By Mette Ivie Harrison
I had wanted the diagnosis. I had been waiting for it for months. And still, it hit me hard. It rocked my world and my sense of self.
In January of 2017, I was given a formal diagnosis of “high-functioning autistic” (though some people still use the term “Asperger’s,” it is apparently no longer a technically correct one since the Autism Spectrum includes a wide range). Suddenly, it felt like everything I did was wrong. I was self-conscious in any social situation. While some things in my life made more sense (which was part of the reason I’d gone in for the diagnosis) it also felt like all of the things I had once thought unique and interesting about me turned out to be symptoms of autism, including:
1. An ability to hyper-focus on my work.
2. A lack of caring about other people’s opinions.
3. A certain detachment from social situations.
4. Less emotional upheaval in my life.
5. An exaggerated facility with words.
6. Not understanding much humor and having to pretend to laugh at things.
7. Taking things literally.
8. Being very gullible.
9. Rigidly adhering to rules (from the Word of Wisdom to my own personal schedule).
Some of the symptoms of my autism that were readily apparent to the diagnostician were:
1. Lack of eye contact (a classic symptom, but one I’d never recognized in myself).
2. Sensory sensitivity (from noise—even music—to smells, tastes, textures, and clothing).
3. Rapid speech combined with strangely formal language.
4. Interrupting others.
5. Not answering questions directly posed and instead going off on another topic entirely.
This diagnosis was excruciating to me. I had never felt so embarrassed in my life. I had always thought of myself as being incredibly capable and deeply sensitive to the feelings of others. I knew that I had some oddities, but I thought that they were limited to a set of quirks that most people would either accept or not even notice.
I felt self-conscious in every conversation I had for weeks afterward. Was I making enough eye contact? Too much? Was I using overly formal words? Was I interrupting? Was I speaking at a normal speed and with enough emotion? Did I answer the actual question someone asked, not just what I wanted to talk about? Was I boring other people by going on too long? Did I give other people an equal chance to participate in a conversation? I found myself not wanting to talk at all, going silent in many situations—another classic symptom of autism.
In talking to a therapist, I realized that most of my life I had been working around my autism. I was “highly successful” because I had figured out ways to mask my disability and highlight my areas of competence.
It was also true that I was a bit of a savant. I finished my B.A. less than two years after I graduated from high school and an M.A. a few months later, so I began my Ph.D. program at Princeton at the age of nineteen. For a while, some of my professors were willing to chalk up some of my strange and oblivious behavior to my age, but I can look back now and see that at some point, that probably wasn’t enough of an explanation for my blurting out things inappropriate to the situation, asking the wrong questions, and misunderstanding people’s intentions.
After I left academia, I finally found the courage to do what I had been saying I wanted to do since I was in Kindergarten: write fiction. Over the next five years, I threw myself into a writing career with all the focus that a high-functioning autistic person can muster (which is a lot). I wrote twenty full novels and a bunch of partials, along with some short fiction. And that involved a lot of rewriting because I was, frankly, very bad to begin with.
But with my intense focus, I learned quickly what I was doing wrong. Humility and hard work were my watchwords and they served me well. A joke in my writing group was that in the two weeks between our meetings, I would always write a whole new novel to bring in. Unless I had had a baby, and then I would write two novels (haha—this is a joke!), one just while I was in labor.
Writing was a perfect career for someone with high-functioning autism who was good with language. I’d studied German for many years, but had also learned Spanish, French, Greek, and Latin. I loved language. I loved seeing the rules for putting grammar together. I easily memorized vocabulary. But most of all, I liked seeing how culture was revealed through language. I was good at explaining a lot of things about humans and how they interacted. It’s one of the reasons that I never suspected I had autism. I was very good at figuring people out—not intuitively, but through analysis.
Though I have an abstract understanding of people and culture, they don’t always make sense to me. For example, I spent some years in high school trying to dress “normally” and do hair and makeup, but the pretense paled after a while. A friend once told me that I must be “super confident” since I don’t feel the need to put on makeup before I go out to run errands for the day. But the fact is, I don’t notice the difference between people who wear makeup and do their hair and those who don’t.
