“THE ASPERGIAN” NAME CONTROVERSY

04.08.2019 1 comment Article AUTISM, PUBLIC STATEMENTS

A half circle of burnt matches on the left and a single unburnt match on the right, infront of a white background.

INTRODUCTION

There is currently a debate going on within the autistic community about the name of “The Aspergian” – a neurodivergent run website that publishes autistic peoples autism-related content. For those of you who don’t yet know about this, these are some autistic peoples concerns about the name:

1. The platform is supposed to be for all autistic people, but the name is factually exclusionary because not all autistic people are “Aspergers”.

2. It is outdated because “Aspergers” as a diagnosis has already been phased out in many places and will continue to be phased out, eventually likely internationally.

3. It is problematic, because “Aspergers” is a functioning label. It was and is used to label people “high functioning”. Functioning labels are factually wrong and harmful and something the autistic community at large is against (including “The Aspergian”).

“The Aspergian” has now published a statement about why the name was chosen, as well as why they currently refuse to change it. As an autistic activist, I do have an opinion on this matter and feel it’s important to share it.

I have decided to do so by responding directly to quotes from “The Aspergian”s statement. It is very long so I am not going to address every single sentence. I have included their full statement at the end of this post.

MY RESPONSE TO “THE ASPERGIAN”s STATEMENT

“1. Society has decades before the use of “Asperger’s” falls out of common perception.”

Yes, it will take time to phase out the use of “Aspergers”. It should be phased out, for the previously mentioned reasons. Purposefully naming something after it does the opposite of phasing out the term – it actively keeps it in use. If we want it to not be used anymore, we need to stop using it.

“99% of the population still believes it means something besides autism. […] Asperger’s is autism. Full stop.[…]”

Yes, “Aspergers” is autism. But not all autism is “Aspergers”. Thus “Aspergers” and “autism” cannot be used interchangeably for all autistic people. Given that “Aspergers” always has been a false functioning label, one could even argue that no autism actually is “Aspergers”…but that goes too far at this point.

You state your platform is for all autistic people, and you do live that by including a broad spectrum of voices – yet you still name your publication after only a small portion of autistic people instead of choosing an inclusive name. It doesn’t make sense.

“3. The autistic community is divided, and that is an emergency. Our most recognized advocates are mostly white, mostly people the world would characterize as “Aspie” […] Who cannot survive in those environments? Who isn’t given a voice or room to speak? The answer is most autistics. […] Because no movement that cherrypicks its representatives by who can be the most obedient is ever going to make the strides it needs to make.”

Very true. But how does you naming your site after this exclusionary harmful diagnostic label help this? This is exactly why autistic people have asked for a name that includes and represents all of them.

Your content is inclusive and intersectional. I don’t think anyone is denying that. But we aren’t discussing your content – we are discussing your name. The two are at total odds with each other.

“[The title of the site] is a purposeful choice of saying that these words associated with us were not ours to choose or define, but we are going to dismantle the cage those words have made and turn it into a platform. It is a strategy used by other civil rights movements called “disidentification.”.

When marginalized people abandon the language used by oppressors, it gives oppressors control without our input. Disidentification seeks to use the language others recognize and redefine it. It moves goalposts in the direction of progress. It forges change.”

The reason autistic people are working incredibly hard to phase out terms like “Aspergers” is not that our oppressors use them. It’s that we now understand that they are factually wrong and harmful.

We aren’t giving our oppressors power by using factually correct language instead of the language they used for us. This isn’t happening “without our input”. It is in fact all about our input. It is about autistic people knowing that these terms are incorrect and harmful and thus deciding they should not be used anymore. It’s all about taking our power back.

Also, words have meanings. Despite you claiming that nobody agrees on what “Aspergers” means in a previous paragraph, that isn’t quite true. “Aspergers” is commonly understood to mean “high functioning autism” and people absolutely have an image in mind when they hear it. Autistic people included. This history, this common understanding of the term, can’t just be erased and replaced by whatever you want.

“A lot of people diagnosed with Asperger’s —millions— have no clue what the autistic insider community consensus is. A lot of those people were given that diagnosis because it was less stigmatizing. Some professionals wanted to save clients from abuses, domestic and institutional, that might be worse with the label of autism. That diagnosis was given to every autistic person who received it because of the misinformation and biases of their physicians.”

These are all arguments against using the term “Aspergers”.

If millions don’t know any better, the response shouldn’t be to leave them uneducated…it should be to call it out and educate until everyone knows.

If you get diagnosed “Aspergers” because it has less stigma than “autism”, the response shouldn’t be to perpetuate the false label…it should be to call it out, and to destigmatize and embrace the autism diagnosis.

