Social Deficits

Posted: September 26th, 2016 | Author: | Filed under: Autism, Personal | Tags: , , | 1 Comment »

The Section A criteria for Autism Spectrum Disorder in the DSM-5 address “persistent deficits in social communication and social interaction across multiple contexts” and all three criteria must be present for a diagnosis. However, these criteria address broad categories that can be demonstrated in a variety of ways. Since much of what I’ll likely write about my experiences in future posts will, I’m sure, reflect difficulties with social interaction, I’m not going to explore each criterion individually in separate posts. Unlike Section B, which took more digging into my history and peeling back my compensating and masking behaviors, the Section A criteria were pretty obvious very early in my assessment. My wife apparently scored them even higher in one of the initial assessment questionnaires than I did. Basically, Section A covers three broad areas.

  1. Deficits in social-emotional reciprocity
  2. Deficits in non-verbal communicative behaviors
  3. Deficits in developing, maintaining, and understanding relationships

Even after explicitly and intentionally studying the rules of social communication for decades, I still routinely miss the mark. Sometimes I can quickly cover the slip based on the other person’s reaction. Sometimes I’m completely unaware of it and only know because my wife asks me about it afterwards. She’s been doing that for most of the 28 years we’ve been together even though neither of us had a clue I was autistic. I was just “socially awkward”. I also rarely know the appropriate emotional response. It’s not that I don’t care. I normally care deeply, even around people I don’t know well. Rather, my own emotional response is difficult to decipher, so my affect rarely reflects what I actually feel. I try to approximate an appropriate affect for the situation, but my success varies. I also struggle to understand what others are feeling. And even when I can work out what I’m feeling and can make a reasonable guess of what the other person is feeling, I still struggle to work out the proper thing to do or say. I have a strong tendency to monopolize conversations or to complete withdraw from them because I can’t tell when I’m supposed to speak or allow another to speak. And group social conversations are almost impossible. I do very well in presentations and public speaking, but those situations have relatively little reciprocity.

I struggle all the time to understand body language and expressions. Despite my lifelong practice at body language and expressions, mine are still atypical at best. When I forget to manage them, they actually convey unintended meanings and emotions I do not feel to others. My eye contact ranges from very poor when trying to say anything that’s hard for me to express to overly fixated when I’m trying to appear normal. It’s rarely typical. I have difficulty controlling my tone and volume. It varies from overly loud to too quiet based on feedback from others. I usually can’t tell myself.

And relationships have long been an issue. The bullying I actually remember from childhood was from people I thought were friends. I remember those all too common incidents because they made no sense. I think I was mocked and bullied by kids who weren’t my friends as well, but none of that sticks in my mind. Those people didn’t matter to me. For instance, there’s the day in, I think, 2nd grade where two of my friends held my arms while the third punched me in the stomach. From my perspective, it came out of nowhere. And it’s one of a number of incidents that have been fixed in my mind my whole life because I could never explain them. Now I at least understand that I missed all the social cues leading up to those reactions. I still don’t understand them, but I know I never will. The information necessary for the full context simply isn’t anywhere in my memories.

I’ve also been taken advantage of repeatedly in my life, sometimes in some pretty negative ways, because of my difficulty in this area. I guess I’m a pretty easy mark for con men. Looking back, I realize my early romantic relationships (including my first two teen marriages) were even more unusual than I had thought. Despite enormous desire and effort on my part, my relationships with my children have had mixed results. I seem to have gotten better at it over time since my youngest two remain close. My relationship with my older children is not what I would like, but I still don’t know how to improve it.

And I realize I don’t have any of the very long-term friendships almost everyone else seems to have. Everybody I know who is roughly my age or older has at least one or two close friends going back decades, often to high school or college. They may live in different places and talk infrequently, but when they do they are as close as ever. And they stay in touch and have for all those years. My father-in-law still keeps in touch with some friends going back 50 or 60 years! Those sorts of friendships are such a common and broadly shared phenomenon, they even come up in casual social conversations. But when I take stock, I have none.

That’s not to say that I have no friends. I think I get along relatively well with people and can move past the casual acquaintance level to one where we share things more broadly. So I can cross that threshold, but most of my friends remain situational. That is, we share a particular social context and get along within the confines of that context pretty well, sharing things about each other that go beyond the immediate context of our connection. But we don’t really connect outside that context, and when the connection through that particular social context ends, we go our separate ways. A few times in my life, I’ve managed to forge a friendship that is deeper than a particular situational context and which has endured on its own for a number of years. And yet, those have all eventually faded for reasons I don’t understand. I know friendships come and go for everyone, but usually there are at least a few that endure for most people.

