DSM change justified due to pandemic of AS misdiagnosis

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Not to be pedantic, but Asperger never gave the disorder his name; he called it "autistic psychopathy" and it was changed to Asperger syndrome in 1981 by Dr. Lorna Wing, the doctor who first translated Asperger's papers from German to English.

Valid points. I base this on people who have explicitly said so (basically saying they like having Asperger's and it has never made them unhappy). I cannot use statistics to back up what I am saying as it's not something that can be measured directly, so effectively by necessity this is an opinion based discussion - although I believe the massive increase in diagnosis in recent years is what you would call a "red flag" for this.

To those who mentioned the measurement issue, I believe the solution to this is to distinguish/separate the idea of Asperger's Syndrome as a clinical diagnosis, and being on the Autistic Spectrum as a descriptor (for example, saying someone is on the Autistic Spectrum would be equivalent to saying someone has red hair - it is part of who they are but doesn't necessarily cause them to suffer. The problem with psychiatric disorders is that by definition they are supposed to cause suffering.)



Ok, before I respond let me be perfectly clear that I don't hate myself, I don't hate autistic people, and I am not a supporter of eugenics (really? eugenics? talk about leaping to conclusions).

You completely misunderstand me. I'm not trying to make autistic people feel bad and I am not anti-activism (I have been an activist myself in the past and still engage in activism related things on occasion). I am arguing about misclassification; that diagnosis of mental disorders (which is a serious thing) is being misused because there is no appropriate alternative available, and there should be an alternative. Currently it's all or nothing, so all these people in the middle are either inappropriately diagnosed with a mental disorder, or are skipped over altogether. People who are on the spectrum but are not and have never experienced clinically significant distress or impairment in daily functioning due to being on the spectrum should be able to be classified as being on the spectrum but without being diagnosed with a mental disorder and all the psychiatric implications that go along with that, a.k.a. Asperger's Syndrome.

Hypothetically, if this scenario became the case, then my own diagnosis for example could currently be downgraded from Asperger's Syndrome to being on the ASD spectrum as I feel it does not currently cause me severe enough impairment to constitute diagnosis of a mental disorder.

The problem with misdiagnosed people on the outer edges of the spectrum unintentionally (as this is their experience of supposedly "having aspergers" so they don't know any better) going about saying that Asperger's is all positive and doesn't cause them any significant difficulties, is that it can cause problems and misunderstanding for people who are currently diagnosed and experiencing severe enough symptoms that cause them real distress. This is quite different from activism, which aims to educate society about both the positive things autistic people have to contribute to society and also aims to educate society about the difficulties faced by people with autism and how other people can help them overcome these difficulties and make things easier for them (this is a very rough definition of activism but you get the general idea).

In the case of ASD it's important for high functioning people on the spectrum to be able to have a label for their own sense of self identity and understanding, but that label needs to be distinguished from incorrectly being diagnosed with a "disorder" as defined by psychiatry.

Someone already beat me to picking up on this part of the OP, but I too took pause at this.

To whom are you referring? Call me paranoid but I can't help feeling like perhaps I am at least among the new members here who possibly prompted you to make this thread, as I fit the person you are talking about --- even my signature states that I'm newly self-diagnosed.

But with all due respect, you know nothing about me so far and I would guess the same for any other person you're grouping together in this. I haven't been a member of this forum long enough yet to even have shared everything I've been through in my life which was a profound struggle that only now I see all pointed to SOMETHING on the spectrum all along.

Yes, unless I get a formal diagnosis, I can't even say for certain "I have Aspergers." A few online self-tests feel tenuous at best even to me.

But I find it arrogant of someone to assume all the things you seem to be assuming about someone in my position, an adult who seems -- to you -- like she's suddenly decided she ha Aspergers.

First of all it's not like that, and secondly, as I've stated, you don't even know yet what I may have gone through in my life as someone diagnosed with nothing at all as yet, who was none the less having the most agonizing issues and profound distress from sensory and other issues which my parents completely shoved under the proverbial rug, and which, again, I have not even listed yet around these forum boards, but if I did they might even leave YOU in no doubt at all that it was all very likely what it seems to be....

