the name of the diagnosis

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Do you think it is important whether we call it asperger's syndrome, high functioning autism or autism level 1?
My own thinking is that it might be important for the clinicians but not for us. I was told once that only clinicians need to care about the exact name of a diagnosis. I guess it's similar to "a broken leg". A medical doctor should use the correct formal term (whatever that is).
I've noticed that many people, from the USA, I think get upset when I use the term asperger's syndrome. Is this some kinda thing in the USA? I ask as a person outside of the USA.
Some Americans talk about the fact that Hans Asperger might have done bad things and this is why the term asperger's is really bad. BUt do we know if James Parkinson was such a good guy. Some Americans seem to care too much this.

Last edited by Dandansson on 05 Dec 2021, 11:02 am, edited 1 time in total.

This is an American based website. And the terms "aspergers", and "aspie" are used here all of the time.

I know but there are other people in the USA than the Americans on this forum.
I'm not sure about this but perhaps the USA changed people's diagnosis from AS to autism level 1. Perhaps you need to use another name for formal situations. My diagnosis never changed but I don't live in the USA.

My formal diagnosis is Autism Spectrum Disorder - Severity: Level 2 for Social Communication, and Level 2 for Restrictive Repetitive Behaviour.

I notice a lot of people here refer to themselves as "Aspie" or having Aspergers. I think Aspergers presents quite differently from Autism or HFA but I'm no expert. I think it's just a term that people use regardless of their diagnosis. Personally, I don't use the term Aspie because I don't have Aspergers. I just say I'm autistic.

I think you can use whichever term you're most comfortable with.

The founder of this site, Alex Plank, was diagnosed with Asperger's Syndrome and to my understanding wanted to reach out to others "like himself" when he created the site. I would say the problem is that Asperger's Syndrome is understood to represent just a subset of people on the Autism Spectrum. As time progressed, I think there was a general pushback against using the term as it was considered exclusionary. Speaking as a layman, I would say that in general, a person diagnosed with AS is thought, in theory, capable of becoming gainfully employed and living independently whereas the broader Autism spectrum includes a great many people that can't, so saying that the site should cater to "Aspies" implies discrimination against those who can't achieve those goals. I honestly don't know how this relates to the change in diagnostic criteria in the US, but that is what I see happening on WP. My personal problem with how diagnosis is usually done is that you supposedly are given a set of symptoms and if a person exhibits enough of those symptoms then they're diagnosed as Autistic, however different combinations of symptoms etc. can result from greatly differing causes, so what makes good sense for one person on the Spectrum may be entirely worthless to somebody else on the same spectrum.

In Europe, we use ICD-10 which includes Asperger's syndrome.

In USA, they use DSM-5 which doesn't include Asperger's syndrome.

Sometimes, we in the US use the ICD-10.

Correct they refer to it as "ICD-10 Clinical Modification (ICD-10-CM)"

https://en.wikipedia.org/wiki/ICD-10#United_States

As far as I understand, ICD-11 (which doesn't include Aspergers) will replace ICD-10 in Europe in January 2022.

I was diagnosed with "Autism level 1 according to DSM-5, Aspergers according to ICD-10".

/Mats

I've heard of that story, however I don't think it's true?

https://community.autism.org.uk/f/miscellaneous-and-chat/12368/does-asperger-syndrome-still-exist-in-icd-11/126761

C urrently there is no longer a diagnosis for Asperger's. Because people with Asperger's were denied benefits designed for autistic people, and because asperger's implied "high functioning" and they were misinterpreted to have no hardship in dealing with life, it has become a diagnosis on levels.

I wouldn't have thought there were many people, American or not, who think "Asperger was a bad man, therefore I'm going to get offended if anybody refers to Aspergers Syndrome." Personally I wouldn't normally choose my words to cater for anybody who did think like that, unless they had a lot of power over me. I suppose I mildly prefer labels that don't include anybody's name, so that it's more likely that the meaning will be self-evident to the uninitiated, and because I see it as elitist to enshrine the names of individuals like that, but I wouldn't make a big thing of it. ASD, HFA, Aspergers, or whatever, it's all much the same to me.

I agree that it is definitely most important to the clinicians to have an exact term for diagnosis.

Here in the states, multiple diagnoses have been shoved together under the label Autism and at this point it almost feels like a blanket label that should be broken down. A lot of people are of a different opinion but, whether it is the label of High Functioning Autism (although once again, right now there's a wider variety of symptoms in Autism right now), Asperger's Syndrome or something else, I feel we a need more specific distinction for it.

I personally am one of the people who feels that Asperger's Syndrome was a perfectly fine diagnoses. I feel like, as a diagnosis, Aspergers Syndrome was far more than the legacy of the person it was named after. It is something that has brought many people understanding and comfort for what makes them unique

Yes, Hans Asperger might have had links to Nazi Germany but so does the soda drink company, Fanta. Heck, even the mindset the Germans had about purity in World War Two was heavily influenced by similar views from the US, where people could be deemed unfit and be given a forced sterilization so they could never have children and/or be given chemicals to 'correct; them (I won't pretend its the same level as Concentration Camps but it's still messed up). I feel like the Country just wanted another villain from the to point out publicly and decided to focus on Hans Asperger. Yet, we still celebrate holidays like Columbus Day, which is federally recognized over here. Most people none the wiser of the monstrosities he committed (far more comparable to the horrors of the Camps) and I doubt its going to be gaining too much attention any time soon, since he is seen as such a central figure to our narrative of History. Honestly, if you look hard enough, you can find an ugly link for almost anything if you look hard enough. That's Especially true in psychology and the medical field in general.

Anyway, the shorter answer to your question: I think we definitely need a distinguishing diagnosis and felt that Asperger's Syndrome was better than being added into the Autism Spectrum Label which has expanded to a point where I worry for it's usefulness. Furthermore, a common complaint I am seeing, even from proponents who want to keep the autism label is that 'High Functioning' is actually damaging to anyone seeking help, as lots of people see 'high functioning' and write us off, assuming it means 'doing well enough.' Whatever title we get, it needs to be one that doesn't immediately have people writing us off, which I feel the collective umbrella of just 'Autism' is too broad to help with at this point.

Were there levels of autism before aspergers "became" autism level 1?
If not, it's mostly just a change of terms.
As for High Functioning, it has AFAIK never* been a recognized term, and I'd wish people stopped using it.

* In the beginning it meant someone with an IQ of >70, I mean in the modern world

/Mats

As I understand it there were no "levels" of autism prior to 1994.

When Kanner discovered autism in the Fifties and early Sixties he only used the term for what is now called level three, basket case, type autistics. They expanded the diagnosis into a "spectrum" and began using "aspergers" as a diagnosis, and placed it into the spectrum, in 1994.

So you suddenly no longer had to be an extreme "classic" "Kanner type" autistic to be classified as "autistic". And the terms high and low and middle functioning began to be used colloquially, but not officially. Those, like myself, who were diagnosed then as aspergers would be similar to those then called "high functioning autistics". The only real difference would be back in your history as an infant...whether or not you learned to talk at the normal time. Speech delay would mean you were "autistic" (but colloquially 'high functioning'). No speech delay would get you the aspie label.

Then a few years ago they got rid of aspergers as a seperate thing. And began using the levels thing (1,2,3) for serverity. Which amounts to the same things as saying "low, middle, and high, functioning", but this time making it official and clinical and medical.

Geez Autism is confusing. I don't even think it should be called autism. That word was correlated with schizophrenia back in the early 20th century. The origins of the word "autism" itself was a derogatory term for those who were schizophrenic. Correct me if I'm wrong.