I diagnosed myself as autistic, via some online tests, a couple, three, four years ago. I was officially diagnosed about five months ago by a professional. It’s been a process.
Maybe eleven or twelve years ago I suspected I was autistic. (Actually when I was fifteen years old I sort of knew, but that’s a story for another day). “I think I might be autistic,” I told my then therapist. She was helping me work through the question of whether I would leave my current ministry or not.
She laughed. “You’re the opposite of autistic,” she said, “don’t worry you’re not autistic.” It was the most animated I’d ever seen her.
I hung in there. “I’m not worried about it. It would simply be helpful to know. It would make sense of a lot of things. I’d like my past to make more sense.”
She said, “You connect with other people, you have great verbal skills, you’re self aware, you have empathy. Autistic people can do none of those things! Believe me, you’re not autistic.”
I said, “I think I am. I’ve known this for a long time. I was not always able to connect, or be verbal. I’m beginning to get clear on how I was as a kid and a young adult. I feel like I grew out of it, or trained myself out of it, sort of. I learned how to fit in. But it has all piled up. I feel like I’m made out of iron, rigid, and strong. But I’m like an old rusting bridge. As a structure I’m about to fall apart. The pieces are loosening. And I think some people are noticing.”
Truly, I was terrified I’d be found out. I’d worked so hard to be organized in my job, to do everything, and to do everything well, but I knew the cracks were showing. I needed some place to fall apart, and someone to help me put Humpty Dumpty back together again, after I did. But where? And who?
The therapist said something like, “That’s exactly what I mean. You’re too self aware.”
When I told all this to my brilliant, empathetic, straight-forward, forty-something year old therapist, she said: “Those are the myths still out there about autistics. That we have no empathy. Can’t look people in the eye. That we have low IQ’s, no verbal skills, no self awareness. You have empathy, intelligence, verbal skills, and self-awareness. and you are autistic. Your therapist’s training was outdated. She couldn’t hear you out. Even these days therapists might get fifteen minutes on autism in their training.”
When my new therapist speaks to my concerns, it’s like she’s handing me a direct line to an oxygen tank. I’ve been oxygen deprived all my life. She is my lifeline. She is not only autistic herself, but queer, like me. It took me forever to find her. It took what has become a movement of autistics speaking out for themselves, and for those amongst us who can’t speak for themselves, to form and to organize, for me to be able to find her. She’s been a part of that grass roots organizing.
During the twelve years after the other therapist un-diagnosed me, I tried three others. One was a neuropsychiatrist. Or something like that. I figured he’d know how to test me and treat me. He was an expert on the brain right? I was willing to shell out some big bucks to go to someone who knew their stuff. I needed to understand my meltdowns, why they came over me so suddenly, what they were about. By then I’d taken to driving to Jordan Lake, parking my car on the concrete boat ramp and contemplating driving in with the windows up. But I didn’t really want to. I didn’t want to die. I’d think to myself: so then why am I here, why am I imagining doing that, when I don’t actually want to die. It came to me. This is the Spirit letting you know you need help. Dramatizing it for you. Get the picture? Go get help.
I kinda want to say now, to the Presence, you have been with me all along, I know this, but you sure did take your time, after that day. Like, another eight or nine years! Not that there hasn’t been some truly good stuff along the way, lots of learning, piles of writing, recovery, but I mean, really, this “all in God’s time,” shit. Bad joke.
Anyway, the psychiatrist guy I went to for the help the Spirit told me to get, didn’t help at all. “What you’re describing” he said, “could be about childhood trauma. Or it could be autism. It will take me some time to figure out which it is.”
I didn’t have that kind of time. I wanted an anti-depressant to get me through the suicidal ideations and the anxiety first. He disagreed. He needed more time on that question too. So I fired his $250.00 an hour ass.
Soon after that, light dawned. Hunh, can’t a primary care doctor write prescriptions for anti-depressants? I love my doctor. I’ve gone to her for fifteen years, and she knows me, sort of. She listens deeply, and I always feel heard. I made an appointment. I told her I was depressed. She gave me a pre-printed list of questions, scored it, rated it. Diagnosed me as being in the throes of a Major Depressive Episode. Gave me a low dose of of Sertraline. It helped. No therapy though, and I didn’t bring up the subject of autism, much less that I’d been using wine as a sedative and a sleep aide.
After the Neuro dude I tried out another couple of therapists. Clueless. I had quit ministry by this time. I began to drink more. Wine mostly. At night. Alone. When I was in ministry I’d been able to keep the beast at bay, without much trouble. Alcohol and I were well acquainted in my college days, and into my twenties. But while in ministry, I learned to “manage” it. There were plenty of guard rails to keep me on the straight and narrow: workaholism, self-image, fear of failure and exposure. Thankfully the downward slide after retirement was swift. I knew where to go for help on that issue, having been married to two recovering alcoholics (currently each has 37 years of sobriety), and from having been a member of Al-Anon, off and on, since 1989. So I took myself to AA. I love the spiritual program of AA, and the community of fellow travelers. But a big piece of the puzzle was still missing.
