Some Early Thoughts on My Late-Diagnosed Autism

Sometimes, you discover something that re-frames your entire life.

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It started out as a joke.

“Sometimes I think you’re autistic,” my wife said.

I don’t know when it was, or what the context might have been, but at some point in the past 12-24 months, this joke made its first appearance in my life.

And then it began to repeat. And then it stopped being a joke, and started being more real.

My wife tells me that our daughter Sophie, who is 19, was actually the one who said the joke was more likely than not to be true. She’d been looking at symptoms, and I had a lot of them. (I didn’t find this out until later).

Finally, at the end of December, tired of all the ribbing I’d been getting, I agreed to take a test. This test, to be specific. It’s available online, for free, so I figured I’d just do it and put this stupid meme to bed.

Instead, I scored a 143 on a test that grades responses as follows:

That puts me smack dab between “strong evidence for autism” and “very strong evidence for autism.”

I’ve since learned that self-diagnosis through tests like these is widely accepted in the Autism community. I assumed I had to get some kind of differential diagnostic. But there are problems, apparently, with those.

First, they’re very expensive, and insurance (not that I have any) often doesn’t cover them.

Second, they’re apparently biased towards certain groups, and are designed to seek out disabling behaviors for the purposes of determining things like public benefits. I’m not sure if this is true, but I’ve read that the tests are geared towards young males, which is where autism apparently most commonly manifests. Older folks, women, etc., don’t always get an accurate diagnosis.

I have to be honest, I was really surprised. I don’t know what, exactly, I thought autism looked like, but I certainly assumed I wasn’t it.

(Some people I know laughed and told me they knew all along.)

I knew, as I’ve written here before, that I had other issues that affected me. Complex trauma, ADHD, and OCD are all things I deal with on the regular. What I didn’t know was how similar some of their symptoms look to autistic characteristics.

At first, I was kind of in denial about it. I don’t know how to think of myself in these terms. But as time has gone on, I’ve begun to accept it. I still feel like a fake, because a doctor didn’t tell me. But at the same time, it has such profound explanatory power over things in my life — from sensory issues, to singular focus, to overwhelm, to emotional dysregulation, to particularities about the way I do certain things, and more — that I am becoming increasingly grateful to know that this is why I am the way that I am.

It’s quite possible that some of you, if you took a test, may be surprised with your results.

I posted a video online about my experiences the other day, and I got over ten thousand views and hundreds of comments, many of them from people who said that I was describing their lives, too. A bunch of them took the test, and found out that they, also, are on the spectrum.

Here is that video:

Not everything on the “common characteristics” lists apply to me. Then again, the experiences of people with autism really do vary widely. I find that the most well-known symptoms don’t all apply to me, which probably explains why I had no idea.

For one, many autistic people are known for having limited or delayed speech. But I’m apparently a hyperverbal autist, which is a real thing. Their characteristics include:

• A vast vocabulary that often surprises those around them.

• Advanced reading skills from a young age (Hyperlexia).

• A tendency to talk at length about specific topics of interest without recognizing when others are disengaged.

• Challenges with understanding sarcasm, jokes, and non-literal language.

• Difficulty interpreting the nuances of social communication, such as body language and facial expressions.

My mom used to tell this story about how at 18 months, I could speak in full sentences and knew my alphabet. People thought she was drilling me with flash cards or something, but she wasn’t. I was just a sponge. I always thought my own kids, who have all proven to have high verbal intelligence, would develop language as early as I did, but none of them did.

I also read very early. I was bored to death in kindergarten learning phonics, because I could already read books. I remember sitting outside after half-day kindergarten, conspicuously reading a book, so that when the older kids walked past my house after school (I lived a block away from the campus) I could impress them with my reading prowess.

I am notorious for holding court about topics like the Catholic Church, or UFO research, or whatever it is that I’m interested in, to the point of overwhelming people with information they didn’t ask for. It’s why I can jump on camera and talk for hours about this stuff, even without notes.

But I frequently mistake sarcasm and jokes for being serious, even mean-spirited comments. And although I’m mostly very socially adept, and learned to read facial expressions, tone, and body language at a young age (a survival skill in a home with an angry, volatile parent), I often over-analyze and misread even the people closest to me, sensing irritation or anger when they tell me it isn’t there.

The value in knowing the “why” of these things is that it helps me to re-frame and re-contextualize my life with a new understanding of why I am the way I am.

