Thoughts

I hope this note finds everyone well. I’m writing today with a personal request regarding my father, __________.

I’m currently working on a book that explores autism—not just in clinical terms, but in how it shapes lives, relationships, and histories. As some of you may know, my father, __________, was autistic, and is a central part of this story, and yet, in many ways, he remains the least known person in my life.

Knowing that he was autistic, as I am (I was “diagnosed” last year), helps make sense of many things I once could not understand. Unfortunately, I know very little about the first fifty years of his life, only fragments of the two decades that followed, and mere glimpses of his final years.

I’m reaching out to all of you because I suspect there are memories (perhaps small ones, perhaps difficult ones) that might help me piece together who he was. Any story, however brief, however second-hand, however unsavory, is welcome. A childhood impression. A family photo. A moment observed. Even a sentence your parents once said in passing.

I understand that not everyone may have had a positive experience with my father. He could be very, very difficult. He hurt people. I’ve spent much of my life coming to terms with my own grievances. I’m not asking anyone to excuse him…but if there’s a way to understand him more clearly, I would like to try.

When I asked questions growing up (and even in adulthood), the most consistent answer I received was, “Your father isn’t well.” I believe that was said with care. But it left a silence I’ve lived with ever since.

So this is me, asking gently: If you have something to share, no matter how small, I would be grateful.

_____________________________________

Many of you have reached out to me with stories. I appreciate you so much. Apologies if I missed someone in my replies. 

Thanks to your help, I’m coming to grips with parts of this story I didn’t even know existed. Not small pieces, either. The sort of pieces whose absence was….incomprehensible? The sort of pieces that, when missing, result in a completely incoherent story. That result in a completely incomprehensible person.

When I’m done, I’d be happy to share some insight into my father with the interested among you (no need to reply here, but you can send me a private message). My father didn’t exist in a vacuum. He was part of a family. Most of the story will be upsetting, but if you ask for it I’ll assume you know yourself well enough to handle that sort of thing.

Because this week of your help alone has yielded so much important information, I’d ask that you continue sharing details with me, as you remember them. Maybe you feel resistance at the thought of sharing them. I understand. No one has an obligation to share anything they don’t want to. Maybe you think some things are better left alone. That is something I have a harder time with. And if you ever read this emerging story, you’ll know why I have a hard time with that. Because a lot of the upsetting parts of this story are the result of just that tendency: a control of narratives and knowledge that presumes one’s own worldview is superior to that of others. We’re talking about some serious generational trauma here…allowed to persist under the guise of good intentions.

No need for a polished email…single sentences with no punctuation, etc., are just fine. It doesn’t have to be a story, even. It can be a feeling you had or an impression you never fully explored.

None of these details will ever be published. The book I’m writing necessitates an understanding of the interplay between an inherent nature (that we call ‘autism’…along with a few other diagnostic labels) and its environment, but it isn’t about my father. My father’s story is a case study that I’d really rather not have. But here we are.

_____________________________________

Thanks for your kind words. To be honest, I still know embarrassingly little about the subject matter of my book. And I’m a bottom-up thinker, so my learning process is SLOWWW….

Your email is the first thing I read today and it made me feel good. And when I feel good, I overshare. That might be autism. Or it might be what an autistic person does when safe opportunities to share feel so rare. Or it might be that a diagnostic label like autism only makes sense in a certain system…a system where certain traits that are normally quite adaptive are pathologized. My book is an exploration of the last. It’s a giant footstomp against being told: “Good news. There’s a name for the way you are. It’s a disability. So just throw that name around and people will have to accommodate you.” But I don’t want to be accommodated. I never have.

Oh boy. Here is an early morning rambling I’ll almost certainly spend the rest of the day beating myself up over. 

You may know most of my ideas already. I have a hard time guessing how the things I say will be heard…so I either 1) over-hammer points (the way my father would feel the need to explain the history of juice before telling you he’d switched to the newest Five Alive, maybe); or 2)  go straight to a level of abstraction that presumes you know everything in my head already (which is how I adjust my behaviour when my over-hammering tendency gets brought to my attention enough times). In any one conversation, you’ll almost certainly get both from me.

Part of the autistic ‘experience’ is is the constant performances, and one of those performances is pretending to know what one’s talking about until one does. This is one of many behavioral patterns that emerge from the struggle to make sense of social models in which you’re presented with a set of rules that no one else seems to really follow. When you follow these rules you’re ridiculed. Don’t be so literal. When you break them you’re punished. You KNEW the rule. Everyone around you navigates this terrain with far less friction. It starts to feel like they have the real rulebook in their back pocket. Unlike others, I can’t seem to ‘let go’ of that friction. It constant agitates me. But on the outside, you perform. And when the majority of your life is a performance, eventually everything you say feels like a lie. But occasionally, a few days or months later, you’ll realize something you said was true. And you’ll be surprised. Very. You realize that these performances have become as much for yourself as they were for others. 