And here’s the cool thing. I had quit searching on the autism subject, given up, but meanwhile other people were out in the world doing the work. It’s kind of like how I gave up on religion for being patriarchal, and misogynistic, and then found Unitarian Universalism, in 1985, in Provincetown MA. I looked about me in awe the first Sunday I attended a service at the Meeting House. Straight couples and individuals, gay and lesbian couples and individuals, trans persons of a great variety, transvestites (we still used that word in the 80’s) sporting feather boas, proudly and boldly parading their way into the weathered old, boxy, New England pews. And the language that was used! Wholly inclusive, in both hymns and readings. I wept. Of course I did. Where had these people been all my life? I mean I knew them, from the bars, but I didn’t know they went to church!
I was humbled as a realization came to me. While I was out there, for about a decade, complaining about religion, people all across the country had been developing a new way to do it. And so I became a U.U. And eventually a U.U minister.
And more recently, same thing with Christianity. All that attitude, all that complaining on my part, while women and queer people, were busy changing the (progressive) Christian culture from within. So that people like me can now sidle back into a church and feel more at home. I should add this though. I do think that those of us doing the work of inclusion on the “outside,” helped out those trying to do it on the inside. Nevertheless…I do thank all a y’all who leaned on the inner walls.
And. So too autism. In the past decade or so, after I dropped out of the search for my Neuro tribe, a subset of autistics has been out there creating a place for us. When I used my search engine on the subject after almost ten years of letting it all go, there it was. The word “neuro-divergent” popped up. It has become almost mainstream. Even a little trendy. Actually, the term has been around since the 80’s, but I don’t think it would have popped up on the internet ten years ago. Anyway, I missed it. And what a difference a decade makes!
Back when I first started looking, all the studies had been on boys. I hadn’t been able to find any on girls, so I had no lens by which to look back at my young self in particular. Why is that important to me now? Well, when I was falling apart, later on in life, had I a clearer explanation for my difficulties as a young person, I would have recognized how those same issues continued to operate just under the surface of the very carefully managed operational self I had developed. To know is a kind of freedom. Self-judgment and shame, fall away. Those coping mechanisms which are so useful, but make you feel like a fake, can be re-evaluated. Knowing who we are, and were, is important to peace of mind, and progress.
As to being an autistic girl, my therapist says, “yes, those who are assigned female at birth, in particular, are ignored. Girls tend to internalize more often than act out, we’re trained that way. So withdrawing, as you did back then, goes unnoticed sometimes in autistic girls.”
I had wondered as much back when I was trying to find myself in the studies about boys. And I had recognized myself in parts of the studies I’d read years ago. For example, I was “selectively mute.” The term is no longer used, I’m told, but “non-talking” (the accepted term) doesn’t seem accurate for me either. I did talk, a lot, sometimes. Selective is misleading as well, because it sounds like one makes a choice. There was no choice. It was absolutely impossible for me to speak in a myriad of circumstances, particularly the classroom. It was more like situations selected me.
I also had multiple sensory issues. Difficulty with certain noises, massive directional issues, issues with certain forms of light, textures. Plus social issues regarding how to be in groups, and spacing out in order to cope with too much sensory input and so on.
Walking the halls in elementary school and junior high was hell. Being in a classroom where you had to raise your hand to ask a question? Impossible. There’s something called “fork theory” that describes the sensory experience of some autistics.
"Fork theory was first introduced in 2018 by neurodivergent blogger Jenrose to describe life’s challenges and barriers, and how they can accumulate to the point of overwhelm.
Think of each challenge or stressor as a fork poking at your body. You might be able to tolerate several smaller forks – a scratchy clothing tag or the flicker of a fluorescent light, for example. Keep adding more forks, though, and eventually you’ll reach your limit.” (by Cara Copeland, quoted in numerous online posts)
Hey try 1,000 forks simultaneously. When I think about school, it’s no wonder I shut down. Melted down sometimes. I could not process all the stimuli. All I could do was shut it out. Completely. As for the smaller things, like textures. The way I grew up, you didn’t complain, and you most definitely didn’t get to choose what you ate. You ate what was on your plate. “You’re the Princess and the Pea,” Mom would sigh about me. I never understood why. It must have been about those times when I didn’t want to wear something, or eat something, or complained about the texture of the Walnut Acres natural peanut butter. And she’d shake her head. I probably understood that story. If you’re hyper-sensitive, then yeah, a pea under a mattress is actually pretty symbolic of how little it takes to feel a fork in your back. I learned to feel ashamed. About so many things.
I did inch out of the neuro closet a bit in my fifties. I’d tell people, when it was necessary, I have “sensory processing disorder.” A term I’d found online. I thought it sounded better than autism. Less of a stigma.
