Losing the Aspergers/Autism explination?

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If SAD was diagnosed as a comorbid. Great. If the SAD was found but Autism was missed then the root cause of the SAD was likely missed

Yes it hard to diagnose. But that is the field you are choosing to go into. That is what you will be paid to get right. If you are not confident in your ability to get it right don’t take the position. If the psychology field does not have the information to make an Autism Spectrum diagnosis, they should not be giving out a diagnosis.


No I don’t want to separate it, As I have written multiple times I favor Aspergers as a subcategory of Autism. I you look at my signature “autism” is bolded. Why would I do that I if thought they were separate conditions? I bolded it because “Apies” are stigmatized as elitists or Aspie supremacists who identify that way because they do not want to be associated with autistics. Should I have to do that for this reason? No. In the real world it’s necessary at this point because some Aspies following the DSM IV separating the two did have supremacists attitudes and it was used to successfully tarnished the name.


“ASD Level 1” is just a number , “Aspergers-Autism” honors the person who found the condition and said the positive things quoted in my signature. It is pretty damm condescending for all of you to tell me how you think I should identify just because you can’t relate to my experiences.

I don’t have statistics but let’s say for arguments sake that out of all the people that did not like the change prior to it happening, 50% now agree it is actually ok, another 45% still do not like it but have resigned themselves to accepting the new name, and 5% are like me, outliers who are still having problems with the change. Since as you keep on mentioning the diagnostic criteria is similar what is the problem with renaming ASD Level 1 to Aspergers-Autism? For 95% the name change won’t mean much, thus won’t be harmful, but for the outliers this could be really helpful, so why the opposition to making the my proposed change? I get the feeling that people are offended by people creating an identity out a diagnosis. I don’t get it.

I've come across this claim many times before, along with the claim that the unemployment rate is also extremely high (somewhere above 50%), neither of which really surprises me in the least if only because they are issues I have unfortunately had first-hand experience with (suicide attempt in 1984, extremely patchy work history & now unemployed again). However, I have been searching for reliable statistics regarding these issues and how and why autistics and those with A.S. are so disproportionatelly affected by them, but so far with no luck (the 'Autism Speaks' website perhaps?). There doesn't seem to be anything I can find that lends credence to the idea that the unemployment and suicide rates are well above average (that's not to say I don't believe they are, but...).

Probably above average for both.

I doubt, though, that 80% of people with HFA and (formerly) Asperger's are unemployed.

But you started a thread about it...

Anyway, I don't understand this. It's just a word. If I start calling the colour blue "orange", does blue lose its identity? Well, no. The colour still looks the same. In my native language, there actually is no "blue"- there's a word for "dark blue" and a word for "light blue" (like how in English "red" and "pink" are different, even though pink is actually light red)...but it really doesn't matter because light blue and dark blue exist regardless of how you call them. Not meaning to be condescending but I don't understand what is the big deal about the word and your identity.

I understand that Asperger's honoured the guy's name and you liked him so you think it should... but what does that have to with your "identity"? You're not him (are you? ).

I started a this thread not about the DSM 5 per se but about feeling after having no explanation and feeling nobody was like me for decades that I had found not only an explanation a commonality a community. That was the identity I keep referencing. The thread was also the feeling of losing that feeling and identity, sense of community etc . With the finding out I was "Aspie" getting the Asperger diagnosis and finding Wrong Planet I thought I had found it and I probably had. At the time most of the posters or least a lot of them agreed with me not only about that but other traits and autistic issues. This finding identity after all these years things was not only talked about here, but by various bloggers quite a lot in the years prior to and during 2013 which is when I found out I was autistic and joined WP. 2013 was a the year when the DSM 5 came into effect. Prior to the DSM 5 coming into effect there were petitions on and off line with people asking the DSM not to take the Aspergers name out. A common argument used against the removal was the negative effect of people who identified with Aspergers. But as we know the DSM 5 did come into effect. My first reaction was my inclination for horrible timing had struck again. Yes, this was bad but like a lot of posters said at the time we could still use it the way we want and who knows maybe someday Aspergers will get officially recognized again. Since people on the spectrum dislike change, their was no apparent reason for me to believe opinion would radically change.

