Alek Minassian’s Plea of Not Criminally Responsible is an Insult to Justice and All Autistic People

Image Description: Black Label with White writing that says "Actually Autistic"
Image Description: Black Label with White writing that says “Actually Autistic”

Alek Minassian killed ten people: Ji Hun Kim, So He Chung, Anne Marie D’Amico, Andrea Bradden, Chul “Eddie” Min Kang, Beutis Renuka Amarasingha, Geraldine Brady, Munir Abdo Habib Najjar, and Mary Elizabeth Forsyth. He is also responsible for injuring sixteen other people. After the attack in 2018 it was reported that Minassian is autistic. I too am autistic, and I worried at the time that negative associations with Minassian might carry over to increased prejudice against autistic people in general.

I could not have imagined that Minassian and his legal team would attempt to claim that he was not criminally responsible for so much death and harm because he is autistic. I, and many of my peers in the autistic community, are horrified by this development.

The argument relies on serious misconceptions of autistic people and ignores the differing realities autistic people face if they are not straight white men. Autistic women are often not diagnosed until later in life and often learn to mask their autistic traits (at the expense of their mental health) because of social expectations for women and girls. People rarely question whether the entitlement and sexually predatory behaviour exhibited by some white autistic men is not in fact inherent to their autism, but rather that they simply have not been held to a high enough standard and have routinely not faced consequences for their actions. And this is certainly a white privilege offered to men like Alek Minassian, as it is certainly not extended to autistic men and boys of colour. Men like Arnaldo Rios Soto whose caregiver was shot because They believed the toy Arnaldo was holding was a gun.

This legal defense is only possible for Alek Minassian because he is a white autistic man, who benefits from a cultural understanding of autism that often ignores the existence of—much less the starkly different realities of—autistic people who are not straight white men.

The legal defense also relies on a primary misconception of autism. Other autistic people and I watch in horror as Minassian is described in court as not having empathy and having that tied directly to his being autistic. The idea that autistic people lack empathy is simply untrue and there is plenty of contemporary research to back this up. Sue Fletcher-Watson and Geoffrey Bird theorize that past research has used flawed terminology and measurements to determine autistic empathy.

Minassian is described as only understanding wrongfulness on an intellectual level— a statement I find particularly difficult to parse. As an autistic person, I understand perfectly well that mass murder is wrong. I also understand the human toll that occurs after such an event takes place. It is not just that people have died and been injured. There is the secondary victimization experienced by the families who lost loved ones, people whose injuries might have resulted in permanent disabilities, and the ongoing trauma experienced by everyone touched by this event.

The defense has further claimed that Minassian’s autistic way of thinking is “similar to a psychosis”. This is absurd. I have experienced an actual diagnosed psychosis; it was very different than my autistic way of thinking. The consequences of my being a psychotic autistic were that I didn’t leave my apartment for several days, said some inappropriate things on Twitter, and spent eight days in a locked psychiatric ward, after which, I spent months finding the right balance of medications to keep that from happening again.

Getting blocked by a few people on Twitter for having a psychotic episode, is a far cry from planning and carrying out mass murder. All of which he did while apparently completely aware of what he was doing.

Disability, particularly a disability that impacts how a person relates to the world, is a convenient scapegoat. It is so convenient that at times prosecutors themselves have assumed that something must be psychiatrically wrong simply to make sense of horrible events. Consider Norwegian mass murderer Anders Behring Brevik, who killed 77 people in 2011. He was quickly diagnosed as having schizophrenia, a diagnosis that was later removed.

Disability is a convenient and perhaps even comfortable scapegoat that explains why horrible things happen. It, however, ignores the insidious nature of white supremacy and misogyny that are prevalent in Incel online communities. It ignores a long history of regular people rationalizing committing atrocities. Disability is a convenient boogey man that allows people to deny accountability to bigoted belief systems. I can only hope that it will ultimately be recognized that Alek Minassian is a man who was radicalized by misogyny and that he is punished accordingly.

How to Support Me and My Work

The outbreak of COVID-19 has created a lot of financial precarity for me, so I would really appreciate any assistance you are able to offer

Please if you are able help the most vulnerable in your communities by practicing social distancing responsibly and by not hoarding resources.

I personally am experiencing financial difficulties as a result of Covid-19 and would appreciate any assistance you can offer, even if it’s just to share this blog post.

If you are able please consider helping me financially during this time. My situation is quite precarious.

