Asperger's or Autistic? is there a right and wrong label?
Introduction:
This blog post may seem somewhat confusing for some people who will inevitably be visiting these pages. For the benefit of those who are not well versed on Autism and it's history I will attempt to provide a brief coverage to give background for this blog entry.
In short, the word Autism was coined as far back as 1908 (Source, probably published by a non autistic), and throughout the decades has been used to medically describe what we now know as Autistic Spectrum Disorders (or an ASD for short). By and large, the words Autism, Autistic and Autistic Spectrum Disorder are accepted way to describe people who have been diagnosed with the medical criterium of such a condition/disability/however you put it.
Conversely, the phrase Asperger's Syndrome, or just Asperger's, refers to the medical definitions outlined by Doctor Hans Asperger. Hans Asperger was a Viennese paediatrician who first defined Asperger's Disorder in the 1940's. It differs in the fact that Asperger's Disorder (later Syndrome) exhibited differing behaviours from people who were "traditionally" Autistic (Source from the American Autism Society). The differences of such will be covered during this debate over labelling.
Labels and understanding them:
The definition of the word label, on Dictionary.com, states:
For me, the basic definitions of this word indicate a great many things as to why a label can be important. Labels help put things into categories, so those things are organised correctly. If we transfer that over to an Autistic person, for example, The label "Autistic" is given as a medical diagnosis, that means we are in a group or category, and that means societal constructs can be put in place to support us throughout our life. It also means that category can be easy to find when information and research is required. Let's be honest, it would be hard searching for "Awkward behaviour no eye contact has weird interests" on google, or in a medicinal encyclopaedia.
However, labels can also bring complications to the table. In the case of Asperger's and Autism, it dilutes the front required to gain more help, support and services for effected people on the spectrum. For example, a Government or healthcare service could say "We give XYZ support to all Asperger's people", but because they only mentioned the word Asperger's legally, they automatically exclude those who are diagnosed as ASD. In more recent years, the definitions of diagnosis were updated, so that now all new diagnoses are to a set standard and naming convention. The idea behind this was to unify those with Autistic conditions to make things better for supporting them, or at least that is what I can make out myself. I will admit though, I am not one who is knowledgeable on the standards of diagnosis, and it is something i need to further research.
Labels can also be controversial on more personal levels and can lead to fragmentation within the Autistic community. Labels have, sadly, led to fall outs between fellow Autistic's and Aspies alike. It has also led to an enraging battle, over recent times, over whether there is such a thing as Autism and Asperger's supremacy, which I will get into later. That being said, for me, labels are a necessity out of systematic constructs that need to exist if we are to get the help and support we need as we go through life.
The history and controversy of Hans Asperger:
Hans Asperger, C.1940. Source "From the collection of Dr Maria Asperger-Felder". Image used under Fair use, Copyright Cambridge Press 1991.
Hans Asperger, as discussed earlier, was a paediatrician in Vienna who was conducting research into Autism and Autism related conditions. His work was conducted whilst the Nazi's occupied Austria during WW2. Originally born in 1906 in Hausbrunn, Austria-Hungary, Hans went on through education to study medicine and gained his medical degree in 1931 at the University Children's Hospital in Vienna. In 1932, he became director of the special educational section at the University Children's Clinic in Vienna. From here on in, he would conduct and build up his research. (Source)
In more recent times, more has been discovered about the man and evidence has clearly shown he had connections to the Nazi's and also being party to the murdering of children, who were under his study. Whilst this revelation did shock many in the world, I sort of wasn't surprised. With my logical history hat on, any doctor, scientist, biologist, or anything of that nature, would either be complicit to Nazi activities and hatred, or be forced to be part of it. The Nazi's ran a brutal regime of Fascism, which capitalised on fears, lies and terror. Not to mention, the millions of people who were brainwashed into going along with the movement. Obviously, this causes us a huge problem within the Autistic community, as obviously we wish not to have ties with this dark period of history.
Hans Asperger's researched was not published in English until 1991, when Uta Frith translated the 1944 paper by Asperger. At the time it came out in 1991, it was rather significant in the UK medical circles, however, at this time, Asperger's connections to the Nazis were not yet discovered. This meant he was heralded as some kind of significant researcher, which is far from the truth. A cursory search on Hans Asperger online will turn up a many article which state his work was superseded, even before it was translated. However, for us in the UK, it still held up. Besides the translated work, I would categorically believe that understanding Autism, and the varying degrees of it, were still being worked out and understood. The start of the 90's would show a boom into the research and findings into the Autistic spectrum, with works gathering apace. If the translated work had never made light to us, the number of diagnoses would be very different and for the worse.
With the internet age communications are far easier, as is research, and a combination of such were to bring things to the fore. Edith Sheffer conducted research for a book, which brought to light the disturbing truth about Asperger and his activities. As soon as word got out, that was it, the name and label Asperger, lost all it's credit in one fell swoop overnight. It left many in the community reeling, many feeling a mixture of emotions. That being said, I believe there is more to this than face value.
