Report of the DSM-V Neurodevelopmental Disorders Work Group

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Believe it or not, at some point along the upper end of the spectrum, Aspies do start to care what others think about them. Maybe not as obsessively as a Real Housewives cast member, and perhaps purely out of utilitarian concern as an intellectual construct, but it happens. Without a specific label to keep the high end happy, the whole concept of Autism will be quickly and efficiently whitewashed into a synonym for "highly-functioning absentminded nerdy genius with social problems (who only stims & melts down behind closed doors)". It's harsh, but it's delusional to believe otherwise.

It's *already* semi-happening with respect to high-vs-low functioning Aspies without anyone even particularly trying. Imagine millions of slightly-neurotic Aspies *intentionally* going into high gear to prove to the world that they might "have some problems", but are nowhere near "that" bad (even if they secretly are, in private, and *absolutely* were as children).

It is not the purpose of the DSM to feed egos and keep elitists happy.

Maybe not... but it *is* the job of its authors to do as much as possible to get help to those who need it the most... and that's not going to happen if the Aspie Elite hijacks and redefines the public's view of "Autism" to spare its own self-esteem. And make no mistake -- it absolutely will.

John F. Kennedy insightfully observed that "politics is the art of getting people to do the right thing for the wrong reasons." Like it or not, the DSM is as much a political document as it is a medical guide. They can do the logical thing & cause real-world harm, or they can do the sensible thing and make just about everyone happy -- achieving their #1 goal (help for the neediest) as a happy side effect.

Two things:

1. Who is the Aspie Elite?

2. Can you explain the apparent contradiction of "... but it *is* the job of its authors to do as much as possible to get help to those who need it the most" and " they can do the sensible thing and make just about everyone happy -- achieving their #1 goal (help for the neediest) as a happy side effect?"

1. Look around. You don't have to be a rocket scientist to notice that many Aspies write extremely well, and might even be able to pull off a NT-like performance on Youtube for a few minutes at a time when they're in control, firmly within their comfort zone, well-rehearsed, and able to redo every scene 17 times until it looks right when edited together. They're the de-facto public face of whatever label gets applied. Publicly associate them with the same label as kids (and adults) who need profound amounts of help just to make it through the day without injury, without making at least a token effort to distinguish them as the exception rather than the norm, and guess which group is going to end up identified with that label?

2. Like it or not, the DSM's definitions are often adopted verbatim (or incorporated by reference) by legal definitions used to determine eligibility for assistance, accommodations.

Every condition in the DSM has varying degrees of severity. My own daughter is bipolar. Most of the time she copes and few people realize that she has a mental illness. Sometimes she is not fine and that affects her ability to work, sustain friendships, parent and cope with daily living. Sound familiar? She still receives support when she needs it. She is proud not to be supported when she copes and that is how it should be.

I don't think people will be confused by the label of autism. I think they are confused now, with many not associating Aspergers with autism but rather, they think it is some kind of invented, flavour of the month, attention seeking excuse for bad behaviour and eccentricity. I think the strong diagnositic identification with autism may have some problems initially, but people will learn.

I think you've hit on the big picture there. Alot of the these labels are used by non medical/psyhological/teaching people and their perceptions can be way off the mark (eg. like when you say autism they say 'oh, like rainman?' (-___-)). These people can be well informed or naive, have good intentions/pereptions or be dissmisive. Only the non informed general population would generlise all people with ASD (or AS or any developmental delay) together, and frankly, they either realise they are wrong upon meeting anyone with ASD (etc) or remain dissmissive regardless of what diagnosis the person had. Either senario is unlikely to be greatly affected by a change in the DSM (which isn't of great interest to most people).

dr01dguy, have you considered that you (and other Aspies) can still call yourself Aspie after this? AS has made its way into our lexicon (whether it's understood or not is another issue all together), whether or not it gets changed, people who are currently familar with the term will not demand you say ASD intead of Aspie. How long to you think it will be after this possible change when you talk to someone and say 'I have AS' (and Im going to assume that this isn't how you start most conversations) that they would reply 'isn't that ASD now?'.
In the case of legal definitions in getting assistance etc., ASD will still be on the DSM. Thats certain. The only differnece is the bodies that rely of the DSM definitions for legal reasons will have less Dxs to google when they don't recognise a name (assuming these people involved are uninformed).
Are you more worried about the 'AS elite' taking ASD and making it seem less severe Or about being included with non verbal ASD people?

