Report of the DSM-V Neurodevelopmental Disorders Work Group

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It's best to keep it in. Think about how many undiagnosed adults would react at the thought of being told that they have Autism. A good portion of those would just think the psychologist is a quack. Someone with Aspergers is thought of as someone who is odd, nerdy, but a genius, or just socially awkward. Autism is thought being on the same level as being mentally ret*d. I wouldn't even qualify for an ASD diagnosis under dsm5, I barely do under Aspergers as it is.

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.

I am somewhat disgusted to see someone not wanting to be linked with Autism because it is considered to be on the same level of mental retardation. I have worked with a number of nonverbal autistic children and all I can say is that for the majority, it appears to me that we do not always know how to understand the child or adult's intelligence. For example, Lucy Blackman who was nonverbal and thought to have extreme learning difficulties and does have extreme sensory difficulties started to communicate on the computer at about 12. Her family fought for her to attend a mainstream school and she achieved a university degree and then wrote a book about her experiences. This clip shows another of these people: http://www.youtube.com/watch?v=vNZVV4Ciccg

An update on the definition of ASD has been a long time in coming. It's really tragic, in that people were led to believe they have a disorder to blame, but now they lack that and are more lost. However, that is exactly why it is better this happens now, rather than later.

Despite the possible ulterior motives behind it (insurance companies), I am glad the definition is more concise than it used to be. It no longer requires the reader to refer to other disorders (as the current version does), because it is more specific. There will need revisions for the future, but this is the best they can do at present.

I am a new member, so I cannot link you to there, but I implore anybody who disagrees with me to compare current and proposed definitions for themselves.

(originally posted as part of a different thread, but really more appropriate here)

In my opinion, the DSM-5's "autism problem" could be neatly solved by a simple compromise: define autism as a single spectrum that includes AS and (most instances of) SPD, but recognize both AS and SPD as slightly-renamed nested subtypes of it:

Asperger Subtype is the highly-functioning end of the Autism spectrum. By definition, if you're in this category, you can "effectively" communicate and make use of language (in writing, if not speech). The unambiguous acronym is ASa ("Asperger Subtype, Autism Spectrum Disorder")

Socioavoidant Personality Dynamic is the subset of Asperger Subtype that exhibits little to no interest in social interaction or interpersonal relationships and has problems (above and beyond AS) because of it. In a diagnostic context, active efforts to avoid social contact would qualify as a "significant & limiting" RRBI. Other criteria for ASa would have to at least trivially be met. From what I've seen (based on posts by individuals who officially have SPD), you might find 3 in 500 who genuinely lack even trivial childhood symptoms of mild ASD... fewer, if you rule out those who'd be more appropriately classified as Schizotypal *anyway*. The unambiguous acronym is SPDa ("Socioavoidant Personality Dynamic, Asperger Subtype, Autism Spectrum Disorder").

From that point, it's a simple matter to add verbiage grandfathering in everyone with an existing DSM-IV diagnosis.

* AS, HFA, and PDD-NOS are automatically ASD, and specifically ASa, as long as they can effectively communicate by some means.

* DSM-IV Schizoid PD is automatically SPDa unless some other DSM-5 diagnosis ends up being more appropriate. If the patient is asocial, but isn't bothered by it or has no desire to change, the diagnosis changes to ASa.

Problem solved.

* Aspies get to keep our nickname & avoid getting indiscriminately lumped in with individuals who can't communicate normally via some means.

* SPD gets its stigma erased by severing its misleading association with schizophrenia & gets reclassified as a subset of ASa.

* Both legacy acronyms are effectively preserved & refer to more or less the same people they do now, minimizing future confusion going forward. The lowercase "a" in ASa and SPDa makes it obvious that a future author is referring to a DSM-5 Aspie or SPD'er, without being unwieldy.

* Nobody with a current diagnosis gets dumped on the curb, and if large numbers of individuals are identified who don't qualify for DSM-5 diagnosis, but are practically-indistinguishable from those grandfathered under DSM-IV diagnoses, the DSM-5 can be quickly amended to expand the new definition as necessary.

Epic win, and everyone gets to go home satisfied.

Last edited by dr01dguy on 26 Jan 2012, 9:28 am, edited 3 times in total.

Don't automatically define people described as "LFA" as being unable to communicate by any or any normal means.

Oops. Just to be perfectly clear: I am not implying that somebody who's currently classified as "LFA" under DSM-IV is incapable of communication. I'm proposing that the ability to make use of language should be an absolute, non-negotiable minimum requirement for classification as "ASa" under DSM-5.

The intent was to come up with a clear, bright line separating "high" from "low" that doesn't necessarily align with current low/high boundaries, but picks one particular ability that's so fundamental and important, it's inconceivable that someone could even theoretically function at a 'high' level without it.

I do not understand this compulsion to separate "high" from "low" . There is no such thing as high functioning schizophrenia or low functioning bpd. It is nonsense. The important thing is the commonalities between us that identify autism.

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!!