If you get diagnosed “Aspergers” to be safe from the abuse people with an “autism” diagnosis are subjected to, the response shouldn’t be to embrace the false sense of security that label gives you…it should be to call it out, and to dismantle the abusive system so all autistic people are safe.

If every “Aspergers” diagnosis was given because of the misinformation and biases of physicians, the response shouldn’t be to embrace that false, harmful, biased label…it should be to call it out and to eliminate it and replace it with the proper one, which is “autism”.

“But they formed a robust community and they aren’t ready to let it go. That name became a source of pride and community as much as autistic is for others. We are all autistic, though, and none of us had a role in naming ourselves. But we are not going to let anyone use the distinctions anymore and remain unchecked. There is ONE autism.”

Again, this is an argument against using “Aspergers” as the site name.

Referring to your own diagnosis as “Aspergers” is not what the autistic community is discussing here. We are discussing a site that claims to be for all autistic people having purposefully named itself after only a portion of autistic people. Those are two very different things.

You say “But we are not going to let anyone use the distinctions anymore and remain unchecked. There is ONE autism.”, turn around, and use the distinction of “Aspergers” as an umbrella term for the entire autistic community in your site name.
And when the autistic community then checks you on that very thing, you defend your use of this distinction. It makes no sense.

“If you won’t share an article from a queer, blind autistic woman of color about autistic pride or a nonspeaking teen about how he types with a communication facilitator because of the site name — who is exclusionary, really?”

This is possibly the part of the statement I find the most problematic.

You knowingly, purposefully, chose a name that is problematic within the very community you publish. It is factually a functioning label. It is factually outdated and being phased out. It is factually exclusionary. Autistic people explained that they cannot share your content even if it is good, because they cannot ethically perpetuate those things.

You now try to guilt and shame autistic people for rightfully not perpetuating the harm the term “Aspergers” does. That is unacceptable. The harm done by the continued use of “Aspergers” is real. It doesn’t go away just because good content exists on your site at the same time.

Please be aware that sharing content from “The Aspergian” is not the only way for people to share a wide range of autistic voices. Someone who cannot support the use of a term like “Aspergers” can find other ways to platform autistic voices. The fact that a person chose to publish on “The Aspergian” is also not the responsibility of those who now cannot share that content.

And finally, now suddenly it’s just a site name even though you just spend over 1000 words explaining why that site name is so important?
So you are allowed to find it super important, so important that you disregard all the problems that factually exist with it – but when other autistic people find it just as important BECAUSE of all those problems, they are exclusionary?

Just no.

“Maybe our name will change, but for now it is a challenge to force people to see our scars and ask them to stop telling lies about us. It is a refusal to surrender our narratives to their propaganda. It is a revolt against supremacy, and it is working.2

How are you refusing to surrender to their propaganda, and revolting against supremacy, by continuing to use a term that represents those things? I understand what you think you are doing, but that is not what’s happening.

It is working? It is working to exclude autistic people who aren’t diagnosed or don’t identify as “Aspergers”. It is working to force autistic people for whom “Aspergers” isn’t applicable to either not publish on your site, or to be mislabeled. It is working to keep a term alive that has done and still is doing much harm to our community. It is working to please non-autistic people. I don’t think that’s what you want, given the content on your site. But it is the effect the term “Aspergers” has, whether you like it or not.

MY PERSONAL STANCE ON “THE ASPERGIAN”s NAME

Personally, because of everything I said so far, I don’t support naming anything after “Aspergers”. I think it would be good if “The Aspergian” changed their name to something inclusive of all autistic people, to reflect the inclusive platform they aim to be – but it’s their choice. I don’t demand a name change.

I also don’t demand that people stop writing for “The Aspergian”. Or that people stop sharing content from “The Aspergian”. Everyone has to make these choices for themselves. Just know that other people also have the right to voice their justified criticism and concern.

I also don’t demand that people who have been diagnosed “Aspergers” stop using this label for themselves. My thoughts around that are complex and possibly deserve their own blog post. At this point just know that this isn’t about individuals using the label for themselves.

What I do demand, is that the real consequences of the use of the term “Aspergers” aren’t erased.
And that autistic people who refuse to give that term a platform are respected for their justified choice.

READ THE ASPERGIANs FULL STATEMENT HERE

STATEMENT BY “THE ASPERGIAN”:

The Aspergian is named what it is for a lot of reasons. But, primarily, it is an active rebellion. Here are some of the reasons:

1. Society has decades before the use of “Asperger’s” falls out of common perception. 99% of the population still believes it means something besides autism. Some think it means quirky genius who is blunt to the point of offensive. Some believe it is an extreme male brain. Others believe that it is “one step past the train stop for narcissism.” Some fetishize it as people who are just so gifted they can’t fit in. Nearly everyone has a different idea of what it means, and they are all dehumanizing and dismissive. Asperger’s is autism. Full stop.

