Your Thoughts on the DSM 5 Changes

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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.

That's your choice, and not something that would be required of you.

They took away Asperger Syndrome diagnosis right before our testing so we were diagnosed "quirky with Asperger-like tendencies but no Aspergers, with a twist of social disorder"? WHAT????????????? That's what $800.00 and months of testing turned up? We knew THAT! "Intelligent with high I.Q., withdrawn, yada, yada...." We were HOPING for Asperger or austism diagnosis so we could get a handle for this mug full of "why we don't fit in and feel like we're swimming upstream". It took us a couple months after the shock wore off to realize that no diagnosis or lack of would tell us we aren't or are on the spectrum. We live inside of this "quirky" world all day long. We embrace the Aspergers "autism spectrum handle" happily. It doesn't matter to us what it's called. It is what it is. We do not feel "marked" by the label. The label is a relief and a way to help people understand us. "Us" is a family of 3 all on the spectrum with different characteristics. We were surrounded by Aspies who helped us realize why we were so comfortable in the Aspie world and not the "norm".

They took away Asperger Syndrome diagnosis right before our testing so we were diagnosed "quirky with Asperger-like tendencies but no Aspergers, with a twist of social disorder"? WHAT????????????? That's what $800.00 and months of testing turned up? We knew THAT! "Intelligent with high I.Q., withdrawn, yada, yada...." We were HOPING for Asperger or austism diagnosis so we could get a handle for this mug full of "why we don't fit in and feel like we're swimming upstream". It took us a couple months after the shock wore off to realize that no diagnosis or lack of would tell us we aren't or are on the spectrum. We live inside of this "quirky" world all day long. We embrace the Aspergers "autism spectrum handle" happily. It doesn't matter to us what it's called. It is what it is. We do not feel "marked" by the label. The label is a relief and a way to help people understand us. "Us" is a family of 3 all on the spectrum with different characteristics. We were surrounded by Aspies who helped us realize why we were so comfortable in the Aspie world and not the "norm".

I think you go a little too far here; trouble with social interaction, language, and communication is practically ubiquitous on the spectrum. But on the other hand, you make a very good point because both professionals and the general public often do consider social difficulty to be THE primary and central feature of autism. In reality, the difference that defines autism is probably best defined as a fundamental difference in how we process information--including both sensory information and social information.

The trouble with using social difficulty as diagnostic of autism is that social difficulty is an extremely common feature of many mental illnesses, developmental and neurological disorders, and even social situations such as being an abuse survivor, a member of a minority group, an immigrant, or even an introvert in a solely extrovert-friendly environment. The vast majority of people who deal with social difficulties, including poor social skills and social exclusion, are not autistic. Whether it's a socially anxious teenager who's painfully afraid of rejection, a shy bookworm trying to get along in a sales firm, or a child with ADHD who can't keep his mind on the conversation, they won't benefit from being diagnosed as autistic, and in some cases shouldn't be diagnosed with anything at all.

The idea of autism as a primarily social thing can really hurt the majority of people whose social problems are unrelated to autism. They won't get the right label or the right treatment. They might even get treatment when they actually don't need any at all--just somebody to recognize that some people prefer to be quiet and calm rather than exuberantly outgoing. A social misfit may well be a social misfit not because he lacks social skills but because others have rejected him thanks to prejudice.

Those with social phobia, social anxiety disorder, avoidant personality disorder, and similar problems may be led to believe that their problems are unsolvable and their anxiety cannot ever be alleviated, which of course is absolutely false because those are treatable disorders. Even people who also have autism need to know that autism and social problems are not the same thing: If you don't know better, you might think that your social anxiety disorder is the same thing as your autism and that this means you'll always feel rejected and afraid and worthless because you can't change the fact that you're autistic. Actually, social phobia in an autistic person is a learned thing that can be unlearned, even while autism is permanent.

Social problems are very obvious to neurotypicals and that's why they're used as diagnostic traits. Not until we make them listen to what it's like for us, from the inside out, will they realize that the social problems are only the paint on the walls, not the foundation of the building.

Of course

Indeed. Not saying you have to keep it or not, just I see people complain their identity is being taken away, and it really isn't. It's still a thing.

DSMV5 can kiss this, and I don't mean on my rosey red lips.

I dont get that. Different countries use different manuals, so it would be recongzied in some placed but not others.

Despite a diagnosis 3 months prior to the dsm5, my psychologist preferred autism spectrum himself, over a myriad of diagnoses, which, to be fair, might not be enough. Between speech development, sense perception, social skills from public speaking, reading emotions and body language, posture, ADHD symptoms, OCD symptoms, meltdowns and tantrums, stimming.. Autism is such a complex and wide encompassing term. Practically everyone on the spectrum will have many or most of the above to done extent, but drawing finer patterns through the endless amounts of hallmarks of the spectrum is rather needless and impractical.

I think the point SBC was making is that while the NAME may not be used in some places, every meaningful feature of the diagnosis will be included. That which will be called Aspergers in ICD-10 using regions will be called ASD, no language delay, no intellectual impairment in DSM-V regions. The name changes but the package of symptoms remains, the thing is not negated in the larger system.

A rose by any other name, etc.

...would still cause olfactory sensory overload.

Ha. But then why bother changing the name?

Because the old definition was flawed, inadequate, misleading, incomplete.

The goal in making the change was a more accurate description of observed reality. No doubt as investigation clarifies and deepens those observations, the names and qualifiers will continue to change.

Your symptoms and mine will be the same, but they will refine the name and description to try to improve the precision of the label. Hopefully that will help us when we deal with educators , therapists or physicians.

If it's helpful to you to continue to use the name Aspergers when talking to others, nothing in the name change will hinder you in that.

I think the changes are good, however I do see a problem in the public awareness domain. There are already a lot of members of the public who misunderstand the changes and gloat that Asperger's doesn't exist as it's been removed from the DSM 5... And take it to mean that people with Asperger's were faking/making it all up and that the DSM change foils/undiagnoses the (imagined) fakers. There now needs to be even more education and clarification for the public. The use of different manuals in different countries while everyone has access to the internet is also adding to the confusion, especially for people with little knowledge of ASDs who don't even know which manual their country uses (some use both). Diagnostically I think it could be a good tool but in terms of public awareness the change has likely created a great deal of work to be done.

I agree with Chameleon and with so many others on this thread. To me, it's a question of taxonomy.

Ok, sure: From a diagnostic consideration, the subsumation of Asperger's into the general category "autism" has its logic. However, just because the DSM5 subsumes the species of various autistic manifestations under one common genus, this taxonomy does not negate the existence of its diverse species.

Likewise, the genus "color" which exists along a frequency spectrum does not undo the usefulness of words like "green" or "orange" (the history of the naming of colors, by the way, is a fascinating study) which function as species. Do we really want to get away with color names and instead replace them with numbers corresponding to frequency?

Or, am I no longer allowed to call my Australian shepherd by its breed, but to rename him "dog-23.540"?

By analogy, I don't see why we ought to suppress the term "Asperger's."