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Influencer/YouTuber Mika Stauffer and her Husband Dissolve Adoption of their Disabled Son: A Disabled Adoptee’s Perspective

Content warnings for discussion of adoption, racism and child abuse

Image description: A white couple Myka and James Stauffer sit on a white bed while both wearing white shirts. Myka has dyed blonde hair and is wearing glasses, James has a beard and is bald
Image description: A white couple Myka and James Stauffer sit on a white bed while both wearing white shirts. Myka has dyed blonde hair and is wearing glasses, James has a beard and is bald

Mika Stauffer is a YouTuber and Instagram influencer. She has hundreds of thousands of followers and she has just revealed that she and her husband James have dissolved the adoption of their autistic son Huxley who they adopted from China.

This is a story that is steeped in racism that I am not best placed to talk about/ If you read this please also seek out commentary from transracial and transnational adoptees. They can best contextualize the impacts of the racism involved in this tragedy.

Transracial is an accepted term in the adoption community reffering to adopted children whose parents do not share the child’s race.

Huxley Stauffer is a transracial adoptee.

I myself am a disabled adoptee and I have experience with being the child that my parents did not expect and the consequences that I experienced as a result of that.

I tweeted about it yesterday.

While I was never “rehomed” (a term more appropriate when speaking about pets not children), my parents very much resented my disabilities.

My parents decided early on that they would not allow themselves to be inconvenienced by my cerebral palsy. So they decided that I just needed to grow out of it.

As growing out of brain damage was not a thing I could accomplish, I was punished for not living up to their expectations. Often if I needed help with something, I just had to accept that it wasn’t going to get done or I couldn’t have it. I could also expect to be lectured on how the situation was entirely my fault for not trying hard enough.

The abuse and neglect surrounding my physical limitations came primarily from my mother, though she taught the rest of the family to have the same unreasonable expectations of me. My father put me through daily psychological hell because I was undiagnosed autistic and I hated his form of “humour” which largely comprised getting into my space while miming violence and refusing to stop calling me hated knicknames or retelling heavily embellished stories twisted to humiliate me.

He drove me to tears on a nearly daily basis. This behaviour was also normalized in the family and it was always my fault for being upset by it.

One of the things he frequently brought up was a story he had heard second hand from a coworker. I had been going door to door selling Girl Guide cookies and knew that I was approaching the home of someone I knew. Rather understandably I chose to exploit this connection in order to sell cookies. I told him that I knew who he was and that he worked with my dad and that he should buy cookies. He bought cookies.

When he relayed this story to my dad at work, I’m certain he was just sharing a cute story involving his co-workers kid. He definitely didn’t know that I would be harassed with this story for years after.

My dad came home and gleefully retold this story in a sing songy voice, implying that I had behaved ridiculously. I burst into tears. Thus established as something that was guaranteed to get under my skin, my dad would chant “I know you and you know my dad” at me insistently as though this was the most ridiculous thing a 6 year selling cookies could ever do.

It was so ingrained as a hilarious and timeless story that even after my dad died my family kept doing it. One day we had that coworker to dinner and my mother dropped a sing song “I know you and you know my dad” into the conversation thinking this man was in on the joke. He stared atr her blankly until she awkwardly changed the subject.

To him it was just a long forgotten anecdote about a friend’s cute kid. However, for me it became something that resulted in decades of harassment.

I used to beg dad to stop harassing me. I tried talking to him about it like an adult but he was too convinced that I was the problem, I had to just get over it and learn to laugh.

Unsurprisingly years of psychological abuse eventually turned physically violent and at that point dad also threatened “I can send you back where you came from”.

It is important here to make clear that throughout my childhood I was constantly told everything was my fault. If I couldn’t figure out how to do something, I was lazy and not trying hard enough. If I complained about the ever present harassment that I experienced, I was told it was my own fault and if I stopped reacting to it, it would stop.

So being told that by a parent even an abusive one that I was still “other” and potentially disposable was devastating even as I was the victim of a physical assault.

One of the things that I find interesting (read: concerning) about the Mika Stauffer debacle aside from the fact that this child was used for views and financial gain before being effectively thrown away (which has been written about thoroughly elsewhere) is that there seems to be little focus on the role of James Stauffer, Myka’s husband.

Much of the ire is being directed at her while her husband is not being targeted with the same degree of censure.

So I just want to remind everyone that James Stauffer abandoned this child too. He would have been involved in the decisions.