Many of the symptoms I identify with (there’s a longer list here that I cribbed the following from, so feel free to see if any of these match your own experience) are as follows:

Verbal/Social:

• using repeated words and phrases (echolalia), made-up words, technical or very literal speech, pauses, and sophisticated or advanced language

• finding it hard to judge pauses, turn-taking, or to be interrupted during conversations

• not engaging in a two-way conversation (for example, not asking other people questions about themselves)

• find following ‘social rules’ confusing [or irritating]

• talking in depth about their own interests, but not engaging in others’ interests

• being direct and honest in communicating opinions (often more direct and honest than people expect; for example, saying they don’t like something when they might have been expected to tell a 'polite' lie)

• difficulty telling the difference between someone being friendly or joking and someone trying to bully or hurt their feelings

• difficulty imagining experiences they have never had

• having a clear idea of right and wrong, and a strong sense of justice, but may struggle with grey areas or unclear rules.

Restricted/repetitive behaviors:

• a strong preference for routine

• distress when a routine changes

• enjoying order and benefiting from clearly defined rules

• using repetitive behaviors as a way of staying calm [rocking, bouncing, stimming with your hands]

• having strong passions and dedicated interests (sometimes known as ‘special interests’) for specific subjects/hobbies, that you/they can engage with intensely

• find engaging in their passions and dedicated interests calming and soothing

• finding it easy to focus on specific interests, but also find it difficult to disengage and move on to other tasks.

Sensory:

• being much more or much less sensitive to visual stimuli, sounds, smells or touch than other people

• seeking out sensory inputs, including visuals, sounds, smells or tactile stimuli and using them as a comfort

• showing strong distress, aversion or actively avoiding sources of sensory difficulty

• finding certain sounds, smells, feelings or foods particularly calming or enjoyable, such as colored lights or being tucked tightly into bed.

Anxious/Distressed Behavior:

• distressed behavior that may present as aggression (towards yourself/themselves or others)

• overwhelm and/or meltdowns – potentially from masking in social situations and needing to release the stress of doing so after returning to a ‘safe space’

• difficulties in school/workplace

• appearing withdrawn or finding it difficult to engage with when recovering from social situations (sometimes known as ‘shutdown)’

• being misunderstood by others

• reaching a point of breakdown, severe mental health difficulties or burnout.

Feeling Different:

• struggling with things that peers don’t (for example, socializing or daily tasks)

• experiencing things differently from peers

• having to put effort into behaviors that others seem to do automatically

• completing tasks in unusual or creative ways

• using coping strategies to make it through the day

• being excluded, bullied, or not fitting in with others

• finding it difficult to have meaningful relationships with people

• feeling they don’t understand how the world works

• not understanding the purpose of some typical social events

• not understanding their own identity or knowing who they are (this may be due to masking)

• confusion [or overwhelm] when there is a lack of structure

Professional/Academic Difficulties

• underachieving in education or in employment compared to what you/they appear to be capable of

• having difficulty remaining in employment due to problems maintaining relationships with colleagues and managers or because some workplaces or offices can be overwhelming environments

• finding it more difficult than most to answer interview questions, write CVs/applications and find employment

• having reached a point of breakdown, severe mental health difficulties or burnout.

That last one has been a real doozy. I’ve never held a job for more than three years, until I started 1P5. I lasted 7 in that one before I hit the wall and total burnout. Jobs in general are very hard for me, because I’m “too smart” in some respects for the job, and underperform in other areas because of the executive dysfunction. I’m a specialist, not a generalist. I found this Reddit thread confirming, but not consoling.

It’s a topic for another post, but I am beginning to suspect that being autistic may actually explain why my midlife crisis hit so hard, and why I burned out of Church and work simultaneously. I think I’d been trying to present as normal (they call it “masking”) for so long, I hit a point where I couldn’t do it anymore. I also suspect that the autistic characteristic of needing to understand how things work and not being able to make sense out of some of the Church’s core teachings (when stacked up against the reality I was observing daily) really kicked the legs out from under my faith.

I’ve spent a lot of my life trapped in self-loathing. I didn’t know why I couldn’t make myself do a number of things that normal people do. My wife has often gotten frustrated with me and told me that she needed me to be the “other adult” in the relationship — which meant applying executive function at a level I simply do not know how to do — and that she needed me to get out of my head and be present more often. She wanted me to plan more, but I swear to you I exist only in the moment. Tomorrow is forever away, and the past is gone. I am not strategic. I do not play chess. The only move on the board is the one right in front of me.

There are a lot of things I’m beginning to understand about myself now that never made sense before. And that’s helping me to stop beating myself up for not “measuring up” to expectations. If my brain works differently, it just works differently. Instead of fighting that, I need to find a way to work with it. No amount of guilt-tripping or chastising myself is going to change it.

This was the last thing I expected to facilitate the process of learning how to love and believe in myself, but I already see a change in that regard.

I still have a lot to figure out, but at least now, I know where to begin looking.

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Before I go, I want to leave you with one more video I made that might help you out if you’re beginning to wonder if you’re on the spectrum, too: