I identify and refer to myself as autistic. I also identify myself by the diagnosis of Asperger Syndrome I received when I was very young.
Sometimes I realise I do it, sometimes I don't. But both of these ways to refer to me within the context of my identity are correct.
Asperger Syndrome is a lifelong condition that, like autism, means we see the world differently to our neurotypical friends, family and peers and so we can have quite different experiences and perspectives.
It has been categorised by some as "high functioning autism" or "autism-lite" because, from a medical perspective, those of us who have been diagnosed with Asperger Syndrome may display a high level of vocabulary and formal speech patterns, develop a deep knowledge and expertise on niche topics or subjects, no delay in things like language or cognitive development, though may find certain things around social interactions difficult like reading social cues and recognising feelings in others, similar to autistic people.
So from this perspective, it should be a little clearer as to why there are some who have categorised it as such, albeit unfairly because it takes away from the fact that we will still have different support needs so that obstacles can be removed for us to be at our best.
Recently, the entrepreneur Elon Musk announced his diagnosis of Asperger Syndrome when he hosted the US comedy sketch show Saturday Night Live in May 2021. He used it in the context of making a light-hearted joke and also to give some insight as to his behaviour (which has often, quite rightly, been subject to criticism) and eccentricity, but aside from the joke it also gives some insight into his vision and ambitions and how he wants to leave his mark on the world (and beyond!).
I was interested when I heard this because the diagnosis of Asperger Syndrome has been falling out of favour for some time now in favour of a diagnosis of autism and, as a result, the term hasn't been as present in today's lexicon.
But why has the term fallen out of favour? Here are a few of my thoughts:
Is Asperger Syndrome still a formal diagnosis?
Yes, and no.
When making a diagnosis such as this, clinicians will use a diagnostic tool to help establish if a person is autistic or not. A lot of the tools used by clinicians in this area are used against a set of criteria found in diagnostic manuals such as the International Classification of Diseases ("ICD") and the Diagnostic and Statistical Manual of Mental Disorders ("DSM").
The 10th edition of the ICD (called the "ICD-10") is widely used in the UK and it lists Asperger Syndrome as a formal diagnosis (see here).
It is believed that when the revised 11th edition rolls around in January 2022, the term Asperger Syndrome will be absorbed into the clinical definition of autism generally, which will bring the ICD more in line with the DSM used in the US.
In the US, the term isn't used anymore because the 5th edition of the DSM (called the "DSM-5") has folded the diagnosis under autism. This means that technically those who received a diagnosis of Asperger Syndrome whilst it was still a formal diagnosis can, if they choose, consider themselves autistic.
Importantly, someone who received a diagnosis of Asperger Syndrome won't lose their diagnosis because of the updates to the manuals. So even though the term will become outdated very soon, some still use the diagnosis to identify themselves to this day, which is perfectly fine as they would have received that diagnosis when it was still formally used.
This is completely fine and if it works for them, it works for them. Though they are not incorrect if they choose to identify as autistic instead; this shows an evolution of the language over time as well as our own evolution of our thinking and understanding with the ever-changing cultural landscape.
The problematic history of the namesake
Prof Hans Asperger was an Austrian paediatrician and medical theorist during the time of the Nazis and was actively involved in the regime's euthanasia programme. It was reported that, whilst he was not a member of the Nazi Party, he willingly integrated himself into the regime and was rewarded for his loyalty with career opportunities.
His involvement included collaborating in the murder of children who were at the time labelled as "genetically unfit" due to the difficulties with things like social conformity or physical/psychological conditions that were deemed "undesirable". But he protected the children he deemed intelligent.
So it is natural that those of us with the diagnosis of Asperger Syndrome want to distance ourselves from these acts of pure evil and do not feel comfortable with identifying ourselves as such.
I agree that it is an association that the autistic community is generally wise to avoid. Though none of us who have that diagnosis should feel in any way tainted by this because its not our fault that the namesake was actively involved with one of the most evil regimes in recent history. Personally, this guilt by association of not identifying ourselves according to a diagnosis we received based on a history that we ourselves have had nothing to do with is something that I don't understand. We're not responsible for the murders of hundreds of children in the 1930s and 40s. Hell, some of us weren't even born at that time! So I personally am not going to feel guilty for something that I had no hand in.