I could not have been more wrong. The Aspergers Autistic and Wrong Planet of 2013 I just described must seem like a description, from well another planet, (pun most certainly intended) for a lot of you who were not around back in ‘13. As seen in just in this thread the opinion of community about the DSM 5 has completely reversed itself. And Aspergers identity? People just don’t “get it” despite my 5 pages of trying explain it. I watched Aspergers change from a diagnosed mostly positive connotation negative colloquial one. Long threads about is it over diagnosed, is it trendy? with wannabees using it to make excuses for rude behavior. And the colloquial Aspergers has narrowed to only the “highest” Sheldon version which is not me. Finding “this commonality/identify and losing a lot of it right away was very disconcerting. In the last few weeks another trait seen as a bedrock Autistic trait was being questioned so it was natural of me to wonder if I was looking at another 180 degree reversal of community opinion. And if that happens what next? where does it stop?,will I be back to where I was with no real commonalities with people? These fears is why I started this thread.

You are still reading this? I do appreciate that. The thread may have started to vent about these fears but like often happens it on WP it moved into another direction ie the removal of aspergers.

Based I what I have read above I can only conclude that my original fears were correct but the reality is worse then I thought.

I've always thought that figure was questionable as well. Looking at the diagnosis rate explosion over the last 10-15 years, you have to assume there's a sizable percentage of undiagnosed people on the spectrum not being accounted for in those figures. It will be very interesting to see what that unemployment number looks like in a decade or so here when all these kids getting diagnosed at rates of 1 in 68 reach working age.

You can criticize all you want, but until you've studied autism and/or psychology in an academic manner or have extensive experience with them, you probably won't understand exactly how difficult it is to diagnose it due to the fact that autism is so complicated.

You do realize that in an essence, many of its symptoms, perhaps even most, are actually symptoms of many other disorders? Many disorders are comorbid with autism (we're talking at least ten after excluding medical issues like epilepsy and IBS -- this wiki page will give you an idea of some of them, though it doesn't even touch on personality disorders) and autism basically seems to be, put quite simply, having symptoms of multiple of these disorders, yet only receiving one diagnosis for all of those symptoms. It's almost as if the disorders comorbid with autism actually help make up the autism spectrum. When you think of it that way, it should make sense why it's so difficult to diagnose. (There are actually articles written about this.) It actually seems to get harder to diagnose with age because people often learn coping skills. But it's interesting how you still come across feeling as if you're more qualified to make the diagnosis than professionals are though. How many autistic people have you been around and actually observed? How long did you spend with them? How old where they and did the ages vary drastically? What different types of symptoms did you see being displayed by different people? I just still don't understand why anyone would be so critical when they don't have the background knowledge of the situation to do so.

I'm not really sure what you have against psychologists anyway. You haven't gone to every single one, and every single person hasn't dealt with misdiagnosis. You're acting like you know the situations surrounding everyone's misdiagnosis, but you don't and you won't. You have no idea what other symptoms these people displayed that may cover up or interfere with their autistic traits. For example, it's impossible for an untrained person to know that I'm on the spectrum. Most people would label me as "shy" or "quiet" whereas someone who's trained would likely pick up that it's more than that. And it's likely the same for the people you've described, since I was also told I had anxiety. This same psychologist also told me that I didn't have AS. I know now that I am indeed on the spectrum, but I'm not mad at her or any other psychologists or psychiatrists. That would be dumb. Why get hung up on misdiagnosis when the important thing is that the diagnosis was eventually picked up? Not to mention that if you were eventually officially diagnosed, it was likely picked up by a psychologist or psychiatrist.

I'm not going to waste my time trying to convince you of anything though, especially when my point still stands: by that logic, if you believe all professionals cannot correctly diagnose autism, then it can still be argued that their incompetence/inability to correctly diagnose autism is what lead them to incorrectly label autism as a disorder, and that in reality, autism doesn't even exist.


Wouldn't a subcategory, by definition, separate the diagnoses? That's what the DSM-IV considered AS and many seem to feel that it separated people by diagnosis. I'm not sure I really understand what you mean with the rest of this paragraph though. I know that AS came to be used derogatorily by many people... I'm pretty sure I even mentioned that earlier as another possible reason that the separate diagnoses were eliminated.



No one told you what we think you should identity as; what we've done is question why you feel the way you do because most of us don't seem to feel the same way. We're only trying to understand your point of view.

I've already gone over why the specific names of the diagnoses were dropped though, so that's the problem with renaming it. They're trying to get away from the terms that separate people, so why would they bring them back now? It would've only worked if they'd done this originally and had later taken it out in a later update.