_____________________________________

Ugh…here is some more over-hammering.

As I was going through my morning routine, my mind kept going over how these things will be read by the family. Until I have the fullest story I can have, I’ll be purposely vague. But being vague invites all sorts of potential misunderstandings or objections. 

My father had a reputation for ruining the few family gatherings he attended. He would bring ugliness. I think those of you who lived through that might be feeling the same about me. He is his father, after all. Here’s this beautiful online family community we’ve created, where we share news of baptisms, memories of loved ones who’ve passed, and other uplifting news…here’s this guy hijacking the group as some sort of platform for his mid-life crisis. I hope no one sees me like that. I’m painfully aware of the impression I can make. It’s this awareness that partly explains my historic lack of participation with family (but I read everything!). Only partly, of course…there isn’t enough time in the day to explain all the reasons I tend to avoid group settings. And none of those reasons are a particular individual, etc.

There are huge elephants in the room that I have to address. 

First, I want you to know that I know my father’s behavior was, in many cases, grossly offensive. If you know what I mean by that, then you…already know. His behavior wasn’t harmful only under a certain light, or without a particular understanding…it was harmful, period. 

Second, I recognize the very real efforts made by family to help him. What I have to say is in no way a unilateral dismissal of those efforts. 

Next (and this is the hardest to address, by far), there are external circumstances of my life (in fact, probably most of the on-paper circumstances of my life) that make anything I have to say very easy to dismiss. I’ve come to understand that a big part of being a ‘high-functioning’ autistic person (i.e. an autistic person with lower support needs) is that you can blend in just enough to do some incredible damage to not only yourself, but others. I have two failed marriages under my belt, and three awesome children who understandably have some very mixed feelings about me. The behaviors I engaged in, the ones I engineered in order to access love and a feeling of belonging, meant making commitments that were well beyond my ability to keep. And if that sounds like self-serving bullshit to you…well, all I can say is that most days that’s what it sounds like to me, as well. 

The parallels between my father’s life and my own are tragic to the point of being comical (almost). We’ve both caused damage. I’ve arguably caused more than he did. I functioned ‘better’ and longer. When you’ve caused damage like that, you lose the right to speak. When you open your mouth, people expect sickness. It’s dismissed, wholesale. 

So a huge challenge (insurmountable, even) in explaining yourself as a late-diagnosed ‘high-functioning’ autistic person is the very real danger of having everything you say interpreted as self-serving bullshit. After this past year of corresponding with countless other late-diagnosed autistics, I can tell you this is an almost universal experience. The damage is already done. The collapse came too late. You managed to do X, so you sure as hell can do Y like the rest of us. Grow up. All you can do is shrink yourself and hope that the relational debts you (or, more accurately, the persona you created for others) incurred before your diagnosis will be somehow…forgiven? But you know they won’t be. Because you certainlywouldn’t forgive them.

The other challenge is that autism is largely a difference of degree, not of kind. When you try to explain it, people default to their own experiences. Using our own reference points, we assume everyone experiences the world the same way we do. If I were to present my challenges to you in a list, you’d relate to just about all of them. I don’t like loud environments, either. No one does. I have a hard time with hypocrisy, too–who doesn’t? I have a difficult time with change, too. I’ve felt awkward in social situations, who doesn’t? I do best with a routine, everyone does. But life simply isn’t like that. It really sounds like you just want to avoid challenging yourself. It sounds like you’re trying to rationalize avoiding what everyone would like to avoid, but is mature enough to tolerate. Etc. Autistic adults are 7 times more likely to commit suicide than your ‘average’ person. It’s a bit harder to explain stats like that away as laziness or immaturity or irresponsibility.

When I write, I either spend too much time explaining things people already know (which frustrates them) or I say things without explaining them properly (which frustrates them). I can never find find a happy medium.

I’ll try to explain what I mean by “feedback sensitivity.”

When I was diagnosed, I spent months watching the same videos and reading the same books most people watch and read after a late diagnosis. I had the same feelings (probably).

I wanted to know WHAT MY AUTISM WAS. At its core. People say these particular traits are not really autism–they’re co-morbidities. Ok. Let’s put those aside. Therapists say these particular thought / behavior patterns are the result of layered trauma (i.e. decades of being autistic in a “neurotypical” world). Fine. I can see that. Let’s put those aside, as well.

