Bye bye Aspergers?

4 Nov

The recent article in the New York Times concerning the possibility of the ‘vanishing’ of Aspergers Syndrome from the next version of the DSM (due in 2012) only asks two people (Temple Grandin and Ari Ne’eman) for their opinions. Nothing wrong with that as such but I’d like to hear what the AS community at large thinks.

Temple thinks that the AS community is too large and too vocal to simply disappear but I think she’s missing the point somewhat. The point is (in my opinion) neatly encapsulated by Ari. He points out that AS isn’t disappearing, its simply formally becoming ‘part’ of autism. Something the vast majority of the autism and autistic community have always known it is. To answer Temple directly, the AS community isn’t disappearing, its just finally taking its rightful place alongside the others in the autism community.

NB: this post first erroneously stated Temple Grandin had an AS diagnosis. This is now corrected.

91 Responses to “Bye bye Aspergers?”

  1. Stephanie November 5, 2009 at 16:39 #

    Leila said: “PDD-NOS is trickier to diagnose, but it’s valid when the child doesn’t meet all DSM criteria for autism but still presents some autistic traits. I see PDD-NOS kids and compare them to my kid (diagnosed ASD) and the difference is obvious. They are more verbal and more social.”

    That is not true of all with the PDD-NOS label. My son who has the most “severe” symptoms has a PDD-NOS diagnosis, compared to his brothers with classic autism. He is less verbal and less social (after a variety of therapies) than his brothers are. PDD-NOS means, in his case, that he has a pervasive developemental disorder with autistic traits that does not align with a regular diagnosis of autism. It does not indicate social skills, verbal skills, or how pronounced those traits may be.

  2. Joseph November 5, 2009 at 17:43 #

    It is best to keep psychiatric symptoms descriptive and simple i.e. 1. What are the main symptoms in simple terms i.e. excessive fear, self-pity, resentment, dishonesty? 2. Is there altered sensitivity i.e. hypo/hypersensitivity to these thoughts/feelings? 3. Is there reduced connectivity? 4. Is there obsession-compulsion?

    Are you describing a psychiatric diagnosis there, or AoA?

    to get a feel for how inflamed the patient`s brain is and where most of the inflammation is likely to be.

    Right, because you’d be able to tell from that information. All chiropractors can, of course. Them and astrologers, and homeopaths too.

  3. daedalus2u November 5, 2009 at 17:53 #

    Larry, I think you are exactly right. People who are NT are more susceptible to “drinking the Kool-Aid” and to “groupthink”, that is to delusional world-views adopted because someone told them. The communication difficulties that people on the spectrum have provides a degree of “protection”. I talk about this in my blog post on “theory of mind vs theory of reality”.

  4. Laurentius Rex November 5, 2009 at 18:25 #

    Deadalus, interestingly enough Digby Tantum picked me up on a very similar point, when he used me for a quotation in his latest book.

    “Can the world afford autism” His latest pet thery being that the NT mind is connected to a sort of Interbrain, the minds equivalent of the Internet, by reference to SF writer Olaf Stapledon’s Hive Mind and said by contrast that the autistic brain lacking the ability to link into the “hive mind” (via body language etc etc..) is able to think independantly and see new insights.

    Not familiar with the phrase “drinking the Kool-aid” here, we don’t have Kool-aid on this side of the pond.

  5. Socrates (deceased) November 5, 2009 at 18:39 #

    Oh, I’m quite capable of resolving the DNS of the Hive mind and surfin’ the 17,000 channels of shit on my TV.

    I just don’t want to.

    It’s not a lack of connectivity, it’s repulsion.

  6. daedalus2u November 5, 2009 at 19:02 #

    The expression “drinking the Kool-Aid” relates to a US religious cult where some hundreds of followers committed suicide by drinking a drink made from powder and laced with cyanide. It was actually Flavor-Aid and not Kool-Aid, but a politician used the “Kool-Aid” expression in a book and that is the expression that stuck. Adopting the world-views of people like “birthers”, and the anti-vaxers would be appropriately described as “drinking the Kool-Aid”.