Not to mention that it doesn't make sense to bring them back anyway. What about people diagnosed PDD-NOS or childhood disintegrative disorder? Is AS is brought back, wouldn't it only be fair to bring back these too? But then, hmm... what about the people with PDD-NOS and childhood disintegrative disorder that are diagnosed ASD Level 1 too? Why should they get an "Autism-Aspergers" label? Now do you get why your proposal doesn't make sense? The point is to cater to the majority, not the minority.


You do realize that that's exactly what I've been trying to show you about you having a bias against all professionals diagnosing autism? You can't relate to every professional's experience with autism and abnormal psychology or with everyone else's display of symptoms, so you as you said, you can't say how you think they should go about diagnosis (or in this case, criticize it), because you can't relate to it - as I said earlier, you do not have that background knowledge, so I don't know why you've kept on sounding condescending when it comes to this topic, considering it's not a topic of your expertise. I'm not trying to be rude, but that's kind of hypocritical.

Jazebel's impassioned arguement notwithstanding, I understand what you're saying ASPartofme. I felt discomfort with a label of AS because it is an identity and not one that quite fits, but I felt a similar unease to what you describe and I agree, labels help form our identity, they matter, and changing them (whether from AS to ASD or normal to not typical) has a tremendous impact on how we see ourselves, how we conduct ourselves, and how we feel about ourselves. Arguments about how you or anyone should feel are beside the point.

I see myself as "me"--with all my quirks. "Asperger's" is a state of mind and body, and is entrenched in the autistic culture, and the knowledge base of all people who are concerned with autism. This is despite the fact that Asperger's was omitted from DSM V.

I see myself as "me," with Asperger's traits, traits common to autism in general, and human traits as well.

Hans Asperger's writings are there for the world to see. Tony Attwood's as well. And other people who have studied Asperger's. They will never disappear owing to the whims of diagnosticians.

I hope someday a label is found that will fit you well.

Very good question. Since I favor more subcategories and not putting everything into one category my inclination would be not to have a problem with bringing them back. But I would like to know how those who were affected with this feel before I commit to a opinion.



You are crediting me with saying things I never said.
I never said I am mad at all professionals. I would not be proposing changing the name of the syndrome to honor a professional if I felt that way, nor would I be listing a diagnosis in my signature given to me by a professional if I felt that way. I am just mad at professionals who do not listen, dismiss people and try to invalidate them just because they are more knowledgeable.

I am saying there is good reason for amateurs to be suspicious of misdiagnoses or non diagnosis in the case of amateur self suspected autism. A lot of professionals lack basic knowledge. I say that not out of blind hatred or paranoia but because it is backed up by reliable sources. http://sfari.org/news-and-opinion/blog/ ... -in-autism. I am happy you seemed to have come out of your misdiagnosis well but that is not going to be true for a lot of people. People on the spectrum tend to be quite fragile. http://sfari.org/news-and-opinion/news/ ... ith-autism. So feelings of the Autistic matter, not dismissing them with I am the expert you are not matters , getting the diagnosis right matters.
The common symptoms between Autism and other conditions is an argument for listening to clients not an argument against.

In this thread we have been going by the understanding that only the reasons we have been discussing are the only reasons for the change. That is only a partial explanation. There was a feeling that Autism was overdiagnosed in general and that was especially true with Aspergers. While denying the intent was to lower Autism diagnosis several members of the committee agreed with the over diagnosis idea http://www.psychologytoday.com/blog/aspergers-alive/201211/why-claim-aspergers-is-overdiagnosedv. Money plays a parts in these matters http://www.psychologytoday.com/blog/aspergers-alive/201305/is-asperger-s-overdiagnosed-because-parents-want-free-stuff. My own clinician was at some of the meetings where the DSM 5 changes were being formulated and stated insurance was the main focus.

But the question is, keeping in line with the DSM-5 changes, how would the other diagnoses be labeled as levels? It just wouldn't work.
But if you really feel this strongly, why don't you actually do something about it? Like starting a petition or writing a letter or something? It's not likely to change if you don't.


