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

[King_Oni]

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

Heh... that's kinda what I was wondering.

I mean, afterall, we're not on the spectrum for nothing... so is there a substitute? And if so, how does that apply to "all" aspies. The proposed "social communications disorder" would stem from the idea that we're all equally communication-clumsy. And what is "social communication"? I could probably name a fair share of people I know in real life, who are less than average in social communication ettiquette, yet they're not aspies.

It's also pretty funny how someone like him can "overlook" the idea that it at first might be a good idea and then realise "oh wait a minute.. they're just acting like it doesn't exist".

The main beef I stil have with the changes obviously is that we're not on this boat for no reason. Some people might struggle with education, employment and other stuff that apparently is easy for NT people to master in life. So yeah, what is the proposition thus far? Doesn't exist, screw those services, act "normal" and be done with it?

 

[epath13]

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

if any of you guys signed a petition you might have received an email from APA, if not I can describe it in a few words what is says: don't worry, it's going to be OK, we're still going with the DSM5; people who can't be diagnosed under new DSM can be diagnosed with different disorders. I can't say that I haven't expected it, so now we would just have to wait and see what happens. And to be honest not much is probably going to happen. Even if you have a diagnosis it's not that easy to get support or services, so people who didn't get enough of support or not at all still not going to get any so as I've said (and I'm not the only one) before it's not just the diagnosis criteria it's the whole freaking system...

 

[IContainMultitudes]

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

Author Rudy Simone makes a humorous appeal to the APA to keep the word "Aspergers" in the new DSM-V Manual

 

[epath13]

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

maybe all the Aspies (whether they're officially diagnosed or suspected) can organize an underground community of misunderstood and mistreated, ok all people on the spectrum can join...fine all the uncategorized can join as well...eh what the hell, anybody can join as long as they believe in THE CAUSE...whatever it is... maybe changing this freaking place we call The World just a crazy idea that crossed my mind in the end of it all

 

[Kit]

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

Here is the letter I got back from them in my email:

Dear concerned respondent to the DSM-5 Autism proposal:

Thank you for contacting the American Psychiatric Association with your thoughts about the diagnosis of Autism Spectrum Disorder (ASD) proposed for DSM-5. We at APA have been and will continue to be advocates for a full range of services for people with autism and all other neurodevelopmental disorders. We understand the devastating impact that discontinuation of services can have on patients and families. We also recognize that services are determined not just by a diagnosis but also by the severity of symptoms and needs in areas such as education, social skills, activities of daily living, and maintaining personal safety. Even if an individual's diagnosis changes, this does not invalidate the treatments and other services that have worked for him/her, and these services should be continued based on need.

The new proposed criteria for ASD in the DSM are intended to improve the accuracy of diagnosing the disorders currently known as autistic disorder, Asperger's disorder, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified. The proposal is based on years of accumulated clinical, epidemiological, and neuroscience research which was thoroughly examined by the members of the DSM-5 work group on Neurodevelopmental Disorders. Most of the work group members are also clinicians who see patients with these disorders, and the proposal was developed with clinicians and their patients in mind.

There are clinical and scientific reasons for improving the accuracy of diagnoses. All patients should have an accurate diagnosis based on the most up-to-date clinical and scientific knowledge available. A more accurate diagnosis will help clinicians and other service providers target available treatments and rehabilitation methods for their patients. In addition, it is important to note that patients whose symptoms no longer meet diagnostic criteria for the DSM-5 ASD diagnosis will very likely meet the criteria for one or more other diagnoses-for example, a communication disorder, for which interventions are available. From a scientific standpoint, more accurate diagnoses will also help guide research into the causes of the neurodevelopmental disorders and the development of new treatments. An informative article written by a work group member, Dr. Francesca Happ?, on the changes to Asperger's disorder can be found on the Simons Foundation Autism Research Initiative website: Why fold Asperger syndrome into autism spectrum disorder in the DSM-5?.

We are hopeful that continuing advances in research, diagnosis and treatment will help us devise better ways to treat autism and to reduce the devastating effect it has on individuals and families. We invite you to visit the DSM-5 Web site at Home | APA DSM-5 where further information on ASD is available under the "Proposed Revisions" tab. This Web site will be revised and opened for public comment for a third a final time late this spring. Once again, thank you for your input.

David Kupfer, M.D.
Chair, DSM-5 Task Force

Darrel Regier, M.D., M.P.H.
Vice-Chair, DSM-5 Task Force

 

[Douglas_MacNeill]

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

I've heard about the proposed changes.
I wonder if there's going to be funding for people with
"social communication disorder" (the new diagnosis that's
supposed to replace Asperger's syndrome, Pervasive
Developmental Disorder-Not Otherwise Specified [PDD-NOS],
and milder forms of Autism Spectrum Disorder).

 

[King_Oni]

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

I've heard about the proposed changes.
I wonder if there's going to be funding for people with "social communication disorder" (the new diagnosis that's supposed to replace Asperger's syndrome, Pervasive Developmental Disorder-Not Otherwise Specified [PDD-NOS],
and milder forms of Autism Spectrum Disorder).

That's the next debate, which will take place after they use DSM V :')

Sarcasm and joking aside... it is a big issue. People on the spectrum now might need services, and I don't see how a new diagnosis (or not being diagnosed) is telling people they not need service for whatever reason. And actually, there was a blog, I believe in this thread even, where John Elder Robison was kinda surprised about the entire "no services" idea. At least that's what I got from it.

