Asperger’s Syndrome: What’s in a name?

An image of a labyrynth with the text 'In the maze of the autism narrative it's easy to get lost' and 'Asperger Syndrome: What's in a name' overlaid over the top in white)

Amongst all the different diagnoses around Autism, Asperger’s syndrome has a relatively brief, yet hugely convoluted history. It has only been a diagnosis since 1993 and, partly due to lobbying from the Autistic community, is already in the process (at the time of writing) of being removed from the different diagnostic criteria, it has already gone from DSM-5.

In the maze of the Autism narrative, it’s easy to get lost and not understand all the things that go into making Autism such a hodgepodge of misunderstandings.

In the brief lifetime of the Asperger Syndrome diagnosis, it has been enveloped in controversy and has added to the mix of confusion about Autism, so I’m hoping this will help clear things up and explain the background a little.

The fact that you are here reading this means that the chances are you’ve arrived from one or a mix of the following:

a) You’re a parent/family member/carer of an Autistic child
b) You have an existing diagnosis of Autism/Aspergers/ASD/ASC (and on and on)
c) You suspect that you might be Autistic
d) You’re a professional working with Autistic people in some capacity

Many people, from all those groups, often only understand Autism from a cultural/societal perspective that is riddled with myths and inaccuracies and are unaware that there is this massive historical and ongoing negative narrative around Autism which has a huge negative impact on Autistic people and our families.

They are also often unaware that this narrative is often perpetuated by the very Professionals that are doing the research, diagnosing and making money out of the Autism Industry (Yes there is one and it’s worth billions).

Disclaimer one

Before I go any further I want to make it absolutely clear that your diagnostic label – whatever it may be, is yours, nobody has any right to make you feel bad about it or take it away from you.

But, it is really important that you know and understand the wider context as to what it means, why it exists and the harm it (not you) may have done.

I want you to know that the words on my diagnosis read Asperger’s Syndrome, but that name is something I no longer associate with and hopefully what I’ve written here will explain why.

Hans Asperger

A slim male in a lab coat and glasses working with children in a clinic)
Image of Hans Asperger working with children in his clinic

I want to get this part out of the way first, because then it’s done and we can concentrate on the bigger issues.

While Asperger’s Syndrome and Hans Asperger are undeniably linked, it’s important to recognise that many people connect the two in the wrong way. Understanding of which may help reframe part of the narrative.

Hans Asperger is himself an extremely controversial character. He learnt his craft in an environment led by Eugenicists and was indeed mentored by renowned Nazi Eugenicist, Franz Hamburger. Asperger plied his trade under an occupying government obsessed by racial purity in the midst of the directives of Aktion T4, which was the Nazi programme aimed at eradicating disabled people.

Much of this is guilt by association. There is an ongoing and endless debate as to whether or not Asperger was a Nazi collaborator who sent children to their deaths, or whether he was some Oskar Schindler type who saved as many as he could and, despite the many books and research papers that claim one or the other, there is very little evidence to prove either way.

However, currently what proof there is at least, does point to Asperger as a doctor who, among other things, sent at least some of his child patients to Am Spiegelgrund where they ended up as medical experiments.

Personally I find it difficult to believe, that in such a close knit medical community in Vienna, Asperger was unaware of what was happening.

When the news ‘broke’ in 2018 that new evidence had come to light that Asperger was a potential Nazi collaborator many people, particularly those with the diagnosis, recoiled in horror and shucked off the label. This allegation has been challenged by Dean Falk, who claims “It is highly unlikely Asperger knew of T4…” and now that refutation has been refuted by Herwig Czech… Honestly, this is going to go on forever. There’s no way we’ll ever know for sure unless we find some sort of signed confession from Asperger.

The biggest irony here is that it’s all utterly irrelevent. So many people are furiously worried about whether or not Asperger was a Nazi without realising that actually, beyond it being named after him, Asperger’s Syndrome has absolutely nothing to do with Hans Asperger.

