My Life Comes to a Halt…
I looked down at the e-mail with apprehension. It had finally come. After decoding the file coded to protect my privacy as a patient, I could finally read the diagnosis: “ICD-10-CM Diagnosis: Autism Spectrum Disorder (F-84.0)” I sat there for a moment, dumbfounded. The cold, matter-of-fact words just stared up at me. I didn’t know whether to be horrified or elated. On the one hand, I should feel appalled that I had been diagnosed with a condition the medical Bible, the DSM-5, called “a mental disorder.” On the other hand, I was delighted and relieved with this diagnosis. For once, my life started to make a little more sense to me. And at the age of 82, that’s really saying something.
My life had come to an abrupt halt a few months before when all of a sudden, while coming out of a local restaurant, I crumpled, and found myself like a beached turtle, lying on the ground with my arms and legs flailing about helplessly. Later at the hospital, the doctor ordered an MRI of my head. The experience nearly deafened me. Then I was told: “You’ve had a small stroke. Well, to be more precise, the MRI shows that you’ve had three small strokes in the small arteries in the back of your neck. We are going to admit you.”
He went on to explain that it seems that I hadn’t had a hemorrhagic stroke, where a blood clot breaks off from the heart, ends up in the brain where it kills a section of brain cells. This often leads to paralysis on one side, loss of speech and often to amnesia. Instead, I had a stroke where the small vessels in the back of the neck have become occluded by the buildup of plaque. “You have some disruption of your speech and word retrieval and, of course, of balance,” he told me. Then he added “You were lucky.” Funny, I didn’t feel lucky!
There followed three humiliating weeks of being treated like a baby, and going to intensive physical, speech, and occupational (dexterity) therapy. Then I was pronounced well enough to go home — a home, it turned out, that had to be turned into the deck of a ship going into foul weather, with bars installed everywhere so that I could hang onto them when I felt dizzy. Which, it turned out, I needed.
My Boredom with Healing…
Then my life revolved around outpatient therapy, and hours upon hours of TV. I watched everything I could find anywhere. The good, the bad, and the ugly! Then I struck gold in a completely unexpected place, two shows by an Australian comedian who called herself “a little bit lesbian.” Both performances, “Nanette” and “Douglas,” brilliantly wove humor with incredibly painful stories of her life, and the butt of most of the humor in her show were entitled, straight, white men. In other words, me! But even so, I was completely mesmerized. It wasn’t until the end of her second show, “Douglas,” that I began to see why. She described herself as having been diagnosed with autism, and how liberated she felt by the diagnosis.
In her performance, she illustrated one of the moments she recognized that she just didn’t think like her peers. Her elementary school teacher was giving the class a lesson in prepositions. In it, the teacher used a box to illustrate how things could be described as inside, beside, and outside the box. The comedian got the point about the use of prepositions. She had been struck by the thought that she was related to the box. There was only one way that was possible. The box had to be alive! So she raised her hand with a question. “Can I eat the box?” she asked. At first the teacher tried to dissuade her from this line of thought. But the child wouldn’t stop her questions. Finally the teacher lost her patience, cursed her out, and threw her out of the class.
The Unthinkable Happens…
When I heard this, I imploded! The exact same thing had happened to me. Okay, it wasn’t with a lesson about prepositions. I was in an undergraduate physics class when I saw a relationship that was illustrated by an image that I saw a different meaning in than the teacher and the rest of the class. I pointed this out to the professor to his evident frustration. I too was ejected from the class! Suddenly I remembered a lifetime of causing havoc in groups by raising often off-the-wall observations. I saw a lifetime of my being ostracized. I often felt I had lived my life under a cloud of disruption that everyone else could see but me. Apparently this cloud was so bad, they wanted no part of it. Universally, I ended up being shunned by groups. Was it possible that I too was autistic? Impossible. Unthinkable. Autistic? Me? No way. I just couldn’t accept the idea that I was suffering from “a mental disorder.” So, I did what I always do. I researched the condition.