Aspergers or Autistic?
This part of the discussion will focus more on my own observations and thoughts on how I personally feel about the situation, rather than factual quantitative information.
Personally for me, if someone wishes to identify only as Autistic, then that is fine. If they wish to only identify as Asperger's, that is fine. If they wish to use a dual identification, like myself, that is also fine. Many people within our community seem to have opined that keeping the Asperger's label is a dangerous one, or it is one that is glorifying Hans Asperger and his Nazi activities. I have a good point to make on those claims. History is history, you will never be able to undo what has been done, but what you can do with it is learn from it. We can collectively educate people and say that Hans Asperger was not a nice fellow at all, but even though the research was born out of the darkest despicable activities, it still helped give the world more information about the Autistic spectrum and what lies within. It laid down a critical corner stone for the foundation of knowledge we have today. The translated work led to more research being conducted, which has led us to the wider medical and social understanding of Autism that we have in the present.
I keep a dual identity on this issue for two reasons. Firstly, I was officially diagnosed as Asperger's, and that will always stay with me. It is personal to me, I grew up saying I was Asperger's, explaining Asperger's to others etc. I'm comfortable using it because I just see it as a word, a label, I don't make the association with the history when I use the term either. Secondly, for the wider world, and furthering the good word of the community, I use the term Autistic, as in the present it is a widely accepted term and many people know a little bit about it from the get go. Many people I have stated that to do not like that, I can understand why, but it should all come down to the personal choice of the person themselves as to which way they refer themselves.
Aspie Supremacy
This is a good time to tackle this topic. I will admit, I only know a very rudimentary understanding of what this is about, thanks to this rationalwiki article. I have seen the term bandied about on the odd forum and in Facebook communities and it's rather disturbing for many reasons. In essence, this is the belief that Asperger's people are genetically superior to other people, it is also seen as an evolutionary progression of humans. Pardon one's "French", but what a load of Bollocks! This is basically just Nazism for some people in the Autistic community and it's very sad (and infuriating) to see. The claims of Nazi Supremacists is naturally dying out, as the bigots get drowned out by actual Autistic people who are sick of bigoted right-wing hatred.
This needs clearing up though, as some people within the Autistic community confuse medical definitions with a completely irrational theory. For example, To me, medically, I understand why I was diagnosed as Asperger's back in 1996. The way my behaviour manifested itself, was indeed on the Autistic spectrum, However, the criterium that Hans Asperger used for definition did indicate that Autistic people are more self focused and not wanting of social interaction (In mind I am writing this as it would have been interpreted in earlier years). Asperger's people, on the other hand, wanted to be out going, be communicative with others and generally wished to be socially involved with others. This rings true, especially from my personal experience as a child and teenager growing up. I wanted to be social, I wanted to be friends with people, but my social skills were not at the same cognitive level as a neurotypical person. On this account alone, I say I'm Asperger's not autistic, by definition. If I compare that to one of my cousins, who is also on the spectrum, He doesn't want social interaction, he doesn't want to speak to you, you ask him a question or give him a greeting he will just make a noise and carry on stimming. That is what I would say is Autistic.
Now some of you will read that and potentially see it as me saying "I'm better than an Autistic", which I have been accused of in the past, and that simply isn't true. I'm saying, that by diagnosis criteria (even if it is not current definitions), I am Asperger's because the way my Autistic behaviours and impairments manifest themselves. I am on the Autistic spectrum, that is true, but I am different from people who are just diagnosed as Autistic in many respects, and this is where the toxicity of labels really rears it's head.
In summary:
Ultimately, I think the Asperger's Label should stay. It is, after all, a personal choice whether or not one uses it. Whilst there is a dark evil history associated with the label, it should not detract from the fact that we can still use this tag and comfortably educate others whom we cross paths. We should be using it to a positive advantage, education. We are negative, in many respects, as people, but we should not always dwell on the negatives of history, if we can turn that into a positive. Hans Asperger was a Nazi, He was complicit in the murder of many children. That is incredibly sad and heart breaking. However, we should use this information to help educate others the evil of Fascism, but also teach them that Autism is not an evil nor negative thing, despite the connection it has with Hans Asperger.
People also have the choice of when to use a label. If you use the Asperger's label to waft in people's faces that you are somehow superior to others, or the rest of humankind, then you deserve the criticism you receive. However, if like me, you use it because it's what you remember so easily and have used all your life, or you use it to educate others on how something evil can be avoided again, you should be encouraged to continue. Giving a positive contribution to the Autistic community is very important, as well as an individuals right to go with the label they wish.
Concluding statement:
I think many who read this will find it an uncomfortable topic, which I truly understand, but talking about issues is better than holding it in. It allows us to gain different avenues of information and opinion, which is a healthy thing to delve into. I found it hard to write, for many reasons, but I do hope I have done the best I can to deliver this in a suitable manner.
Below are links to further reading on this topic as a whole, you may find some of the links useful. They won't all be definitive, but can provide nuggets of information which paint a bigger picture.
Further Reading:
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