The one enduring, voluntary relationship I have is with my wife and I’m extraordinarily grateful for her. She’s helped me navigate life and it’s difficult to see how I would be where I am without her. I quite literally can’t imagine what my life would have looked like if she hadn’t been with me every step of the way. My life was certainly a pretty thorough mess before she dove in head first and with her eyes open.

The social issues are where being autistic really bothers me. At this juncture in my life, I’ve developed a pretty good set of tools and supports to manage the restricted, repetitive patterns of behavior and interest outlined in Section B. The diagnosis gives me insight to further refine and improve that toolkit and seek additional support where I might need it. But my very best efforts have mostly just managed to get me through social interactions. I’ve survived, but I certainly have not thrived. And I wouldn’t have tried so hard for so long if it didn’t matter to me. If anything, my diagnosis has opened my eyes and made me realize I haven’t even done as well as I thought I was doing. And I didn’t think I was doing very well at all.

Deficit can be seen as a hard word, but I experience my social issues as real deficits. So I think it’s also an accurate word.


Life As Performance Revisited

Posted: September 10th, 2016 | Author: | Filed under: Autism, Personal | Tags: , , , | Comments Off on Life As Performance Revisited

I’ve been continuing the lengthy process of understanding my life through the lens of an autistic human being. Many interactions and events that had never made sense to me now have a context that finally does. Many of those events were stuck in my memory because I could not explain them. For decades, they’ve posed a puzzle I could not answer. Finally, things are beginning to click. There are also things going back to childhood that did not necessarily stand out to me before, but which are now resurfacing and look very different through this new lens.

I mentioned some of those things in my previous two posts, but I realize there’s a lot more to it. I remember it was a combination of my tendency to ‘sing’ under my breath in a monotone and speak in a sing-song voice along with my high-pitched voice and accent that led my mother to have me sit with a tape recorder in the first place. It wasn’t just about my accent. I also remember it wasn’t just listening to my own voice. I would listen to a recording (by my mother or others) of a passage, a literary work, or just individual sequences of words and then I would record myself saying the same, compare the two, and keep practicing until I could match inflection, tone, and accent. I did that for months almost every day and continued to use it as an occasional tool well into adulthood. I still sometimes do it when practicing for some sort of significant performance.

In another instance, I read a post in which another autistic person mentioned practicing expressions in a mirror as a child. I did exactly the same thing! I would spend hours sometimes as a child practicing different expressions in a mirror until I thought they looked ‘natural’ and conveyed the right emotion. Acting classes helped a lot. In those classes they explicitly taught how to convey emotions and meaning to the audience through voice, expressions, and body language. Even after I stopped spending lengthy periods of time practicing expressions and body language, I would continue to spot check my expressions in mirrors as the opportunity presented itself. Heck, I still do that today.

I have never quite mastered the art of processing all the verbal and non-verbal cues in real time conversations. I approximate it well enough that I believe I usually ‘pass’ as typical, but I’m consciously processing everything that’s happening while also trying to look ‘natural’ and relaxed. As a result, I’m usually slightly off-kilter or a beat behind (at best) in live interaction. And if things get too ‘off-script’ I quickly get lost. I usually try to make sure most interaction is in group situations and when that happens, I can step back and start nodding and otherwise look engaged while not speaking while I try to catch up.

I dread one on one interaction with anyone with whom I’m not already comfortable. I quickly exhaust my scripts in those situations and they generally end awkwardly.

I also dread entering retail or other businesses and being approached or greeted by an employee. I consider it a success when I can get in and out without talking to anyone at all. My wife hates the self-service checkouts. I love them!

The phone has always made me extremely anxious. I hate making even normal calls such as┬ámaking an appointment at the doctor’s office. I can’t even explain it, really. I will often stare at the phone, steeling myself, and rehearsing what I will say. Then I usually try to blurt it all out right away as quickly as I can. The worst is when I do that and the person says they’ll need to transfer me and I’ll have to do it all again. I’ve always pretended nonchalance or casually asked my wife if she could call where I could. But facing the phone in private has always been a nightmare. And again, I never understood why.

So I guess I really don’t ‘look autistic’ or at least autistic enough to register to most people. Instead, I’m just quirky and eccentric. But that ‘look’ has come from intentional, life-long practice and very deliberate effort.

Most of my life truly has been a performance.