The hell I lived through is not an isolated incident. It is the experience of far to many disabled children whether they are adopted or not. We need to hold the parents of disabled children to a higher standard based on outcomes for the child and not simply assume that “they are doing the best that they can”

How to Support Me and My Work

The outbreak of COVID-19 has created a lot of financial precarity for me, so I would really appreciate any assistance you are able to offer

Please if you are able help the most vulnerable in your communities by practicing social distancing responsibly and by not hoarding resources.

I personally am experiencing financial difficulties as a result of Covid-19 and would appreciate any assistance you can offer, even if it’s just to share this blog post.

If you are able please consider helping me financially during this time. My situation is quite precarious.

You can support me on Patreon

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You can buy me a coffee

Buy Me a Coffee at ko-fi.com

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Sarah Kurchak’s “I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder” is the Memoir Everyone Should Read Right Now

Image description: Book cover for I overcame my Autism and all I got was this Lousy Anxiety Disorder. The title is shown at the top under an endorsement from Hannah Gadsby which reads “A treat to read, I’d recommend this book to anyone who struggles to connect to the world, even if you don’t call that struggle Autism” A head and shoulders shot of the author a white woman with pink hair with her head resting on her arm takes up the bottom of the cover.
Image description: Book cover for I overcame my Autism and all I got was this Lousy Anxiety Disorder. The title is shown at the top under an endorsement from Hannah Gadsby which reads “A treat to read, I’d recommend this book to anyone who struggles to connect to the world, even if you don’t call that struggle Autism” A head and shoulders shot of the author a white woman with pink hair with her head resting on her arm takes up the bottom of the cover.

Thank goodness for whoever decided to release the memoir I overcame my Autism and all I got was this Lousy Anxiety Disorder by Sarah Kurchak early on April 2nd. I immediately downloaded the ebook, though hardcopies are also theoretically also currently available in Canada but shipping delays might keep you from getting it until May (because global pandemic). Americans who want a hard copy will have to wait for September 22 international publication date (hopefully no more pandemic).

Sarah’s memoir is written in the form of connected essays in the form of a “How To Succeed” while directly challenging the idea that she actually knows how to do that. The book is an important challenge to the concept of “overcoming autism” and is a necessary example of the consequences of giving in to the pressures of trying to perform “normalcy” in an attempt to fit in.

More narratives by autistic people are something the world really needs. If only to break the monotony and statistical inaccuracy of the stories (far to frequently fictional and inaccurate) of straight white autistic men. Author Sarah Kurchak tries to challenge the unreality of what the wider world thinks about autistic people (and I can only hope she succeeds in chipping away at that bullshit). One of the most important themes that she discusses in her memoir is the issue of being believed and how often autistic people are challenged on both their autisticness and the validity of their opinions and experiences in relation to relevance to the broader autistic community.

As she points out one of the biggest Autism charities which has a dearth of autistic people in influential roles is called Autism Speaks (an organization that is widely unpopular with actual autistic people).

As Sarah explains in the introduction about a neurotypical response to her as yet unpublished teen sex comedy (which I desperately hope becomes a real book someday soon) that it was “REAL and raw”

For as long as autistic narratives are dominated and controlled by others, these are the concerns that will fester in the pit of my stomach and the back of my brain every time I sit down at my laptop, start to rock from side to side, and write.I have no interest in being told that my writing is real. I need my work to tell you that I am.

This is but one of the first of many poignant quotes mixed with wry and often comical anecdotes while also dealing with serious and heart wrenchingexperiences. This book is not about “what it is like to be autistic” no matter how frequently I reacted with “yep, me too”. It is a challenge to that monolith. It is about Sarah as an individual among individuals who may share common struggles experienced in an unending variety of of ways in a world really not designed for us.

This book is unrecognizable within the genre of autism narratives and that is one of my favourite things about it. I genuinely hope to see more books not like it but which also challenge the far to prevalent monolithic view of autistic people but as individuals whose stories matter outside the niche genre of autistic narratives.

The book is funny, sad, and serious and I highly recommend it as a really good read to absolutely everyone.

I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder: A Memoir is available in ebook and paperback in Canada from Indigo and Amazon

It is available in ebook form in the United States from Amazon and will be available in paperback on September 22.

We’re all stuck inside anyway so why not read a really good book.

