Opinions on the new diagnostic criteria in the DSM-V?

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Hey everyone! My name is Austin. I am a senior Psychology student at the University of Notre Dame. I am in a class specifically about the changing DSM - V diagnostic criteria for Asperger's Syndrome and Autism Spectrum disorders. We have talked and researched a lot on how the Aspie community has responded to the changing criteria (both positive and negative). But we haven't really looked into how people who dont have Asperger's but still are affected by the change. I am really interested in hearing some opinions from people who have a diagnosis of Autism or PDD and how they view the change in criteria. I have a lot of questions so if you are at all interested in helping me understand more about this interesting change and your opinion please pm me know!

But just to ask a specific question in this post, anyone who has a diagnosis of Autism or PDD, how do you feel about the absorption of Asperger's into the Autism Spectrum Disorders? Do you think it is a good move or do you feel it should be a separate diagnosis?

I'm going to be pretty relieved to just be called "autistic". Like most people on the Spectrum, my best-fit diagnosis is PDD-NOS, which means that my case doesn't quite fit into any of the other categories, but it's definitely autism. If the most common category is -NOS, you know something about the criteria is a little bit off.

There's this stereotype about Asperger's that it's all about a smart "little professor" who can't possibly have any of the problems that people with classic autism do. We're not supposed to have problems taking care of ourselves, maintaining conversations, or getting our words to do what we want them to do. We're not supposed to have problems with transitions. We're not supposed to have this autistic cognitive style. The idea is that Asperger's is just a shy genius... well, that's not true. For some of us, me included, the non-social aspects of autism are the biggest obstacles.

The separation is just plain arbitrary. In adulthood and for verbal people who can do their own basic self-care (most people with classic autism can, by adulthood, unless they have other disabilities as well), you can't tell the difference between Asperger's and Autistic Disorder unless you take a childhood history. The spectrum simply does not fall comfortably into two categories. It's one big mess, with a lot of diversity. We don't divide cerebral palsy into separate diagnoses depending on whether you can use your hands or not, do we? We don't call depression a different thing if you're suicidal, right? Well, why autism? It's normal to have a wide range of severity within a diagnosis.

The Asperger's/Autism divide is hurting people on both sides. If you're diagnosed Asperger's, people think you can't possibly have any of the problems that people with classic autism have, and therefore you can't get help for them if you happen to have them anyway. If you're diagnosed with classic autism, people think you can't possibly have any of the abilities that people with Asperger's have, so you're locked out of opportunities you should've had. You get burned either way unless your doctor basically says, "Forget your specific diagnosis. Let's take you as an individual and go from there."

Which is, hopefully, what merging the spectrum will do--force people to think of us as individuals. I know it'll always be a problem that we're stereotyped by diagnosis, but at least with a single broad category we should force them to think about the fact that we're not all the same.

what is the current criteria?

I know you are asking for input specifically from people with classic autism and PDD, but I'd like to toss in a couple pennies anyway. I have Asperger's, fyi.

I agree with Callista that it is a positive amendment to the classification. The current separation into a variety of different terms is mostly counterproductive both for the physicians engaged in diagnosis and treatment, and the people on the spectrum themselves. While I understand there is concern from people diagnosed with PDD or AS that they will lose the ASD status and be cut off from government assistance, I think that fear is unfounded. The intent of the changes is to unify the terminology and amend the diagnostic criteria a bit. It's not about saying a certain level of high functioning is henceforth not disabled, or anything like that.

The Dx being changed to "autism spectrum disorder" with a tacked on addendum at the end for specific severity is perfectly functional way to classify.

Callista thats exactly the kind of response im looking for. I like how you liken aspergers and autism diagnosing to medical disorders like cerebral palsy. I think its a pretty fair analogy to describe how its kinda senseless to separate diagnoses for something like that. Can i take it from your comments that you will fit under the new criteria in 5 you will fit under the ASD?

Chris since i am new to the site I can't include the websites with that info in here but if you google DSM IV autism criteria itl be the top link!

And MrStewart its absolutely fine to toss your few cents in haha. Even though i have certain things i am looking for I welcome any dialogue. I completely agree with your comments how that the change to a spectrum is a good move. Do you mind me asking if you are going to fit in the ASD criteria? And if so are you still going to use Asperger's to describe yourself?

I have autism, and I support the DSM-5 criteria. I think that they are a clear coherent definition of autism.

I would meet the new criteria, yes. New criteria is actually more fitting for my particular symptoms than the old due to the addition of sensory sensitivity. Probably in future I will go with the new terms to avoid confusion. HFA I suppose that would be? That's fine. I'm never sure if I'm pronouncing Aspergers correctly anyway. My therapist says it one way and my pdoc another.

My diagnosis is Asperger's, but if I had to give myself a diagnosis I actually would have given myself PDD-NOS. I'm definitely atypical. I don't feel the Asperger's diagnosis fits me as well as a description of atypical autism would, because my self-care skills are that impaired as an adult, because my developmental path was abnormal, and because I generally fit inbetween classic autism and Asperger's in a lot of ways.

I call myself autistic. I only identify with the label Asperger's in that the Gillberg criteria describes me quite well. I specifically call myself autistic though

I'm immensely glad of the new DSM-5 criteria. Callista described my thoughts well, and I'm not functioning at a level that I can write currently, but I wanted to make sure to second everything she said and add anything else I'm able to at the moment.