  7. Emily L. Williams November 5, 2009 at 20:02 #

    My main concern with shrinking ASC into a single category (which, scientifically, I don’t disagree with) is whether the higher-functioning of the aspies are going to be ousted from autism altogether. If they are going to paint the entire spectrum with a single brush, and Catherine Lord, one of the creators of the ADOS-G (a Gold Standard diagnostic tool which I consider to be FAR too exclusionary) is on the APA committee, then I have a bad feeling the breadth of the Spectrum may shrink.

    I agree that the terms, as far as their functionality, ARE confusing and sometimes create more problems than they’re worth. Plus, how many times have I had the conversation on forums of “Why don’t we just call Asperger’s something like HFA Type II?” But my concern is with the realistic application of the new criteria and whether the criteria will become stricter, thereby failing to identify lighter variants of the phenotypes and also thereby ignoring the difficulties these people may have and could use some help with.

    Autism doesn’t need to leave you on Disability to cause day-to-day problems.

  8. Socrates (deceased) November 5, 2009 at 20:08 #


    culled from a previous comment I made:

    The DSM V PDD committee suggested having a single spectrum from Kanner’s all the way to Broader Autistic Phenotype, and mopping up the stragglers with Autistic Spectrum Disorder – Residual Features…

    We are all autistic now.

  9. Laurentius Rex November 5, 2009 at 20:26 #

    At this point Laurentius gets onto his social model hobbyhorse.

    The point about disability for high funtioning (if I dare use that term) folks is that it is the misfit between the phenotypes characteristics and what is required in education and employment behaviourally and socially, all this call for team players and that “hive mind mentality” the failure to grasp what we don’t grasp which leads to the high unemployment, the exclusions from schools etc.

    The NAS is not up to scratch on the DSM changes yet, too busy combatting the French Faux pas at the moment.

    Anyway if the US could get out of the mentality that opposes Obama’s health reforms there might be more social model oriented welfare out there rather than diagnosis and lable driven insurance codes, which is a major part of the problem.

    If services are social model driven rather than symptom driven then the lable is not so much of the problem.

    I can see the bigger danger is not the dropping of Aspergers as a name, but the adoption of a kind of non service attracting lifestyle top notch nobel prize winners BAP for those whose manifestations are more subtle.

    I personally blame the Aspie Supremacists a great deal for this, they have not done us a lot of good in many respects with all this we are not disabled stuff. The social model needs to attract more transatlantic support because it allows one to be disabled without the stigma if you see what I mean.

  10. dr treg November 5, 2009 at 20:27 #

    “Right, because you’d be able to tell from that information. All chiropractors can, of course. Them and astrologers, and homeopaths too.”
    …. and Health Professionals with an interest in Neuroscience.
    Autism is mainly a history based rather than an examination or investigation based diagnosis at present, but maybe CSF TNF measurements may be useful in the future.
    When higher-functioning A.D. spectrum patients were interviewed the core symptoms appeared to be:
    1.Unusual perceptions.
    2.Unusual information processing.
    3.Impairment of emotional regulation.
    These are not mentioned in the D.S.M.-IV definition.
    “If you listen to the patient they will tell you the diagnosis” – Sir William Osler.

  11. David N. Brown November 5, 2009 at 21:45 #

    Dr. Treg,
    “auditory hallucinations suggest schizophrenia”
    Actually, I think the most diagnostically significant feature of schizophrenia is disordered thinking, and actions that may not make much sense even in light of their warped perceptions of reality. In situations where violence occurs, I would consider actions that show planning and deliberation (following a floor plan, conserving ammunition, etc.) to be evidence against schizophrenia, at least in the “classic” sense.

  12. Socrates (Dead) November 5, 2009 at 22:56 #


    Is there any reason for Auntie NAS not getting in a huff about the Mayor of London, Boris Johnson’s remarks about Bankers?

    “How can they pretend the world hasn’t changed? What blindness, what deafness, what Asperger’s afflicts them? The banking sector now stands in a completely different relation to the wider public.”

  13. Laurentius Rex November 5, 2009 at 23:22 #

    Hey there do your own Boris bashing, in fact I was not even aware of this comment by Boris, the French comment seems to have overshadowed it, and my impression was this morning that the NAS was being besieged to do something, apparantly they got a result (of sorts)

  14. Laurentius Rex November 5, 2009 at 23:24 #

    And I was going to add before this comment box took a life of its own, that Boris’ comment probably escaped under the Radar. Have LARM done anything about it yet? they are on the ground too.

