Is the NAS phasing out AS?

Asperger United was renamed The Spectrum by the NAS as a result of the findings about the life and work of Hans Asperger by Herwig Czech earlier in 2018.

https://www.autism.org.uk/get-involved/media-centre/news/2018-04-19-study-on-hans-asperger.aspx

www.autism.org.uk/.../the-spectrum.aspx

Is this an indication that the NAS is (quietly?) phasing out Asperger from their website and publications?

The services that the NAS has provided for people with AS have been the point of much contention over the years. This has included criticism that the NAS focuses the majority of its efforts onto people at the more severe end of the autism spectrum or those who require residential care services whereas people with AS only get the crumbs. Therefore the NAS could take advantage of the findings of Herwig Czech as a backdoor way to abandon supporting people with AS and effectively turn the clock back to the 1980s when people with (then undiagnosed) AS would almost always fail to meet the criteria for autism.

Some people argue that AS should be phased out anyway because it is no longer included in DSM-5 but DSM-5 is American and it has been rather cynically referred to as a catalogue of billing codes for insurance companies rather than a list of medical conditions.

  • Hi Arran, 
    you're right re the DSM-5. It has come under critique from academia, as well as Neurodiversity supporters.  I have (a UK citizen), an official diagnosis of ASC: identifying AS as 'condition', not a 'disorder'. 
    Edith's Sheffer's promotion of 'Hans the evil' on the YouTube 'Google Talk' is given a populist framing.  A friend with an English degree, commented (on this video) that if had Sheffer used Schindler (as in 'Schindler's List') as a comparative point in her classroom debates, she would have not survived two minutes. 

    Herwig and Scheffer's presentations have only added more divisive debate in the AS community.  This is a concern, as a  further division of voice.  This can only benefits those who want for the medicalisation of AS and the viewpoint that AS is something that needs to be corrected.  Silberman's presentation of Han's Asperger runs counter to this.  This is a battle for popular narrative beyond interpretation of historic record. It would be all to easy to loose the valuable perspective that Han's Asperger brought.

    Sheffer's call for Asperger's Syndrome to be rename (as she suggest) 'Wing Syndrome', is an curious one.  What is the value to Autism with that?  If any renaming was call for, why not  
    Sukhareva-Asperger condition (for debate sake)? Sukhareva, was female and pre-dated Asperger. Seems more appropriate, as she was here conclusion and approach to Autism before it very similar to Asperger, as in ameliorate the areas of difficulties, and support and develop personal strengths.  


  • However, that being said, I personally would prefer a reorganisation (e.g., have AS listed as a subtype of ASD, or have it listed as an alternative name), rather than elimination. Because AS has been in existence for so long, and it took a long time for the public to gain awareness, changing the name would be confusing for people. Also, there are groups of people who have identified with AS, so taking the name away would be taking away an identity.

    At a meeting at my local AS support group (before the findings of Herwig Czech were published) it was unanimously agreed that 6A02.0 Autism spectrum disorder without disorder of intellectual development and with mild or no impairment of functional language in ICD-11 is AS in all but name. Therefore, AS technically still exists in ICD-11, unlike in DSM-5. There was even talk about incorporating 6A02.0 into the logo of the AS support group, and shortly afterwards some prototype designs were created, to show the world that we have adopted ICD-11 before almost anybody else has.

    There doesn't appear to be much evidence at the moment that the NAS intends to make much use of 6A02.0 in any of its publications or has geared up for ICD-11. Neither has the NAS (knowingly) consulted anybody on the choice of a popular or everyday name for 6A02.0 as Autism spectrum disorder without disorder of intellectual development and with mild or no impairment of functional language is a bit of a mouthful.

    This further highlights the possibility that the NAS is subtly and quietly exiting the provision of services for people with AS and similar higher-functioning ASD, regardless of what it is actually called.

  • YES, it has been phased out.

    ...May I change that for You to "Yes it IS BEING phased out"...? And if matters stay the same, look back upon this Thread in two years and it will be phased out. BUT - also as I and others say, if (Official) minds change, then they might bring the term back again. As I said, some officials do still use the term "Aspergers", yet alongside High-Functioning/Level-1 and such like. That is what I said (tried to say).

    prior to the article

    Um... I was referring to the here-and-now. Of course before 2018 there would be "no evidence" of "phasing out" the term, because they were not phasing it out so much back then. They would not be "phasing out" something BEFORE their own reasons for doing so. 

    There is another confusion for at least Myself - I might leave off after this: Is this about the "Phasing out" of the TERM "Aspergers", or is it about the STATE of "Aspergers"?

    The TERM (The word Aspergers) is currently being phased out, yet will take some time, as others here have said. But the STATE (High functioning/Level-1Autism/WhateverNext) is definitely NOT being "phased out".

    I apologise for any misunderstanding and hope You - or anyone (!) - understands what I really meant and what I mean here. Thanks...

  • My viewpoints are similar to Graham's, and I think he has explained it very well, so I don't have much more to add. My point was mainly regarding whether the amount of support will change, and I don't think it will.

    I definitely don't agree with the reason NAS changed it's magazine name because of Hans Asperger because that's just hiding history, and NAS disregarded the opinions of those who have AS. If you want more support for this view, I am one, and I'm quite sure there are lots of people who think similarly about the unjustified changed of name to Aspergers United. I have commented months ago that I felt they were biased and disregarded the opinions of those who have AS: https://community.autism.org.uk/f/adults-on-the-autistic-spectrum/13152/disgusted/79777#79777 

    But scientifically, reorganising these different diagnoses under a broader umbrella name makes sense, because in the US, UK, and the rest of the world, even before DSM-5, scientific papers often treat AS and HFA as the same group (the only difference is whether there was a delay in language acquisition).

    I don't know why you are so worked up about diagnosis manuals, in the actual clinic, experienced psychologists in both the UK and US don't strictly follow the manuals word to word, but they serve more as a guideline. And what you are saying about DSM criteria being required to publish in American journals is not true (American journals accept ICD). 

    However, that being said, I personally would prefer a reorganisation (e.g., have AS listed as a subtype of ASD, or have it listed as an alternative name), rather than elimination. Because AS has been in existence for so long, and it took a long time for the public to gain awareness, changing the name would be confusing for people. Also, there are groups of people who have identified with AS, so taking the name away would be taking away an identity.

  • Thanks for the link, Cassandro. 

    Interesting that Asperger apparently singled out those children at the higher end of the spectrum because their 'special abilities' made them potentially socially useful (as scientists, mathematicians, technologists, etc.) - in spite of their lack of gemüt, or capacity for tribal belonging.  He saw them as 'educable', and therefore capable of 'passable assimilation'.

    'Passable assimilation'.  Sounds like a term that could easily be used in describing the objectives of ABA.

  • Forgive me for asking a dumb question... but is anyone else bothered by the fact that inclusion of ASD in ICD means that it will continue to be officially classified as a 'disease'?

    Is it a disease?

    Merriam-Webster Dictionary definition of disease: 1 : a condition of the living animal or plant body or of one of its parts that impairs normal functioning and is typically manifested by distinguishing signs and symptoms.

    NAS definition of autism:  Autistic people see, hear and feel the world differently to other people. If you are autistic, you are autistic for life; autism is not an illness or disease and cannot be 'cured'.  Often people feel being autistic is a fundamental aspect of their identity.
    I came across a research paper the other day (should have kept the link) which referred to autism as a 'neurological disease.'  Either it is or it isn't.  Surely, inclusion in ICD simply adds to the misunderstanding of the condition, possibly the stigma associated with it, and perpetuates the idea that a 'cure' might be available now or in the future.
  • YES, it has been phased out

    There is no evidence that the NAS was phasing out AS from its website and publications prior to the article by Herwig Czech about the life and work of Hans Asperger being published in April 2018.

  • The original question was not about whether AS exists or does not exist in the real world. It was about whether AS exists or does not exist in the NAS.

  • I have already read Steve Silberman's Neurotribes book. I was the person who first mentioned it on this forum.

    However, the work of Herwig Czech followed by Edith Sheffer has overturned some of the work of Steve Silberman.

  • Can we ßłøøðÿ well forget about DSM-5 for the purpose of this discussion. DSM is American. ICD is what is officially used in Britain - and the free world.

  • ( Officials and Experts (Doctors, Psychiatrists, and the like) still even now use the term "Aspergers" (in 2019)  -  but they may then add "High Functioning Autism" or "Level 1 Autism" to that. Separately. Those clever people who came up with those two 'catchy' terms of "NeuroTypical" and "Allistic" (Meaning 'Not ND' and 'Not-Autistic', respectively) and 'NeuroDiverse'...need to find a new 'catchy' term to 'replace' Aspergers, is what they need to do. 

