Undiagnosed
Well-Known Member
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 runSorry 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
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.
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