When I was a teenager, my mother told me that her doctor expected me to be born “blind and retarded.” She only mentioned it once, her voice low and taut. My father never spoke of it at all. Why I never asked more questions about this prenatal event, I’m not sure, other than the realization at some deep level that the subject was taboo.
Sometime in her pregnancy my mother had caught rubella, or German measles as she called it. Dr. Carl, our family doctor, thought it best to shield her from the truth, saying nothing about risks to the baby. But in a grand gesture of patriarchal brotherhood, he told my father everything and said to keep quiet about it until after the baby was born.
Inexplicably, from my mother’s point of view, my father began going to Mass every day at 5 a.m. before leaving for work. At the same time, he stopped paying attention to the pregnancy and seemed indifferent to the growing baby. My mother felt emotionally abandoned and deeply hurt.
“Well, if you’re not interested in this baby,” she told him, “it’s a bit late to figure it out.”
Still, he kept his terrible secret.
After I was born, apparently normal, my mother was told what had been going on. She didn’t say how she felt about being kept in the dark, but the fact that this experience was something to be mentioned only once in a lifetime speaks volumes.
I, too, treated the subject like a closed book until I turned fifty-five. Then, continuing my lifelong search for what was wrong with me, I returned to the gestation story, at first considering possible emotional damage based on failure to bond. As I mulled this over, a vague recollection surfaced about a link between congenital rubella and autism. I felt an instant rush that just possibly I had hit upon the burning question: Could my problem be that I was autistic?
I had many signs of the disorder: difficulty getting along with others; direct, blunt communication; heightened sensitivity to sensory stimulation; quick temper; literal thinking; difficulty recognizing faces; and a need for structure and rules.
My kindergarten teacher was my paternal grandmother, and she used to laughingly tell me how I often flew into rages in the classroom, screaming and pulling my pigtails straight out from both sides of my head.
As I gathered information on congenital rubella syndrome (CRS), I found two physical traits that also fit the profile of CRS: a heart murmur and a defect in one eye. Additional traits seemed to fit Asperger’s disorder, or high-functioning autism. I took an online, self-administered test called the Asperger’s Quotient, developed by Simon Baron-Cohen at the Autism Research Centre in Cambridge, England, and scored in the range for Asperger’s, according to the chart. One question in particular grabbed my attention. It asks the test taker if, when reading a story, he or she has difficulty imagining what a character looks like. I gasped when I read this. All my life I have found it impossible to visualize a fictional character’s face, even when it is described in detail. In every book I have read, the characters all have blank faces.
But what really hit home for me emotionally was reading over and over how people on the autism spectrum suffer from loneliness and social isolation. Loneliness and social isolation. “That’s me,” I thought.
All of the scientific research on congenital rubella and autism was a few decades old at the time I started looking into it because the introduction of a universal vaccination for rubella in the 1970s eliminated most cases in the United States. After the MMR (measles, mumps, and rubella) vaccine became widely available, there were too few cases of the disease to conduct large-scale studies. However, in 1971 Stella Chess published an important study on autism in children exposed to rubella in utero and a follow-up study in 1977. What struck me about Chess’s findings was the atypical nature of the autism cases tied to rubella. The children in her study conformed to some of the features of classic autism, but not others. Later, when I was diagnosed as an “atypical” case, I would return to Chess’s articles and carefully read every word.
The problem with being atypical is that most people don’t believe it when I disclose my condition. They see me as a competent, successful professional with, at worst, a flawed personality, not someone with a disability. They experience my bluntness as rude, my interaction with others as weird, and my seriousness as a downer. In response, I try my best to blend in and appear normal, give the socially-approved responses, force myself to smile more, and appear upbeat.
Determined to find answers, I made an appointment with an autism clinic at the university where I held a faculty position in the Department of Community and Family Health. Located within a child development center, the clinic served mostly young school children, although I was assured that some adults found their way there as well. When I expressed concern about being recognized in the waiting room, Dr. Davis, the psychologist I was to meet, offered to let me in the back door. The clinic had made this accommodation for another patient, one of the local professional football players. So with stealth and apprehension, I hastened into a consultation room outfitted with toys and various child-focused diagnostic tools.
Dr. Davis was a young, attractive woman whom I warmed to immediately. She put me at ease and asked what seemed like all the right questions about what brought me to her door.