I don't WANT it to be Asperger's or anyplace at all on the autistic spectrum. I've spent my whole life believing there's "nothing different/wrong with me" yet wondering what the hell was in fact wrong with me, and suffering serious consequences of exhaustion and meltdown for even the effort of trying to fit in. Who wants to think that they are anything but "just like everyone else"?

In fact, it's been several years since I first started hearing about Asperger's and back THEN so much of it sounded like me that I was HORRIFIED. When I first had my suspicions I most certainly resisted that self-diagnosis with every fiber of my being.

To be perfectly honest with you -- and this is very sad -- I was repulsed at first, a few years ago.

I did NOT want "that" to be ME.

I was normal, I inwardly screamed to myself up until very recently --- except for all the CRAP I've lived my whole life going through, and never feeling "normal" at all.....which I couldn't explain either at the time or even when I was sitting here denying that what I was hearing about spectrum disorders was in fact me.

It has taken me YEARS to stop denying that every time I ran into something to do with Asperger's that all the bells of recognition went off in my head. I fought and fought to deny to myself that this has ANYTHING to do with me.

So when I read your OP, it felt like a slap in the face. This isn't a club I even wanted to join, thanks. I'm on this website now because the very idea is upsetting to me and I don't know what to do or what to think.

And as for severe symptoms and suffering, as I said before, how do you know what anyone's suffered and how severely? I too have a lifetime of truly agonizing suffering and I'm amazed that just because I haven't spilled my guts in my first few posts about exactly what's been going on in my life that's been so horrendous, it's to be assumed that I haven't had "as severe" fallout from possibly having this brain wiring as you've had.

I'm sorry if this post has come off like an angry rant -- I really did not want to jump into Wrong Planet and start making enemies -- another thing that has filled my life with despair but that I haven't just started regurgitating yet to total strangers on a website...

I realize your post is referring to people generally but because you point out certain kinds of people it feels a bit personal and I wanted to respond and defend my position and at least speak for myself.

You can't possibly know how significant the distress or the degree of impairment has been in someone's life. Speaking for myself, I have a life story that could curl your hair, but I haven't even gotten started yet with disclosure of what my issues have done to my life. I'm offended at the shockingly blithe assumption you're making about a lot of people.

^ I apologize that the tone of my post has been upsetting to you.

Let me clarify that I am referring only to people who have explicitly said on this website or on facebook that having Aspergers has not caused them any significant difficulties and other people who believe this (thus this would not include yourself). My tone probably came across as accusing because sometimes reading posts such as what I have described (by people saying that having aspergers is not associated with having any difficulties) sometimes makes me feel frustrated on behalf of people such as yourself, who have really struggled due to having a disorder which has become misrepresented and misunderstood. Although I do understand that the people I refer to just don't know any better.

The reason I mention that many of such people probably fall are newly diagnosed or self-diagnosed category is because every such comment I have read has been by somebody either self-diagnosed or newly diagnosed. However, I also took care in my topic post to emphasize that I am certainly not referring to all newly diagnosed or self-diagnosed people, just the specific subset of people who hold these beliefs.

- bolded for clarification.

Also (sorry to edit again) I included my own experiences only as sort of an example of what some typical asperger's symptoms are, but I don't make the assumption that my experiences are worse than anyone else's. Actually I said that I was mild. I don't make any assumptions about what anybody else has experienced apart from what they actually say they have experienced - which is what I am discussing.

I am referring to people who say and feel that they have never experienced any significant problems due to having Aspergers. If you reread my original post you will see I say the same thing there too. Hopefully I have been clear enough now.

final edit: Ok, I apologize, I reread my original post and I couldn't find it in there. I had to delete a few paragraphs because I kept getting convoluted and semi-repeating myself, and I must have accidentally deleted that bit. I promise you that it was in there originally though, I never lie about anything. I will fix that right now. I am really sorry.

Sunshower, thank you so very much for your clarification -- and I owe you an apology too.

I'm relieved to hear that your intention was not what I took it to be, and I'm sorry I jumped all over you.

I get what you're saying now -- that there are people who claim that they have never been caused difficulties and those are the people you're referring to.

