With new diagnosis system many high functioning people might be thrown overboard...

[epath13]

Any thoughts?

Here's the article:
Proposed changes in the definition of*autism would make it harder for many people who would no longer meet the criteria to get health, educational and social services that they need, and it?s just plain discouraging. The news is discouraging because it comes at a time when it seemed the the needs of individuals with Aspergers and high functioning autism were finally coming to light thanks to the voices of autism self- advocates.

See today?s New York TImes report HERE.

The definition is under review by an expert panel appointed by the American Psychiatric Association, which is completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders. The D.S.M, as the manual is known, is the standard reference for mental disorders, driving research, treatment and insurance decisions.

"At least a million children and adults have a diagnosis of autism or a related disorder, like Asperger syndrome or ?pervasive developmental disorder, not otherwise specified? ? or P.D.D.-N.O.S. People with Asperger?s or P.D.D.-N.O.S. endure some of the same social struggles as those with autism but do not meet the definition for the full-blown version. The proposed change would consolidate all three diagnoses under one category, autism spectrum disorder, eliminating Asperger syndrome and P.D.D.-N.O.S. from the manual. Under the current criteria a person can qualify for the diagnosis by exhibiting six or more of 12 behaviors; under the*proposed definition, the person would have to exhibit three deficits in social interaction and communication and at least two repetitive behaviors ? a much narrower menu.

The data for this study by Dr. Fred Volkmar, Brian Reichow and James McPartland*of the Child Study Center at Yale University School of Medicine*was from a large 1993 study that served as the basis for the current criteria. They focused on 372 children and adults who were among the highest-functioning and found that over all, only 45 percent of them would qualify for the proposed autism spectrum diagnosis now under review.

I really respect Fred Volkmar, but believe that Dr.Catherine Lord , *director of the Institute for Brain Development, a joint project of NewYork-Presbyterian Hospital, Weill Cornell Medical College, Columbia University Medical Center and the New York Center for Autism, summed up the issue best:

She said that he study numbers are probably exaggerated because the research team relied on old data, collected by doctors who were not aware of what kinds of behaviors the proposed definition requires. ?It?s not that the behaviors didn?t exist, but that they weren?t even asking about them ? they wouldn?t show up at all in the data.?

The researchers will publish a broader analysis, based on a larger and more representative sample of 1,000 cases, later this year."

Copied from Proposed changes of autism definition does not sit well with the autism community | City Brights: Laura Shumaker | an SFGate.com blog

 

[epath13]

Re: With new diagnosis system many high functioning people might be thrown overboard.

here's the link to the diagnosis criteria:
How the Definition of Autism May Change - Document - NYTimes.com

 

[King_Oni]

Re: With new diagnosis system many high functioning people might be thrown overboard.

If it's not that narrowing down of getting a diagnosis per se, I wonder what the "fallout" would be.

A lot of people, including myself, struggle with formalities like employment and education. Even if I don't have the autism label in my medical file, I still don't function,and I doubt it's really gonna work out like "well, you don't have all of this on this checklist, therefore, you can function". Narrowing down specifics for a said disorder to me makes room for more personal disorder which they can label you with.

Especially by employment means you'll just end up being put down as being "stupid" or "weird" instead of "having a condition", thus you'll end up on unemployment time after time and it's not being seen as "a disablity" but you're in the same bin as people who are willingly lazy.

But srsly, I wonder what the change will prove? Will it prove not everyone is austistic equally? If we're not, why do we need to prove it... there has to be a bigger picture. Because for what it's worth, a lot of stuff that makes one being on the spectrum NOW, and might not be on the spectrum in the future, still offers a lot of complications and struggles in daily life... the difference; They don't have to acknowledge your behaviour as a disablity and go for a bigger stretch in stating "you're healthy". That is... until the majority of those people have breakdowns and such if they're being placed in "normal" situations and jobs.

Looking at the changes though, especially since I got my DX and the scores and symptoms what it was based on, earlier this week, the change wouldn't affect me in the a way as I'd still qualify by far.

 

[epath13]

Re: With new diagnosis system many high functioning people might be thrown overboard.