How to Support Me and My Work

The outbreak of COVID-19 has created a lot of financial precarity for me, so I would really appreciate any assistance you are able to offer

Please if you are able help the most vulnerable in your communities by practicing social distancing responsibly and by not hoarding resources.

I personally am experiencing financial difficulties as a result of Covid-19 and would appreciate any assistance you can offer, even if it’s just to share this blog post.

If you are able please consider helping me financially during this time. My situation is quite precarious.

You can support me on Patreon

Become a Patron!

You can buy me a coffee

Buy Me a Coffee at ko-fi.com

Or send me money directly through Paypal

paypal.me/crippledscholar

Autism Awareness Month in the Time of Covid-19: Support Actually Autistic People…Seriously

Image Description: Photo of a blackboard that says "Support #ActuallyAutistic People" with a multicoloured infinity symbol at the bottom
Image Description: Photo of a blackboard that says “Support #ActuallyAutistic People” with a multicoloured infinity symbol at the bottom

Once again April is nearly upon us and along with it the baggage of Autism Awareness Month. Autistic people often dread April with it’s frequently dehumanizing rhetoric about us and a focus on Autism Charities that are often very unpopular with the people they claim to support. April often seems less about raising awareness for autistic people (whatever that actually means) and more a very pervasive fundraising campaign for Autism Organizations whose goals and actions are often in opposition to those of autistic people.

Autistic people exist, you are now aware, can we move on to acceptance and meaningful inclusion and support now?

Traditionally, April is full of people “Lighting It Up Blue” a campaign created by Autism org Autism Speaks. Puzzle piece imagery also abounds which is also largely associated with Autism Speaks but which has become so synonymous with autism that many organizations use it. It is a common feature in April Autism fundraising campaigns. I have seen puzzle piece pedicures which raised money for an organization that had no autistic representation in its governance.

Each year many autistic people protest the corporatization of autism initiatives. We protest the use of the puzzle piece to represent us as we believe it implies that we are broken and require putting back together. The negative associations of puzzle piece iconography has been backed up by research.

Autistic people tend to prefer the symbol of a rainbow infinity symbol which celebrates neurodiversity.

Image Description: Infinity symbol in a rainbow gradient
Image Description: Infinity symbol in a rainbow gradient

One of the most common issues of contention is the continued popularity and public support for Autism Speaks which is so unpopular in the autistic community that many consider it a hate group. We have been explaining why for years. There are many accounts by autistic people explaining their continued dislike of the world’s largest autism charity. There are even videos.

Yet, every year when an autistic person expresses dread of April and the inevitable inundation of Autism Speaks fundraising, we still get asked why?

This year is different though. This year we are heading into April in the middle of a global pandemic. This year might offer autistic people a brief reprieve from what many of us have renamed “Autism Bewareness Month”. It will be harder for organizations like Autism Speaks to roll out their huge campaigns in a world that is social distancing (something that autistic people are really good at by the way).

That does not mean that the world should look away from autistic people this April. This year is instead an opportunity to refocus on supporting autistic people more directly.

I know that I am not alone as an autistic person in experiencing a heightened state of financial anxiety as a result of social distancing. I also have a physical disability that adds nutritional anxiety as I cannot grocery shop on my own both because of physical barriers and that I am a higher risk for serious coronavirus infection.

Many of us might already be champions at social distancing but we are particularly at risk of extreme poverty and not being able to find the supports we need to get through this pandemic safely.

So this year I would ask that if you are able that you directly support autistic individuals and organizations that are run by and for autistic people.

You can support me by sending me money directly through paypal (I will include more ways to support me and my work at the end of this post).

You can also support autistic creator like Amythest Schaber (whose video can be viewed earlier in this post). Amythest is also an artist with a shop on Redbubble where they sell beautiful autism and disability inspired art.

Image description and art print of the word Neurovidersity in a rainbow gradient with sparks like neurological connections on a black background. It can be purchased here

There are also autistic authors who write beautiful autistic characters. I recommend On The Edge of Gone by Corinne Duyvis.

My friend and amazing writer Sarah Kurchak has a memoir coming out on April 2, and the book launch has been cancelled due to coronavirus but you can and should preorder her book I Overcame My Autism and all I Got was this Lousy Anxiety Disorder. Autistic comedian extraordinaire Hannah Gadsby is a fan.