    (Note, anyone new,  that this Thread was begun 3 Months ago, and so the Main Title Question has long been answered now... I.e. - YES, it has been phased out. The fact that AS persons get less support is another discussion here. )

    I only try to Post this because I keep seeing this Thread appearing, and so please excuse me. 

    Current Austerity (Money grabbing) may well restrict some from correct diagnosis, though. It is cheaper to just ignore people and to treat everone as a Sheep, rather than pay someone to recocgnise and acknowledge a Horse amongst that entire herd. Or something... )        :-/

  • The DSM-5 states, “Individuals with a well-established DSM-IV diagnoses of autistic disorder, Asperger’s disorder or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder.”

    So, according to this, the changes from AS to ASD should not have an effect on getting support.

  • As far as we are concerned UK diagnosis goes on whatever NICE guidelines stipulate, that's how I read things, its not that AS doesn't  exist its just that its more under the umbrella of ASD as a spectrum.

  • You need to read Steve Silberman's Neurotribes book for a lot of background on the history of Autism, Aspergers and other similar mental health conditions

  • Is Hans Asperger a Nazi?

    Is Tony Attwood's book now obsolete?

  • Just to mention that the London Review of Books has reviewed Edith Sheffer's Asperger's Children.

    www.lrb.co.uk/.../unfeeling-malice

    Asperger’s Children: I've not read the book, but it makes one question 'autism' as a word as well as 'Asperger Syndrome'. One objection I've heard to 'autism' is that the etymology implies 'selfish'. I'm wondering if 'monotropism' may be a better term, although at the moment it's only a theory of autism.

  • There is a question whether the NAS is going to produce AS specific materials and services in the future or whether they are going to submerge merge it into the confusing 'haze' that is autism.

    An entire 'industry' has grown up around AS including books, videos, services, websites, experts on the subject, and support groups since the mid 1990s. Will these continue in the future or will they gradually die off? For example, will it be (realistically) possible to publish new books about AS or will they have to cover the entire spectrum of autism? What about support groups because the needs and requirements of people with AS are very different from people with traditional Kanner type autism? Could it even reach a situation in 10 years time where 99% of new products and services about ASD focus on traditional Kanner autism and do not cover AS? Would it be possible to have a career in psychology as an expert on AS or would one also have to also be an expert on all other variants of ASD?

    The reality is that AS comprises a very minor part of what the actually NAS does. I see some parallels between the regional ITV companies of old and how they produced more religious programmes than the BBC did but religious programmes was a minor activity in comparison to popular entertainment and they produced them mostly because of PSB contractual agreements. The lack of passion also resulted in religious programmes that were overwhelmingly dull and of mediocre quality. I can see the NAS wanting to phase out AS because it doesn't make much profit for them in a similar way that ITV companies wanted to phase out religious programmes because it didn't make much profit for them. The findings by Herwig Czech covered by the flimsy facade of DSM-5 provides a potential 'excuse' to do so.

    Time will tell but I expect the NAS to give vague and ambiguous replies if probed about the matter.

  • The Complete Guide to Asperger's Syndrome by Tony Attwood has an Amazon bestsellers rank of 11,775.

    https://www.amazon.co.uk/Complete-Guide-Aspergers-Syndrome/dp/1843106698/


    Asperger's Children by Edith Sheffer has an Amazon bestsellers rank of 78,846.

    https://www.amazon.co.uk/Aspergers-Children-Origins-Autism-Vienna/dp/0393609642/


    The figures could be somewhat deceptive because Tony Attwood's book has been around for 10 years whereas Edith Sheffer's book hasn't been out for one year yet.

  • At my assessment I was told that Aspergers isn't diagnosed anymore. Just ASC. I have also heard similar where I work about children being diagnosed. I don't really see a problem with it being called ASC collectively. As long as there is support available. There are many debates with the names for these things such as the high and the low functioning and other conditions that now fall under the ASC umbrella like PDA. I think the difficulty with these things is that it is not as simple as being autistic or aspergers or nt. It is a huge spectrum. My assessor thought I fit into an aspergers profile until he asked about language and realised I had had a language delay. That isn't to say aspergers doesn't exist as a condition of its own. But it is not a black and white thing to diagnose. I don't think anyone is for a second suggesting that people with Aspergers shouldn't be supported.