I've read through it carefully... Oh My God! I love the last one - "the symptoms must be present in early childhood (But may not become fully manifest until social demands exceed Limited capacities)" ok, before they "become fully manifest" it might not even look like the symptoms are there so how would you know that they were present... Or am I just seeing things? I still believe Autism is a processing disorder, so far I heard only about research of auditory processing delay but I think that slow processing can manifest itself in many other areas, the problem is, I'm wondering if people, who decide what the diagnosis criteria should be, are paying attention to neuro science at all. I mean I understand that it's not carved in stone but the research is there, and there's consistency. Diagnosis criteria of such a complex disorder as Autism can not be so superficial but then again... The whole system needs to change, how people are diagnosed, how they get help, what help they're getting, how they're treated. Right now there's a system in place, it sort of working... But let's see... Government has less money...so let's readjust the system a little (again maybe I'm seeing things...maybe) the point is, a bunch of people are running around in different directions, the ones who are in control trying to stitch things together so nothing falls apart instead of sitting down, looking at all the options and creating something new. Will it ever happen? I believe it might, if some genius comes along, shows the Autism in all it's glory and tells the specialist, "here, see the patterns, that's what you need to pay attention to" but then again maybe it's all a part of natural human development at this point we'll see what happens...

 

[King_Oni]

Re: With new diagnosis system many high functioning people might be thrown overboard.

Well, actually they're using an approach that works for a lot of situations. There is no problem until we demand actions that show us a problem. Some people land a job and grow old with it and are therefore not being labeled as "weird". It comes down to how you connect... thus there's no objective way to measure it.

Also, the funny thing I'm seeing in research... and I have no clue how to do it otherwise, but in a way the best way to figure out what's wrong with kid X is if kid X told the doctor "hey look, I'm having this and this problem in life". Especially because it's a disorder that starts as a kid... it makes sense in the way that a doctor would need that information, but the way that information is observed through parents or doctors might be way off. Here's a funny example I had going on as a kid; As a kid I used to laugh about jokes my parents made if they had a party or such, thus at first a therapist thought "well, there's nothing wrong in regards to social behaviour, understanding things, showing emotion" things like that... but then I pointed out, that what if I as a kid just laughed because everyone did, and just emulated it. If a kid processes information like that and just emulates behaviour... how can someone pinpoint that capacities are limited if they don't keep in mind that behaviour might be copied and not understood.

I don't know if current diagnosis methods are "wrong", I do think that in general the world isn't to accomodating in helping people on the spectrum out. You're more likely to end up being left on your own and just do "whatever you like", which I feel kinda happens now. Though I'm not saying everyone should and needs extensive help and guidance like a kid... but some people might need better support. If criteria are more narrow, the group is more narrow and perhaps the real "problemcases" might get more help... yet, not everyone on the spectrum is the same. I feel there's no weight in the diversity of limited capacties where help might be offered. But that might just as well be me.

 

[epath13]

Re: With new diagnosis system many high functioning people might be thrown overboard.

Also, the funny thing I'm seeing in research... and I have no clue how to do it otherwise, but in a way the best way to figure out what's wrong with kid X is if kid X told the doctor "hey look, I'm having this and this problem in life". Especially because it's a disorder that starts as a kid... it makes sense in the way that a doctor would need that information, but the way that information is observed through parents or doctors might be way off. Here's a funny example I had going on as a kid; As a kid I used to laugh about jokes my parents made if they had a party or such, thus at first a therapist thought "well, there's nothing wrong in regards to social behaviour, understanding things, showing emotion" things like that... but then I pointed out, that what if I as a kid just laughed because everyone did, and just emulated it. If a kid processes information like that and just emulates behaviour... how can someone pinpoint that capacities are limited if they don't keep in mind that behaviour might be copied and not understood.

I've been trying to get people to listen to me about this issue for the past year. Copying of the behavior is not that hard for some kids, my older son does it, I've done it. Once kids figure it out and see benefit in it (or maybe do it just because) they will do it. And I have no clue how some specialists can be blinded so much by a piece of paper...
I think what they should have mentioned is the real reason behind the changes, what do they want to achieve?

 

[epath13]

Re: With new diagnosis system many high functioning people might be thrown overboard.

I've just read about the reasons behind the changes and about how it's done, I guess they think they've done the best they can....

 

[petrossa]

Re: With new diagnosis system many high functioning people might be thrown overboard.

Here is the deal:

Diagnostic criteria manuals are a collection of assumptions based on behavioral studies done decades ago. Slowly over time the basic assumptions became 'real' by devising self confirming tests. As a reflection of reality they are as reliable as an astrology manual. There is hardly any science in them, and the little bit there is socalled 'soft science' which is an euphemism for 'anything goes'.

And now we get version 5 which confronted with nasty neuroscientific reality tries to still ram home the old labels by redesigning them so they become so diffuse no reals scientist can ever prove them wrong. Nor right but who cares?