When it came to autism, I still had in mind the image of a boy rocking in a room, not talking. Or acting out. Just as I’d once thought, though I knew better, that I couldn’t be an alcoholic unless I ended up on a curb in the Bowery swigging Vodka out of a brown paper bag. While I never ended up a low bottom alcoholic (I knew to get off the elevator before it got down to the basement, thank you Lisa), I did in some ways fit the stereotypical autism image. I just knew how to hide it. In fact I did rock, in private, in bathroom stalls, in closets, in my own room, and still do. But I could talk. I could communicate, with my family anyway. I made friends. So I couldn’t be autistic.
It’s just that my wiring got switched somehow, I’d think to myself. I’d always known that. Like how I’d had to turn the mouse on my computer upside down on the mouse pad. How when I was in modern dance class in High School, I’d tell my body to go one way and it went the other, especially if I was looking in a mirror. I’m still pissed at that dance teacher for giving me a D.
When I was in sixth grade at Parkway Elementary School, I’d get permission to go to the Girls’ Room, and then I’d scuttle down to the little hallway that made a kind of bridge between the two long hallways that were lined by classroom doors. I’d dash back and forth a couple times, to make sure no one was coming down either hallway. Then I’d calculate how much time I’d have if someone came out of one of the closest doors. Terrified, and at the same time relieved, ’d spin, and spin and spin from one end to the other.
Spinning, I now know, is a form of stimming. Stimming is a repetitive movement or noise that helps autistics manage emotions and cope in general. I used noises too. Still do. I’m just careful where I do it. If I need to verbally stim in public, I do it very carefully, and softly. I’ve done it making my way down many a Boston street, while in Div School, and on many a subway too. Just didn’t know that’s what I was doing, only knew I had to be careful. Another thing I did, for a long time, was to type out my thoughts on my knees, or the table. A great way to stim, BTW.
I told my therapist about some of the ways I trained myself to look normal as a kid. How I’d read somewhere that honest people look other people straight in the eye. And that I’d been taught by my parents (if only in word, not deed) to value honesty above all else. But I had a hard time looking directly at people, there was simply too much information in people’s eyes, heck in their whole bodies. Bodies teem, some of you know what I’m talking about, with sensory information. It’s all too much to handle. What can you do but look away? In some cultures it’s rude to look people in the eye. I kinda get that. But I wanted to be an honest person and ours is the culture I’d been born into.
So, at some point in childhood, I don’t remember exactly when, I began a practice of ardently staring people down. Word to the wise: It works. Turning your eyes into lasers can burn through all that excess sensory data. It’s also tiring and can wear down your brain, so needs to be followed by a good nap in due time. Also, sometimes it freaks people out.
I remember that too. How people, especially when I got older, began commenting on how intense I was. And I was. So I tried to be less intense. Tried to moderate the eye contact, especially in coffee hour after church. But there were settings, like that one, where I began to notice old behaviors slipping through my worn out old shields. Especially when I overworked, or did too much in a day, it all came back. All of it. I’d hit a wall at Board meetings (I know, who doesn’t), and have to bolt out, gritting my teeth. I noted that sometimes I was spacing out when I listened to people, my eyes drifting off, glazing over. I’d have to bring myself back to the conversation, over and over. It was hard to find a middle ground.
That part might have been more about my ADHD, come to think of it.
Yup, I’ve “got” that too. I told my therapist the other day that I was afraid if I wrote about both ADHD and Autism this week people would say, OMG, she’s got everything! How could someone have everything. She’s so full of it.
“And,” I said to my therapist, “what about when I come out about being an alcoholic in recovery, and being queer! Well I’ve done that already, never dove back into the closet on that one. Not since I came out at twenty or so. But not about the alcoholic remedy for autistic meltdowns.”
Then before she had a chance to say anything I said, “Oh F-it. I might have, what, another twenty, twenty five years to live? What difference does it make what I say or what they think.”
She said, “and maybe someone out there needs to hear what you have to say.” Which made my various minister/codependent/shame-based, inner parts relax a bit. Because God forbid I might be the other N word. Narcissist. But if it’s not “all about me,” then it’s OK to talk about myself.
A side note. Aren’t we all narcissistic? Isn’t narcissism just another spectrum disorder? With healthy self-regard at one end, and Trump at the other? In my opinion, we all slide back and forth on the scale, like that little plastic thingie on a slide rule.
But back to my salvific therapist. After I expressed my worry about “having everything,” she administered more oxygen. “Of course you ‘have everything.’ Most of us autistics do.”
Here are the stats she then gave me, from medical and social work journals. She and I both love stats. All autistics do. Kidding. Remember, “when you’ve met one autistic, you’ve met one autistic.”
Up to 69% of autistics are queer (she was using queer as an umbrella term for anyone who diverges from the heterosexual norm).
Up to 85% of autistics are also ADHD (Doesn’t go in the other direction. In other words, 85% of ADHD are not autistic)
22.5% of trans persons have an autism diagnosis.
9 out of 10 autistic women have experienced sexual violence or abuse.
35-38% of autistic people attempt suicide.
85% of autistic college grads are unemployed.
I’ll end there.
Thanks for listening.
You write about this so clearly. Thank you for just saying what you need to say. And for believing that many of your readers want to hear this.
All is well for an old, queer, recovering alcoholic (46)!