Image description: Book cover for I 
overcame my Autism and all I got was this Lousy Anxiety Disorder. The title is shown at the top under an endorsement from Hannah Gadsby which reads "A treat to read, I'd recommend this book to anyone who struggles to connect to the world, even if you don't call that struggle Autism"  A head and shoulders shot of the author a white woman with pink hair with her head resting on her arm takes up the bottom of the cover.
Image description: Book cover for I
overcame my Autism and all I got was this Lousy Anxiety Disorder. The title is shown at the top under an endorsement from Hannah Gadsby which reads “A treat to read, I’d recommend this book to anyone who struggles to connect to the world, even if you don’t call that struggle Autism” A head and shoulders shot of the author a white woman with pink hair with her head resting on her arm takes up the bottom of the cover.

You should also go watch Gadsby’s phenomenal comedy special Nanette on Netflix.

These are just a few of the amazing autistic people you could be supporting and learning from this April. We are sheltering in place after all, what else are you going to do?

Aside from directly financially supporting autistic individuals, you can also support better autism organizations whose leadership is full of autistic voices and whose goals more clearly support the wellbeing of autistic people. Organizations like The Autistic Self-Advocacy Network, The Autistic Women & Nonbinary Network, and Autistics 4 Autistics.

In the midst of the stress and fear that this pandemic has caused please don’t forget autistic people this April. Use the opportunity of the time afforded by social distancing to learn more about autistic people from autistic people rather than making a shallow visual show of support that benefits a charity more than the people who require the support.

Let’s get past autism awareness and move on to autism acceptance and inclusion.

How to Support Me and My Work

The outbreak of COVID-19 has created a lot of financial precarity for me, so I would really appreciate any assistance you are able to offer

Please if you are able help the most vulnerable in your communities by practicing social distancing responsibly and by not hoarding resources.

I personally am experiencing financial difficulties as a result of Covid-19 and would appreciate any assistance you can offer, even if it’s just to share this blog post.

If you are able please consider helping me financially during this time. My situation is quite precarious.

You can support me on Patreon

Become a Patron!

You can buy me a coffee

Buy Me a Coffee at ko-fi.com

Or send me money directly through Paypal

paypal.me/crippledscholar

April has Never Been About Autism Awareness, It has Always Been About Money

So April is over and with it “Autism Awareness Month” and what have we learned?

How much did you learn about autistic people?

Did you interact with autistic people?

What awareness campaigns did you participate in?

Did you give money to or purchase an item or service that shared a portion of the proceeds with an autism charity?

If you did the latter can you tell me the goals and intentions of that organization?

No?

I’m not surprised. Autism Awareness Month would more accurately be called “Autism Fundraising Month”. The month where everyone buys something with a puzzle piece on it and proclaims that they are raising awareness for autism. But what awareness is that? and has it done any good?

If you posted about the puzzle piece pedicure you got for Autism Awareness Month on Facebook and you can’t answer basic questions about autism much less the organization that benefitted from your spa day then you didn’t actually do anything for raising awareness. You attended a fundraiser and that is a different thing.

A fundraiser is an event where an organization solicits donations for their organization.

An awareness campaign should be where an organization starts putting that money to good use through meaningful, targeted learning objectives.

Getting a puzzle piece anything in April is really just a good way to show just how unaware of autistic people that you really are. The puzzle piece is, after all, a controversial image within the autistic community (here defined as actual autistic people only) many people do not like it. This information is pretty easy to find with a google search. And if you don’t actually care what actual autistic people think about things that directly impact them, then you can consider this academic study that came to the same conclusions (link leads to a paywall). The conclusions are pretty clear

If an organization’s intention for using puzzle-piece imagery is to evoke negative associations, our results suggest the organization’s use of puzzle-piece imagery is apt. However, if the organization’s intention is to evoke positive associations, our results suggest that puzzle-piece imagery should probably be avoided.

All those puzzle pieces and other vague statements of support for autistic people that nonautistic people proudly post about on social media do absolutely nothing to increase awareness and in some cases as with the wide array of autism inspired puzzle piece paraphernalia may actually be achieving the opposite of awareness. These images ultimately mislead people about what autism is and what it means to live in the world while autistic.