  15. dr treg November 5, 2009 at 23:34 #

    Thats right. The characterisic symptoms described by DSM for schizophrenia are
    disorganized speech (e.g., frequent derailment or incoherence)
    grossly disorganized or catatonic behavior
    negative symptoms, i.e., affective flattening, alogia, or avolition.
    It is interesting that delusional perceptions can also occur in autism. Patients with autism may also have auditory hallucinations aswell but then their diagnosis shifts to the dual-diagnosis of autism and psychosis.
    However, it is probably just the same inflammatory process affecting dendritic spines in different parts of the brain to a lesser or more severe extent.
    I wouldnt put money on distinguishing if a patient had schizophrenia or not based on premeditated or impulsive violence.

  16. Laurentius Rex November 6, 2009 at 00:06 #

    Dr Treg you would seem to be the living embodiment of delusion and disordered thinking, in your failure to grasp what Schizophrenia either is or isn’t and what Autism is or isn’t conceptually.

    You like your pseudo scientific medical talk of dendrites and inflammation all like the beauty products sales pitch of active liposomes and what have you.

    It sounds to me like sales flim flammery.

    Schizophrenia as a concept is far from universally agreed upon, much in the same way as the characteristics of autism are debated, yet you talk as if it were a reality. To make a reality out of descriptions of appearance to admit no doubt, that smacks to me of delusion, so tell me what is abnormal about it then?

    You are a surface person you don’t look at the etymology of those words you use, and the history of how they have come to be used, or the way in which research has either depended upon or challenged them, you are no philosopher that is for sure and not much of a medic either, just another quack with a fixed idea in a sea of so many.

    Hey there I have persistant visual ‘hallucinations’ what do you make of that, I don’t think anyone knows what they are yet, could even be inflammation, but not in the dendrites, or the dardanelles or even the rhododendrons. Its called migraine aura BTW but it is wise never to mention that to a shrink, sets them off in an axonometric projection of reified stereotypy which I would not call at all holistic, if you pardon all the puns there, someone must have massaged my cranium into a flux of logorhea 🙂

    Google has found out thy bed of crimson joy.

  17. David N. Brown November 6, 2009 at 00:57 #

    Dr. Treg,
    From everything I have read, I have doubts about attributing any “premeditated” act of violence to a diagnosable schizophrenic. I am convinced that at least a small percentage of autistics have hallucinations and possible delusions akin to classic schizophrenia. I would consider this more likely when well-planned violence based on a delusion occurs.

  18. dr treg November 6, 2009 at 10:16 #

    Schizophrenia and autism are DSM diagnoses. However at stated above patients with autism seem to be saying that the core symptoms are not in the DSM diagnostic criteria.
    Both diseases are associated with
    Immune abnormalities
    Genetic abnormalities
    Reduction of dendritic spines in the frontal lobes. Schizophrenia is associated with reduction in dendritic spines in the auditory cortex.
    Predominantly negative or bad feelings – resentment, fear, self-pity and dishonesty.
    Obsessive-compulsive behaviour
    n.b. dendritic spines are reduced in migraine attacks possibly secondary to hypoxia. Perhaps this is why oxygen treatment is used for migraine attacks.
    Hope your visual spectra improve. Perhaps some oxygen during attacks to increase your dendritic spines may be useful.

  19. Stephanie November 6, 2009 at 16:47 #


    “Anyway if the US could get out of the mentality that opposes Obama’s health reforms there might be more social model oriented welfare out there rather than diagnosis and lable driven insurance codes, which is a major part of the problem.”

    How does moving towards socialized medicine increase the likelihood of the social model being used? Most of the Dems that “represent” me and my family are willing to ally themselves with Autism Speaks whenever the topic of autism comes up. I really don’t want them in control of the medical care my children receive!

    Aside from that political quibble, I would say that as long as the autism diagnosis is becoming more inclusive instead of more exclusive, then there may also be a chance that services will become more need/benefit based instead of normalcy-based. I’m still learning about what all the social model entails, so I’m not sure whether or not that’s what you’re suggesting.

  20. Joseph November 6, 2009 at 17:30 #

    Immune abnormalities
    Genetic abnormalities
    Reduction of dendritic spines in the frontal lobes.

    This is probably the case of all neurodevelopmental disorders and differences. You might as well say “autism is just like Down Syndrome.”