What’s left? What’s at the CORE of this label people give me (autistic/ADHD/OCD/etc.)?

I was left with a pretty short list of what I started to call core traits. Black-and-white thinking, a need for routine and predictability, a need for a certain level of novelty, deep focus, etc.

But lists don’t do much for me. They never have. They taunt the part of me that needs to reason inductively, to find a larger explanatory model. I wanted to know what was common to all of those traits. Where do they come from? What explains them?

(Like anyone would, I applied my own existing knowledge, biases, and frameworks to the task. I’m heavy into permaculture, ecology, evolution, anthropology, and a few other fields. These have always been my “special interests,” as the clinical lingo goes.)

I went down a lot of paths. Some of them were just wrong, and I had to double back. Some led me to the ideas you read about in my book work as it stands, but they sounded different at the time.
They weren’t completely wrong, but they were juvenile or incomplete.

For example, I toyed with the idea that I have a DRIVE and a NEED to seek out species-appropriate stimuli and environments (things that are good for humans, in general), and the extent to which I succeed…I’m FINE. The extent to which an environment or stimulus is NOT species-appropriate (not good for people, in general), I’m NOT fine. In fact, the parts of me that were just fine, strengths sometimes, in healthy environments, became disabilities. I still believe this…but I wasn’t happy with “species-appropriate.” Because it didn’t take long for me to realize that what I was talking about were things that were good for ALL forms of life (animals, plants)…not just people.

In the end, what I found to be common to all the traits on my list was: sensitivity. They were all forms of sensitivity. More or less sensitive to change than a neurotypical person. More sensitive to contradiction. To unpredictability. To sounds and smells. Still with the species-appropriate idea firmly in mind, I felt strongly (and still do) that the change I was overly sensitive to wasn’t a level of change that was good for any person…those people were just somehow less sensitive to it. The same went for contradiction. Contradiction doesn’t benefit anyone…it leads to most of the problems we see on the news. The sounds and smells I was “overly” sensitive to? They were the smells and sounds of activities that are harmful to all people (and all living things, really)…engines, synthetic perfumes, etc. So I’m sensitive to harmful things. But shouldn’t I be? Why isn’t everyone else?

I started to think about what allows a living thing succeed in an environment, and what causes it to fail. And I came back to a pretty fundamental principle: an animal succeeds depending on how well it can figure out the rules of a place. The better and faster it can understand the rules of a forest/prairie/pond/etc., and the better it can change its behavior to match those rules, the better it will survive and reproduce.

Break the “rules” of the forest, and you will be “corrected.” Walk through a patch of poison ivy, and you’ll be in discomfort for a week. Go out at the wrong time of day, and you’ll be eaten alive by mosquitoes. These “corrections” the forest is giving you are known as feedback. It’s sort of a strange thing to say because we think of “feedback” as something a person gives to you. Something that’s given to you on purpose. But in ecology, the consequences of your actions in a certain ecosystem are just that: feedback / correction.

So, on the whole, the more sensitive you are to that feedback, the better you’ll survive and reproduce. The better you can read signals and adjust your behavior by them, the more success you’ll have. It’s evolution 101.

With that in mind…I came back to my experience in the world as an autistic person. I’d established (in my mind, anyway) that my level of sensitivity is the right level of sensitivity for a living thing. I didn’t have to come up with hypothetical scenarios to prove this to myself, I spent a lot of my early years at my uncle’s or grandfather’s…remote off-grid places where I just…lived.

But here in this place….I AM dysfunctional. It doesn’t “feel” like I’m dysfunctional, I really am. And it’s that trait, that feedback sensitivity, that is doing the disabling. But that’s ridiculous, isn’t it? How could THE trait most responsible for a living thing’s success lead to disability?

So I tried flipping the narrative. What if it’s the place? What if every single one of my core traits are really just indicators of what’s wrong with this place? “Deep” focus? There’s nothing deep about my focus when I’m in the woods. It’s just focus. “Black-and-white” thinking? In nature? Are you kidding? That’s the only kind of thinking there is. Something is either true or it isn’t

I knew that this wasn’t a very nuanced argument. I knew there were holes. I knew that it was based on my own particular autism, my own particular need for supports, etc.

BUT….core traits, right? CO-morbidities, right? Trauma, right? These are NOT autism. They’re either something that occur with it (they can occur in people who are not autistic) or something that is the result of my “autism,” that core trait of feedback sensitivity, playing for a long time in a very dirty sandbox.

I hope this helps someone, somewhere.