Beyond the fact that for the most part Autism Awareness Month campaigns have everything to do with fundraising and very little to do with awareness, the continued conflation of the two during April actively hurts autistic people. Not just because for an entire month we are inundated with distressing images that people have been misled into believing are helpful. Charities maintain a level of cultural status that often overshadows that of the people they claim to serve. So if an autistic person attempts to inform someone who has proudly displayed their participation in a fundraiser and presented it as an act of awareness raising that their action was at best meaningless and at worst actively harmful, that person is going to get defensive. It is not uncommon for people who have been challenged on their proud act of solidarity to shout down a member of the group they just publicly claimed to support. They’ll believe the charity over autistic people. Because the charity told them all they had to do was publicly say they supported autism awareness month and to put a slogan or a puzzle piece in some proximity to their person.

They were promised that an empty gesture and a financial donation were good enough. Being told that the action is functionally meaningless is unsurprisingly going to make them angry.

I’ve said it before that nondisabled people have set the bar for solidarity with disabled people at simply not actively hating us. But that tolerance only lasts until a disabled person tries to demand more. To demand real awareness and the accompanying acceptance that is really needed to raise our standing in society.

Yet, we must continue to call out individuals for their false solidarity. Nothing will change unless we do. People should not be left comfortably sitting in the lie that simply declaring solidarity and throwing money at a charity actually means that they care about autistic people.

Anyone who claims to have participated in an awareness campaign for any marginalized group of people should be able to answer the following questions.

What is your intention in publicly sharing your experiences with this campaign?

Who organized the campaign?

What does that group/organization do?

Were members of the group being advocated for involved in the planning and delivery of the campaign?

What do members of that group think about this kind of activity?

Did the campaign give you the opportunity to meaningfully engage with members of the group being advocated for?

What did you learn?

What information was new or surprising to you?

Can you explain the information you learned to someone else?

If you donated money, do you know what that money will be used for?

If answering any of those questions would be difficult for a person participating in your campaign then it has nothing to do with awareness and the responsible thing to do would be to remove any mention of awareness from the branding of that campaign.

Awareness requires that people know more than the basic fact that autistic people exist. If your version of awareness cannot lead to acceptance then your awareness is an illusion. You just want a metaphorical cookie for giving a charity money.

 

How to support my work

I am currently fundraising to attend the International Disability Law Summer School. You can donate to that on GoFundMe

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Reflecting on the Fact that Hans Asperger was Really a Nazi and not just Working from the Inside to Protect Vulnerable People

There have been a couple major articles written about Hans Asperger, the man who categorized what would eventually be called Asperger’s Syndrome and then eventually just folded into the autism spectrum. These articles, the first of which was printed in the New York Times and the second in The Guardian both discuss Asperger’s history prior to and during WWII. A lot of English language research about Asperger has framed him as a man who protected disabled people from the harsher and more lethal aspects of the Nazi’s euthanasia programs. New research that did not rely so much on texts that had already been translated into English paint a much less flattering picture of Hans Asperger. This new research more clearly indicates that Asperger was not altruistic in his actions and personally made decisions that led to the deaths of disabled people.

I was diagnosed with Asperger’s Syndrome thirteen years ago. So how do I feel about the fact that the man who lends his name to a diagnosis I was given (Asperger’s is no longer an officially recognized diagnosis. As of the publication of the DSM V the diagnosis is just considered part of the autism spectrum)?

I’m completely unsurprised to be honest.

Part of this is probably because I never read books like Neurotribes or Asperger and his Syndrome (link leads to a paywall). Both are considered influential works on autism and both paint a kinder picture of Asperger either by glossing over his Nazi ties or suggesting he actually protected his patients from the Nazis. I have no preconceived notions to be challenged in the face of this new information.

Additionally, I’m aware enough of the history of men who are credited with discovering or categorizing other disabilities and that history suggests that if people googled their condition’s namesakes, a lot of people would be uncomfortable disclosing their diagnoses just to avoid association with the people whose names are attached.

Consider John Langdon Down, the man who categorized Down Syndrome. He initially called the condition “Mongolian Idiocy” and if that sounds really racist, it’s because it is. He called it that because he believed that people with intellectual disabilities were evidence of evolutionary throwbacks. He believed that people of colour were less evolved than white people and thus inferior. He further believed that because he could find similar physical traits between certain disabilities in white people and nondisabled people of colour that this meant that they were genetically similar racially. Basically, intellectually people were inferior because they weren’t genetically white.

He was a real winner. You can read more about his theories on race and disability in his 1866 paper Observations on the Ethnic Classification of Idiots. It’s awful so I don’t recommend it.

