Autism: Unacknowledged diagnosis, excluded identity
The lethal neurotypical strategy of ignoring neurodivergent identities
By Gu Kaizhi (c.345-c.406) - Detail from File: Gu Kaizhi 001.jpg, Public Domain.
Identity: that’s what this article is about. Everyone has one or more identity descriptors, more or less well integrated. The more integrated they are, the more likely we are to experience well being. Some parts of our identity are hidden from others, and some parts are hidden even from ourselves. Some parts are what constitutes our social identity, the way we want to be seen and acknowledged by other people and institutions.
Some identity descriptors are visible, others are not. For example, I’m an old person, I’m white, I’m athletic, and I’m short. All these things are visible. I have a nasty sacro-lumbar radiculopathy secondary to long COVID, I’m a Latina, a Leftist, a scientist, a recent orphan, and an autistic adult. These things are not visible. Some of them define me, others don’t. For example, the spinal issue doesn’t define me. Other people have decided to embrace the descriptor of “COVID long hauler” as a prominent part of their social identity: I support them. Being a scientist is absolutely part of my social identity, my social responsibility and my political activism. Being autistic is not only a prominent part of my social identity, but it’s a part of my identity that I cannot strip off, ignore, minimize or cure. Nor would I want to. Think about the spinal injury and resulting chronic pain: I’m working really hard to get rid of the pain and control the injury to avoid flare ups. I think it’s possible and I have the expertise to take action in this direction. Not autism.
It’s not that different from other silent or invisible identity descriptors (or conditions). The LGBT+ community struggles with it and is all over the news with the controversy caused by their successful advocacy about language descriptors. Indigenous peoples struggled and still struggle with this: their identity is highly visible but the colonialist and imperialist agendas involve the destruction of any trace of it. We all learned about the horrible things done in residential schools in the name of “assimilation”, or “saving the man by killing the Indian”. All visible signs of their identity were violently repressed for centuries: their hair was cut, their languages were forbidden, as well as their traditional clothes and jewelry. But the brown color of their skin cannot be erased. It made them targets of white supremacy.
And what is the invisible or silent identity that we must acknowledge on others? Simple: the one they tell us to.
But it doesn’t work that way, does it?
A couple of days ago I read a twitter thread by an autistic person asking other autistic adults about their experience in revealing their diagnosis. Did the neurotypical people in their close circle acknowledge it? Did they consider making adjustments to accommodate autistic needs in a predominantly neurotypical society? Did these close neurotypical persons even show a willingness to accept their relative, co-worker or friend’s autistic identity?
The answer from dozens, perhaps over a hundred respondents, was “nope”.
That question was asked online, in autistic circles, many times this year alone. The answer has not changed: neurotypical individuals, even if they struggle with another type of “invisible identity/condition”, resist or even refuse to acknowledge the autistic identity of others. Not any others, though.
What autistic others are preferentially denied acknowledgement of their identity?
Family members. From the digital input, family is the most cited “DX-hostile” environment, followed by work, and finally friends and acquaintances.
Before addressing this question in particular, let’s go over what being diagnosed means for autistic people, as well as other neurodivergent people.
Autistic people celebrate their diagnosis (DX).
That’s an important difference between the autism DX and an actual disease, like COVID19, tuberculosis, Amyotrophic Lateral Sclerosis, or Crohn’s disease. I’ve never seen anybody celebrate a positive cancer test. The reason for that is that even if the autistic person accepts the psychiatric nosological system, even if they agree that they have a “disorder”, the perception that this “disorder” doesn’t enjoy the same ontological status as an infection is becoming more and more pervasive. What we hear from autistic people diagnosed as adults is that it was a huge relief, or that it explained a lot, and not only the negative phenotypical features.
Many of us, the activists for sure, understand autism as a combination of behavioral phenotypic traits and their associated neurological mechanisms. We cannot change it more than a type one diabetic can persuade their pancreas to manufacture insulin. A lot of that concerns our existence as “moral truth tellers”, as well as being totally or partially blind to the so-called social games. Social games are our undoing. Most autistic adults, regardless of how smart they are, are either unemployed or struggling with employment.
That’s important and defines our communication style. We tend to be logical, rational, linear and organized. Unfortunately, we are also incapable of adjusting to a messy, illogical, irrational and malicious communication setting.
For a neurotypical person, acknowledging our autistic identity involves looking at themselves. My friends had no problem with it. In fact, it explained the weirdness in me that they had already gotten used to.
Not my family. When I disclosed my diagnosis, they ignored it. It was awkward. Easier by email.
My family is experiencing the final stages of its dysfunctionality, hopefully to die off as a project. In it, I was the “identified patient” all my life. The identified patient is a clinical expression to designate the person, in a dysfunctional family, that is chosen to manifest and suffer the symptoms of that group’s inner conflicts. They are the sin eater and the scapegoat, the child to be invalidated (the links will open the articles in which I described the secret forms of physical, sexual, and verbal abuse that happened to me, by my mother or by someone she gave permission to perform the abuse).
This “project” was established by our mother. She kept my Dad isolated from us, which was sold to everyone as his shortcoming. According to her, he had trouble communicating with his kids, so she “had” to intervene and micromanage our lives. She was happy to explain this to everyone she met. My Dad was very agreeable and played along. I only found out how that game worked when, as an older person, I realized that she didn’t let him speak and talked about him in the third person in his presence. I had to silence her to let him speak.
She also carefully programmed my three older siblings to act and speak as she did to me, perpetuating the invalidation.
She didn’t do that because of a distorted idea of helping me. She had no idea I needed help. She was disturbed, frequently enraged by my behavior and wanted to fix me. If I couldn’t be fixed, then I would be hurt.
For this family to use the word “autism” in reference to me is to admit that the horrors I endured actually happened.
I believe that many autistic adults that retain severe trauma experience the non-acknowledgement of their DX for the same reason. My experience is not unusual. Neurotypical parents, particularly the mothers, are the main constituents of the anti-autism organizations such as Autism Speaks. In their words, they “love the child and hate the autism”. Sounds like “kill the Indian to save the man”, doesn’t it? That’s because it is the same thing (Indians, disabled people and the mentally “different” were the first subjects of eugenics). Both claim that the target is essentially flawed, undesirable as they are, and wrong. Both need radical fixing. Radical fixing is impossible: there is no cure for something that is not a disease.
The next best option is making that child the “identified patient”.
Families like this won’t acknowledge our DXs. It kills the game they played their whole lives, a game that kept them together.
My solution was a complete break-up.
It was ugly, it revolved around my Dad’s death, one of the siblings kept provoking me until I lost it. It was over: from that day on, I established that they should only contact me through my lawyer.
I had intended to maintain some contact with my mother despite her negative role in my life. She has always been good at lying, and that includes lying to herself. She can create different versions of reality at will. She used to call this game “lets pretend”, and I hated it. But now she is almost 100 years old and she certainly adopted benign versions of what she did to me. At this point, since video-calls with me were something she was enjoying, why not, right?
That option is off the table now.
I lost my Dad, and I lost a family as well. But losing the “identified patient” role was more liberating than anything I experienced in the past decades.