    Predominantly negative or bad feelings – resentment, fear, self-pity and dishonesty.

    Let’s see evidence of this. Dishonesty is associated with autism? Are you sure?

    I will speculate that chiropractic is associated with dishonesty.

  21. David N. Brown November 6, 2009 at 20:36 #

    Hope your visual spectra improve. Perhaps some oxygen during attacks to increase your dendritic spines may be useful.

    Not sure if this is meant as a comment to me. I believe, in hindsight, that I had a kind of recurring “dissociation” in my mid-teens, but it involved a sense of thought beyond my control rather than sensory hallucinations. I believe, in my own case, the problem was a result of stress and a particular experience of social rejection. After a year or two, the problems just stopped.

  22. dr treg November 6, 2009 at 22:32 #

    You are quite right – most neuro-developmental diseases are associated with an immuno-genetic dendritis.
    Certainly Downs syndrome is associated with autistic clinical features.
    Fear (anxiety), self-pity (depression) and resentment (anger/hatred) are all associated with autism.
    Perhaps some of the more open-minded bloggers may describe an association between autism and dishonesty as well as honesty. Or are all children with autism completely honest?

  23. dr treg November 6, 2009 at 23:18 #

    Here are quotes from some references which suggests that dishonesty may be associated with autism.

    “I have an autistic brother and let me tell you they can lie just like any other human. They tell their reality not necessarily the truth. They usually tell it how they see it (if they can talk). They are still human. My brother is actually facing jail time because of lieing. Of course they will most likely put him in a home but he did do some bad things and then lied about them but he is very autistic, but he can talk. I have taken care of many autisitic children over the last few years (about 15 years almost) and have known many of them to lie or say half truths.”

    “Oh, yeah, they lie. Lie like a rug. My son is 15, and is high functional austic, and lies at every opportunity. Even though he is punished very seldom, he will lie about everything from what time did he get up, did he brush his teeth, did he break something and on and on.
    In fact he lies so often that we dont know when to believe him or not. It is very frustrating but the answer is YES, the can and do lie.”

    “Humor is one thing. . But it is NOT good for our kids to learn to tell lies. Outside of that they don’t know how to get out of them, once they do lie, it becomes something they get obsessed with. Eventually no one trusts them, and when they tell the truth they can’t understand why they aren’t believed.
    Trust me, I’ve worked with enough of these kids to know.”

    However Professor Baron-Cohen notes that children with autism make very poor liars.

  24. Dedj November 7, 2009 at 00:41 #

    The issue is not whether people with autism lie (even Atwood mentions this in his guides) but whether the pattern and occurance of lying amongst people with autism is significant enough to make lying and dishonesty (in increased or decreased amounts) significant features of autism.

    Differences in motivation and skill in lying may also be interesting. Most of what I’ve seen in autism publications indicates that lying in autism is an avoidance technique, or ‘rigid’ application of the concept of dishonesty.

    This is in contrast to PaD’s where lying can be used as a deliberate but non-insightful defence of the persons own image, or typical behaviour where lying can be used to achieve humour, increased benefit, or deliberate harm to another individual.

  25. Joseph November 7, 2009 at 01:44 #

    Here are quotes from some references which suggests that dishonesty may be associated with autism.

    A couple testimonials of autistic people who have been known to (gasp) lie is your evidence of an association of dishonesty with autism?

    You’re a grade-A quack, Dr. Treg.

  26. dr treg November 7, 2009 at 08:43 #

    Here are some more anecdotes of patients with autism confessing their lying from
    Although there do not appear to be statistically significant double-blind controlled clinical trials of lying in autism it does seem that such a trial could be worthwhile to answer the question: do children with autism lie more or are more dishonest than normal children?
    “If you listen to the patient they will tell you the diagnosis” – Sir William Osler.

    You seem to be a grade-A statistician Joseph.
    “Lies, damned lies, and statistics” is part of a phrase attributed to the 19th Century British Prime Minister Benjamin Disraeli, among others, and later popularized in the United States by, among others, Mark Twain: “There are three kinds of lies: lies, damned lies, and statistics.” The statement refers to the persuasive power of numbers, the use of statistics to bolster weak arguments, and the tendency of people to disparage statistics that do not support their positions.,_damned_lies,_and_statistics

    Do you lie Joseph?