I also don’t notice the looks of people who are internally criticizing my appearance. If they don’t come right out and say it to me, I don’t get insults at all, and sometimes not even then. I don’t feel a desire to “fit in” or to be like other people.
It’s also true that I don’t have a need for regular social contact in the way that others do. For a long time, I thought of myself as an “introvert,” which many of my writer friends described as having the need to spend time alone to recharge, and the tendency to feel overwhelmed after too many hours with large groups of people. I certainly feel those same things, but for me, there is another component. Unlike other writer friends, who like to go out to cafes or the library to write, or who have frequent “writing dates” with friends, or “retreats,” I don’t feel a desire to do any of those things.
One of the questions that I was asked repeatedly during the long battery of tests I went through before my official diagnosis was “Are you ever lonely?” The answer was always no. I genuinely don’t know what loneliness feels like. Maybe I’m so oblivious to my own feelings that I’ve never noticed feeling lonely. Perhaps my loneliness feels completely different from what my friends describe or what I’ve read about in fiction. I am perfectly happy to spend all day every day in isolation. I like to think alone. I like to write alone. I like to live in silence as much as I can, since noise is often overwhelming and distracting, as social interaction can be when I know I’m missing a lot of what’s going on, but can never get people to explain it to me.
What does all this have to do with religion?
My therapist has pointed out several ways Mormonism makes life easier for those of us with social disabilities. We are given premade friends and helpers, from visiting teachers to home teachers. We are sorted by age into smaller classes as children and youth so we can get to know each other better and are in some sense directed to friendships there. As adults, we know that wherever we move, there will be people to help unload boxes, and smiling faces to introduce themselves to us on Sunday. We will be given a calling almost immediately, which will further grease the social wheels of the Mormon handcart of friendship.
But in 2005, I lost my sixth child at birth, touching off a massive depression and subsequent faith crisis. I couldn’t bear the trite answers about why this had happened to me—everything from “This will make your family stronger” to “God must have needed her in heaven.” I was so devastated that I spent many months feeling suicidal. And yet, through all of that, I continued to attend church.
After about a year, I became an atheist in my mind and heart. But I kept going to church. Every week. I kept paying tithing, wearing my garments, following the Word of Wisdom to a letter. I filled my calling in the Primary presidency. I even spoke in church, though it was tricky to find something to say that wasn’t a lie. I had once considered my refusal to lie as part of my personal code of ethics but it turns out to actually be a symptom of my autism. If someone had asked me directly about my belief in God, I would have told them the truth, but it was years before that finally happened.
I still remember sitting with a bishop who called me into the Primary presidency just a few months after my infant daughter’s death, asking me to be in charge of the nursery. I tried to explain—with words—how suicidal I was, how every Sunday I went home and spent hours fantasizing about cutting myself open with knives and watching my blood pour out so that I could be free of the burden of the guilt I felt at surviving my daughter’s death and being unable to save her. I tried to explain with words how angry I was at my own children who did normal things every day, things that my missing daughter would never be able to do. But I didn’t cry. I spoke tonelessly—classically autistically.
The bishop assured me that God wanted me to accept this calling and that it would help me with my grief because God would bless me as I served. But it didn’t help. As months passed, I was less and less able to pretend to be normal as I poured energy into situations where I was continually misunderstood. Over and over again, I used bare, accurate, but emotionless words to explain my struggles, but the women I would talk to only stared at me, not understanding that though I was feeling emotions deeply, I did not express them with my face or body.
A friend once admitted her envy that I was able to “control” my emotions in social situations. She finds it embarrassing that she cries all the time in church. I can appreciate this desire to look like you aren’t weak, especially in professional situations. But I’ve learned from experience that not showing normal facial expressions and never crying in church are not advantages. People frequently think that I am “strong,” but this is a terrible misreading.
