Anti NT or misanthropy (part 2)
Q and A Continuation from last time. With my answer to a followup question based on my response and your comments. (It is a long one, but certainly worth the read.)
Q: Thank you for your response and your patience. I am grateful for your time. I didn’t know about face-blindness and that helped me understand the overarching imagery of your blog with much more clarity. I had initially saw what I understood to be an overly schematic division between the “neurotypical world” and the “neurodiverse autistic world”. An understanding of face-blindness, and in particular a very poignant thing you said to me: “I have a theory that my face blindness is tied to the pain it takes to look people in the eyes, and when people are kind or loving it makes it easier to do so” really helpful to me in understanding the overall meaning of what you’re doing and made me appreciate the whole page much more.
I’d also like to make it very clear that it is not a form of “victim-blaming” that I am advocating. In fact, if it wasn’t clear from my response, I was also diagnosed on the autistic spectrum and am trying to understand what a productive way of talking about autism is. My point is not to justify people who see in vulnerability an opportunity for exploitation or in diversity an excuse for violence. My question was to what extent the distinction between neurotypical and non-neurotypical/autistic is a meaningful one. But I understand my question may not have been articulated clearly enough. Nathan’s answer and the comments helped me to refine the question further. My question, stripped down a bit is whether identity politics is a productive/accurate way of talking about autism. Can the diagnosis exhaust its usefulness eventually and be discarded?
One comment struck me as a particularly thought provoking:
‘I think I got confused because they said things like "my struggle with autism" rather than saying "in my experiences as an autistic person" and "it doesn't penetrate very deep into my identity". It was confusing for me because it was worded like a not autistic person speaking or maybe it is common for people to not feel their autistic identity is deeply engrained in them? I am fully autistic all the time, my autism and me are one and the same, completely inseparable, and have been since before I ever had the words to describe it.’
From a lot of the comments, it seems pretty evident that a lot of people perceive autism as an entrenched part of their identity.
As a child I was diagnosed with Asperger syndrome following a long series of behavioural “incidents” in the classroom and subjected to psychological and pedagogical attention throughout my childhood in America. I didn’t like most of it and found it unhelpful and sometimes demeaning. Once I moved out of the states to Europe, I decided I would not think of myself as tied to the terms “neurodiversity” and “autism”, terms at best problematic, vague and difficult to define. I perceived “autism” as a limit to my liberty of thought, and as such, I rebelled against it. At the age of 18, I burned every single document relating to autism in a bonfire in my garden. Out of all the cinders; I found of fragment of page survived, burnt into the shape of a heart. It felt deeply meaningful. Discussing with my parents, though, they told me that I was right to do what I did, but there was one document I shouldn’t have burnt. That document was my diagnosis. They claimed the doctor who wrote it was an empathetic man and that his diagnosis had made raising me a lot easier.
So, I flew back to America after 12 years and went to visit him. He asked me if I was aware that Asperger’s had been since removed from the DSM IV and was no longer considered a valid diagnosis. I was. At the end of our conversation he told me ‘I’m not sure I would diagnose you with autism anymore’.
What if tomorrow autism as a whole ceased to be considered clinically valid? The concept of Autism was introduced in a clinical context. Since its first theorization the incidence rate has risen from 1:20.000 to 1:68. It’s becoming more and more an open spectrum. A mentor I respect told me that “we are all on it”. I was taken aback, but not entirely unconvinced. What if the label of autism begins to become an obstacle to thinking about oneself? At its essence, it remains a clinical term, designed to help people access the help they need to survive and thrive. To the extent in which it is a tag used to access resources and support, it has a clear function. When something becomes an entrenched part of people’s identity, on the other hand, it becomes very difficult to think clearly about it. Basically, I want to draw attention to the clinical context to which the label of “autism” refers and question whether thinking about the challenges and strengths it broadly identifies in terms of identity is the best way of understanding them.
Your story of face-blindness and not knowing who to trust and the invitation to step in your space made sense to me in a way that it hadn’t before, and I thank you for taking the time to explain it to me. You told me not to take your comics out of context as I had sent you photos from your comics to justify my claims in my previous question. That was a fair piece of criticism. Having read more widely, you state your basic claim as a claim to want to educate people about the challenges faced by people on the spectrum. That’s great. You defend autistic people against the ignorance of those who would define autism as some sort of disease. That’s great too.
On one hand, I’ve come to see a powerful story about an individual struggling to survive as themselves, without bending to dangerous messages in an alien and often hostile world. On the other, some posts (and fan engagement) run the risk of reinforcing an “autism clique” mentality. My fear in relation to your blog was that it simplified relationships between the “autistic” and “neurotypical” world to a binary that reduces nuance and introduces partisan rhetoric where it is not productive. I have seen thanks to your kind response that your page is much, much more than that. But I have also seen that for some people autism is very much an identity (maybe even self-diagnosed, which raises a bunch of other issues) that they define against neurotypicality. My question is: Can a diagnosis exhaust its usefulness? Can it be discarded?
A: All very well thought out concepts. There is definitely a "clique" mentality in the Autism world, and (not but) the same can be said about the Neurotypical one. There is a book called "neurotribes" I believe that covers exactly that. But that in itself somewhat negates the "we are all Autistic" mentality as well. I too had a mentor I truly respected that believe something similar, but mentors are human too, and not everyone (no matter how intelligent) knows everything or at least knows enough about everything to come to the correct logical conclusion.