Despite popular belief, Asperger’s Syndrome is not Hans Asperger’s diagnostic criteria, it was formalised after his death in 1980 and only introduced as a diagnostic label in 1992. It was based only loosely and in part of his recognition that certain children in his care presented in a certain way.

Like much of modern science, little of our understanding of anything has not been touched by Nazi endeavours.

A significant amount of our understanding of modern medicine is based on horrific experiments performed by the Nazis. Eugenics has cast a long shadow on moder Psychology and much of that was compounded by psychological thinking and research under the Nazis.

What’s done is done and can’t be changed now. Ideally nobody should be hero worshipped. Asperger, Kanner, Bettleheim, among others, were all flawed people with flawed understanding, no matter their achievements. They were human, as capable of good and bad and mistakes as any other.

The creation of Asperger’s Syndrome

An image of an elderly lady in glasses, behind a microphone, public speaking
An image of Lorna Wing, creator of the Asperger diagnosis

The Asperger’s Syndrome diagnosis was born in controversy.

In the early 1980’s Lorna Wing was a UK-based professional in the field of Autism. Lorna is famous for several things:

The Lorna Wing Centre is named after her,
The conceptualisation of the ‘Autism Spectrum’ with Uta Frith and Judith Gould, which was based on an idea taken from Hans Asperger’s work;
Asperger’s Syndrome as a diagnostic label.
A founder member of the National Autistic Society.

In that time, Lorna had identified groups of children who fit the then existing profile of Autism, but with a major difference: instead of delayed speech, persistent non-verbalism and perceived intellectual disability, these children were actually early speakers or spoke at time, were often hyper-verbal, sometimes with periods of non-verbalism and had the capacity to use language and comprehension beyond their developmental ages.

At that point Lorna Wing was unable to get these children recognised as Autistic. The professional bodies who wrote the diagnostic manuals such as the DSM and ICD (The American Psychiatric Association and the World Health Organisation respectively) refused to move from the Kanner-esque concept of Autism and widen the criteria to incorporate this profile – too many people involved in the decision making had built careers on particular models of Autism and were too invested in self-interest.

Sadly the same influences plague both diagnostic manuals to this day, added to the fact that Autistic people have no input into them at all. The diagnostic criteria are a gate keeping exercise by non-Autistic Professionals clinging onto power bases and the promotion of their theories…

Lorna Wing did the only thing she could, she came up with an entirely new diagnostic criteria.

Her criteria were influenced by the recently re-discovered work of Hans Asperger, translated into English for the first time by Uta Frith. Asperger had also identified a similar group of children amongst his cohort and had dubbed them ‘The little Professors’.

Hence why Asperger’s Syndrome is so called.

Diagnosis of Asperger’s and of Autism happens in exactly the same way, with exactly the same people involved.

Ridiculously the only clinical difference between the diagnostic criteria of Autism and the diagnostic criteria of Asperger’s Syndrome is the ability to open your mouth and form words.

To get Autism you have to have delayed speech, to get Asperger’s you speak on time or early.

That’s it.

So it doesn’t matter that if by, the age of 10, for instance, the child with the Autism diagnosis has learnt to communicate verbally and presents exactly the same way as the child with the Asperger’s diagnosis – the two have separate diagnoses.

A line is drawn between them.

An unnecessary one.

But it stuck and will have for 30 years by the time the label is officially gone; and two strikingly different paths were laid out which have ever since, caused a world of confusion, hurt and pain for many people on both sides.

The Divisions

An image of a train platform with the words 'Mind the gap' on bold, yellow capital letters

In the diagnostic criteria for Asperger’s Syndrome there is nothing about IQ and there is nothing about the diagnosed individual’s ability to ‘function’.

But that hasn’t stopped the many myths that perpetuate about the diagnosis.

