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Autism vs Asperger Syndrome

Diagnostic Changes for Autism Spectrum Disorders

Currently Asperger Syndrome (AS) is one of a group of conditions that are grouped into the category Autism Spectrum Disorders (ASD).

The American Psychiatric Association plans to merge “Asperger’s Disorder” into “Autism Spectrum Disorder” [1] in version 5 of their Diagnostic and Statistical Manual (DSM). Apparently a primary reason for the change is the difficulty in assessing people into the various categories (AS, Autism, and PDD-NOS) and some variation in diagnosis between regions.

Professor Simon Baron-Cohen (a leading researcher on Autism and Asperger Syndrome) wrote an insightful article about this for the New York Times [2]. He suggests that while genetic research about the causes of Autism Spectrum Disorders (ASDs) is in progress there should be no change. If it turns out that AS and Autism have the same genetic cause then that would be good evidence to combine them into a single diagnostic category. If however they turn out to have different genetic causes then they would need different categories and he suggests that changes should be delayed until this issue is resolved. Simon also raises the issue of the status of people who have already been diagnosed, this is one of the social issues relating to a change in diagnostic criteria.

Social Issues related to Diagnosis

Unlike some disorders listed in the DSM, many (possibly most) people with AS really care about such things. I think that a common reaction to being diagnosed with Aspergers is to make the study of ASDs a “Special Interest“, which therefore makes it impossible to ignore what the psychologists are doing in this regard.

The biggest problem with changing the diagnostic criteria in this regard is that AS has a good reputation. Some people even think that it’s generally a good thing and seem to imagine that every child who is diagnosed with it will end up working for Google! This means that parents will be less likely to reject a diagnosis and therefore will be more likely to try and create a good environment for their child and seek appropriate therapies (such as social skills training and occupational therapy). I expect that a child who is diagnosed as Autistic but who doesn’t obviously conform to the worst stereotypes will likely have their parents reject the diagnosis which will lead to a bad result for everyone concerned.

The contrary view in this issue is that people who are on the spectrum but who insist that they aren’t Autistic are prejudiced and they should embrace the Autism Spectrum label as a measure of solidarity [3], while that’s a reasonable point it’s not going to happen in the short term.

Also there is the issue of adult diagnosis of AS, there are lots of adults who could benefit from being diagnosed and obstacles to such diagnosis (such as associating it with a label that is not well accepted such as Autism) are not going to do any good for anyone.

Is Asperger Syndrome really that similar to Autism?

Roy Richard Grinker (Professor of Anthropology) wrote a positive article for the New York Times about the diagnostic changes [4]. He seems to think that because in some cases it is difficult to distinguish the difference between Autism and AS they should be in a single diagnostic criteria. Based on that logic you could say that no-one should be diagnosed with an ASD because there is never a clear dividing line between the Neuro-Typical and those who are on the spectrum! Some people are clearly on the spectrum, some clearly aren’t, and some are near the border.

Roy cites his daughter and Temple Grandin as examples of Autistic people who have greater ability to relate to animals than someone who is Neuro-Typical (NT). I don’t have any particular skills in terms of relating to animals. Animals have smaller brains than humans and have thoughts that are less complex and more related to short-term issues, this makes them easier to predict in some situations. I do have significantly better skills in figuring out how to operate machines than most NTs, and this doesn’t appear to be uncommon among Aspies. I’ve read some of the material that Temple Grandin has written and watched the video of her TED talk, and I get a strong impression that she isn’t like me. Even the Aspies who are the least successful in terms of their career (IE quite unlike Temple Grandin) often seem to be like me, I can understand the way they think and recognise that the problems they face are similar to mine but merely more severe.

It seems to me that there are significant personality differences between people who have an affinity for animals and those who have an affinity for machines, maths, and engineering.

I wouldn’t be surprised if it was discovered that Autism and AS had different genetic causes, and this might mean that someone could have both sets of genes. It is obvious that the dividing line between Autism and AS is not that clear. It also seems that part of the diagnosis as implemented by psychologists may be based on the ability to act like an NT and succeed by objective criteria – IE earn a good salary in the case of adults. One thing that Roy does get right is that he notes that among people diagnosed with AS and Autism there are both “high” and “low” functioning individuals.

One thing that Roy gets wrong is the implication that Autistic people can become Aspies. An adult who is assessed without background information on their childhood may get a different diagnosis. If someone was reassessed as an adult with the full facts about their childhood available then (barring DSM changes) the same diagnosis should be returned.