Once again, I apologize for responding over-sensitively -- I make no excuses except that I am feeling very, very strange and delicate lately, as my own arrival at this whole question about myself is so very new and also upsetting to me.

Forgive me for making assumptions myself -- I'm the pot meeting the kettle in this one! I'm sorry about that, and thank you again.

I don't really want to question people's diagnoses or self-diagnoses, but I have encountered people who either do not seem to understand some of the difficulties others describe, or assume that such difficulties are equal to theirs. That sort of thing is frustrating to go up against. For me, it's because I do not think what I said is being taken seriously.

The bully thread is a good example - two people argued that bullying isn't that bad and it is only a problem if you allow it to be a problem. One of the two described bullying other children while in school as an explanation as to why bullying is really not so bad. The other seemed to be comparing relatively mild and infrequent situations to the intense, continuous bullying many others experienced. I don't think this means either of these two people are not autistic, however.

It's ok, my tone must have come across wrongly as you are the second person who has taken what I have said in this light. I think I must have deleted the wrong paragraphs because when I reread it, it sounded different to how it read when I first wrote it. I was hoping to initiate a discussion of what people interpret as a disorder and whether the diagnosis of aspergers is useful anymore as a diagnosis of a "disorder" as such due to the perception of it becoming more like a human characteristic (like hair colour for example) rather than a source of distress. I am a psychology student and am interested in the misconception by the public of the psychiatric definition of mental disorders (in a very specific sense) and diagnosing disorders, but I simultaneously feel that a categorization or label is necessary for people on the spectrum who don't experience distress so they are able to also experience a sense of belonging without being mislabeled as having a disorder.

I am sorry that I have upset you, and please feel that you are welcome here. Everyone on the spectrum and off the spectrum, with diagnosis, self diagnosed, without diagnosis, with other diagnoses, etc is welcome to post on this site.

Posting on the bullying thread triggered off the train of thoughts that led me to post here. Maybe my tone came across as accusatory because of the nature of the bullying thread.

The discrepancy between public vs psychiatric perception of clinical diagnosis/clinical disorders is certainly not limited to Asperger's. Anxiety disorders and ADHD are also good examples of this. I've become a lot more aware of this discrepancy since studying psychopathology this semester. Prior to studying psychopathology I was also somewhat ignorant of the actual purpose/correct use of clinical diagnosis/disorders. I think ASD is a particularly interesting case because there is such a valid public need to be able to know if one is on the spectrum even if one is not far enough along the spectrum to be classified as having a clinical syndrome.

Thank you for that sunshower; yes, I can see now that there is a good question you're raising about the new designations that have been brought in and their implications (the "hair color"/ characteristic-versus- disorder question).

I did make a post about wondering if I should be on this site! I just feel so brand new to what I'm experiencing as almost like "owning up to myself" about even merely the possibility of being part of this whole equation that I almost do feel like I may not "deserve" somehow to be here if I don't know for sure about myself. But you're right, I can see that this site has all manner of people, even neurotypicals, and by that criteria I'm somewhere!

Thank you again, and I hope that you get a really great discourse happening about your initial questions and ponderings. I'm sorry I sidetracked that!

As far as I can tell, the change of name was purely based on it and Kanner's being on a spectrum of manifestation (not always severity; disabled is as disabled does, whatever it looks like), and it fitted the evidence better by doing this.

Hence, ASD.

Last edited by Dillogic on 15 Jun 2013, 5:49 am, edited 1 time in total.

I'm wondering whether I'm beating a dead horse here and I need to start again and completely restructure my initial post so the topic is clearer and less upsetting. I probably won't start again tonight but I will consider deleting it. It's related to my "special interest" area (psychology, the diagnostic manual - it's flaws and strengths, etc).

In regards to yourself, I'm sorry that you were unfortunate enough to read my post when in a vulnerable state. I promise you the vast majority of us on here, while sometimes socially awkward, are well-intentioned and want to be as inclusive as possible. I read your haven post and I do unfortunately have very strong opinions about things, as another poster mentioned, which can make me come across as arrogant (as another responder also said on this thread) or accusatory. However, I actually really like debating things and really appreciate it when people of opposing views take the time to respond and share their opinion. I feel like this way I get to question and analyze my own thoughts and expand my knowledge.