“So what do you do when you find yourself in a group where someone is doing all the talking and you can’t find the space to speak up?” she probed.
“Well, after holding my tongue until I can’t stand it anymore, I usually say something like, ‘Look, you’ve been talking for a while now. Would you mind if I took a turn?’ ”
“And how do people react when you say that?”
“They get angry and defensive and say something nasty to me.”
“Okay, what else gets on your nerves in conversation with others?”
“Oh, where to start―well, one thing that happens often is I’ll be talking about some problem, just wanting to vent about it, and the other person feels compelled to suggest ways to solve the problem. It drives me nuts! I just want the person to listen sympathetically and validate how I’m feeling. Instead, I get ‘Have you tried this, have you tried that?’ It’s so frustrating.”
She delved into my relationships with family, children, friends, and colleagues. I told her my biggest problems were loneliness and feeling rejected by others.
Following the interview, Dr. Davis administered a structured test called the Autism Diagnostic Observation Schedule that included, among other things, two tasks requiring one to use imagination and creativity. In the first task, I was given a random set of objects (shoelace, paper clip, small block, and playing card) and asked to make up a story using the items. For the second task, Dr. Davis gave me a booklet with line drawings like in a comic strip, but without any words, and told me to figure out what was happening in the story. In both exercises, according to Dr. Davis, my performance was below expectations. I used the objects literally as they were in real life instead of in a creative way (e.g., pretending the block was a car) and took an unusually long time to figure out the picture story.
After the test, Dr. Davis explained that my case fit the profile of a BAP, or broad autism phenotype, a “shadow syndrome” of the full-blown version. My insight and communication skills were good, and I did not show the hallmarks of Asperger’s: unusual sensory interests, compulsive behaviors, self-injurious behavior, or complex hand or finger mannerisms. I demonstrated autism spectrum qualities that caused distress, but at a sub-clinical level, according to the official diagnostic criteria of the DSM-IV (Diagnostic and Statistical Manual of Mental Disorders, fourth edition).
In her evaluation report, Dr. Davis wrote that although I did not meet the diagnostic criteria for Asperger’s disorder, I demonstrated significant social difficulties and would benefit from reading books explaining what it is like to live with the condition. She said my case was atypical and recommended I read Build Your Own Life: A Self-Help Guide for Individuals with Asperger Syndrome, by Wendy Lawson, and Pretending to be Normal: Living with Asperger’s Syndrome, by Liane Holliday Willey. She also recommended therapy with a professional familiar with high functioning autism/Asperger’s disorder and provided a referral.
Since my motivation for getting evaluated was to better understand myself (rather than to be approved for insurance coverage for therapy), the report was not disappointing. I welcomed the validation that my social impairment was serious and real. Finally, I had an explanation for my long struggle to relate to people and maintain good relationships. I spent hours mentally sifting through a lifetime of experiences and viewing them through the prism of autism. I recalled the time I asked one of the doctoral students in my program if she had any suggestions to help me get along better with students. “Look at the students when you talk to them,” she replied without skipping a beat. Until that point, I was unaware that I did not make enough eye contact. Since then I have trained myself to do it more. I remembered all the times my mother and others admonished me to smile more and talk more, to be less withdrawn. I reflected on the frequent aggravation I feel toward others who do not respond in the ways I want and on my need to have certain conversational dynamics to feel at ease. I thought of all the friendships I’d lost from coming across as too confrontational and my tendency to take things literally and not get jokes. I thought of how easily I experience sensory overload, especially from sound, and how I jump in fright when someone touches or speaks to me unexpectedly.
When I began to talk about this with family and friends, the reactions were mixed. Some people immediately recognized what I described and accepted my explanation, while others scoffed and said, “No way are you autistic.” I was grateful that my children fell into the believer camp, citing examples of behavior they had observed that fit the pattern, like how quickly I became frustrated, and recalling awkward moments of social interaction they had witnessed. One son confided that, growing up, he often wished that I would act more like other parents. The naysayers insisted that I was too regular and too successful career-wise to have such a problem and that perhaps I was just mistaking being introverted for autism.