Conclusion

It appears that this DSM change is going through regardless of the opinion of the people who are affected. While there is a logical basis for giving more weight to researchers than to the research subjects (who are bound to be more biased) it seems that there are some things you can’t properly understand unless you live them. When a good portion of the research subjects feel compelled to share their experiences with anyone who will listen it is disappointing that so few of the researchers appear to be listening.

18 comments to Autism vs Asperger Syndrome

  • John Walker

    “An anthropologist on Mars” by Oliver Sacks is an interview with Temple. It is worth reading.(I expect Russel has)
    As far as I know there is no definitive test for the syndrome, No? It seems likely to be many ways of producing a similar visible behaviour result in something as complex and non linear as the brain.

    The first essential step before any sort of symbolic system message can be decoded is recognising that ‘it’ is a message and not simply an object.
    My reading of what she says about her experience is that for her recognising and decoding a class of human body messages; As messages , is not for her instinctive .

  • John Walker

    People who confuse strings of characters like for example a ” plate of food” with an actual, plate of food, are a lot more common than Asperger and can cause a lot of harm to both themselves and sometimes other people. People who find messages/ sets of instructions ,in things that are just strings of random events have over the years caused a lot of problems.
    We provably should make a new syndrome for these dangerous delusional states.

  • Ivan

    “It appears that this DSM change is going through regardless of the opinion of the people who are affected.”

    Unless you have a medical degree and have spent years studying the issues involved, your opinion is worthless in the matter.

  • etbe

    http://etbe.coker.com.au/2008/09/13/not-all-opinions-are-equal/

    Ivan: Simon Baron-Cohen seems to disagree with you on this matter. Do you happen to have a medical degree? You might want to read my blog post at the above URL about the weight assigned to random unidentified commentators.

  • etbe

    Ivan: Where are you on the Autism spectrum?

  • John Walker

    Russel is there any concrete evidence that Autism and Asperger have a common cause? A common origin?, if not then there is no basis for them being in the same clade.

    There is a whiff of authoritarian about “should embrace Autism Spectrum label as a measure of solidarity”. Questions of definitions can easily become questions of power

  • vk3jed

    I haven’t given the issue too much thought up until now. I’ll leave it to the researchers to determine if there any real biological difference between Autism and Aspergers, which may or may not be discovered some day. As for the difference the label makes. To me, probably not a lot, to others, maybe.

    I’d need to see some more concrete arguments. Also, Aspergers individuals are so diverse that they need to be individually characterised, with both innate abilities/challenges and personality issues adding to the mix. I for one find that while I am definitely Aspergers (and had a formal diagnosis a long time ago), I don’t always fit well into the traditional assumptions – I do like and handle change well, I get bored with the routine, and I have additional issues in key areas that others don’t.

  • osg

    I absolutely believe there is a difference, as do all the therapists/special ed workers involved with my children and other kids they see regularly. The gifted-AS are again different to the non-gifted AS kids. Social skills groups for younger kids can be really good, however in my experience (and that of other parents I know with AS kids), social skills groups designed for children with autism (HFA) need to be modified for kids with AS. And again, the gifted-AS kids need a completely different approach.

    The problem, in my experience, is coming up against the ‘professionals’ who refuse to believe the AS (particularly the gifted-AS) is not the same thing as HFA. My son is gifted-AS and we see wonderful professionals specialising in these kids. They agree without a doubt that AS kids they know are different to the HFA kids they know. They see these kids more than your average psychologist or psychiatrist, who tend to only see the children for short sessions in their clinics. The specialists I know observe the children at home, school and so on– this is very important as children (like mine) respond differently depending on the environment.

    Unfortunately the ‘experts’ I’ve come across think the special ed folk (who work much morse closely with the children on a regular basis) are mistaken when they say that AS-specific social skills groups should be a little different than social skills designed for children with autism. My son, and the other kids like him that I know, absolutely require a different approach than those commonly used in social skills group autism– this is speaking from firsthand experience of myself and my son’s special ed teachers.

  • John Walker

    Aspergers Syndrome doesn’t sound like a scientific classification. More like a convenience/necessity deriving from the nature of ‘medicine’ as a profession.

    It is only a intuition but it sounds like the ‘syndrome’ is somehow connected to the nature of the complex systems of representations of (representation) that is human culture.
    For all of us some forms of these complex systems of codes and the sets of actions that that piece of code encodes for, are instinctively understood.. and other forms are opaque .