The cultural and societal view of Asperger’s Syndrome is that the individual is incredibly intelligent, yet socially inept. This has been fuelled by two misunderstandings:

  1. The assumption (again because of cultural and societal views) that in order to be ‘Autism’ you should be rocking in the corner, unable to speak ever and hitting yourself in the head.
  2. A really poor understanding of co-occurring conditions, particularly Hyperlexia (which is by itself a stand-alone condition), Apraxia of Speech and Learning Disabilities.

Hyperlexia is the ability to read, comprehend and use language which is supposedly developmentally beyond your age.

Apraxia of Speech is when the brain finds it difficult to coordinate the complex physical movements needed to form words.

Neither of those two things are Autism, but both are common amongst Autistic people, no matter what your diagnosis.

This is at the root of the divisions that have been created.

Among parents and Professionals and many unwitting Autistic people there has been formed a gulf between what is perceived as Autistic people who can and Autistic people who can’t.

Disclaimer Two

I would like to reiterate again that this is a presentation of historical fact, with no judgement or ill-feeling. Nothing here is the fault of those given a diagnostic label with no context, nor the parents/families supporting them.

Parents have, over decades, been told that it’s better to ‘have Asperger’s’, that if it’s Asperger’s then they aren’t like those other children, you’re lucky it’s Asperger’s.

What they haven’t been given is the contextual knowledge that there is zero difference between one and the other, other than the ability to meet one arbitrary developmental milestone ‘on time’.

Again, this is no fault of those who have received a diagnosis of either, these are the narratives we have been handed.

The impact

An image of a tree in a field being struck by lightning.  text reads: "Even without negative intentions, negative impact still happens"

The impact on those with an Asperger’s Diagnosis

The Asperger’s label is a functioning label.

People identifying as Asperger’s usually aren’t using it as a functioning label at all, it’s just their diagnosis and that’s not their intention. But because of the situation that created the label and the language differentials that were created between Aspergers and Autism, added onto the societal and Professional assumptions around intelligence; it is one…

Even without negative intentions, negative impact still happens.

Similarly to the label ‘High Functioning’ Autism (which is not a diagnosis but is assumed to be one), with which it is often conflated with, the expectation with this diagnosis is that you should be able to function in society, that you are ‘intelligent’ (there’s that myth again), to be able to hold down jobs, relationships and live fulfilling lives.

The fallacy of the intelligence aspect has backfired on those with an Aspergers diagnosis. The assumption of high intelligence brings with it the assumption of being able to ‘cope’, as much as ‘High Functioning’ Autism does. There’s a whole world of issues with it being assumed that you’re ok because you’re assumed to be ‘smart’ and therefore able to handle everything admirably.

The evidence of course speaks otherwise and volumes: social isolation, high divorce rates, poor work history, Masking and Autistic Burnout, high rates of suicide and early death.

It’s also led to a phenomenal lack of supports for any of those areas.

What has also has driven those same lack of supports is the fact that with an Asperger’s label, generally no further co-occurring conditions are explored. People with an Aspergers label are equally capable of having Learning difficulties like Dyslexia, Dyspraxia, Dyscalculia, Irlen’s and all the other issues that can commonly face those with an Autism diagnosis. It is too often assumed that Asperger’s is all there is and it never is.

There has also been created the perception amongst those with an Asperger’s diagnosis that there is no association between Asperger’s and Autism, many don’t recognise Asperger’s as Autism, or at best as some kind of subtype; and with that also a narrative with regards to Autism that ‘we are not like you’.

This narrative has led to what has been termed ‘Aspie Supremacy’ – a perception amongst some people that Asperger’s is the next step in evolution (evolution doesn’t work like that), that ‘Aspies’ are better versions of humans, certainly better than those with an Autism diagnosis, that Aspies are superior intellects and generally superior beings.

They tend to be arrogant and actively narcissistic (not in a Type B bashing way) and outwardly, at least, project a very high opinion of themselves.

I think that deep down they also tend to actively loathe themselves and want to be ‘normal’ and are often driven to hate those that don’t feel the way they do about themselves.