    • Sullivan November 7, 2009 at 09:06 #

      Dr. Treg,

      I seriously am trying to figure out if you add anything to the discussion. I don’t mind opposing points of view. But, in general, your statements are devoid of real content and very troll-like in nature.

      This latest round is worse than usual. You respond to the statement, “A couple testimonials of autistic people who have been known to (gasp) lie is your evidence of an association of dishonesty with autism?” with more testimonials.

      I read a lot of lies on the internet. Some I discuss here. Many involve autism parents lying. I do not make a claim that there is an association between autism parents and lying.

      I see no point in approving further comments in this discussion.

  27. Laurentius Rex November 7, 2009 at 11:10 #

    Oh Dr Teg, if I were so pathologically prone to lying I would be unable to say that you were a quack, intent on slandering a particular population for your own ends, whatever they are (similar to Harold Doherty’s no doubt) I would instead be far more polite about my opinions.

    There is some pretty flawed Socrates is a cat logic here (Socrates are you a cat?)

    Politicians lie all the time, does that make them autistic?

    So do Dr’s particularly when prescribing placebos or other ineffective treatments.

    ALL fiction writers, dramatists and story tellers lie. (and that is called culture)

    The liars paradox of course forbids you to own up to your own creativity here, otherwise we might have to accept that on occasion you can tell the truth.

    I am Santa Claus, there you see I have just told a lie, easy wasn’t it, will you add me to your evidence now?

    I do not think you know anything about the semantic and pragmatic problems in autism at all, which underlie the difficulty that autistic people have in carrying off a lie, or of using falsehood as part of normative social activity (false praise, flattery for instance) a lie to be effective has social dimensions beyond simple falsehood itself it involves a considerable degree of social understanding to be effective, simple denial of something obvious (“did you have a bath this morning” – “no”) is not a lie in the same sence at all.

    You should be into linguistics perhaps you might begin to grasp the nuances of these things.

  28. Dedj November 7, 2009 at 18:34 #

    One would have to question why someone would think double-blind trials of people lying are even possible, given that lying is a deliberate act (stating truly held false beliefs isn’t lying), and the examiner must know its a lie in order to tally it into the statistics.

    That children and teenagers lie is not under contention. That lying in children and teenagers with autism would therefore be expected is not under contention. That atypical lying in chidren and teenagers with autism is so frequent and intense as to constitute a clinical feature is under contention.

  29. Joseph November 7, 2009 at 19:22 #

    Although there do not appear to be statistically significant double-blind controlled clinical trials of lying in autism it does seem that such a trial could be worthwhile to answer the question:

    I echo what Dedj said. I can see a lot of readers wondering where the “Dr.” in “Dr. Treg” comes from in light of the above.

    Double-blind trials are appropriate when you want to evaluate treatments. If you want to determine if there are differences between autistics and non-autistics, the appropriate design is a case-control study. In a case-control study you can match groups for certain variables, like IQ, to make sure you’re not studying a separate construct (like intellectual disability) by proxy. There can be blinding in case-control studies, to control for observer bias, but this doesn’t make the case-control study a clinical trial or anything of the sort.

    An even better design (prohibitively expensive perhaps) is to do a whole population prevalence study of ASD with good case-finding, and then evaluate the autistics located by the study. This way you don’t have a whole lot of selection bias. The NHS study is an example of this.

  30. Dedj November 7, 2009 at 21:16 #

    Blinding would really only apply to the diagnosis of the subject, however, examiners sufficiently trained to extract whether a statement is a truth or a lie may be able to deduce diagnosis during the interview.

    One would have to find a way to account for this. In addition, using observation only to determine lying may also be problamatic, as some of the sign of lying (atypical eye-contact, fidgiting, playing with hands, stuttering and stammering, overly-asserting the story, changing the story etc) are also indicators of autism in some people (eye-contact, atypical body language, proprioceptive function and sensory issues, ‘odd’ prosody, verbal memory issues, echo/palilalia)

    Institutionalisation is certainly a big factor to account for, if it can be accounted for at all. Someone who has learnt, for example, that saying ‘no’ to a request earns them some form of negative sanction (or that the person goes away) may be motivated to say ‘yes’ to a quesion even when the true answer is otherwise. A simplistic example I know, but hopefully you’ll have got the point.