Ironically, Down Syndrome only became known as Down Syndrome after people finally clued into the fact that the term Mongolian Idiocy is just deeply offensive, so they changed the name to include the name of the man that invented that ableist and racist name for ableist and racist reasons.

I’d really like to sit those people down and ask them what they were thinking.

I’ve never identified as an “Aspie” as many people who received an Asperger’s diagnosis do. I have always felt that autistic far better described my experience and was just easier for other people to understand. So I don’t need to figure out what this means in relation to a label I identify with. I am also unsurprised that Asperger himself would have landed me with the not so flattering label of “autistic psychopath”.

It is interesting that these men didn’t name these conditions after themselves. Other people chose to do that after the terms those men came up with were recognized as harmful.

I am also aware that there is some concern about the revelations about Asperger in relations to people who actively identify as Aspies. There is a socially constructed hierarchy of autism which is usually defined by functioning labels. These are often distilled into high and low functioning. These kind of labels are harmful and many within the autistic community fight against them. Asperger’s Syndrome was considered a milder (read ‘higher functioning’) form of autism so some people who identify as Aspies use their specific diagnosis as a way to signal their place at the top of the hierarchy.

While this behaviour (and yes I know it wasn’t everyone so please no angry comments about how “You’re an Aspie but not like that”) was always harmful to the autistic community at large. There is now a sense that it is even more sinister considering the revelations about how involved Hans Asperger actually was with Naziism.

On that note I’d say, things aren’t worse because a Nazi did it first. The Nazis hold the place in our collective anger, fear and hatred because they did those awful things as a democratically elected (at least at first) and widely supported political movement and governing structure. They weren’t just awful people. They tried and succeeded within their own culture in making bigotry a culturally moral imperative.

So while the parallel is clearly troubling and uncomfortable. People who hold or have held feelings of superiority because of their specific Asperger’s diagnosis are still bad but no worse simply because we now know that Asperger was a Nazi. Their misdeeds are their own.

As for people who simply identify as Aspies because it was a way to claim community, the answer is less clear. While people should be able to identify however they want and Asperger’s name being attached to their diagnosis was a decision made in the 1980s by someone who wasn’t Hans Asperger. Asperger never put his name on the condition, it isn’t a way of claiming ownership or being given ownership of the people who have that label. So in that context, the term Asperger’s is relatively neutral. However, while people may individually decide that they are still comfortable with the label, they can’t force other people to be.

These revelations will inevitably stigmatize the name generally. More specifically because of how many different marginalized groups were targeted by the Nazis, there are just a lot of people who will understandably want to distance themselves from any reminder of that history of violence and genocide.

I suspect that we will see far fewer people identifying as Aspies. This has I think already started since already fewer people will be hearing that term at the point of diagnosis because it isn’t an official diagnosis anymore.

As a final thought…

Can people just stop naming medical diagnoses after the people who first categorized them? Particularly if the term is being changed specifically because that scientist gave it a horribly offensive name, to begin with.

It’s bad enough that people try and define us by our diagnoses. We really don’t need to be defined by our vague association with the people who first studied us too.

 

 

How to support my work

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I Like That, I Want That, Can I Have That?: When NonAutistic People Don’t Understand Autistic Communication and Punish Us For It.

When I was a child and I answered the phone I didn’t say “hello”, I said “What?”. My mother was constantly horrified at my supposed rudeness and would try and make sure that someone, anyone got to the phone before me.

The thing is though, that I wasn’t being rude or at least I didn’t think so. I was just responding to people on the phone the same way I would to someone who called to me from somewhere else in the house.

When my mother wanted me for something, she would yell my name from the foot of the stairs and I would respond with “WHAT?” I was never penalized for this and I just assumed that if someone was calling you then asking them what they wanted was kind of useful information to gather. I wasn’t trying to be rude. I was just transferring how I communicated in person to how I communicated on the phone.

If someone called to me in person, I responded with “what?” or “yeah?”. No one bothered to explain to me the difference of in person communication and communicating on the phone. So I kept getting in trouble for how I answered the phone and I never understood why.

I was always being told I was being rude when I couldn’t figure out why. It was only years later that I realized that because of the ways neurotypicals have coded language, they always interpreted the words I said as meaning something else.

This is most clearly noticeable in how I used the phrases “I like that”, “I want that” and “Can I have that?”. To me, those things express three different things but apparently to everyone else they only mean two.

