among professionals and even to help others understand you or your child's situation. For instance, when I say my daughter has Autism, most people think she is verbal, toilet trained, high functioning bc that is the "media presentation" so to speak. Yet, she is operating at about a 1year old level in all areas of cognitive, socialization, motor skills, language, is 15 and needs all self-care done for her, is in diapers, non-verbal... So, its like: how do you get the picture across w/o getting into deficit-based labels??? Its hard,when you always want to be strength-based.

anyway, really cool and interesting piece of info. I'll have to stew on my thoughts for a while.... thanks!

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