Your Thoughts on the DSM 5 Changes

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This question has undoubtedly been asked before, however I'm giving a guest lecture on ASDs in two weeks and this will obviously be the first time I'll be discussing the DSM 5 changes made with regard to Asperger's, PDD NOS and Heller's syndrome. I'm interested to hear your thoughts and opinions about the removal of AS and others from the DSM in favour of lumping everything together under the label "autism spectrum disorder". Frankly I preferred the previous labels, because having so many deliniations of a disorder crammed under one heading feels disorganised and untidy. I know there are some aspies out there who don't like the idea of being labelled "high functioning autistic" because of the apparent stigma attached to the word "autistic". I don't mind it so much because at least now if we state our diagnoses, people will be more likely to understand what we're talking about.

I like and agree with the change. I do not believe that esp. between PDD-NOS, Asperger's Syndrome, and autism, the differences were nearly as pronounced as many want to believe they are. The rationale explained this. There are flaws in the new model as in the old, but I think it's an improvement.

As far as aspies who don't want the stigma associated with the autism label, I have to admit given some of the things they tend to say about people who were diagnosed with autism, that I don't have a lot of sympathy for their plight.

A rose by any other name smells just as sweet.

That said, it appears as though there may be a difference in brain functioning, at least as shown on an EEG. Whether that is meaningful or not, I really don't have the background to say.

http://vectorblog.org/2013/08/autism-an ... ast-on-eeg

I don't give a damn.
What's the real difference anyway?

The thing changed just weeks after my diagnosis. None of the things that led to my diagnosis changed. It seems a bit like arguing about weather the large, rotating, warm core, low pressure storm system generating sustained winds in excess of 64 knots should be called a hurricane, typhoon or cyclone.

I have been convinced (largely by Verdandi and Callista, I think) that the change makes sense because the old diagnostic labels were flawed. The inclusion of the sensory issues is something that I like because that's always been an issue for me and my thoughts about this are, to be honest, fairly self-centered. I dislike the sense that the new label is far less precise than the old even though I acknowledge that the old precision was flawed.

The argument that makes sense is that the old categories didn't fit reality very well and many people were pushed into PDD NOS, Aspergers Disorder, NVLD, etc. because of arbitrary and idiosyncratic diagnostic practice. The goals of accuracy and precision required a change.

On the positive side, having a broad umbrella diagnosis that is so very broad requires that clinicians to look at a lot of qualifying information. Ideally this will help all those involved with the care and treatment of people with ASD to focus on the symptoms unique to the individual rather than on the less meaningful, less accurate descriptions in the old manual.

On the negative side, this is far from an ideal world and people are often lazy, busy, or disinterested. When they hear autism they think of a simplified version of classic autistic disorder. They lump people together in unhelpful, unskillful and often abusive ways. These are the same people who regularly employ ridiculous national and ethnic stereotypes when grouping and evaluating others. These are the people who invented race and use it to brutalize each other daily.

What can we expect for such beings when we ask them to use a meaninglessly broad term the right way-- with a nuanced sensibility and respectful concern for the unique attributes of the individual with the label?

My hope and expectation is that scientific research will regroup ASD on the basis of etiologies and these groupings will logically result in new, more precise labels. Until the. I expect that the ASD label will often result in bad outcomes for individuals in systems run by typical people.

At my son's school they talk about him as having ASD but then add "aspergers" because they find it useful and meaningful. I don't see them either dropping that qualifier or going on at length about all the symptoms they expect when they use that word. They'll keep using it until something better comes along. ASD alone isn't it.

Edited to ad:
http://sfari.org/news-and-opinion/viewp ... erstanding
I thought this was relevant.

I am ok with calling it ASD. I think it is silly to look at IQ with AS. Language delay does make since, but sometimes the labels overlap too much and could be confusing. There should not have been as much of a difference between HFA and AS as there was. Also, PDD-NOS was definitely confusing since it seemed so spread over the place.
For me, calling it ASD actually more comfortable because as a child, I was diagnosed with AD ( too severe to meet the criteria with AS at the time) and as a preteen rediagnosed with AS. I have improved drastically, but when I think about the way I was when I was younger, I feel like it makes more since to call mine ASD.

I don't mind the change-I have no issues with being referred to as autistic. I understand that a lot of people with AS don't want the diagnosis to be removed because they see themselves as completely different to those with low functioning autism. Personally, though, from what I have noticed with just under 5 years experience of working with teenagers with low functioning autism, a lot of the behaviours I see in them I also display myself-it just shows itself differently because of the learning disabilities that a lot of people with low functioning autism have. That probably doesn't make as much sense as it did in my head but I hope people can understand what I mean.