Checking with a Friend…
My best friend’s son is autistic and he needs a high level of support to navigate daily life. He also has incredible abilities in music. I didn’t identify at all with his set of challenges or abilities. Despite this, I decided to talk to my friend about my suspicions. To my surprise, he replied that he had guessed that I had some Asperger traits some years before. I Googled the term “Asperger’s,” and saw what my friend meant. Some of the attributes of Asperger’s I did identify with were: I hate small talk; I am very uncomfortable with large groups; I tend to hyper focus when I am working on something; I have a series of subjects I am passionate about, and will talk for hours about them to others long after they have ceased to be interested. The only successful job I have held for any period of time was as a consultant, particularly in system analysis. I used to joke that I was like a gunslinger in the old west. Everyone was happy when I was first called in to fix a problem like a hired gun handling cattle rustlers. When I had solved the problem, they were glad to see the back of me. After all, who wants to have a hired “killer” walking around town when the rustlers have all been removed?
Introducing the Spectrum…
Through conversations and learning more about autism, I have come to understand that autism could be characterized as having traits arranged as different colors on a wheel. Any individual could have a whole range of colors, or traits on that wheel at different levels of intensity. The individual I knew experienced one set of traits, and I experienced another. Both sets of traits are on the same color wheel which is the entirety of autism.
The immediate result of trying to adjust myself to this diagnosis was enormous relief. Even though I am quite bright, I have succeeded, then failed, and been thrown out of three or four careers. I had always secretly felt that I, and my attitudes, were the problem. Like I said, it’s like I have an ugly “cloud of disruption” hovering over me. At first, I am accepted (even welcomed) into any new area. Then gradually, over time, the group sees the impact of the cloud, and begins to ostracize me, until I am ejected from the group. I end up back on the pavement, feeling sorry for myself. Then gradually, over time, I bounce back, get a new passion, join a new group, and the cycle starts all over again. Now, for the first time, I had an inkling why.
Getting Tested…
Things had got to the point that I felt I needed to find out if I met the criteria for a diagnosis or not. So I set out to find a neuro-psychologist to test me. That turned out to be harder than I thought. Finally through a personal friend, I found a neuro-psychologist who said he would be happy to test me. The whole process took two weeks during which time I felt my mind was turned inside out. After another two weeks in which he reviewed my results, he came to the diagnosis: I was, indeed, autistic.
The Adventure Begins…
If the diagnosis was to be believed, there had to be other people out there with the same kinds of history that I had. I just had to find them. So I Googled “autism,” and found out there were indeed a whole slew of organizations for autistic people. I randomly chose one, AANE, partially because they seemed to have a number of groups on the web where I could “drop in,” no questions asked.
I soon found myself swimming in a pool with people who identified as autistic: tall ones, short ones, black or Latino or white, male or female or LGBTQ, unadorned, lonely, clever, challenged ones. In short, people of all shades or hues – a bath of humanity that just accepted me without question, allowing me to try to find my feet in this new world. What I found disturbed me at first. Yes, they were ordinary people. But there was something good about the experience of diving into a community of autistic people.
Stepping Through the Mirror
It took me a while to put my finger on what was different, I finally got a handle on a way to describe what had happened to me. It was as though I had entered a new world by walking through a mirror into a world where everyone and everything was reversed. It’s like a mirror image of the world I was more used to. Obviously I could see that what used to be right was now left, and vice versa, but I could feel there were deeper differences in how I and others saw things and functioned in this new world.
Then several things occurred to me. First, this wasn’t a disease condition that I had contracted, like COVID or the flu. I had been born this way, as the song puts it. I had suddenly woken up, and recognized the actual world I was living in. I saw that it was the life I had been living until that moment which had been the illusion! The second thing was this “mirror” was not a revolving door. Once I realized which side of the mirror I was on, there was no way to go back through the mirror again. For better or worse, I was awake now, and I could not go back to sleep and its dream world. All I had to do now was learn to live in this new world in which I found myself.