It's also quite weird.... that apparently "social communication disorder" should encompass everything aspergers. I can't really see how that works out. There's more to just communication. (or the disorder of that).

I can however see the statement that a lot of people would be labled both autistic AND having this proposed SCD... which in DSM VI will be reverted back to "let's just call it aspergers instead of tacking a lot of labels on".

 

[kg4fxg]

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

Maybe I just don't understand?

But it would seem to me that the pressure is coming from the insurance companies (Lobbyists) in an attempt to reduce care and coverage. Therefore if you are High Functioning - which does not take much to meet that requirement you are denied coverage via insurance. Thus Asperger people would not be cover under this diagnosis for any medication to help with issues.

I don't want to seem overly negative here. Many meds you can get from your regular GP doctor. And I am not sure AS has gained anyone anything in the workplace or with the ADA. Hence I am not sure what good a formal diagnoses really means?

Let me say it this way. I don't want a handout, I have a job. I don't want social security benefits or anything like that, now if you can't work I am upset that you are not getting assistance. For me, personally I have issues on many jobs. But most of the issues are not around Aspergers. I work predominately with black people. They knit pick me from sexual harassment (being in their personal space) to my reading books at my desk. I am not hourly I am management. I just would like the same protection and defense minorities get in the work place with my Aspergers. All I want is equal treatment, but that is not the case.

Summary,

Changing the definition probably will have no effect on me. My wife taught kids with Aspergers in Middle School. I am not sure what it means for kids here.

B

 

[King_Oni]

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

Maybe I just don't understand?

But it would seem to me that the pressure is coming from the insurance companies (Lobbyists) in an attempt to reduce care and coverage. Therefore if you are High Functioning - which does not take much to meet that requirement you are denied coverage via insurance. Thus Asperger people would not be cover under this diagnosis for any medication to help with issues.

I don't want to seem overly negative here. Many meds you can get from your regular GP doctor. And I am not sure AS has gained anyone anything in the workplace or with the ADA. Hence I am not sure what good a formal diagnoses really means?

Let me say it this way. I don't want a handout, I have a job. I don't want social security benefits or anything like that, now if you can't work I am upset that you are not getting assistance. For me, personally I have issues on many jobs. But most of the issues are not around Aspergers. I work predominately with black people. They knit pick me from sexual harassment (being in their personal space) to my reading books at my desk. I am not hourly I am management. I just would like the same protection and defense minorities get in the work place with my Aspergers. All I want is equal treatment, but that is not the case.

Summary,

Changing the definition probably will have no effect on me. My wife taught kids with Aspergers in Middle School. I am not sure what it means for kids here.

B

I think people on the spectrum that can land jobs are quite safe as they can manage fine. It's the group that has problems landing a job or being a "normal" part of society. But then again, those might not be deemed "high functioning".

My first therapist told me that it would be better for me to get a diagnosis, because in the long run, with my history and lack of formal education (on top of no diagnosis but still being considered "weird") I'd be stuck in unemployment benefits all my life because I was totally impossible to place at a job anywhere. Whereas if I had my diagnosis, I could look into services for education (be it some kind of special needs thing or normal) and might file for disability AND have formal backup from a therapist.

But in general I think it does depend a bit on how a country treats people on the spectrum in terms of service. Maybe some countries are more laid back with it, some might try to cut corners and save a lot. It's sad that help for "disabled" people (and you can take that in a really, really broad sense) is being seen as a way to save cash on.

However, if you have to adapt a lot working space for those people... that money has to come from somewhere, and I also think a lot of companies that make a lot of cash aren't really up for doing it... and obviously they have enough cash to make sure no one tells them either.

 

[epath13]

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

In my opinion, social communication disorder is a joke, a lot of people on the spectrum have more issues than just with socializing. And it is incredibly hard to know for sure who is monitoring and, if I may, controlling the changes, are there any hidden "sponsors". So far it feels like no matter what people say it still could happen, DSM5 might come up as planned, which would clearly indicate who's in charge... The only thing that people in Autism/ Asperger's community can do is to continue the work they are doing or maybe work even harder on finding answers to what happens to a brain of a person on the spectrum, how she/ he's different neurogically and genetically so in the end diagnosis could be done through a medical test not evaluation of behavior. In addition to that I hope many of us continue working on methods and ways how to improve lives of people on he spectrum on many different levels. I've had this feeling for quite a while and now it's even stronger, that the time is coming when every one has become a part of a solution, we can't rely on a bunch of people on top to solve everything. But that's where the problem occurs, most of us have no clue, how, and many of us have no motivation either. That's why I started that thread about leaders on the spectrum. Because we're the ones who have inside view, understanding how it feels but at the other hand leaders have to be able to bring people together, unite them under one goal, not just give people a subject to talk about but to be able organize change, so to speak. Can any of us do it? Or can anyone do it without trying to protect their pride, without bitterness, without blaming anyone, with one goal in their hearts - to make a difference, to improve lives?

 

[King_Oni]

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

I just was browsing a german forum, ended up on a german autism site... that resulted in a german article... which actually was a translation of the English one.

It's a bit older (2008 if I'm correct) but it does have an interesting analysis on how autism in general is becoming more prevalent as a diagnosis... thus it might fit in on why asperger's could be binned. It's a PDF, so keep that in mind if you click the link.

Three Reasons Not to Believe in an Autism Epidemic