For example Aspergers. Aspergers is caused by a genetic variation which influences how the corpus callosum (white matter) is laid out in the fetal brain. Some wires get crossed. As a result of this the grey matter develops anomalously due to the lesser or stronger neural feedback caused by the 'crosswiring'

This in turn sets off a whole avalanche of gene expressions, neural pathway growth, various feedback loops and a potential Aspergian brain is being formed. During gestation this goes on and on and at the end some parts of the brain are less developed, others more and some are non-functional in the 'normal' sense.

After birth environmental feedback further enhances the Aspergian brain.

This process is basically how half the DSM's separately named disorders are caused. Personality Disorder, Schizophrenia, ADD, Autism etc. etc.

In fact most disorders named aren't actually separate disorders at all but just variations on a theme.

The reason why it's so difficult to prove beyond a doubt this is all originally genetical is because the DSM is such a mess. For example people are diagnosed autistic which aren't autistic at all but just do the 'autism test' well (or bad as per your POV) which test is wholly based on the assumptions of the DSM being right. Circular reasoning at its finest.

The famous Rain Main was originally thought to be autistic due to his symptoms as per DSM but in fact had agenesis of the corpus callosum after they did a brain scan.

So all in all, DSM 1,2,3,4,5,6,7,8,9,10 are all astrology till they do the right thing.

Scrap the mess, start from a neurological baseline and redefine the disorders in a new DSM, NeuroDSM 1.0

 

[HelloDizzy]

Re: With new diagnosis system many high functioning people might be thrown overboard.

I apparently still fit the newer criteria. I don't gain any benefits from my diagnoses though except being able to say why I am the way I am.
However, I don't see why they're altering it; what is their point?

 

[epath13]

Re: With new diagnosis system many high functioning people might be thrown overboard.

I apparently still fit the newer criteria. I don't gain any benefits from my diagnoses though except being able to say why I am the way I am.
However, I don't see why they're altering it; what is their point?

APA wants to eliminate any additional disorders by consolidating them all into one. They say they want to simplify the diagnosis process for the specialists but there're some speculations that it's done to "stop" the "Autism epidemic" by getting rid of all the people who might not need that much help. DSM-IV wasn't that perfect either, but DSM-5 is not really a change for the better. For kids there might be a way around it though, they can get help without a diagnosis through school system but insurances won't pay for therapy, for instance, if there's no Autism diagnosis.
So my personal opinion, as I've already stated, the whole system is screwed nobody seems to be interested in fixing it. There have to be changes in diagnosis process but the problem is, it cost money, who's going to pay for it? Diagnosis in many cases can't possibly take 40 minutes of observation or something like that. Several factors have to be considered, several tests performed. Tests to eliminate possible medical conditions etc. Don't want to go to deep into it. But in reality there only some vague guide lines and then specialists do whatever they want.
I think even with DSM-5 in place the way it is, a lot of people (diagnosed or not) still won't get any funding or appropriate help but hopefully, if enough people speak up about the diagnosis and support issues, changes will be considered and made eventually.

 

[HelloDizzy]

Re: With new diagnosis system many high functioning people might be thrown overboard.

What king of help would an adult aspie receive (just wondering?)
I was thinking of applying for something... since I can't work.

Don't know how that goes exactly.

 

[epath13]

Re: With new diagnosis system many high functioning people might be thrown overboard.

What king of help would an adult aspie receive (just wondering?)
I was thinking of applying for something... since I can't work.

Don't know how that goes exactly.

I've heard that it's possible to get social security even though it is extremely hard. If I'm not mistaken your local office would have to do an additional screening to determine eligibility. Plus I don't know how it's going to affect your future employment. I believe there some additional funds might be available (it depends on the state and the city). I was to a meeting not so long time ago and there people were talking about some additional funding...but that would cover any...let's say social workers or personal assistants fees, things like that.

You should look for funding and financial assistance for people with disabilities in your area but if you want to go that way, you have to be prepared that you would have to prove that you need the money (possibly you would even have to involve people that are close to you and write several letters or make several phone calls before you get anything).
I heard from people who have been trying to get the funds - it's hard but not impossible, in many cases you might need to fight for it.

 

[HelloDizzy]

Re: With new diagnosis system many high functioning people might be thrown overboard.

I think for now I'll steer clear of botching up my career as a psychoanalyst. I wonder if I can get help in college (as far as having a desk by the wall) due to having Aspergers.
I need to be in a corner.

So, this whole deal will be official when? Or is it already?

 

[epath13]

Re: With new diagnosis system many high functioning people might be thrown overboard.

As for help in college - quite possibly you can get support

if you're talking about DSM-5, it's supposed to be official in 2013, right now there's still a chance it might change (the wording and all)

 

[HelloDizzy]

Re: With new diagnosis system many high functioning people might be thrown overboard.