No I'm not. I was only saying what impression you've given through your posts, which is that you're mad at all professionals because you used "psychologists" in a plural sense and never did specify that you were only referring to those who likely are incompetent when it comes to ASD diagnoses. That's what I was telling you by trying to show you how all professionals aren't misdiagnosing and not listening to people on purpose, but you continued on saying all psychologists. The fact is, if you're unhappy with your psychologist/psychiatrist/whoever's diagnosing you, then find a new one. If they're not familiar enough with the subject of autism to be giving a proper diagnosis, ideally, you would pick up on that during your first meeting with them. Really though, someone seeking assessment should be going to someone they know has worked with autistic people and especially those around their age, if at all possible. If they know the professional doesn't have experience with autism and their particular age group, and they go to them anyway, then they probably got misdiagnosed because they went to the wrong person. I guarantee this happens with a lot of people. There are many factors that could lead to a misdiagnosis and lot of the times it may be because of the patient.

Yes getting the diagnosis right is what matters; that's exactly what I said in my previous post when I was talking about how there's no reason to mad at professionals if you're misdiagnosed, because I still get the impression that you're mad that people get misdiagnosed. I still don't understand why you're mad in the first place.


I already mentioned AS being overdiagnosed being a possible reason for the DSM-5 changes. PsychologyToday isn't really a source I personally like though. I've found that the articles I've read on their aren't always fact checked. Either way though, the main reason had to do with the fact that research has not found any significant differences between the diagnoses.

But if anything the DSM-V criteria are slightly more inclusive than DSM-IV and will therefore lead to more diagnosis. I remember when I was waiting to be assessed and stressing out over all the different sets of criteria, I can't remember the details anymore but I remember at the time thinking I fit most under DSM-V than the IV or ICD.

Unless you mean it would put people off wanting the diagnosis? (sorry didn't read the links maybe that answers the question)

I've learned a lot from people with Asperger's about my own kids, since they do seem to share a lot of traits as my kids but unlike my kids, can tell me about it. As such, it makes sense to me to merge them, and I'm glad they did, because maybe it will help the lower functioning end of the spectrum.

I get why some people with AS would be pissed about the change though. What a downgrade... Asperger's was the special autism dx, which separated them from the "lesser-types", and I guess they don't feel like they get anything good out of the deal. It probably will discourage self-diagnosing somewhat, although I don't see the term going away entirely any time soon.

What happens sometimes with repressed groups is when recognition comes their way some go overboard. It happened with the gays in the 1970s and with us it took the form of Aspie supremacy. I think the DSM IV decision to completely separate Aspergers from Autism instead of making Aspergers a sub category of Autism made this problem worse. A lot of Aspie elitists were glad when Asperger’s was kicked out of the DSM because they did not have to be associated with “disabled” people and they could make the collegial Aspergers into what they wanted. Infuriatingly they got what they wanted, the 2015 colloquial “Aspergers” definition is an ableist person with a 140+ IQ and a reason often given by posters as to why they do want to be associated the “Aspergers” name anymore. We Jewish people have the similar image but there is no movement I am aware of to drop the Jewish name because of our public image in a lot of places is that we are shysters who control the world, nor am I aware of any effort by Italians to chuck their name because of the Mafia. Most people who identified as aspies are not elitist, most of us are fine having a link with LFA people, most of us who do or did associate with Aspergers did not do it to be trendy, or to use it as an excuse to be rude or to receive taxpayer money we do not deserve. Non autistics saying these ugly stereotypes that is one thing, so many of us either agreeing with these ugly stereotypes or agreeing to drop the name because of them is both heartbreaking and infuriating




I am not angry at psychologists who make an honest mistake. I am angry at those who misdiagnose because they refuse to take into account the more modern understanding or just don't bother keeping up with the new info. And if what I have been reading here there are a lot of professionals in those categories. While it is very hard to diagnose Autism, it is harder to be misdiagnosed. If somebody is paying you to do something they are not expected to know how and why you found a solution, only that you did. They are paying you a lot of money precisely because it is difficult.

I think most people seeking an Autism diagnosis do not know that the lack of knowledge and incorrect knowledge among psychologists is much greater for Autism then other conditions. A lot of people would not doubt a psychologist who told them they cannot have Autism because they hold a job and can speak

Interesting you mention petitions and Psychology Today. I started a petition to remove an article from that publication because I thought it would hurt Autistics trying to find work. There were several dozen blogs harshly critical of that article and one day the article disappeared I used the above PT article due to the quotes by people on the DSM committee.
I have on occasion thought about starting a petition to put Aspergers back. Prior to the DSM 5 there were many petitions that tried to prevent the dropping of Aspergers. So if those efforts failed why would a petition to revert it work now when unlike then, the community is behind the decision. Why would they be impressed with the 1 or 2 signatures I might get at this point? But who knows maybe one day I will decide to do it.