But that being said, it does me good to not invite any more problems into my life. I've got enough problems already; trust me, I ain't gonna get into any more of that!!
Explaining Asperger Syndrome can create an additional and unwanted burden
Asperger Syndrome often gets included in the wider conversation about autism, which is fair enough. Though because the word "autism" isn't there in the term, we would often find ourselves explaining it a bit more when having a conversation about autism or neurodiversity, which would add on to the preconceived idea of autism that was already difficult enough to describe and pin down for our neurotypical friends, family and colleagues.
For instance, when disclosing to people previously, during a time when I was learning more about my autistic self and how I want to refer to myself and how I wanted others to see me, I would say "I'm autistic ......... well, specifically Asperger Syndrome, but I'm on the spectrum".
So there was an additional expectation and burden on me to explain it in more detail and educate a person who may not have understood autism to begin with this new context and new knowledge, including how to identify and refer to me. This ran the risk of confusing the person even more with this new knowledge, especially if they weren't all that knowledgeable or educated as to what autism is in the first place. Basically, there was no guarantee that there was going to be any positive return on investment of my time and efforts.
Some have referred to Asperger Syndrome as "high-functioning autism" or "autism-lite" or "not really autistic because you're capable of holding a conversation and getting on with work" after my attempt to explain it a bit more. I don't like this at all because by using these terms, it diminishes, gaslights and devalidates the existent challenges that are present, including with communication and social interactions, and only focuses on the things that we appear/present to do well, essentially turning Asperger Syndrome into .......... for lack of a better term, "inspiration porn".
On a more light-hearted note, I also find I do this when I'm explaining where I'm from. I'm from West Bromwich, but not many outside of the Black Country or the West Midlands may know about the place, which will create an additional burden on me to try and explain where it is and what's unique about the town. So I find myself saying that I'm from Birmingham because its status as a big city and the main hub of the Midlands means that everyone knows where it is and maybe a little bit about it (even if its only from watching Peaky Blinders!)
Notice the similarities there? 😂
Maybe continuing to use the outdated term gives the impression that they won't be embraced by the wider autistic community?
As humans are social creatures, having a community that we can feel a part of and belong to is hugely important for us. So feeling like we don't belong as part of a particular community due to a changing cultural landscape will hit us hard.
This one is going to be subjective so I'll leave a few points here to think about
Perhaps there is a fear that there will be a disconnect with the wider autistic community by continuing to use the term Asperger Syndrome, a term that will become outdated very soon, and where the term autism appears to be the generally more favoured term used by the community.
Or even if there won't be a disconnect with the wider community, maybe by using the term autism instead of Asperger Syndrome the person may feel a part of an even bigger community and can be opened up to more people with whom they can make good relationships with.
Perhaps by choosing to retire the term Asperger Syndrome from your lexicon and moving more towards the term autism and embracing that identity, it could feel liberating and the person is free to feel more of themselves. And perhaps at that point, the person feels more empowered to disclose to their friends/family/colleagues if they so choose
Additional bullying because of the name?
I can't get away from this one, no matter how hard I try and remain positive, because unfortunately some people just get a kick out of making people feel worthless (translation: bullies).
Try saying the word "Asperger". What does it sound like?
"Ass-burger", "Ass-purger", "Ass-burner", "Ass-murder", or other derogatory terms that tend to include the word "ass", I bet.
I think its worse especially when we're young, maybe school age where we're surrounded by other immature children who will get kicks out of making someone into a target for abuse because they're different, or because there is something about them that others will latch on to that is different and that should be made into a joke.
I've been bullied because of my height, my weight, my body image, my high intelligence, my high work ethic, and in my later teenage years because I tried to start the process of coming out with my diagnosis of Asperger Syndrome. I tried to be more proud of it around people who I grew up with for 5-6 years in secondary school, even those who were known to bully others, because I thought we would have all grown up by that time and I wanted to see the better side in people (........yeah, ask me how that went!).
