Was anyone aware of this?

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I came across a video of an interesting talk given in the UK by Temple Grandin in June 2012
(see first video on the page), hosted by the National Autistic Society

http://www.autism.org.uk/conferences/grandin2012 (be warned, she hardly pauses for breath - it comes across like the longest monologue you'll ever hear! But also very interesting and entertaining)

I was pleased to find the video as tickets to see Temple Grandin talk are usually expensive - near on £100 for a previous visit ie way out of my price range, so to see her talk for free like this is ideal.

Anyway, partway through the talk she refers to the planned future removal of Asperger's Syndrome from DSM-V and she says there will be a diagnosis change, with Asperger's being diagnosed in the future as 'Social Communication Disorder', not Autism. This is the first time I've heard anything like this said and wondered if it was news to everyone else(?)

I couldn't tell if she was speaking from a position of authority/inside information on the matter or if she was just speculating re what might happen in future.

I wasn't aware of this 'Social Communication Disorder' at all but looking at the DSM-V website I've found it and it seems to be a proposed new condition as it wasn't in DSM-IV:-

http://www.dsm5.org/ProposedRevisions/P ... px?rid=489

"A. Persistent difficulties in pragmatics or the social uses of verbal and nonverbal communication in naturalistic contexts, which affects the development of social reciprocity and social relationships that cannot be explained by low abilities in the domains of word structure and grammar or general cognitive ability.

B. Persistent difficulties in the acquisition and use of spoken language, written language, and other modalities of language (e.g., sign language) for narrative, expository and conversational discourse. Symptoms may affect comprehension, production, and awareness at a discourse level individually or in any combination that are likely to endure into adolescence and adulthood, although the symptoms, domains, and modalities involved may shift with age.

C. Rule out Autism Spectrum Disorder. Autism spectrum disorder by definition encompasses pragmatic communication problems, but also includes restricted, repetitive patterns of behavior, interests or activities as part of the autism spectrum. Therefore, Autism Spectrum Disorder needs to be ruled out for Social Communication Disorder to be diagnosed. Social Communication Disorder can occur as a primary impairment or co-exist with disorders other than Autism Spectrum Disorder (e.g., Speech Disorders Learning Disorder, Intellectual Disorders)"

D. Symptoms must be present in early childhood (but may not become fully manifest until speech, language, or communication demands exceed limited capacities).

E. The low social communication abilities result in functional limitations in effective communication, social participation, academic achievement, or occupational performance, alone or in any combination."

I can see the point Temple was making, ie people who may previously have been diagnosed as having Asperger's Syndrome may well end up with this Social Communication Disorder diagnosis instead if it ends up in the DSM-V, as with there being no separate autism category for Asperger's and the diagnostician believing the person doesn't present with autistic-like features, they may well decide it's not autism.

I find it incredible that, having created Asperger's Syndrome as a concept, they are now busy trying to wipe it out of existence! I think Temple might also say something like 'It's to do with funding availability that this is happening', which, even if she doesn't say it, makes total sense to me!

The 'system' has never really known what to do with people who have Asperger's Syndrome; they don't really know how to effectively help a lot of people diagnosed with it, so now they're pretending it's not in existence any more and trying to assign a more general 'has social communication problems' diagnosis to make up for the fact of removing the Asperger diagnosis.

It's probably more useful and less stigmatising to have this 'Social Communication Disorder' diagnosis - I would have appreciated being diagnosed with this more than Asperger's Syndrome, with the implication that I was autistic. Ideally though I'd like to have just had help for the problems I was having rather than being given a label. All people have varying degrees of social communication problems - it doesn't need to be a specific diagnosable condition in my opinion; it's part of the human condition! They've got themselves into a right mess as regards getting rid of the Asperger's Diagnosis though, hence this is evidently their misguided attempt to sort it out.

When they finally make their minds up on what 'condition' anyone has actually 'got', perhaps they'll let us all know!

In my opinion it demonstrates what a farce half of these diagnostic criteria really are if they keep removing and changing them! They are effectively arbitrary and meaningless.