I am not strong. I am not in “control” of my emotions. Because I am not crying on the outside does not mean I am not hurting on the inside. But no one ever knows, it seems. It makes me think about the ways in which autistic people are portrayed in television and movies. They do not show emotions, which implies that they do not feel emotions. They do not show empathy with body language and eye contact, which implies that they do not feel empathy. But, if anything, I, and many of my family members who are on the spectrum, are extremely empathetic.
It is a constant struggle for me to sit in church (I often knit, another autistic habit), listening to people say things that sometimes feel hurtful or simply wrong-headed or rude, and keeping quiet. Though I am articulate with words—particularly the written word—I am almost entirely silent at church. I was recently deeply hurt by something my visiting teaching companion did, and with a conversation I tried to have with a woman I had once considered a good friend. I felt keenly my inability to have normal social interaction, not because I wasn’t using the right words, but because I wasn’t giving the right body language signals for them to understand how I felt.
Words, however expertly I use them, are simply not enough in real life social interactions. I left the situation and asked to be released from being a visiting teacher, but I don’t know that either woman understands how wounded I was. I didn’t cry, which to me is one of the important things all Mormons do, men and women. If you don’t perform this ritual of emotional vulnerability, your words are not given proper weight.
I have wondered recently what would happen if I took an acting course and learned how to make myself cry. Would I be able to look more normal in social situations? Would I be able to pass myself off as less suspect if I could cry during a spoken testimony? Even my closest family members have likely seen me cry only once in my life (at my daughter’s funeral). Being unable to express my emotions normally, I miss out on the social aspect of Mormonism that I need most. My designated friends don’t know what to do with me or how to understand me, and my leaders don’t read me properly or take my emotions seriously when I need comfort and to be mourned with most.
Still, for someone with autism, walking away from the Mormon community is incredibly difficult, at least an order of magnitude above what it would be for someone else. Making friends outside of the church is quite difficult. And beyond that, the structure of Mormonism has been my whole life.
In the past, it was deeply reassuring to know that within Mormonism, there are supposedly answers to every question, that not only is every step in this life already laid out in advance for me, but all the steps in the next life, as well. My need for a rigid set of rules that governed everything was assuaged by the comforting doctrine that God watches over everything and makes sure that it goes rightly. Schedules for every part of life are one of the best parts of Mormonism, at least for me. For most autistic people, change is very difficult, and though I’ve had people tell me that I’ve changed enormously in the last ten years, maybe there are some ways in which I will never change—or can’t change.
Eventually, in 2012, I decided to try to reinvest myself in traditional Mormonism, despite the problems that had caused my depression and faith crisis. I wanted rather desperately to go back to the comfortable and safe way of thinking that I had once clung to. That hasn’t happened, though I have found a deep belief in God again.
Last week, I was praying/meditating—as I do every night now for twenty minutes or more. I poured out my feelings of fragmentation and isolation to God (whom I often imagine as a mother figure who sits with me on a porch swing, rocking back in forth in a rhythm I find very soothing—and not requiring eye contact so that I don’t feel so invaded and overwhelmed). I explained how lost I felt with my diagnosis, how I felt like I wasn’t “me” anymore, that my good parts weren’t good anymore and that a whole new series of weaknesses had opened up to me in the most painful way.
Mother God’s answer was to pat my hand and to tell me, “You are whole.” All the parts of you, She told me, are meant to be the way that they are. You have a work to do and only the person that you are, autism and all, can do this work. Yes, you have deficits. But you also have some wonderful capacities that wouldn’t have come to you without autism. And now you have a new group of people you can speak for and help, because you are one of them, and because you are so good with words.
If you had seen me after that prayer ended, you would not have noticed any emotion on my face. I did not weep on the outside, but inside I felt that blessed relief of being understood and feeling healed that had nothing to do with my autism.
If you ever meet me, or hear me give my testimony in church, you will surely notice that something is slightly off about me. But in this essay, I hope that I have communicated in the way that I am best at, with the written words that I’ve been given as my talent. I will not bury that talent, but invest it and take the risk that comes with it, in hopes that I will be seen as a “good and faithful servant” in the end.