I began thinking of myself as being “somewhere on the spectrum” and read everything I could find online and in books and magazines. The volumes recommended by the psychologist were helpful, but the one that really spoke to me was Women from Another Planet?: Our Lives in the Universe of Autism, by Jean Kearns Miller. A collaborative effort by a group of afflicted women, the book focuses on the special challenges faced by high-functioning women on the spectrum. One of the most common difficulties the women discussed was convincing people that they had a real problem. So much of the effort to conform “does not show at all on the outside.” They heard the usual retort―“Oh, I have that too sometimes”―when they mentioned an autism behavior or characteristic, such as “wanting to be alone too much,” being “deliberately rude and unfriendly,” or the disruption felt when even a friend could seem like “having a strange person in the house.”
In the Miller book, Wendy talked about having “to put on a personality” she had constructed, “as though rehearsing for a play, then getting up on stage.” Gail noted how she hated to talk to people “who do this phony baloney stuff well. All this false politeness and good will.” She felt like “smacking them and saying, ‘Tell me what you are really thinking!’ ” Ava, on the other hand, highlighted the curious mix of “ability and disability, success and failure, insight and naiveté” found among high-functioning persons. I identified strongly with Jane’s observation that she was “much more isolated than those around [her] ever suspect.” And finally, a stanza from Susan’s poem hit home:
Among the words
I most dread to hear,
Yet hear so often,
Are “Lighten up!”
“Don’t be so intense.”
“Don’t take life so seriously.”
In essence you are telling me
To stop functioning.
From the Miller book and other sources, I learned about the “neurodiversity” movement, which promotes greater acceptance of people who think and act differently from the “neurotypical” norm, the idea being that society needs to change to accommodate those with psychological differences, not the reverse. Also, taking a cue from the disability movement, “autistic culture” views autism as a set of values, beliefs, and behavior; people on the spectrum can feel part of and make positive contributions to that culture. With my anthropological background, I was especially attracted to this idea of a shared culture as a source of pride.
I even twice attended Autreat, an annual gathering of autistic persons in Pennsylvania with the stated purpose of focusing on “positive living with autism, NOT on causes, cures, or ways to make us more normal.” There, for the first time, I felt no pressure to maintain a pleasant smile and cheery demeanor. I could go around with a blank expression on my face, and no one seemed to take notice. Attendees wear name tags identifying their preference for being approached and spoken to or for being left alone. It’s considered perfectly normal to sit alone in the cafeteria and show no interest whatsoever in meeting other people. For me the experience was deliciously liberating and strengthened my identity as an Aspie.
In 2013, the DSM-V eliminated the diagnosis of Asperger’s disorder, moving it into the general category of autism spectrum disorder, now differentiated by level of impairment. A few of my skeptical friends cited this as further evidence that I did not have a real condition. I viewed the change as a step in the right direction, placing emphasis on degree of impairment instead of on meeting a unique set of criteria. I wondered how my clinical evaluation would have differed under the new guidelines.
Eight years after gaining insight into my “problem,” hardly a day goes by that I don’t think about some new happenstance that makes the most sense within the framework of autism. Having this mind-set is a mixed blessing. The insights are healing, but being afflicted with just a “touch of autism” is frustrating because so many of its effects remain invisible to others. They can’t see the strain behind holding a simple conversation, having to be ever vigilant about saying the wrong thing or coming across as “strange.” They are unaware of the mental effort to remember to smile and appear animated. Nor do they realize how much is held back, unsaid, or that my offensive remarks don’t represent uncensored, unrestrained outspokenness. Still, others accept that I have this condition, but they nevertheless get tired of having to accommodate my needs.
While I would not describe myself as a militant for neurodiversity, I have adopted the ideology and values associated with the movement. I believe we should promote greater social acceptance of people on the spectrum. It also occurred to me that as I get older, it seems harder to force myself to conform to neurotypical expectations. I am increasingly inclined to explain my needs and hope people will be sympathetic and accommodating. I asked my psychiatrist if this is a common pattern with age, and he felt it had more to do with being retired and having greater freedom to define one’s life. As when I first “came out,” the reactions to these overtures have been mixed. I am fine with that. As long as a few close family and friends continue to support me, I am grateful.
Reprinted from Ursa Minor: UC Berkeley Extension's Art & Literature Review, Vol. 2, "Dark Matter," 2017.