Sometimes (more often than not) they are closely linked with far Right mentalities and white supremacy;

They are also often the ones that understand Autism the least and cling hard onto stereotypical ideas and the diagnostic criteria as an effective bible.

Saddest of all is that it’s more common than you might think. I prefer to term them Autzis.

***Please read to the end for more references on Aspie Supremacy, as doubt has been cast by some on the existence of this issue***

The impact on those with an Autism Diagnosis

The division has historically led those with an Autism diagnosis to be made to feel that they are lacking in intelligence and incompetent; that rather than having ‘abilities’, they have deficits and are broken in some way.

It’s perpetuated myths that Autistic people are somehow ‘less than’, have no prospects and are incapable of ever advocating for themselves, and this also meant a continuation of investment into cures, therapies and interventions, as opposed to much needed supports to help provide meaningful lives and equity.

The impact on others

All of this has had a huge negative impact on others in both the Autistic and wider Autism communities.

The association with IQ has had a huge negative impact on under-diagnosis amongst Black Autistics because of the racist and eugenicist background of IQ tests, which were ultimately created to exclude Black people from White society and to eradicate those deemed less worthy from the gene pool.

It’s created a sub-narrative that Autistic people are just ‘bright and quirky’ which has led to too high expectations from people external to families and an inability of families to advocate effectively for their loved-ones.

It’s also fed misunderstandings in education systems, who again have expectations of achievement and ‘normality’ with no understanding of what is going on underneath.

Professionals too, even amongst those diagnosing, are often confused about the many labels and what they are supposed to consist of. The amount of times I’ve witnessed people who had speech delay but have been given an Asperger’s diagnosis, is patently ridiculous. I’ve come across others who have been completely non-verbal their whole lives who have also been diagnosed Asperger’s. This is not an anecdote of two or three, I’m talking hundreds and thousands.

Social media

Screen readers: An image of a section of mobile phone screen showing various Social Media icons

Divisions between Autism and Asperger’s are nowhere more apparent than on social media. The lack of education and understanding of what effectively should be two simple terms is paramount and the responsibility for this lies with those steering the narrative…

Often it feels like it’s being done on purpose to perpetuate confusion so that money can continue to be milked from desperate people. But that’s a whole other conversation *cough*

Historically, there have been many Facebook support groups for ‘Aspies’ that have excluded those with an Autism diagnosis, often deliberately. It’s something I’ve witnessed many, many times personally. It’s something I and others have worked really hard to change, through education and discussion.

I have many friends and colleagues that will no longer go on Facebook because of the exclusion they felt. It’s one of the reasons The Autistic Cooperative, an international networking organisation for Advocates and Advocacy organisations I founded, asks that members use ‘Autistic’ in the group (what they do outside is up to them), because we have members who have been excluded, isolated and attacked and have been left traumatised by it.

Sadly though the partial dissemination of education has led an ironic sea change: Now often people who announce themselves as Asperger’s, or Aspies, get dogpiled on and even if one or two people take the time to try and gently explain, by that point the person feels so attacked and under siege for something that they often had no knowledge of, that the damage is then done, often permanently.

In recognition of the complex situation that can leave both parties excluded, The Autistic Cooperative has a number of Facebook groups affiliated with it; and those that offer peer and admin led support, while the label still exists, are welcoming to those who identify as either, with a view to gently educating members about the Asperger’s and Autism narrative and ask for respect and support from both.

Identity

An image of a head with long straight hair and a blank face. Text is positioned where the face should be and reads "A diagnosis of anything becomes a level of identity."

A diagnosis of anything becomes a level of identity.

In terms of Autism, Asperger’s, ASD, ASC, or whatever your diagnosis is, it’s a word you can attach to which explains the many experiences, feelings and notions you have had over the course of your life that have made you feel separate from everyone else.

It’s a gateway to people who think and feel like you, whose neurology functions in an absolutely relatable way to you and who you can identify with.

It’s a name for what drives you and touches every experience you have in life.

