How an Autism Diagnosis at 65 Shook My Sense of Self

When one year ago at age 65 I was diagnosed with autism, I thought I knew what I was getting into. Finally perhaps I could understand why I felt like an alien in this world, and perhaps finally I could silence the words of self-loathing. If my difficulties were not because of bad character and weak will, but was instead autism at their root, hopefully I could be more charitable with myself.

Yet as I opened more to my autism, I began to realize that I am not who I believed myself to be. This self-mythology, these long held beliefs, were being shaken apart. Now, with one foot forward, and then the next, I begin the slow journey towards understanding my autism, what it has meant in my life, and what it means now. Perhaps my travels will be of some use to others on this path.

At this point, so early in my journey, what self-myths are being shaken apart?

I believed I was strong and resilient in the face of the loud, bright, and stinky. Living into later adulthood with undiagnosed autism often is a process of hiding from things that pain us. Often ignorance has blinded us over the years. For me this has been especially true. As I begin to unwind myself, to unbrace, to accept and embrace my autism, the sensory truth of the world is revealed. Why would walking into a big box store make me dizzy and woozy, gripping the shopping cart for balance? I thought it was raw anxiety.

The truth: those fluorescent lights, the cavernous spaces, the crowds, they overwhelm my senses. Or when I close my eyes walking the dog in the brightness of day, the light overwhelms my vision. Or when I startle and jump like a spooked cat as metal water bottles tip to the floor or a kitchen blender unexpectedly is switched on behind me. Or when an unkind soul cooks broccoli and to me it smells of sewer. Or when I resist being touched. These are all examples of sensory overload, a feature I share with so many other autistics. It used to be that I would brace myself against these and other things, forcing myself not to show reaction. I am learning to allow my autistic self to react, and then to show compassion to myself and ask for understanding from those I might offend.

I believed I was the master of self-regulation. In actuality I am the master of dysregulation. I thought my internal storms to be other things, such as anxiety or hyperness. I would hide my dysregulation from myself and others through physical bracing and, frankly, blindness to my internal states. As I open to how my body actually feels, as I see my inner sensations for what they actually are and not what I guess them to be, I see a whirlwind. A spinning storm of energy with no name.

I have tried to control it with depression, with self-medicating, with a library of self help books, but failed to attune to the truth: as the autistic person that I am walks and lives in the bright, loud, smelly neurotypical world not designed for me, I simply cannot handle it well. My inner whirlwind spins out of control and I am twitchy like a windblown scarecrow. If my control lapses I will act like a jerk, to others but especially to myself. In fact right now my whirlwind spins over a silly misinterpreted email exchange.

I believed I was adept at emotional intelligence. Could I be alexithymic? Alexithymia, from Greek words literally meaning “lack of words for emotion,” at essence is difficulty identifying, describing, and expressing emotions. Were I to list a thousand personality features that do not apply to me, alexithymia would have been at the top of that list.

In truth, I am a super feeler. I can easily be overwhelmed by emotion. Yet, when my therapist handed me the Junto Emotion Wheel I literally went blank, the same blank I feel when people ask what I am feeling. I struggle to identify the specific feelings I have. It is like there is no nuance: I feel good, or bad, or neutral, but have trouble teasing out the subtle emotions that create those broad feelings. I am in another country, with people speaking a different language, and I can barely say hello. I will be exploring this country for a long time.

I believed I was skilled at reading people. I used to imagine myself as uniquely gifted at reading people, adept at reading the mystery of social cues, the nuances of body language, what people say beneath their chosen words. There is some truth in this myth. I do see and notice far too much, more than the average person, and am skilled (as many autistics are) at pattern recognition. Those qualities together create the myth that I am natural at reading people. Not so, and it certainly is not intuitive. Rather, my autistic brain notices people’s faces and behaviors and compares them to a vast mental database built over decades. This is a clunky process and too often is wrong and people often get mad at me.

I believed I sat on my hands because they were cold. Yes, I sit on my hands. I squeeze my arms into my torso. I brace my legs against the chair. I press my hands into the top of my skull. I unconsciously designed these and other postures to stop myself from “stimming.” Stims (really, self-stimulating behaviors, but that sounds too R rated for what they really are) are one way autistics work to regulate and control difficult internal energies and feelings. Unless I consciously force myself to stop, I will tap feet and hands and do strange things with my fingers and jiggle my knees when I stand or rock side to side and move in many other strange and quirky ways. I need these stims; they help me feel better and self-regulate. As daily my autism teaches me about myself, less and less I hide my stims from other people, although when I am alone they are very much amplified.

Bonus myth: I and others believed I was psychic. I say this partly in jest, but I seem to know things I should not know. It can be uncanny and unnerving to people for me to tell them truths about themselves that through some magic I have come to know. Yet now I understand the source of my knowing: My autistic brain both hyper-notices details and hyper-recognizes patterns. The very qualities that make the world so loud to me also allow me to perceive things others do not. It’s not magic. It’s autism!

And so it goes and continues to go. I am not who I thought I was, and as I learn more about my autistic self, no doubt I will encounter other self-myths I have held for decades. I’ll keep you posted.