There is a major push to silence autistic advocates by implying that Asperger’s is not autism at all. They say it is a personality or hormone disorder. This is why you are seeing an uptick in transphobia and other forms of bigotry against autistics who are often queer.

It is a diagnosis of white privilege and the people who want their “gods of Silicon Valley” extreme male brain theory to go on are angry that autistics are making a push for intersectional activism. They hate “identity politics” because they care about genetics (eugenics).

They do not want to share their story because they are disgusted by women and queer folk– and I would argue also people of color and ethnic minorities– are now being diagnosed or searching for diagnosis. They don’t want to be associated with us.

2. People believe autistic people who are non-speaking are without the capacity for thought, autonomy, opinion, desire, and human connection. Society wants to sterilize, silence, and cure them. They call their existence an “epidemic.” Their parents see themselves as martyrs.

Autistic people with learning disorders and intellectual disabilities are dehumanized as if they are somehow more “severely autistic” than what they think Asperger’s is. They justify all manner of abuse by proliferating the myth that “severe autistics” are incapable of humanity.

They spend millions or billions running propaganda to keep the two separated. Autism Speaks is among the most recognized, but these people are in power all over the most privileged institutions in the world doing what they can to shut us up.

3. The autistic community is divided, and that is an emergency. Our most recognized advocates are mostly white, mostly people the world would characterize as “aspie,” and mostly in agreement on things like the fact that the word “Asperger’s” is an unacceptable word.

There are people who spell it like it is a profanity so disgusting it must be spelled with asterisks (As******s) and those who retain it are treated like they are pushing hate language. Internalized ableism is a trauma reaction. It is not autistic people’s fault, but society’s.

They are shouted out, shunned, & banned from safe spaces that are NOT safe for autistics. Let’s fix that by not penalizing autistic people for being autistic with communication difficulties or for not knowing better. They need room to self-accept because of trauma. Let them grow.

Who cannot survive in those environments? Who isn’t given a voice or room to speak? The answer is most autistics. Sometimes autistics who could score the highest on an IQ test are the least capable of understanding social nuance. No more victim shaming. IQ is an ableist construct.

Sometimes they are the ones who have zero people in the world who aren’t abusive to them. Sometimes they are the most disadvantaged. Having a lot of words but not the nuanced understanding of how to use them is a different type of disability for some autistics.

I got an unpaid writing gig for PsychCentral. I got it because I was thoroughly pissed at the shit published there by literal leaders of anti-autistic hate group leaders with PhDs. I am the token autistic. I was getting contacts from universities and orgs all over the world.
I wanted to funnel the attention off of me, a white woman with a graduate education and academic writing skills, to those people who are least represented. I am new to autistic advocacy, but have been a hardcore human rights activist for 20 years. I have no wisdom of my own.

If autistics want to gain parity and be humanized, if we really want to make a difference, then we need to give our privilege up to people who don’t have it for whatever reasons. We need to look at the history of human rights movements and pay homage and learn from them.
Because no movement that cherrypicks its representatives by who can be the most obedient is ever going to make the strides it needs to make. So, the title of the site is very purposeful. It is irreverent of social conventions and status quo.

It is a purposeful choice of saying that these words associated with us were not ours to choose or define, but we are going to dismantle the cage those words have made and turn it into a platform. It is a strategy used by other civil rights movements called “disidentification.”
When marginalized people abandon the language used by oppressors, it gives oppressors control without our input. Disidentification seeks to use the language others recognize and redefine it. It moves goalposts in the direction of progress. It forges change.

A lot of people diagnosed with Asperger’s—millions— have no clue what the autistic insider community consensus is. A lot of those people were given that diagnosis because it was less stigmatizing. Some professionals wanted to save clients from abuses, domestic and institutional, that might be worse with the label of autism. That diagnosis was given to every autistic person who received it because of the misinformation and biases of their physicians. But they formed a robust community and they aren’t ready to let it go.

That name became a source of pride and community as much as autistic is for others. We are all autistic, though, and none of us had a role in naming ourselves. But we are not going to let anyone use the distinctions anymore and remain unchecked. There is ONE autism.

If you won’t share an article from a queer, blind autistic woman of color about autistic pride or a nonspeaking teen about how he types with a communication facilitator because of the site name— who is exclusionary, really?

Maybe our name will change, but for now it is a challenge to force people see our scars and ask them to stop telling lies about us. It is a refusal to surrender our narratives to their propaganda. It is a revolt against supremacy, and it is working.

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