Being told that the label for your identity is wrong and causing harm when you’ve spent a long time looking for it can be soul destroying. Devastating.

Particularly when you have been given answers to something that fits you.

I have been through this exact scenario.

There are levels of grief, indignation, denial, more pain and more confusion that have to be worked through – that is a process that adds onto the already painfully long process of learning to understand yourself.

Responsibility

An image of a crack running through the ground.  Text reads: "No matter what our identities, we have a responsibility to others, especially when how we use our identity impinges on them.")

No matter what our identities, we have a responsibility to others, especially when how we use our identities impinges on them.

Undeniably Asperger’s Syndrome impinges on Autism.

Asperger’s is a diagnosis that needn’t have existed and indeed, by 2022, Aspergers will officially no longer exist as a diagnosis for newly diagnosed people anywhere in the world, as it will also be gone from the ICD. The labels will have been merged together in both the DSM and ICD diagnostic manuals. It’s already gone from the DSM.

The diagnosis appeared three decades ago and just as easily it has been removed.

This has been done partly in recognition that Asperger’s is no different to Autism and a vague step towards understanding that co-occurring conditions, among other things are often the things that cause different presentations (alongside the other aspects of life that mould us); that underneath fundamentally, Autistic Neurology is Autistic Neurology.

In spite of anything it will eventually disappear as an identity too as people age, die and time passes; and as a diagnosis as I mentioned, but while it exists, those with an Asperger’s diagnosis need to accept that while they identify as ‘Aspie’, they will face a bristling community that recognises the harm the existence of the label has done not only to those with an Autism diagnosis, but also to they themselves.

Equally though, those who are not diagnosed Asperger’s, or choose to no longer associate with that label need to recognise that for those that do have an Asperger’s diagnosis, for many it is an important and integral part of who they are and that it is not their fault if they don’t know the narrative, find it hard to shift from it, or indeed still want to cling to it because it helps them.

We are all people and we all suffer pain. Most, if not all Autistic people are traumatised and here is yet another layer of trauma to be dished out.

There are certain countries for whom (America I’m looking at you here) Asperger’s is a now defunct diagnosis. Nobody is being diagnosed with it any longer, or at least shouldn’t be unless the clinician is using an out of date manual (which does happen, because hey, why would you want to keep with the times…).

But there is a world outside of the United States that, rightly or wrongly continues to diagnose Asperger’s on a daily basis and will continue to do so for the next few years – not to mention that Professionals, even when not using a diagnostic criteria that recognises Asperger’s, still use the damaging phrase “What used to be Asperger’s”.

Conclusions

We have to understand that as a community, the word Aspergers is not going to disappear any time soon. Pretending it doesn’t exist is ridiculous.

There is a continuing stream of people and parents entering our community who do not know anything about the controversy, who do not understand the context and don’t know the terms many of us use.

They just want someone to finally give a shit about them.

You don’t have to accept that word usage, but you do need to understand that they will be protective of it. It’s their identity and you want to take it away. That’s a hard thing to reconcile with.

We have enough pain in our community without inflicting it deliberately or, if it is necessary, harshly.

Our conversations are difficult enough, our trauma is real and something we have to work through every day, often while it is still being inflicted.

We push for acceptance and that has to start with ourselves.

As I said at the beginning, the Asperger’s label is something I know longer associate with. I understand the history of it, I have seen first-hand the harm it has caused, I actively advocate against it.

But I’m privileged because I’m someone who is able to recognise patterns in history and politics and can see the connections from the conception of Asperger’s Syndrome, to its death as a diagnosis and all the ripples of pain it has caused all of us as part of the wider Autism negative narrative.

I’m also not naïve, nor out to inflict pain and am constantly of the belief that people should identify however they want.

It is however fundamental that they understand the context in the simplest form possible, in order to understand why other’s might react negatively to it. Then hopefully be able to recognise why it isn’t actually that great of an identity to begin with, if it’s causing them and others harm.