Its upsetting to be targeted because of who you are. So because of that, its not uncommon for people to mask who they are out of self-preservation and survival, or even in this context to try to "mask it out of existence".
I did. I'm not proud of it, but I did what I had to do to not stick out and become a target.
Perhaps its worth having a look at the 2018 movie The Predator. In that movie, Jacob Tremblay plays a young autistic boy who is bullied by school children who use and his hyper-sensitivity to sound (the school fire alarm) and call him by the name "Aspergers" as a way to attack him, and make him feel like he is worthless. I doubt this is uncommon in schools even now in 2021.
Even though the Predator character identifies the young boy as "the next stage in evolution", that line feels kinda cheap given how the war veteran characters are depicted throughout the rest of the movie regarding mental health and neurology, especially around a vet with Tourette's Syndrome. So this doesn't help watchers move away from bullying those who are different simply because of who they are.
Now let me take a moment to play Devil's Advocate here. Because there are those of us in the autistic community who take pride in the term. So would we want it to fall out of favour?
That pride comes because the term Asperger Syndrome forms part of our identity and started us off on our journey of discovery and acceptance and awareness of our autistic selves, and because it refers to our personality and cognitive style which obviously won't change due to historical revelations or a change in the evolving cultural lexicon.
The singular term autism, from a clinical diagnosis perspective, looks to become the general diagnosis given moving forward anyway. Though given the large degree of diversity in character and content in every member of the autistic community, having these "subtypes" would surely be helpful for autistic people, their families, colleagues, friends, clinicians, researchers and other relevant professionals so as to validate the different identities, personalities and cognitive styles of the different autistic people.
If the term Asperger Syndrome was the first seed that was planted in your journey of discovery, and if that was how you came into the autistic community, then it makes sense that you want to retain that and be proud of it. This is perfectly ok, same as it is perfectly ok to want to use the term autism. You shouldn't feel like you need to make a choice to use one or the other if you have your reasons to use both. I'm not going to judge anyone who uses one or the other or both as I would be satisfied as to their reasons for using one//the other/both.
When it comes to identifying ourselves, I take what the person says at face value. Because who am I to tell someone how they should identify themselves, especially when I don't know them.
It is always up to the individual as to how they want to be identified. Some who received a diagnosis of Asperger Syndrome may choose to continue to use it, or they may choose to identify as autistic. That is a personal choice and it should always be listened to, respected, and taken as gospel for that individual as they will feel validated and respected that way.
But if one person asks you to use Asperger Syndrome to identify them, that doesn't mean that's what you should use to identify everyone; it is just one personal preference which may or may not apply to the next person.
Also, at no point am I claiming to speak for every member of the autistic community and the Aspergers community either now, then or ever. What I've discussed above are based on my own perspectives and opinions which of course will vary from person to person.
As always, if you want to learn more, then do speak to or listen to other autistics. The more you speak to and learn from, the more information and knowledge you have and you'll be in a better position to understand and support the community and its members at home, at work, or in life.
Just a few little admin points:
There are a few different ways in which to write this term depending on the user's personal preferences. Other ways to write it include Asperger's, Asperger's Syndrome, Asperger's Disorder, amongst others. Also, some pronounce the word using a hard G like if you were saying the word "burger", and some pronounce the word using a soft G life if you were saying the word "merger". My personal preference is to write the term as Asperger Syndrome, and to pronounce the term with a soft G. Others may have different preferences to me.
There are those who prefer person-first language, and those who prefer identity-first language. My personal preference is identity-first language and so I have written this blog accordingly. But I'm not a fan of one of the identity-first terms called "Aspie" because, to me personally, it sounds insulting and like a word used by a bully. Though I know there are others who embrace this word as part of their identity. That just means we have different preferences, not that anyone is right or wrong. So those who want to be referred to as "Aspies" should be so, and those who don't shouldn't be so. Others may have different preferences to me.
Be safe and be well! :)
P
Credit: Cover image photo by Agence Olloweb on Unsplash