The separation being arbitrary actively has harmed me. I've actively not gotten help that I need because of my diagnosis being Asperger's. People assume I act in certain manners which I do not act because I have the Asperger's diagnosis - because of this arbitrary separation. It wasn't that they denied me help. It was that they went to give me help, assumed I acted in certain manners, and then kept trying to force help in those manners on me until they had repetitively pushed me into shutdown. People attempting to help me become employable by pushing me into shutdown because of assuming that I would be getting help in the same way that a stereotypical person with Asperger's would get help was incredible harmful to me, because it meant that I did not get any help. I needed to fit those stereotypes. I needed to fit my diagnosis.

A more generic diagnosis that described me better would have let them tune it to me better. It might have gotten nowhere but it would have given me a better chance. It would have let me be an individual.

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The new criteria fit me better than any of the DSM-IV criteria. I actually am seriously debating getting a re-diagnosis after the DSM-5 comes out in order to change my diagnosis to using the DSM-5 language. Also, to get a severity rating, so that people actually take my severity seriously. I should be a severity 2 social, and my severity for non-sensory RRBs has varied between 1 and 2.

I'm for the change, It's hard when you're trying to explain yourself to someone close to you or someone you care about and they just don't understand what you mean when you say Asperger's syndrome. It would be much easier to say Autism or high functioning autism as most people are prone to know what that is vs the specific syndrome I have.

On the negative though I've received odd looks (can't explain them because can't recognize them) when I tell people sometimes when I tell them about my psychological eh.. diversity.

Yes, either mild or moderate, depending on how strictly you interpret the criteria. One issue I have with the new criteria is that it's entirely possible for you to be at one severity in Social/Communication and another in Restricted/Repetitive Behaviors/Interests, and there isn't a provision for how to handle cases where that's true. Another issue is what to do for cases where there are a few strong traits, causing impairment but not numerous enough to meet the criteria. They need to be absolutely sure that those cases won't vanish into the cracks between diagnostic categories. For example, somebody who currently has a speech delay and nothing else can be given a diagnosis of one of the speech/language disorders; so they don't need to be included in the autism category. Someone who only has repetitive behavior could be described as having stereotypic movement disorder. They need to be sure that they aren't requiring multiple traits in cases where a few strong traits will cause the same sort of impairment.

Both of those are issues that exist under the current diagnostic system, though, and the DSM-V seems to be an improvement for both problems. With the current system, most people fall into the cracks between diagnostic categories. That's why PDD-NOS is so common a diagnosis. If the DSM-V can at least put most people into a useful category instead of wimping out and calling it -NOS, we'll have made some headway.

My interpretation was that you'd get assigned numbers for each individually.

So to the best of my knowledge I should be social 2/ RRBs 1, assuming that they aren't taking sensory stuff into account. Social 2/RRBs 1 is a good description of my autism, just one number isn't.

So I'd describe myself as Social 2, RRBs 1, passive subtype with comorbid severe sensory processing disorder and migraines.

But I'd specifically use two seperate numbers for the different levels.

(I've gone up to RRBs 2 as I've became more autistic due to stress, but social 2/RRBs 1 is my natural point to be at)

-not otherwise specified will finally be specified.

DSM-IV-TR puts me in AD due to delay in speech, lack of speech, and lack of imaginative play as an infant and toddler (the Communications subgroup). Progressed enough to turn into the prototypical Asperger's presentation (the interest and lack of social and emotional reciprocity whilst lacking and understanding nonverbal stuff).

Seems like they're the same thing other than severity of symptoms, considering someone like me can start off as one and move to the other. Hence, it makes sense to put them together if said criteria can pick both up equally well.

I don't think PDD-NOS is going anywhere, except in name. DSM-5 has a strict list of criteria... you have to qualify in all 4 categories to be diagnosed (7 of 9 subcategories) . Miss one, and even if you have severe impairment you no longer fit anywhere.., that's going to have to be dealt with.. you can't have doctors going 'sorry you only scored 6. Don't let the door hit you on the way out..'

I like the change. My daughter was diagnosed this summer (she is 5) and the doctor performing the DX basically used the new DSM before it was officially released in order to help us out. My daughter is definately a "little professor" but she also has some pretty "oustanding" autistic traits. So "severe", one might say, that she really straddled the line between autism and aspergers. The doctor said that she would say that she has very severe aspergers, or moderate autism with no verbal delay. She is a genius, and she speaks like an 8 year old BUT her other symptoms and behaviors are so severe that they are very impactful on her functioning. In order to get the help we would need when she started school, she diagnosed moderate autism. It has definately been beneficial to get that diagnosis instead of aspergers because the school has specific things they allow or consider for the IEP based on the diagnosis, and the things they allow for autism are more appropriate for my daughter.

From what I gather, not every person with aspergers or autism is the same (little sarcasm there, like with any group of people, everyone is different). I think it makes a ton of sense to have one umbrella DX for autism that can cover every possibility and then pick and choose from that.

I think getting rid of the AS diagnosis is poor, but at this point, the DSM-5 has so many other potential changes that I feel are worse that I don't care all that much about the elimination of AS. I think the elimination of the mood disorder category is much worse. The bipolar/depression/schizoaffective changes are the ones that REALLY anger me. Bipolar disorder is my area of specialty, and I don't understand why more people aren't up in arms over the ineptitude the DSM-5's putting forth regarding mood disorders.

Also at this point, I'm more annoyed that NVLD is not being added in conjunction with AS being taken away. As far as accommodations go, other than sensory issue-related things, the only accommodations I ever require are related to my NVLD. So, without an AS diagnosis, what do I submit documentation for now? "Learning disorder, NOS"? I'm a big believer that there are those with AS who are more NVLD-like and those who are more autism-like. I do not really relate with an autism diagnosis like many on here, and I wish the DSM-5 would delve more deeply into the tangled web of autism vs. NVLD.