Hopefully they don't screw us all over.
While I do believe more people are being diagnosed than needed, this is the fault of the psych world and how fickle it is. "Mental illness of the week" malarkey.
They shouldn't cancel out so much criteria for the sake of their own simplicity.

 

[IContainMultitudes]

Re: With new diagnosis system many high functioning people might be thrown overboard.

John Elder Robison doesn't seem to think that the changed diagnostic criteria are in themselves a big deal and he doesn't think that they will cause very many people on the spectrum to "lose their diagnosis" (certainly not 75%), but he does worry a little bit that politicians and others ignorant about ASDs could use them as an excuse to cut back on services for people on the spectrum.

Look Me In The Eye: What will the new DSM definition of autism mean to us?

 

[epath13]

Re: With new diagnosis system many high functioning people might be thrown overboard.

John Elder Robison doesn't seem to think that the changed diagnostic criteria are in themselves a big deal and he doesn't think that they will cause very many people on the spectrum to "lose their diagnosis" (certainly not 75%), but he does worry a little bit that politicians and others ignorant about ASDs could use them as an excuse to cut back on services for people on the spectrum.

Look Me In The Eye: What will the new DSM definition of autism mean to us?

he's got the point there, maybe 75% is an exaggeration... maybe not. But in the end DSM-5 was supposed to be an improvement and it's not. I'm not even sure what will be decided when people speak up (and many already do)...what will APA do? Will people offer any ideas how the system can be changed for the better? And if not, not much is going to change... they might just leave DSM the way it was or almost the way it was.
one of the reasons why I'm frustrated about all this is because one of my kids was diagnosed with Autism, he's nonverbal at the moment and has developmental delays, he's going to receive help either way but my older son might never get support. He displays very obvious processing issues but he's too high functioning to be diagnosed. Doctor said that he might be that way because of high intelligence, but the older my son becomes the more apparent it gets, that intelligence is not the cause. I'm lucky that I've got people from local Autism organization on my side who support us, whether he's diagnosed or not. And I'm going to do my best to support him so he doesn't go through the same hell I've had to go through. But one thing I know, changes can and should be made for the sake of all, low or high functioning. Will it happen in 2013? hard to say at this point...

 

[King_Oni]

Re: With new diagnosis system many high functioning people might be thrown overboard.

John Elder Robison doesn't seem to think that the changed diagnostic criteria are in themselves a big deal and he doesn't think that they will cause very many people on the spectrum to "lose their diagnosis" (certainly not 75%), but he does worry a little bit that politicians and others ignorant about ASDs could use them as an excuse to cut back on services for people on the spectrum.

Look Me In The Eye: What will the new DSM definition of autism mean to us?

Actually I think that the cutback on services is a good point. That's something that will happen I guess. Maybe it is because like HelloDizzy pointed out, a lot of people are getting a DX and they're slightly on the spectrum (and thus getting services for it). I don't think the threshold is to high or low to get a DX, I mean, if you're on it, you're on it, but everyone is joining in, and that's troubling in means of employment on national scale. Because apparently lot's of people are autistic in some way and therefore "cannot work". Even they push through DSM 5 and make qualifications a lot harder, I doubt that's the only change that has to be made, because for all it's worth right now I'd end up at a therapists office, and he figures "might be austism spectrum related", and that will change to "he's just having a problem adjusting", but in fact, that's not really true. I doubt they'll look into the "why is there a problem adjusting?" at a job for example, and that entire working culture should be more accomodating for people that are "different" in their behaviour and such.

Also, how weird does it sound that you, end up on unemployment benefits from disability. Apparently one time you were disabled (depending of your situation and such of course) and got services, and while you yourself are still living under those same circumstances, you're now just an unwilling employee collecting benefits. It's as if we'd not acknowledge someone losing a leg and having a daily struggle to get his **** done.

So I'm not all against the DSM 5 thing, but I don't think it'll work out if that's the only thing they're pushing through... a lot has to change in terms of services and such. Apparently, there's a reason Aspergers once was in the DSM.

But meh.. just my 2 cents.

 

[epath13]

Re: With new diagnosis system many high functioning people might be thrown overboard.

if anybody wants to sign a petition to change DSM5 here's the link:

Health Petition: DSM-5 Committee: Don't Reduce the Criteria for an Autism Spectrum Condition in the DSM-5 | Change.org

 

[IContainMultitudes]

Re: With new diagnosis system many high functioning people might be thrown overboard.

Robison seems to have changed his mind somewhat on this issue and now sees the proposed changes to the DSM as being potentially harmful to people on the spectrum:

Look Me In The Eye: Un-Diagnosing Asperger's