Relating back to the topic, I'm curious as to what others think about the idea of including the ASD spectrum as a diagnostic label but not an actual disorder requiring treatment for the cases I mentioned.

Please don't delete your thread, sunshower!

Even though two people, myself included, misinterpreted one or two sentences, that's only two people, and only a couple of sentences.

The rest of your post raises actually a clear and really valid issue that I know people here will be equipped for and interested in discoursing with you (I know WAY too little so far, so I will bow out!).

I don't know enough yet for any valid input to that discussion, but it's a good one, please don't feel you should delete it.

I can't comment on specific posts you have read here or elsewhere, where people have claimed not to have been affected by their condition or had problems as I haven't read them and don't know those people. What I can say is this:

*bullying is not a symptom (you referred to it as "bullying and other symptoms") it is an act of others against you;
*bullying can happen to anyone, irrespective of autistic status or other status;
*having AS/autism does not automatically mean you will get bullied;
*bullying, to a certain degree, is in the mind of the victim - one person may consider a minor incident as bullying whilst others would only consider more severe incidents bullying;
*even ONE incident can be legally called bullying (I can provide you link to an official website if you wish to see);
*someone with AS/autism usually has trouble recognising the motives and emotions of others so may be unable to identify bullying per se (those posts you refer to could be these individuals);
*being bullied is NOT a diagnostic criteria nor a prerequisite of having AS! Why are you so hung up on the bullying element!
*presentation of symptoms/traits varies enormously depending upon the environment the person is in, a conducive environment could make traits almost invisible or apparently no problem (those posts you refer to could also be these individuals);
*if overdiagnosis has happened, then please only speak for your own country (presuming you are in the US) as it certainly hasn't happened in mine and probably not in others either;
*even if there are a few people who don't really have AS and are just hangers on who think it's cool, they are likely only a tiny minority and your post makes it sound as if it's a widespread issue;
*even if someone doesn't display many outward signs, just because others might not see it doesn't mean that they aren't masking and going through hell inside - and this doesn't mean it's not causing them problems;
*if newly diagnosed people are amongst those you cite as being part of the problem, don't you think you should be blaming clinicians who misdiagnosed them rather than them for not having the "true problems" of AS?
*having been caused difficulties in your life from AS is a subjective point, and also dependent on many factors - including luck/chance;
*every individual with AS presents with their own unique degree of the impairments, so traits such as tone of voice and movements are entirely dependent on their own blend of the traits - stop comparing everyone to your own presentation!
*are you aware of the four subtypes of AS? If not go and research "Passive", "Stilted", "Active but Odd" and "Aloof" so there is no one presentation of AS as you seem to think there is. (you can see descriptions of the 4 subtypes here: http://www.wrongplanet.net/postt209566.html)

As you are a student, you are still on a learning path. Having AS yourself and having learned a little about psychology does not make you an expert and you clearly need to research a lot more to understand all there is to understand about AS. You make a lot of assumptions and appear to have a narrow view,

I'm fairly sure I understand the OP's assertion.

It seems to me the difficulty with any diagnosis of an ASD, whether self or third-party, is the borderline cases. People with clear and obvious life difficulties are always going to less contentious. Additionally for the self-diagnosed borderline cases, there's the additional difficulty of being able to objectively observe one's own behaviour.

A person who falls into Wing's "Stilted" category is by definition almost invisible so they're less likely to be bullied, more perhaps tolerated as someone who is merely eccentric.


I don't think that bullying is a necessary requirement for a diagnosis, though, and from what I understand it is possible to have friends, and some are lifelong. Someone with an ASD can (from an NT point of view) blunder through life oblivious of their social ineptitude and be perfectly content (That's not meant to be a derogatory remark).

While bullying is not part of the criteria, the general trend is to be bullied more frequently and more severely if you're on the spectrum. There are other risk factors for bullying (gender nonconforming, for example), so it's not that only autistic children are at risk for bullying.