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Monday, December 5, 2011

Aspergers versus DSM V.

Iv'e been pondering the proposed DSM V criteria for Autism, in particular the possible eradication of Aspergers Syndrome. As it appears my young son may be Aspie, the issue holds special interest for me. The following are the ramblings of an autism amateur, and this post is really just a thinking out loud exercise. But then that's what blogs are for, so here goes nothing, or something.

 I read recently on another blog that some people with a diagnosis of Aspergers only refer to themselves as autistic because they feel Aspergers is not well understood in terms of it's disabling features and is dismissed as autism lite. Then I also read on a Facebook discussion that others with Aspergers are unhappy with AS being subsumed within the new proposed DSM V criteria because they feel those who are most profoundly affected by autism, and often intellectual disability, in no way represent their experiences as high functioning, independent adults. See one of many articles on the issue,

Despite the valid points raised on all sides of this ongoing conversation I think there may be cause for considering Aspergers as a distinct diagnosis worth retaining. Here's why.

Those charged with the responsibility for developing diagnostic criteria for the DSM are, to my knowledge, always psychiatrists. They create a category of symptoms and behaviours that can be clustered in order to provide a guideline for diagnosis. To obtain a formal diagnosis of autism is usually  quite a protracted process. There's an assessment process, usually involving several professionals. Here in WA it involves seeing a speech therapist, developmental psychologist and a paediatrician. All of whom must agree. And then of course there's the treatment or therapy, which again is often administered by a series of professionals, but primarily is overseen by a psychologist or paediatrician. In our case, because Harri does ABA, we only see psychologists.  Harri has never seen a psychiatrist.

It occurs to me that the pychiatrists tasked with drawing up the diagnostic criteria for autism probably don't provide services to autistic people very often. And that matters.  In talking to psychologists who do work with autistic people, and have therefore seen the presentation of autism all along the spectrum and how certain types of autisms present in particular ways, it's clear Aspergers is unique in terms of autism not just in name and current diagnostic criteria but also in functional presentation. Seem like a statement of the obvious? Bear with me.

If you are not familiar with the diagnostic criteria for Aspergers see this link.'s%202010/Asperger's%20Diagnosis.pdf  You'll note the distinguishing criteria is no clinically delayed development of speech. And this is also where you'll see a divergance between those who write the current DSM diagnostic criteria and those who work with autism and Aspergers as a field of speciality. And I might also add that by the DSM criteria they consider single words at 2 as not clinically significant which seems to go against the general developmental course of children developing single word use at around 1 year.  However it is not the case that normal speech development is always the primary determinant of Aspergers amongst clinicians. It seems from talking to psychologists who've been in the game for a long time that would be a gross oversimplification, as there are more indicators than language development that experienced practitioners pick up both in assessments and in day to day therapy.

Furthermore Tony Attwood amongst others argue a speech delay of clinical significance should be part of the inclusion criteria for Aspergers. And Gillberg and Gillberg (1989) actually use delayed development of language as diagnostic criteria.  Indeed Harri when he was assessed and diagnosed at age two had a significant speech delay (9-12months functioning) yet the very experienced psychologist (40 years of working with ASD) stated after 45 minutes that she thought his presentation indicated Aspergers. Although his formal dx is PDD-NOS (because of his young age), his most recent assessment 12 months after his initial diagnosis shows an uneven profile that is very much in keeping with Aspergers. (It is my understanding that formal assessment tools for Aspergers cannot be applied til at least 4 years of age) And his delayed speech? Now gone.  Although echolalia still hangs on. So it would appear many kids with Aspergers  may struggle to get going with language, but their brain clicks into gear at some point and they catch up, and then often overtake their peers. At least in terms of functional use. The pragmatics, as speech therapists refer to, not so much.

But beyond speech there are other differences. I am not a psychologist so can't speak on behalf of the professionals I have discussed this with, but there does seem to be some particular visio-spatial and executive functioning challenges that counterbalanced against intelligence and verbal skills both receptive and expressive present an uneven profile of abilities and problems that appear to be the hallmark of Aspergers. As opposed to classic autism, that may present as a more across the board developmental delay.

Some professionals such as Attwood have dedicated their professional careers to understanding this particular form of ASD. It seems Aspergers presents in quite discrete ways. And this is the crucial point.  Retaining the diagnosis may have positive implications for creating early intervention that is more tailored to the young Aspergers brain. By eradicating Aspergers Syndrome as a separate diagnostic category do we then risk the potential for developing a better understanding of it's unique neurological characteristics and the most effective treatments paths? And just as importantly the possibility of development and refinement of diagnostic tools for earlier detection than we currently have.

I assume this issue is being considered by those who are reviewing the autism criteria for DSMV. At least I hope it is. I also hope there is direct consultation with those professionals who specialise in Aspergers and thereby probably have a far better understanding of it than most psychiatrists.


  1. Interesting piece.

    One of my main concerns with the Aspergers diagnosis as it currently stands, is that it's rather too broad and imprecise, and inconsistently applied by professionals. As far as the DSM-V goes, the new criteria (captured under ASD broadly) is an improvement. But, that doesn't mean that keeping Aspergers separate and changing its criteria wouldn't be the even better option, than changing the criteria by the process of folding it into ASD more completely.

    I can see good arguments for its removal, and its continued separateness, but either way, for changes to its current criteria.

  2. Thanks for your comment a&o. Yes I certainly agree there is room for refinement in the DSM diagnostic outline. And perhaps the next step is an Aspergers assessment tool that is more broadly applied in order to obtain more consistency. BUt that task is more likely to fall to psychologists than psychiatrists. I'm not sure how much the two professions liaise.

  3. Just wanted to say this is an interesting topic. I don't have a personal opinion on this as I haven't read/researched enough to form an opinion.

    But wanted to say my son has been diagnosed with autism and I was told he hasn't got aspergers because of speech delay yet I find the asperger's books relate to him really well.

    Thanks Me for your blog - your topics are always interesting to read.

  4. Thanks Penny for your comment, as I say those who write up the criteria and those who work with AS as a specialist field have very different opinions on what the diagnostic criteria should look like. Until they get that sorted out I think abolishing the diagnosis of Aspergers all together is premature.

  5. I'm with Penny. Not sure. Haha. I've always sort of accepted that the main difference was a speech delay.

    I think making the distinction between AS and ASD may be useful. The argument I have heard made for dropping the aspie dx is that for whatever reason, many experts no longer believe language delays can predict the course or presentation of autism spectrum disorders- that some children will flip flop between an aspie or autie diagnosis depending on their age and their abilities at the time. That argument would be less relevant if there are several reasons to consider the development of a person with aspergers different than the development of a person with autism, such as executive functioning differences and... whatever else there may be. Like I said, I've always accepted that the simple absense of a language delay was THE distinction, so now I may dig further into it.

  6. Hi Sunshine, yes I had too until I talked to one of Harri's experienced therapists, then read some of Tony Attwoods work and realised there was a split between DSM criteria and those who work with ASD. I fear the new criteria for DSMV is a fait accompli now. But here's a hunch. Aspergers will be back!

  7. One thing to consider. Parents of kids with Aspergers often have to work twice as hard as they are expected to integrate in a way that our full on autistic kids are not. Unfortunately the assumption that Aspergers and PDD NOS (the Claytons diagnosis) is "just" "Autism lite" means that many of the entitlements for people with "proper" autism are denied them.
    So if the DSM IV can be read as a way that the health and education authorities cannot discriminate - then I am all for it.

    Because really, labels are for filing cabinets. As long as it gives the person the best possible opportunities to succeed in life - access to funding that supports education, therapies, technology that helps them function on an equal basis with neurotypical peers - then labels should be applied.
    And once the resources are given - forgotten. Because we are all so many variations of so many things - why be defined by it?


  8. Thanks LisaMaree, suppose what I wonder is if there is a risk for research looking into specific therapeutic interventions for Aspergers not happening if it is subsumed as simply part of the spectrum rather than a unique form of autism, which it may be.

  9. Every autistic person is unique and assessments have to be individualised regardless. Someone with high intelligence but high anxiety is not going to be able to cope with mainstream school regardless of how "high functioning" they are in the right environment. Whereas someone with more of a learning disability, who is however more able to understand social cues can do just great in mainstream with a bit of support. You can't create clusters of individuals based on DSM IV criteria and expect them to all fit into a prescribed learning format. So why bother. Each according to his (mixed) ability, each according to her need.

  10. Yes I agree a learning format is full of limitations, but I was thinking a better understanding of how different neurological presentations work in learning. For example to use the example above
    I dont think you can have individualised assessment tools, but you can have individualised intervention, tailored around an individuals strengths and challenges. I suppose I'm thinking that there may be room to improve those interventions based on a better understanding of particular neurological presentations.
    I agree you can't create clusters based on DSM !V criteria, but it seems to me that this is what DSM V is attempting to do. Clusters based on level of functioning.
    But I see your point that really in terms of treatment we need to understand and address an individual's presentation and issues on a case by case basis. I agree totally.

  11. Whoops, last sentence in first paragraph should not be there.

  12. I agree that access to services and support has been hindered by interpreting the asperger's dx as "autism lite." But if there is really a clinical distinction, then, longterm, maybe it would be beneficial to keep the distinction in labels and change perceptions of what Aspergers really is. And it worries me that social considerations would be given to a medical diagnosis- although, obviously, it happens ALL the time.

    I also agree that the autism spectrum is broad enough that perhaps 2 children with "classical autism" would have to have treatment as tailored and varied from one another as those with Aspergers vs. ASD. My son is definitely autistic. He doesn't have Aspergers. He struggles SO much with language and is about a year behind his peers. At the same time, the fact that he has been speaking a LITTLE since he began treatment has sort of made the fundamental basics of speech therapy and tactics such as learning PECS not as applicable to him. At the same time, his laid back aloofness and the fact that he is not rigid with any routines has made some parts of classroom settings easier for him than one of his more advanced classmates, a beautiful, brilliant young girl who has severe anxiety. So I do see Hammie's point here, although I probably wouldn't go so far as to say "Why bother." Who knows how knowledge of the distinction may be helpful, if there is a concrete, significant distinction.

  13. Thanks Sunshine, that's my thinking too.