I don't see it as making all people with Aspergers not a part of the spectrum, as most people with Aspergers don't have only communications problems, in fact they have less verbal communication problems than others on the spectrum (hence being mistaken for a separate condition for so long), with the issues of communication being the less outwardly obvious problems. They have many of the other traits from the spectrum regardless, such as sensory issues, executive function problems, and single channel concentration.

People with Aspergers will be most likely integrated into the spectrum, not put under a different classification.
Those with purely communication difficulties and none of the other traits can and probably should be given a different classification.

I came across this on Temple Grandin's website which gives more detail on her views on the subject:-

http://www.templegrandin.com/templegrandinart.html

"Proposed Removal of Asperger’s from
The DSM-V Diagnostic Manual

The American Psychiatric Association is proposing to eliminate the Asperger and PDD-NOS diagnosis and merge them into autism spectrum disorder. This would occur when they publish the new diagnostic guidelines in the DSM-V. They are also proposing to create a new diagnosis called social communication disorder. The description of the symptoms for social communication disorder are similar to Asperger’s. Some of the features of social communication disorder are difficulty in social uses of verbal and non-verbal communication and social communication problems that have a detrimental effect on employment and social relationships. To be labeled autistic, the individual also has to have additional symptoms such as sensory problems, fixated interests or repetitive behavior. It is my opinion that social communication disorder is part of the social impairment continuum of the autism spectrum. I fear that many Aspies will be switched into this diagnosis when school districts get short on funding.

The changes in diagnostic criteria are probably going to cause the most problems for older, fully verbal children who have normal intelligence and are diagnosed in late childhood or adolescence. I have observed many individuals who have had a diagnosis that switches back and forth between ADHD and Aspergers. Another problem is that some individuals may get a diagnosis that will hold back their progress such as conduct disorder or oppositional defiant disorder.

Do Not Get Hung Up On Labels

Diagnosis with either the current DSMI-V or the proposed DSM-V is not precise like a diagnosis for bacterial infections where precise lab tests can be used. Psychiatric diagnostic labels were determined by both scientific studies and the opinion of committees sitting around conference room tables in hotels. Nobody debates the results of lab tests for a strep throat. Over the years, many psychiatric diagnoses have changed.

In conclusion, when individuals on the milder end of the autism spectrum are labeled, you must remember that the following words all mean the same thing. Asperger, Aspie, geek, nerd, mild autism, social communication disorder or socially awkward. The science clearly shows that the social problems on the autism spectrum are a true continuum. It is likely that some of the individuals who tell their stories in this book would be diagnosed as social communication disorder if DSM-V proposed criteria were used."

These are the views of Temple Grandin and I'm inclined to agree with her. It remains to be seen what will actually happen in practice though.

I heard that they wanted to remove Asperger's from the autism spectrum, but I didn't know they had already come up with a name and criteria for it. I thought we'd made a loud enough outcry that they weren't considering it anymore.

It's very sad...but I can't verbalize why. It's just very sad that they're doing this. It's about money, not about helping people who need it.

I'm afraid that they are upset with all the people who are self-diagnosing. It's like they're saying, "Get out of here, you don't really have autism. We don't want to help you. We want to save funding for the low-functioning autists, aka the people who REALLY have autism." Notice how you can only have this new disorder if autism is ruled out.

In a way, it also reminds me of the therapist I went to see when I sought a clinical diagnosis. I was seeking it because I was having trouble finding a job, and I wanted some therapy to help me get up on my feet like "normal" people.

Therapist: Well, after I read you these 5 archaic stereotype questions, it seems you don't match the criteria for Asperger's. But this is a good thing! It means you're ok!

What I should have said: No, actually, it means all the suffering I endured as a child is still a mystery, and it means I will continue to suffer without help in a world which will not acknowledge that I have a disability or disorder of some kind. It is not a good thing. Not having Asperger's does not magically make all of my problems go away.

Not sure if any of that made sense or if I'm just rambling.

I somewhat agree with her assessment, but not for AS. It's PDD-NOS and NLD that this may be addressing. PDD-NOS is diagnosed where AS like features are present, but something key is missing such as symptons present throughout childhood OR the lack of repetitive interests.

PDD-NOS is not catered for in ASD in DSM-V. AS still fits.

One observation of Grandin, is in typical aspie style she is very firm on her beliefs, but she can get things wrong, she does usually put it right afterwards.

Jason.

According to the DSM-IV, people with AS must meet at least one of the RRB criteria to be diagnosed.

According to the DSM-V, two are required.

So I guess that social problems + special interest + lack of other RRB = SCD instead of ASD, according to the DSM-V.

I wonder what percentage of currently diagnosed people with AS fit that profile?

It's rather ridiculous how they just made up this new disorder, SCD, in the DSM-V.

I knew. My daughter was just diagnosed officially a few days ago and to "save us the trouble" rather than dxing her as aspergers, they dxed her as having moderate "autistic disorder" with no verbal delay. They said it would have been aspergers if not for the change.

I was aware not all aspies and PDD-NOSers were going to meet the new criteria but I keep hearing most of them will meet it and there really isn't a change. They are just making it more clearer. But I noticed it's tighter is all so I think people will still be excluded who are autistic now but won't be in May 2013. Maybe they will be the minority.

I am betting some people with SCD may have autistic traits if their symptoms were not strong enough to meet the ASD criteria, same as if it doesn't limit them enough nor impair them enough because they can do good hiding them. I wonder if "Joe" in the Hidden Autistic article I shared here would meet the SCD criteria and not the ASD criteria. Or maybe he might if he needs support from his wife and showing them everyday at home counts as limit and everyday impairments. Same as if they didn't have all three social deficits in the criteria but yet they met two or more RRB in the second part. Imagine if someone met two social deficits in the first part and enough RRB in the second part? So I think people with SCD will have autistic traits.

It seems like studies keep popping up this year, showing that lots of people all over the spectrum will be undiagnosed by the DSM-V. I just saw one showing that 36% of adults on the spectrum with intellectual disability will be undiagnosed. All the studies seem to show that PDD-NOS will have a huge drop, like only a small minority of people currently diagnosed with PDD-NOS would meet the ASD criteria, based on the greater number of criteria required.

Looking at the criteria themselves, I don't know why so many people would be undiagnosed. It doesn't seem like it would be difficult for an autistic person to meet the new criteria. The severity levels don't seem that stringent either.

I wouldn't care if AS was took off the spectrum. I would be happier in saying ''I have a Social Communication Disorder'', rather than saying, ''I have Asperger's''. I don't know why, it just sounds less disabling that way. Asperger's Syndrome sounds more like a label that I am stuck with and it makes me feel more seperated from the general population, but if I was just to be labelled as ''Social Communication Disorder'', or SCD, it just sounds more generalized, just like those with just ''Learning Difficulties''. Conditions with abbreviated names, like ADD, ADHD and OCD sound more easier to explain to someone. If I said to someone, ''I have Asperger's Syndrome'' or, ''I have an Autistic Apectrum Disorder'', people would often look at me and go, ''but you don't seem like you have Autism!'', but if I just said, ''I have a Social Communication Disorder'', people would just jump straight to my shyness and anxious personality and just go, ''ah yeah, that explains that then'', and wouldn't seem so ''afraid'' of me.

This probably doesn't make sense to other Aspies, so just ignore my illogical thinking. It's just that I tend to feel more comfortable with telling people that I have something like Social phobia, or Anxiety Disorder or Panic Disorder, or even Avoidant Personality Disorder, or anything like that, rather than saying Asperger's Syndrome or Autism.

C. Rule out Autism Spectrum Disorder. Autism spectrum disorder by definition encompasses pragmatic communication problems, but also includes restricted, repetitive patterns of behavior, interests or activities as part of the autism spectrum. Therefore, Autism Spectrum Disorder needs to be ruled out for Social Communication Disorder to be diagnosed.

This passage confuses me. I'm not sure what is meant by "activities as part of the autism spectrum." This seems to leave a lot open to interpretation. Although I get the repetitive patterns and activities part.
I guess SCD is supposed to be more about speech, but then why add "social?" And why separate this from ASD?

The more I look at the criteria for SCD, the more confused I get.

Criterion A looks like the social aspects of autism and AS.

Criterion B looks like some kind of significant language disorder that people with AS would not have.

So it doesn't seem like people with AS could be diagnosed with SCD. It seems like SCD is for PDD-NOS, specifically people with social problems and communication problems involving language and lack of RRBs that people with autism and AS do have, usually more than one.