I am autistic – and after the news about Hans Asperger, I think it’s time the condition was renamed

These were the actions of a man who we did not know – Asperger’s was discovered and named by and after him, but that does not mean we are defined by him 

Ryan Hendry
Thursday 19 April 2018 15:23 BST
Autism affects more than 1 in 100 people
Autism affects more than 1 in 100 people

News has emerged about the sordid details of the work carried out by Hans Asperger, the eminent doctor, who is reported to have sent disabled children to their death under Nazi rule. A new study claims that Asperger actively recommended that children should be sent to their deaths at Spiegelgrund, where the Nazis enacted a policy they referred to as euthanasia. This policy saw hundreds of children killed.

I have been diagnosed with Asperger Syndrome, the condition that this man gave his name to. As I’m sure you can imagine, this story has had a big effect on me.

Personally, I’ve always just said I’m Autistic – I’ve found it easier and more accurate. I just don’t like the word “aspie” for some reason. I’m not sure why. But anyway. Up to today, I always viewed Hans Asperger as an Oskar Schindler type figure. But I knew there had been whispers and allusions to Asperger’s true nature, and I made a conscious choice to try and pretend I didn’t know. I did this to try and protect the picture I had built up in my own head.

So this new research has really unsettled me. The idea that the condition I have been diagnosed with bears the name of the individual who would have sent people like me to their deaths is something I feel extremely upset about.

And I know it’s not just me who feels this way. For anyone who does have the diagnosis of Asperger’s, the news must be difficult to deal with. I think it will take some time for me and others to process it. But I’d rather have the truth – as uncomfortable and difficult as it is – than a lie.

What I am happy to have witnessed though, is that the reaction to this news from the Autistic community has been one of support. Lots of kind words and assurances from one autistic person to another have been passed around, which is heartening to see.

I think there will be a lot of difficult conversations and discussions surrounding the use of the word “Asperger” in the days and weeks to come. But, while difficult, I think these conversations need to be had. Personally, I think it’s time for the diagnosis to be removed. We should replace Asperger Syndrome with Autism. The Diagnostic and Statistical Manual used for the diagnosis of the condition has effectively already done this.

But that may take some time – we cannot undo a name overnight. So I think it’s important for those who have been diagnosed to remember that just because your diagnosis says Asperger’s, it does not in any way, shape or form make you responsible for a doctor’s actions over 70 years ago. That is not for you to deal with. Not even in the slightest. These were the actions of a man who we did not know – Asperger’s was discovered and named by and after him, but that does not mean we are defined by him.

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One thing that I don’t think has been recognised from today’s story is the work of Lorna Wing and Judith Gould. They took the work of Hans Asperger and turned it into what we have today: the concept of Autism as a spectrum. Without their work, I, and many others, would never have got the support we have today. I think we need to recognise the work they have done to help revolutionise what Autism is understand as. It was their work that led to the creation of the diagnosis of Asperger Syndrome. I think their work should be remembered, and they should be recognised as the people who changed the way we think about Autism.

While today’s news will lead to changes in the future, the work of Judith and Lorna has helped pave the way to where we are today.

Ryan Hendry works for Autistic UK as a Press Officer. If you have been affected by this article or need further information, please contact the National Autistic Society

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