The news that Hans Asperger, after whom Asperger syndrome was named, was an active participant in the Nazi regime will come as a shock to everyone in the autism community - but it is especially shocking to someone like me. I was diagnosed with Asperger syndrome in 2009, and to discover that a fundamental part of my identity is named after a man who sent children off to euthanasia camps because they were “a burden to their mother” is not something I will come to terms with in just a day.
It’s important to remember, however, that ‘Asperger syndrome’, the term coined by Lorna Wing back in the 1980s, has since taken on its own meaning. For so many autistic adults, including myself, ‘Asperger syndrome’ was the first label we had when we got our diagnosis – the first name we had for the many years of challenges, of frustrations, of not fitting in and not knowing why. Coming to terms with oneself as an autistic person in a neurotypical world is a very personal journey, and we all have our ways to explain and describe this experience. Personally, I had long decided that ‘Asperger syndrome’ wasn’t how I felt comfortable describing myself anyway, and instead I describe myself with the more general and less restrictive (for me) term ‘autistic’. However, for those that use the term ‘Asperger syndrome’ as a fundamental part of their identity, then this is a name for them – not for Hans Asperger, or anyone else, and it is not for anyone to stop them.
What worries me most from this sad story is that, while I would not claim for a second that anyone today would endorse the evil actions of Hans Asperger, we still see some of Asperger’s attitudes – that some autistic people are useful, and autistic people are burdensome – in so much discourse about autism today. Evidence suggests that Hans Asperger created a contrast between the autistic people he researched – the so-called ‘little professors’, who he said could make excellent workers or soldiers under the Nazi regime, and those whom he deemed not ‘worthy to live’, and sent off to camps, including – most terrifyingly – a girl as young as three. Thanks to many years of autistic people and the National Autistic Society fighting for better understanding of autism as we experience it ourselves, we now understand that autism is resolutely a spectrum condition, with every autistic person having different challenges and different things at which they excel; so to talk about people purely as ‘low-functioning’ or ‘high-functioning’ is unhelpful at understanding the complexity of autistic people’s lives (although of course some people will face more challenges than others). And yet we continue to use terms like this, all the time.
“Our responsibility is to learn from this history, and to ensure that today, we ensure we treat all autistic people with the respect and value we deserve – and not to let ourselves be divided.”
In the autistic community, we will often talk about a minority (and it is a minority) of parents of autistic people who dismiss the experiences of so-called ‘high-functioning’ autistic people, saying that they do not experience ‘true autism’, and that only those autistic people with learning disabilities – and their parents – understand the real challenges of autism. Attitudes like this are deeply harmful, for two reasons. Firstly, they erase the very real challenges that people like me have faced. Yes, I have a job, and a university degree, and I am very aware of those privileges, but I am no less autistic because of this, and the challenges that have come with being autistic – in friendships, with my family, in the workplace and in school – are very real indeed. Secondly, however, it also ignores the huge value of so-called ‘low-functioning’ autistic people, as they are. In the 21 Century, we need to say loudly and clearly, that although the challenges for such autistic people and their families can be vast and often overwhelming, autistic people are valuable, worthwhile, and important – and their achievements are worth celebrating, even if those achievements may seem small to the rest of us, like learning to make your own breakfast, or choosing your own outfit for the day.
However, it isn’t just these ‘autism warrior parents’ who can be the problem. Some people who identify as having Asperger syndrome also perpetuate these same principles of ‘us vs them’ – saying ‘I am not like those autistic people’. Attitudes like this make it so much harder for autistic people, and our families and friends, to achieve our common goals – of respect, equality, and self-determination for all of us. Recent revelations about Hans Asperger teach us yet more terrifying things from a very terrifying period of our history – when disabled people, along with so many other marginalised people, were so horrendously mistreated, attacked and killed. Our responsibility is to learn from this history, and to ensure that today, we ensure we treat all autistic people with the respect and value we deserve – and not to let ourselves be divided.