I think that there are differences between AS and HFA.

One problem I read about was that some people with HFA are diagnosed with AS, and vice versa; that leads to misinterpretation.

To me, AS is just a branch of Autism. It seems ridiculous to simply group it all together.

It's the label HFA that I have a problem with .

My functionality is not impaired in the same way as those with "classic" autism, but it is impaired in such a way as to constitute a profound disability.

Autism is a spectrum - so is functionality.

I assume DSM V recognises this, but I've not read it...

From and educator standpoint, I think it is good to have some labels to distinguish between the various levels of Autism. I like the Asperger's label (if you will) because many people (including educators) are misinformed about Autism. When most people think about Autism they think about someone like Rain Man. For this reason many children with Asperger's are either undiagnosed or misdiagnosed as ADHD.

I have had children in my Reading class that I felt were Autistic that were left undiagnosed because of lack of knowledge on the teachers' part. I understand there is a spectrum, but I don't think teachers fully understand what that means.

I had a child who was in Kindergarten who I know in my heart was Autistic but no one would believe me. He was evaluated and had a behavior specialist, but the word Autism was never spoken. The reason being was that this child was extremely high functioning. The other children liked him because he was little and cute, but he did not always know how to behave appropriately. Because this child was extremely intelligent and gifted in many ways, his Autism was over looked. That should have been a red flag not a deterrence.

Rather than explicitly teach him about appropriate behavior, he used to get into trouble for it. He wasn't doing it intentionally. He just didn't know. The teacher often segregated him from the other children. When I spoke to the teacher of my concerns, she stated that he enjoyed playing by himself. Of course he enjoyed playing by himself, he was Autistic, therefore separating him was a reward not a consequence, but she still didn't get it. Neither did the principal or special educators.

They would complain that he would do things like lick himself and other children, but they didn't understand that this was a sensory issue not a behavior issue. He also had a great deal of difficulty paying attention, but they just said it was because we were asking him to do things that were difficult for him. It is true reading was difficult for him but that should have been a red flag not simply written off as a behavior issue.

I felt bad for him because he really wanted to do well, but no one was giving him the tools or the structure he needed to succeed. I used to have a very structured environment with very explicit rules that I went over with the children every day so he did very well in my class. When I used to pick him up to take him out for reading he used to run to the door to see me and gave me a big hug. Some people think people with Autism are not affectionate, but that is a huge misnomer as no two children are alike.

He did do things like "meow" like a kitten and try to lick his "paws" like a kitty, which in Kindergarten is silly to the other children. This was written off as "immature" by the other teachers. I was concerned that in later years this type of behavior would not be socially acceptable. Although many of the children liked him, I feared that being singled out all the time was going to have damaging affects on him.

Sooooooo all of this to say......I think there should be some distinction.

FYI I was diagnosed with Aspergers this year by a specialist with 30 years experience. In my diagnostic report there was one sentence noting that Aspergers diagnoses has been subsumed into Autism by DSM 5, that is it, everything else is Aspergers. So I have a good idea how she feels.

As for me selfishly after getting my "Aspie" identity after 55 years I don't want it taken away. But logically science should rule and from what I have seen the evidence is mixed. This was done because Aspergers became semi-trendy and thus over diagnosed.

My self identifying as “Aspie” does not mean I do not think of myself as Autistic because I am Autistic. Because I am a New Yorker and an American because despite what a lot of people in New York and elsewhere in America think, New York is part of America. In some important ways New York is “different” from the rest of the country. But New York has some American traits in extreme such as capitalism. Aspergers and Autism is a similar relationship

Science can't take your "Aspie" identity away any more than it can force an "Aspie" identity on me.

There is some relevant stuff from Simon Baron Cohen:

I'm encouraged that the DSM-V folds Asperger's into the ASD definition, but at the same time I'm disappointed that the sensory issues that seem to so many of us to be at the very core of autism/AS are still seen as optional or peripheral to the social aspects, even though it's been clear to many of us for years that the sensory issues are the core feature/cause of autism/AS and that the social/behavioral issues are just symptoms and not the core cause and thus should not be used as the diagnostic criteria.

I know that there are researchers and people working in the field who have been trying to push this idea, but for whatever reason they seem to be marginalized and not heard when it comes to defining diagnostic criteria and core features of the condition.

I've talked about this before, but I just wanted to throw it out there again.
I'm hoping eventually it'll gain some traction in the mainstream community.