  • etbe

    John: There is ongoing research into the genetic causes. The issue of whether there is a common cause may be determined in a few years. It will cause a lot of annoyance to many people and embarrassment to the people involved in the DSM if it is proven that there are different causes.

    vk3jed: Aspies seem to tend towards extremes in many areas, so there is a lot of variation. The degree to which the Aspie disadvantages are present in any individual can vary a lot, some of them can be small enough to be reduced to NT levels with practice.

    John: I’m totally cool with the idea of convenience diagnostic groups, just as long as they don’t mess with people. The current AS/Autism/PDD-NOS all being considered parts of the “Autism Spectrum” seems reasonable to me. Even if the three were discovered to have no genetics in common it still seems reasonable to group them due to similarities in symptoms.

  • John Walker

    Because the brain is a very plastic, very recursive very non linear ,sort of’ thing’, I sort of doubt that such a complex array of individual behaviors as the spectrum seems to cover, could be reduced to a few clear causes let alone one cause.
    It also seems obvious that it is possible that it is one of those traits that (if not full expressed) can confer advantages, thus the likely ’cause’ is the systems that control of rates of expression of ‘ a trait’ rather than the ‘trait’ itself.

  • vk3jed

    etbe: So true about Aspies coming in extremes, tell me about it! Problem is my combination seems to be a relatively uncommon and largely forgotten one. :/

    And I agree with your views on “convenience” diagnostic groups as well. Often conditions with similar symptoms are grouped, but then the separate causes are explained further down the page. It’s just that in this instance, we don’t know the causes. I did see an interesting story (on Catalyst I think) that suggested people with AS and autism have different walking gaits and other physical differences. It will be interesting to see what the genetic research turns up, as long as it’s used responsibly, and not for something like eugenics.

    John Walker: Yes, I can see that AS does offer some advantages in the right setting, have experienced that first hand.

    etbe: Can you put the submit button _below_ the human test? The current position messes with my sense of logic! :D

  • John Walker

    “AS and autism have different walking gaits and other physical differences” Rather points to different Neurology.

    vk3jed I agree about the submit button, But at least You don’t have to start all over again on this blog- unlike some other blogs

  • vk3jed

    John Walker: That was my thoughts as well, when I saw that show. Different gaits pointed to different neurology for me as well.

  • John Walker

    Kate Blanchet is a very good actress , what she dos is; move like the person/mind she is portraying

  • Letsgetitrightpeople

    Aspergers is not autism. Not even close. While they share traits, there is a clear difference between aspergers and autism. The two should never, ever be considered the same spectrum. What is interesting, however, is that many parents of severe to moderately autistic children are high functioning aspergers. A good example is the mom on youtube who posts videos (I think under kgaccount channel) of her severely autistic child. She’s shows traits of aspergers, but is obviously extremely high functioning and like those like her, has learned to adapt. Only those closest to such individuals would know how they really are apart from their unique ability to fit it when they need to.

  • etbe

    vk3jed: Can you cite a good reference for the difference in walking gait?

    Letsgetitrightpeople: Unfortunately the experts have decreed that AS and Autism are so close that they can’t really determine the difference.

    One thing that has recently occurred to me is that by diagnosing us as being on the Autism Spectrum the psychologists are declaring that we think differently to them, to then claim that they can understand us well enough to declare that Aspies aren’t different to Auties in spite of the wide disagreement from both groups seems like an epic failure.

    It seems to me that to some extent the difference in diagnosis between AS and Autism is based on being clever. If you are able to think of strategies to deal with the things that you can’t manage well then that is likely to increase your chance of an AS diagnosis instead of an Autism diagnosis.

    I’m not aware of any good research into ASDs and genealogy. In theory it shouldn’t be too difficult to find some part of the world with a small isolated population that has good records (such as Iceland) and analyse the ASD diagnosis for the population. As part of that process people who are related to many people on the spectrum could be offered a free assessment.

    I expect that Autism and AS will be found to have some genetic differences. This may not rule out links between them. But I expect that it will be discovered that in most cases an Autistic parent will be much more likely to have an Autistic child than an Aspie child (and vice-versa).

    vk3jed: I don’t think that I can change the button position at this time. I agree that your suggestion is a good one though.

  • vk3jed

    @etbe – re gait, it was on an episode of Catalyst a few years ago, if I recall, so the best I can offer is sniff around the ABC.

    I agree that studies into ASDs and genealogy would be relatively easy to conduct and useful. A lot of families seem to have clusters of ASDs, often undiagnosed in some relatives.

    And no probs on the button, I will have to try and remember. :D