what I learned about DSM changes... the way I see it

[Undiagnosed]

I was confused about the talk about some changes that are happening in something called a DSM 5 that could affect people with autism and or Asperger?s. So I spent some time trying to learn about the changes. I tried to put the ideas I have down here in in terms of how I think it will translate into real life for real people the way I see it as a self-proclaimed Aspie.

Sorry if this is too long for you. I?ve been obsessing and had to get some of this these ideas out.
If you want to break it down and just read part

1-some points I learned about the changes in a nutshell
2-what will it really be like for people after the change
3-the way I see this unfolding in the future​

4-now I?m just letting my imagination run​

1- I spent quite a bit of time last night learning about the changes in the diagnostic criteria for autism spectrum disorders in the new DSM 5. Some of the points I learned
I?m not quoting exact figures or anything , just approximately what I remember in a nutshell to convey the general idea
The last edition of the DMS was put out 19 years ago and that was where Asperger?s got its first officially agreed upon definition in the US
Apparently since the release of that addition the rate of autism spectrum diagnosis has rose to now something like1in 115.Apparently some people (experts/professionals.... whatever people in charge of this sort of thing) believe this is due at least in part to the diagnostic criteria in the last edition of the DSM being to "loose". Apparently a certain group (don't remember who, but not the people who decided upon the changes) wanted to compare the new version and the current version on a group of real kidsThey took however many kids..... and with the current criteria like 25 qualified for a autism sprectru diagnosis (including Asperger's)Then they took the 25 to see how man of them would qualify with the new criteria and it was I think 12.So yea if that's true a lot of people who would be diagnosed with it now won't be after the change in May. But from what I read the people who already have a diagnosis for Asperger's will automatically have the new diagnosis. Even though. if they were to be evaluated under the new criteria, that diagnosis may not apply. But for those people it won't matter because they will not need to be reevaluated with the new criteria. What I wanna know now is......... What diagnosis will those people who dont get the autism sprectrum diagnosis get?????


2 I mean after the change someone who has never been diagnosed goes in for an evaluation and you meet most of the criteria for the new autism diagnosis. And if it were on the old criteria you would have met All for an Asperger's diagnosis. But now you don't. You can't be diagnosed with PDD NOS either cuz that doesn?t exist now either. So what is the diagnosis for that person??? Nothing??? These would be the people represented in the study I spoke of above. They would be the 13 who were originally in the 25 who qualified under the present criteria but were excluded under the new criteria. So do these people just spend their lives feeling "weird" and like something is wrong with them but never knowing what? Do they get some other diagnosis such as ADD, ADHD, or some mental illness / personality disorder or some combination of them that might fit a some of their issues but doesn?t fit the whole picture the way an Asperger?s diagnosis would have leaving them with still so many unanswered questions?


3-Say this is now 10 or 20 years from now. The whole Asperger's concept is not known to most and nothing but a distant memory to a few and is generally thought of as something like "some old school misunderstanding they used to think people had but then found it not to be a syndrome at all"
Maybe this person, in this future time just doesn?t go in for an evaluation at all because they just have no clue where to start. They know they feel "different" but there is no information available that would ever give them a clue that their issues are autism related. They surely think of autism as a different type of thing all together than what applies to them. How would they link it??? They can't unless by some rare chance they were to stumble onto some information from the past about this so called mistaken syndrome that was once known as Asperger's. Even then why read or take any interest in that. They have no information that leads them to even think of that heaving anything to do with them.
So for most they will just never in their lives hear of any explanation for their traits. They will just spend their lives feeling "weird", that they don't belong anywhere, that they are different. They will over time probably accumulate any number of diagnoses of mental illnesses, disorders, and or syndromes and still be left feeling alone and misunderstood. There will be no such Forums as AS for them to find because by then the Aspie idea will have faded into the past. Hey this scenario is sounding familiar. O yea that?s because it?s the way it was when I and some of you other older AS members were growing up before Asperger?s was a thing. I mean I would have been like 26 in 1994 when the first official US definition was defined in the DSM 4. Looks like we are going backward instead of forward.