Every time I said “I want that” people acted like I was asking for whatever I was referring to. I wasn’t. There was no request in the statement. I hadn’t asked for it. I was conveying the level of how much I liked it. It was an expression of envy, not demand.

While it’s true that I probably wouldn’t have complained if I was handed the object of desire, I understood that asking for things was rude. I was also aware that if I simply said that I liked something, that people would not know to what extent that I liked it. Was it something that just gave me fleeting pleasure or was it something that I would think about and remember and miss.

After, what was probably well over the hundredth time that I had been lectured about not constantly asking for things when I had simply expressed that “I wanted something”. I explained the difference in how I used language. I explained that I wasn’t asking for whatever trinket had fascinated me but differentiating between the things that I simply liked and the things I actively wanted to own. I understood that I wasn’t going to be given the thing.

This, however, didn’t build a bridge of better communication. It created a flustered lecturer who couldn’t figure out how I had come to think that words could be used so literally. I just had to be forced into more standard patterns of communication.

These distinctions may seem obvious or less rude now in a world where it is not uncommon for people to publicly declare a desire for things that they probably won’t ever own. A single all caps “WANT” in a tweet quoting another tweet featuring a luxury item is pretty common on Twitter. Or that same “WANT” posted as a comment on Facebook or Instagram is also a not infrequent occurrence.

At least I was using full sentences and expressing my desire with significantly calmer.

Nondisabled people far too often defend poorly conceived acts of “solidarity” that miss the mark by drawing attention to their intentions. They want to avoid consequences for the impact of their actions because they “didn’t mean it”.

Autistic people do not get the privilege of cloaking themselves in the armour of intentions even if their faux pas is just a failure of empathy and accommodation on the part of the person castigating them.

Autistic people have long been characterized as unempathetic little shits who lack theory of mind (the ability to place themselves in the shoes of others). Much new research rejects this and theorizes a different issue.

The Double Empathy Problem which posits that misunderstandings in communication are a two-way street, as much hampered by nonautistic people’s inability to empathize with autistic people.

Even though I could explain what I meant, I was miscommunicating and was rude. There was only ever need for me to change. Not the person who consistently and often willfully misunderstood me. They knew what I meant. I’d explained it clearly but I had to shift into an imprecise way of speech that was completely unnatural to me. It’s not something that I mastered until after I was diagnosed and could understand why I behaved differently than society expected me too.

The fact that I had a biologically ingrained reason for being the way I was, rather than a society which just uncritically follows and enforces cultural mores was irrelevant. The onus has always been on me to change to suit the comforts of neurotypicals. They never have to hold space for discomfort. They never have to hold awareness of me and my fellow autistics. They get to categorically define our behaviour as rude and wrong so that they do not need to empathize with us. We however, must constantly hold all that space and all that knowledge of their confusing expectations. They demand empathy without reciprocation. It is a wholely unequal power dynamic.

It is a battle we will inevitably lose because we are fighting against our very natures, simply to be allowed to exist in common space with neurotypical people and it’s a losing battle to fight your biology. We will always fall short of expectations and our “rudeness” is used to justify our exclusion.

How to Support My Work

So now for the very in-depth appeal for support for mu PhD. Please read through this, there are so many ways to help, including just sharing this blog post on social media.

Kindle ebooks read on my iPad are the easiest way for me to read and take notes unfortunately Amazon does not allow people to buy ebooks for others through their wishlist system. I have an Amazon Wish list anyway as some of the books can only be purchased in print or from third party sellers because they are out of print. If you could buy me one of the books that can only be had in print, I would greatly appreciate it. If you want to help fund the ebooks I’ll need you can buy me a gift card and send it to the following email address

The email is kimberleyjanephd@gmail.com

I will not be answering queries about my research through this email. It is solely a way for people who want to support my work to be able to do so. (this is a safety boundary). If you want to talk to me, find me on Twitter.

My research and supporting myself will get past the reading phase and there will be field work in my future. If you would like to help me fund my PhD in the long term you can

support me on patreon

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buy me a ko-fi

send me money via paypal

send an e money transfer to the email above (if you have scruples about third party sites)

I also have a generic disability wish list of things that would just improve my quality of life

Thank you for your ongoing support. and just an FYI I’m changing my name socially to Kimberley Jane Erin. You can call me Kim or Jane but I prefer Jane. I am however, not the least uncomfortable with Kim so don’t worry about messing up.

It’s time I really leaned into my identity as a scholar. I hope you’ll support me