Saying "we are all on the spectrum" as a Neurotypical is quite similar to saying "we are all people of color" as a "white" person. In both cases, yes, we are all part of the human race, but trying to lump in the majority group with the minority group ends up robbing them of the struggles that they face exclusively. Often times those struggles come from the very group of people claiming to be "one with them."
There are social, and mental constructs in the Neurotypical world that specifically and non specifically exclude us from participating, or succeeding in society. If we were indeed all on the spectrum, there would not be a discrepancy in things like employment, lacking friendships, and relationships, and depression, and suicide rates. We are much more likely to have issues with those things as our Neurotypical counterparts, and those are things that set us apart.
I sensed from your original question your disdain for the separation, and a bit of your backstory with wanting to negate your diagnosis. Mostly because when I was re-diagnosed, I went through that phase. I didn't know what it meant, and all of the people around me seemed to act like it meant I was broken. And it didn't help that those very same people had treated me like I was fragile, broken, and "insane" my entire life. I literally went around thinking I was "mentally challenged" (not that there is anything wrong with that) because of the way people were treating me.
Almost to feeling like there was an elaborate setup similar to the Truman Show to give me almost a "normal life." Because, even my friends in school would go through moments and periods of acting like I was to be written off, and even hated me at times. Because of these things, when I went and got rediagnosed to get help with employment (which they failed to do) It hurt me at first. It made me believe something was wrong with me and made me feel I deserved all of the horrible things that had happened to me.
That is the essence of where "self-hating" Autistics come from. We get our diagnoses or maybe even have always had it, and we blame ourselves for being Autistic and all we are told that means. Because that's what the narrative is. The US vs THEM mentality is already in existence put in place by Neurotypical society. Groups like Autism Speaks raised money by dragging our Neurotype through the mud and accusing us of being burdens, perverts, and criminals.
And they have been the ones controlling the Autism debate from the Neurotypical side which leads to more Neurotypicals against us, and more Autistic people blaming themselves. Acceptance of us cannot come through self-degradation and self-subjugation. We are not lesser, we are different. We are equal, and in some ways superior. Just like they have superiority in some things as well.
We have always been here. The rise in cases of Autistic people is not only because there are more of us, but because we are finally at a place where we know what we are looking at and for. And diagnoses should lead to self-understanding, acceptance, and understanding from the people around you. Not self-loathing, mourning, and disdain from the people around you.
To your main question, Can a diagnosis exhaust its usefulness? Can it be discarded?
The issue it seems you are having is our segregation from the Neurotypical world. That segregation is sometimes forced on us, and sometimes self-imposed in a feeling I can easily explain as "you can't fire me I quit." or to paraphrase a spin on Groucho Marx "I refuse to be a part of any group that refuses to have me as a member." We push ourselves away from the group because we grew up with them pushing us away.
I have always strived for acceptance. To not get eyerolls every time I added my two cents to a conversation. I mimicked Neurotypicals for years after painstakingly building a costume made of their odd behaviors and norms, and when it fell flat I blamed myself and at times went into a deep depression because of it. But my self-esteem did not heal until I was given my diagnoses as an adult.
Not because it was a crutch I could lean on, but because it gave me the insight I needed to understand my past, my current situation, and what I could do about it. Being diagnosed can most certainly feel like the end of the world or a curse, but once you realize that it gives you this missing key to unlocking your own understanding it becomes so much more.
That's why you see Autistic people making it so much a part of their own identity the way you see other minority groups doing the same. That is who we are, and that is who we are proud to be. I am a part of many different groups that intersect with Neurotypicals. I am a man, I am tall, I am a martial artist, I am a musician, I am a multimedia artist, but I say I am Autistic in the same way one proudly proclaims their race, culture, or religion, because deep down, that is who I am, and who I am proud to be.
So, will that time the diagnoses become useful ever happen? Given that it is necessary for our self-understanding and the understanding of those around us, I would say not. Can it be discarded? Given that I spent my entire life struggling to find acceptance and success after me and my family all but ignored my childhood diagnosis and didn't manage to find it until my rediagnosis and self-acceptance, I would also have to answer no.
You can deny your diagnosis, and you can hide from it. You can build the most functional replica of what you think a Neurotypical thinks, sounds, and acts like like I did, and have it come crashing down like someone snipping a highwire from under you. But until you understand who you are, and accept it, you will be stuck in a much longer version of the movie Ground Hog Day where you fail to make it through the gate every single time.
The main goal is acceptance. A diagnoses, and pride in that diagnoses are not the culprits in what is holding us back from that. Prejudice, and certain social construct from the Neurotypical side, and as you stated anti-Neurotypical rhetoric (specifically mirroring the most extreme sides of the anti-Autistic community.) are the true culprits.
The arms have to be put down on both sides of the battlefield, but give that we are severely and drastically outnumbered, our people will have a significantly more trouble putting ours down until their side does.
That is what I am working towards. I am working both sides. I am trying to give self-acceptance to the Autism community, and trying to give critiques against because viciously anti-Neurotypical, while also attempting to get the Neurotypical side to understand us well enough to fix their issues with us, accept us, and create a world where we are not on the defensive.
There may be a day where a diagnosis does not mean the difference between understanding your oppression or not because one day (far in the future) there might not be any oppression. But that diagnosis will still give you valuable insight on how you should learn, how you should navigate life, how your brain works, and how you should use that to your advantage.
I hope that that helps you understand better.
-Nathan