    Rigid application of social schema will have to be accounted for as well. One of the examples Atwood gives is of a boy who learnt to lie. Whereas typical children use lies to see what reaction they get, to avoid punishment, for malice, or for shits and giggles, this boy lied because he thought it was what he should have been doing because everyone else appeared to be doing it.

    It’s interesting that we’ve somehow been directed to talk about ‘children with autism’, rather than the entire age-spectrum.

  31. Joseph November 7, 2009 at 21:37 #

    Right; that sort of assessment is probably very difficult to blind.

    BTW, there are a couple case-control studies on this. Oswald and Ollendick (1989) reported “impaired capacity” for deception. This was replicated by Baron-Cohen (1992).

  32. Laurentius Rex November 7, 2009 at 21:40 #

    Really research into the lying question would be nugatory, I doubt if anyone would wish to waste there time with a serious study of this, we are all being led astray by what is effectively a “blood libel”

    I doubt if Dr Treg whatever his qualifications and background are could hack it as a serious researcher, and I really doubt if anyone would fund it being as the whole premise is so flawed.

    It takes more than googling a few abstracts to put together a research proposal, one needs to be able to argue it coherently and come up with a tentative methodology at least.

    So when you come to a fork in the road where on path leads to the village of the liars and the other leads to the village of truth tellers, and you meet a stranger how can you find which village he has come from by asking only one question?

  33. Dedj November 7, 2009 at 22:00 #

    Frith (1992) appears to substantiate the concept of impaired capacity for deception further, as does Tidswell et al, (1991), Hughes and Russell (1993) and Solomonica-Levi et al (1996).

    Although it must be noted that impaired capacity does not mean reduced intent, these studies and others appear to indicate that people with autism have reduced capacities to understand when another is using deception, reduced skill in using deception, and indicate that the concept that deception can exist is more difficult for people with autism to grasp intellectually and intuitively.

  34. Dwight F November 9, 2009 at 01:09 #

    Re: Hallucinations

    I was under the impression that the sensory anomolies that have been associated with autism are hypersensitivity, along with hyposensitivity, and synaesthesia rather than standard hallucinations. So they typically are experiencing real sensations on a different scale or via a different sensory association rather than perception of non-existant phenomena delusional perceptions (or does synaesthesia count as the later even when the fact that you are tasting sound is understood?).

    On trying to test for lies, yeah I have a hell of a time even with my own son figuring out when he’s intentfully lying and when we are just screwing up our communication, talking about different things. A lot of it is based on a repetoire of assumptions, that are only going hold for him, that we’ve built up over the years. A lot of them are context rather that direct “tells” from him. Even then it’s hit and miss and the assumptions have had to change over the years.

    I will say he started lying relatively old. Although being late to talk would have some bearing on that, and relying more heavily on being downright stubborn to get what he wanted could have some bearing, too. 🙂 Logically speaking, when you don’t much care about the other person’s opinion that’s going to significantly lower your motivation for lying. It’s kind of a chicken and egg thing. If you don’t understand that [successfully] lying can change their opinion then you aren’t going to do it, thus you don’t get much practice and experience in lying.

    So there is just a whole lot of complexity to try tease anything meaningful out of, especially with limited exposure and history between the tester and the subjects.

  35. Eve February 5, 2010 at 19:44 #

    Regarding Asperger’s VS Schizoid Personality Disorder –

    While those two share a lot of similar features, I have to disagree when it comes to them being the same or Asperger’s being a personality disorder rather than a developmental disorder.

    Here is why – Schizoids and Apserger’s both share a certain disregard for social norms, but people with Asperger’s don’t realise that what they’re doing is odd or wrong, while schizoids just generally don’t care. Also, people with Asperger’s tend to be withdrawn and/or content to be by themselves, but they are generally curious about others and do want to make friends. For some, the inability to do so causes considerable anxiety. Schizoids usually don’t see people by choice, not because they don’t know how to approach them.

    As far as Asperger’s disappearing as a diagnosis and being blended with autism, I can’t see much of a problem with that. It has already been established that Asperger’s was part of the Autism spectrum, and quite similar to High-functioning Autism, only without cognitive or language development delays. We could say that people with Asperger’s have High-functioning Autism of the Asperger type or something like that.


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