4-Then one day (say 2045) brain scans become the method of diagnosing and a "BRAND NEW DISCOVERY" is made. There are articles and reports everywhere........"NEW BRAIN SCAN STUDY REVEALS A NEW SYNDROME RELATED to HIGH FUNCTIONING AUTISM"...... and the report goes like this......." Due to break threw brain scan technology at SuchnSuch Instate of Such n Such it is now known that certain brain patterns in individuals can be linked to certain described traits. These brain patterns identify with the same brain patterns of autistic patients. Dr. Whatchamacallem reports 'we are pleased to announce this amazing new breakthrough. We will now be able to diagnose patients with this new drain disorder called BLA,BLA,BLA,SYNDORME. These patients would before have not been able to be diagnosed or passably have been misdiagnosed in the past' ......... blablablabla".....
So now everyone is happy the medical community has made an amazing breakthrough that will surely help so many. Then it takes like ten more years before someone comes out with a report titled like this ? " BLA,BLA,BLA SYNDROME DESCOVERED BY DR. WHATCHACALLEM in 2045 IS NOW BELEIVED TO BE ASSOCIATED WITH THE SYNDROME THAT WAS KNOWS IN THE LATE 1900'S AND EARLY 2000'S AS AASPERGER'S" and the report goes on the explain, "the such and such studies reveal that the reported traits in patients with BLA,BLA,BLA,SYNDROME discovered by Dr. SoNSo in 2045 mirror almost identically the traits described in patients diagnosed with Asperger?s syndrome in the late 1900'S up until 2013." This report is quickly hushed by the al mighty Medical community. And so hardly anyone ever gets to read it.

 

[King_Oni]

I doubt that even if they drop the diagnosis, that the DSM IV will never be archived. I'm quite sure that such books will be consulted by experts in the field. In 20 years or so, when DSM 6 will come, a lot of people working into the psychiatrics field will still know autism and the history of it. The reason a lot of illnesses (to put em like that) aren't mapped properly in terms of "the past" is because only since DSM 3 there were actual terms and diagnosis.

Before that it was just a listing of symptoms from therapists all over the country. Since DSM 3 it got streamlined. DSM 5 is a similar case.

You wonder what will happen with those 13 people out of 25 in your example. Let's just assume that at least 10 of them aren't severe enough. Some of "us" (us on the forum) are able to hold jobs, drive cars, have a stable marriage, have kids and have a "normal" life. I'm not saying they shouldn't carry a diagnosis, but for them, the diagnosis sometimes is just a formality "just in case". They might never ever refer to this as an actual issue they encounter in everyday life.

For some, myself for example, the path of life has been a rocky road with a lot of trying out college, dropping out, being unemployed for more years than I've been employed, relationship issues, sensory issues and what have you. For those I think even the new criteria will still qualify.

What happens to those extreme cases that are overlooked? Quite often it'll end up at a therapist, and it gets tacked on with a few single different disorders, just NOT autism. Autism is not the only developmental disorder around. Yes, PDD-NOS is getting dropped, because... the PDD category had more people than actual autism, while it actually was a discard pile for anyone that had relatively similar symptoms but not quite.

If they're not labeled as autistic, it would totally depend on what their issues are, but I'm quite sure there's ways to work around that.

Besides; as much as I don't like a lot of change and dropping aspergers might rub me the wrong way, I'm hopeful that they'll figure out that lumping everyone together doesn't work out like intended, and we'll expect, just like DSM 4 had it... a Revised edition with "new" diagnosis. Yet, much like in DSM 4, this will take a while.

The people that do not qualify, will have to make themselves heard at the therapists office and see if they can refer to the old criteria and how this reflects to the new criteria. Diagnosing people isn't as black and white. In fact that entire diagnostics manual is open to some form of interpretation.

 

[Undiagnosed]

I was thinking that too. That they will probably see that a rivision will be needed. After this comes into effect in the real world as opposed to being words on paper.

 

[King_Oni]

Theory versus practice always is an issue.

The issue I in general have with it, is that in some cases it might get people in situations that are troublesome and a revision will not revert that damage in any way.

But for now, I'm curious to see how the new diagnostics turn out.

If there's a large decrease in autistic people, one can wonder if the new rules aren't too strict and if we end up with a group of undiagnosed, but still severely limited people, that on paper look healthy. I'm actually conviced that even with current diagnostics, there's a lot of people not diagnosed properly, and changing it to a stricter tool doesn't help them.

Also, changing criteria, and as such probably testing even, will make it a hit and miss for doctors in the near future. Even now 2 doctors can have a different opinion on it, and changing the rules probably doesn't make them agree more and easier.

 

[Undiagnosed]

If there's a large decrease in autistic people, one can wonder if the new rules aren't too strict and if we end up with a group of undiagnosed, but still severely limited people, that on paper look healthy. I'm actually conviced that even with current diagnostics, there's a lot of people not diagnosed properly, and changing it to a stricter tool doesn't help them.

That's what I beleive's gonna happen. It will take quite a while to see the numbers go down on statistics. I mean all the people who are diagnosed already will stilll havve the diagnosis. So untill they die they are still in the count. It will gradually goe down as new paeople who would have been diagnosed with it won't be. Not sure about "severely limited". I guess that would depend on what one would consider "sererly limited" to be. After rreading the llist of the new criteria and trying to put it into perspective of "real people" I would say they are people who can survive in this world one way or another on their own, or with a little help from family and friends, but have quite a few problems. Some of them probably not obvious untill you look deeper into their issues. They might appear more "normal" than they really are. I'm getting into these details becouse my son needs evaluated and I am concerned if he will be diagnosed with it or not.