Honestly? Both. I'm not going to be a hypocrite and pretend I'm motivated entirely by selfless altruism & compassion, nor am I going to politely pretend that making 'autism' publicly synonymous with 'highest of highly-functioning photogenic Aspies' won't ultimately harm low-functioning Autistic kids & adults.

I think the most elegant solution is to just make "ASD, Level One" officially synonymous with "Asperger Subtype", which nicely solves both problems in one neat, orderly stroke.

So, I'm still trying to catch up with what is new, what is going away, and what has stayed the same with the new DSM, but I did want to throw my two cents in about the Asperger's diagnosis. I was diagnosed with Asperger's Syndrome when I was around 5 years old, partially because my mother pushed for the diagnosis. Since the diagnosis was not very well known at the time, I believe I got extra help that I needed. While I'm not sure if having a separate diagnosis for AS would help all people on the high functioning spectrum, I don't believe grouping all spectrum disorders into one is necessarily the best way to go either. Having heard from many of my family members who are special ed teachers, the new diagnosis would in fact clump many students from ranging spectrums in the same classroom. I can only imagine if this had been me, and if I didn't have the chance to interact with regular ed students or didn't have the one-on-one interaction with therapists that I had. I think the outreach to change the definitions in the DSM shouldn't left to just us, or the PhDs that write all of these up, but to the teachers in the schools who will be working with these kids. As far as Aspies speaking and flipping out in public like another member said, I think that's absolutely insane. I have Asperger's and I couldn't imagine trying to make a public statement in defense of keeping Asperger's Syndrome over some slight technicality. How utterly embarrassing that would be!!

[quote="Awiddershinlife"]The diagnosis of autism is artificial. It is just a way to organize our thinking about people who have these issues. My problem with the DMS is that everything is given a negative spin. For example the ability to directing one's passions to a specific goal without being distracted by social intrusions and peer pressure has revolutionized society throughout homosapian's history, yet it is now considered a disease and described as "Restricted repetitive & stereotyped patterns of behavior, interests and activities". This is the gift of autism/asperger!![/quote]

this,esp when you think about how many rules and regulations org.'s such as the military have but they wouldnt be diagnosed as AS...wtf

I don't like the way the terminology is always so clinical and negative about simple (and often benificial, like HFA) facts of life. Also, as autistic rights activist, I really don't like the term "co-morbidity" that instantly implies that something is wrong, when most of the time it is a simple case of something being different.

The UK's National Autistic Society has the best explanation of the new DSM-V stuff that I've read thus far:
http://www.autism.org.uk/about-autism/a ... teria.aspx

Absolutely! Having worked for a non profit that was heavily involved in trying to add what were then fledgling understandings or mentions of anything "neuro" sciences could at that time provide in the last version of the DSM, it was with total mortification that many of us have received the latest version. There is a rather abrupt bifurcation of concept within the DSM; it claims at once to represent empirical science and yet on the other shows an historically capricious stance on "precision." How bizarre. At any rate thank you for articulating with admirable precision what many cannot. Seriously!

Precisely, none of us enjoys being subjected to the hegemony of the NT power structure. They do indeed feel there is something wrong with anyone not like them. In fact, they wage entire wars against people who simply don't adopt their viewpoint, or share rather amorphous abstract concepts or mores; never mind those who don't share their cognitive style. It is a wonder that more powerful Aspies and HFAs don't stand up in defense of their culture. There are quite a few who have done so in other countries, England, for instance, to good effect. However the culture seems to be one of hiding, one of non-stewardship among those on the spectrum. Adult life with Aspergers amuses me to a certain extent it did not as a child. Most of us are adept at Systems Thinking; some of us gifted. There cannot be a subculture of folks more able to spot a glitch in the system of thinking of the magnitude causing the cognitive dissonance in the United States. Notice they don't mention "Co-Morbidity" of say, a genius IQ. Instead they say "Savant" for us and "genius" for themselves. This fissure runs deep. I am afraid most of us tacitly absorbed it along with the rest of the xenophobic junk that passes for culture around here. Maybe others disagree, and think the connotation of language used does not assert a strong rein on our thinking. For my part, I advocate we all start using positive language in reference to our differences. NTs might be very adept at reading non verbal agendas but most are utterly perplexed when confronted with unexpected words choices.