But it’s how we go about educating that which is key and, at the moment, I think current practice isn’t working and potentially is making things more divisive, not less so. People are feeling attacked and nobody learns anything under assault.

Ultimately, the merging of the labels is a positive thing as it will eventually force everyone to recognise that developmental milestones such as language are hugely subjective and a poor choice of differentiation between people who really don’t need differentiated, at least not when it comes down to their basic neurology.

It will hopefully also remove the assumptions that a vague measure of subjective intelligence is a good way of categorising anyone and instead focus attention on aspects that create the need for interventions and support: the co-occurring conditions.

Underpinning all this is a massive lack of understanding of co-occurring conditions, particularly Learning Disabilities, which are often lumped under the Autism umbrella when they are actually significantly different issues that can have a huge effect on one’s Autistic Neurology, but are branded ‘low functioning’ Autism, or ‘severe’ Autism. All labels which are hugely subjective, assumptive and meaningless.

Creating greater understanding of the impact of co-occurring conditions is paramount and often the thing most overlooked.

We all need to apply critical thinking to our understanding of Autism, rather than blindly accepting what is put before us and then clinging to it dearly. That applies whether we are Autistic, a supporting family member and, probably most crucially, a Professional working in the field.

Professionals have the biggest responsibility in this over everyone – often I wonder if they realise how much power they wield and how much damage they do, reinforcing what are essentially untruths and fallacies that actively undermine and harm people.

Whatever you identify as, your responsibility, indeed the responsibility of all of us, is to learn as much as possible, so that we can all support each other to the best of our abilities. Our responsibility is the well-being of each other.

So let’s be responsible.

***Edit***

There have been a number of comments i’ve noted casting doubts on the existence of Aspie Supremacists, or at least stating that issue has been over-inflated. So I thought I’d include some links to show that this has been an ongoing problem amongst the community for a very long time:

  1. Aspie Supremacy can kill, Mel Baggs
  2. What are Aspie Supremacists, Amythest Schaber
  3. Binary Boys: Autism, Aspie Supremacy and Post/Humanist Normativity, Anna N. de Hooge
  4. Xavier’s X-Men: On the Fallacy of Aspie Supremacy, The Aspie Rabbit
  5. Rational Wiki
  6. Rebranding Asergers, Aspergia web archive
  7. The Aspergian Mythos, Aspergia web archive
  8. A serious discussion about Aspie Supremacists, Neurodivergent Rebel
  9. Could Autism and Aspergers be the next step in Human evolution?, Frank Gaskill
  10. Autism, Rhetoric, and Whiteness, Paul Heilker
  11. Asperger and Supremacy, Tales by the unexpected
  12. The view from my brain, Jem
  13. Tired (Of Autism misrepresentation), The Thinking Person’s Guide to Autism
  14. Just because you have Asperger’s doesn’t mean you get to be an ass, PensiveAspie

I could go on, but to be honest there are thousands of results, so if you want to do your own digging, here is the google search link on Aspie Supremacy for you.

It’s neither a nice, or easy thing to read about and I’d like anyone doubting this issue to consider the fact that just because you haven’t *seen* something, doesn’t mean it doesn’t exist.

    1 Response to "Asperger’s Syndrome: What’s in a name?"

    • Leen Vermeersch

      Very interesting read! Happy to finally know all about Asperger’s/autism.
      My diagnosis said “mild autism” and the therapist verbally added “formerly known as Asperger’s”.
      I’ve been a bit angry about that since I got the diagnosis: who are they to say my autism is mild. When I think of autists who are non-verbal and bang their head against the wall all day, I’m almost jealous because they don’t overthink about what others think of them, they don’t rehearse every conversation, every interaction with others all the time, lying awake doing just that etc. Moreover pain and “how hard life is” is not measurable or comparable. I can cut my finger and suffer more than someone else who has cancer or got shot. The problem is that other people always compare and judge instead of acknowledging our struggles.

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