In all the atricles and stuff u read they don't put it that way becouse they don't want to stir up a bunch of people. But all u have to do is read the old criteria and the new and apply it to yourself and or others you knnow to see that it IS certainley gonna exclude quite a few oeople in the future.

[QI'm quite sure that such books will be consulted by experts in the field. In 20 years or so, when DSM 6 will come, a lot of people working into the psychiatrics field will still know autism and the history of it.

They will know about it. And since it was dropped (asperger's I mean) it will be open to each ones opinion weater or not it was ever valid. Surley some will feel it was dropped becouse it wasn't valid or significant in the first place and some will beleive init. But either way they arn't alllowed to diagnos people with it. And at that time imformation about Asperger's is not available to the population like it is to us now. i.e. knowing people with it, sites such as AS, google searches full of information.... etc.

 

[WildCat]

I remember hearing from someone stating that the definition of autism changes every couple of years or so. They were right, and this is proof of it. "Having autism" is already vague enough as it is - I mean, some people are very limited by their condition and present on the whole as having intellectual impairments, others are able to adapt to the world around them and achieve some amount of success, and anything in between. I was diagnosed as having Asperger's at one point, possibly because that's the impression I gave to the psychologist, then later on as having "autistic disorder, high functioning" once they assessed my early development as a child. Having "autism spectrum disorder" actually does me a favor, more than asperger's or autistic disorder - it covers my personality traits without implying that I'm either-or, if you catch my drift. I know that I'm not completely limited by any means, yet there are areas in life like socialization and better living skills that I could use some more help in if given the opportunity from people willing to spend the time.

Just give it a couple more years - they'll either change their minds about us, group us separately again, or just grugingly accept that autism is yet another part of our diversity as the human species.

 

[Undiagnosed]

[

"....autism is yet another part of our diversity as the human species. "

Interesting. I never thought of it that way. Hopefully you are like a researcher or something and you could exporte that angle. Not sure what you Exactley are thinking but I think I get the drift.
I mean if you think about it ... The autism rate is up to like what, 1 in 115 which has skyrocketed over the past several years...the official Asperter's ddefinition came out in 1994 so a lot of people such as myself (i am age 44) were never diagnosed becouse when we were kids people were not generally know to have Asperger's. I would venture to guess that of the people diagnosed with Asperger's in the US today a very high percentage fall within the age range who were kids being diagnnosed between 1994-2013. And so a lot of the people in the population in their 30's -90's I would guess have never considered haveing autism/Asperger's. Wow that could be a lot of people. So if the Asperger's would have not been done away with and left to continue to at leas a whole lifespan to inclued every generation What would the number of people in the population with some autism be??
From all the stuff I'v been reading I was seeming to gather that some official people ,,, whoever,,, were wanting to make these changes due to the hight numbers of autism latley. Now I am geting a new perspective on that. I mean if the definition would have continued over an entire lifespan of people I just can't even guess hwhat percent of the population would end up haveing autism. Wow!! Yep. That's one of the main reasons they must be changeing it.

 

[WildCat]

That wasn't really an original quote from myself, I was paraphrasing a bit from the words of another autism researcher, but I agree with it so there you go. I don't consider myself a researcher or being qualified for one by any means, but I did gather quite a bit of information on autism once I decided to explore my own being in depth, and this was after years of denying my own autism. It is a part of our makeup, as are other disorders or conditions, but in the end few can fully embrace it.

Personally, I don't believe that the rate of autism is 1 in 88 or 1 in 115. That might be more the occurrence of people with traits of autism, rather than someone with so-and-so autism. The incidence of "autism" is either higher or lower, depending on what you want to diagnose and how an individual presents their self. It used to be 1 in 10,000 or something like that around the middle of the 20th century, as it was poorly understood and acknowledged and only the most obvious of autistics were ever given that honor...only now do we (and sometimes falsely) assume that the incidence is going up, as we're just now catching on to it and that the criteria has broadened itself. Soon enough, it could be 1 in 44 as the definition changes yet again...or who knows, we'll all be pointing fingers at each other and saying "OMG autism"

 

[Undiagnosed]

I feel like it willl be going down in the future due to the changes in this DMS. And after the light bulb went off after I read your statment I'm pretty sure a lot of the reason for the change is to keep the numbers from continueing to rise. I mean they can't let it keep going untill an entire lifespan of generations have a chance to be possabley diagnosed with Asperger's and it end's up being like half the people are considered to have a 'brain disorder'.