Try it, it's both fun (for the leveler) and educational (for the bigots). They learn new words and ways of thinking, and we get to hear kind, positive language in reference to ourselves. Win, win, win.

One problem that I have ran into on this sort of issue is that there is not an authoriative source for documents and past arguements, papers, articles, etc. that are pro-neurodiversity. Something like a wikipedia, only more tightly controlled (see below)

The ND "cause" has picked up more than a few supporters from discussions on news stories about autism. It would be helpful if someone could just post a link or an article from the wiki that supports neurodiversity. Think how many supporters we might pick up if more of our arguements and facts were in one place.

The proposed wiki would need to be controlled by individuals who have some sort of understanding of the concept, and restrict access. It would be unhelpful for the wiki to be changed by individuals who do not support the neuro-diversity movement. Those individuals are welcome to their own websites.

I don't think it is valid to have a diagnosis that has a category that caters to prejudice. One of the things I dislike about the Asperger dx is the superiority some people seem to feel over people with a dx of Autism. IQ or the ability to communicate verbally do not measure the worth of a person and for many, do not indicate the level of difficulty they have in life.

As for the reaction of undiagnosed adults, many are disbelieving when they first hear about Aspergers in relation to themselves. It is a process of learning and understanding and I see nothing to be gained by using categories which are not clear enough for distinctions to be made.

Auntyjack, I suspect IQ and verbal ability are not being used to measure a person's worth, but possibly a person's ability to function in a manner conducive to providing adult self care, income, and seeing to their own immediate needs (housing, food, etc). What I dislike about the blanket Austism Spectrum dx is that it puts folks like me in a precarious position. I am highly ethical, for instance, and very aware that were someone to know I was "Autism Spectrum" before meeting me, they might have certain expectations or assumptions. Those expectations would NOT be met; and people react very negatively to the unexpected introduction of an Aspergian when they were expecting what their concept of an "Autistic" is... we do NOT present the same way, ot that I have ever witnessed. When people expect one thing and instead get another, the unexpected is typically met with full throttle negativity and confusion. Everybody loses. Everybody's self confidence takes a knock and then the interaction isn't productive. It often fails on myriad levels of non-meeting-of-expectations/constructs. For this reason I fail to see, when humans in general are so seemingly incapable of distgushing shades of likeness when they are blinded by a blizzard of difference, what calling two behavioral modalities that are present at utterly opposite of one another as merely a continuance of one another does to assist in resolving on going issues of marginalization of ALL non neurotypicals by the hegemonic culture which tacitly defines "normalcy." Perhaps the distinctions are protective in a way; they brace NTs for what kind of "not like them" they can expect, and protect the less socially adept from being met with instant negativity.

But then again maybe I am just way out in left field on every account, stranger things have certainly happened in my world.

Thanks, Auntyjack, for making me THINK harder on this and articulate those thoughts.
In summary I suspect some Aspergians in my circles view themselves as Stewards in a way; since some of us are capable of infiltrating the existing social structure in America and achieving relative success within it; we have an obligation to use our unique abilities to OPEN minds, rather than close them; to bring positivity where before there was confusion. To speak up, so to speak. Oh how perfect an example. Isn't the Eugenics supporting group much maligned in non-NT circles self called:
Autism Speaks!

?
Possibly they need to meet a few Aspies, and gain an up close and personal understanding of the fact that some Autistics certainly DO speak, in fact some of us have rarely shut up for an instant since the age of, oh, 2 (my dad insists, yes, 2, 2 is when a lot of Aspergians get on that first monologue .