Having lived with my husband for several decades now, I’m convinced he falls somewhere on the high end of the ASD (Autism Spectrum Disorder) scale. People who find themselves on this “high end” used to be classified under the category of Asperger’s Syndrome. It’s only been recently (within the last decade or so) that the diagnosis of autism has been broadened to include a wide variety (and degree) of behaviors described as autistic, hence, the diagnosis of ASD. Here, I focus on “high-functioning” adults.
Being “high-functioning” means my spouse can take care of himself, work, and take pleasure in favorite activities (reading, hiking, solving equations, and shredding old documents.) From my perspective, he seems to engage in any activity perfunctorily, often reminding me of Joe Friday, the detective on that 1950s show, “Dragnet,” who can’t handle circuitous, tangential reporting from crime victims and witnesses. He says, “Just the facts, ma’am. Just the facts.” My husband finds comfort with “just the facts.” Facts are strewn all over the house. There they sit, not doing much.
I don’t tell many people I think he’s on the ASD scale. What’s the point? When I do say so, some people ask, “Has he been diagnosed professionally?” That’s my cue to drop the subject. I feel as though my observations over a mini-lifetime (along with reading and attending lectures on the subject) are deemed worthless unless verified by an authority. Professionals in the field are just beginning to see that autism is far broader than delayed development (especially verbal) and repetitive behaviors (rocking, spinning, head-banging). There are no resources for high-functioning ASD adults (and the people who live with them) in my geographic area. I’ve checked. In addition, many high-functioning adults have developed sophisticated strategies to compensate for their particular inabilities, making testing and diagnosis elusive–even if it were available.
One out of every 68 children today in the United States receives a diagnosis of autism. One out of 42 is male. Many people think that autism is the “fastest-growing developmental disability in the U.S.” There is no “cure” for autism. Neither is there a diagnostic tool such as a blood test to give us “verifiable laboratory results.” The NIH (National Institute of Health) thinks there is “most likely” a genetic predisposition coupled with an environmental component. Using my 20/20 hindsight, I’m sure that my now-deceased father-in-law displayed symptoms in that cluster of behaviors we call autism. My daughter is convinced that her 14-year-old son falls somewhere along the high end of the spectrum.
Is there really a greater incidence of autism nowadays? Or, are more people categorized as autistic–pushed into a construct or box–based on “scientific” studies and who-knows-what else? There are several accessible websites on autism– https://www.autismspeaks.org/what-autism–for example, that give information about the subject. So, what symptoms or behaviors do autistic people display? I’ve listed some that many people consider “core,” yet it’s important to note what Linda Brandenburg, Director of Autism Services (Kennedy Kreiger Institute), so aptly (yet frustratingly) says: “If you’ve met one child [person] with autism, well, you’ve met one child [person] with autism.”
1. Extreme sensitivity to criticism.
2. Rigid. (Things are right or they are wrong.)
3. Easily distressed when things aren’t “right.” Meltdowns–loss of control–often happen.
4. Endless talking about or “bulldogging” a subject–usually in a monotone.
5. Often highly intelligent, but focused on a narrow field that can become an obsession.
6. Socially challenged. (Inability to “read” facial expressions and body language.)
7. Little to no understanding about nuance and layers of meanings.
8. Lack of empathy.
Andrew Solomon wrote an article titled, “The Reckoning,” in “The New Yorker” (3/17/14) after interviewing Peter Lanza, Adam Lanza’s father. Adam killed himself, his mother, and twenty-six people at Sandy Hook Elementary School (December 2012). Adam had been diagnosed with Asperger’s Syndrome, the name formerly given to “high-functioning” autism. Solomon writes, “Both autism and psychopathy entail a lack of empathy. Psychologists, though, distinguish between the ‘cognitive empathy’ deficits of autism (difficulty understanding what emotions are, trouble interpreting other people’s nonverbal signs) and the ’emotional empathy’ deficits of psychopathy (lack of concern about hurting other people, an inability to share their feelings.)”
I think the distinction Solomon makes is important to note even though both cognitive and emotional impairment result in a lack of empathy. Dr. Mohammadreza Hojat, a research professor of psychiatry at Jefferson Medical College in Philadelphia, says, “Empathy is a cognitive attribute, not a personality trait.” He believes empathy can be taught. I just don’t know.
A friend of mine prefers to think of autistic people as “neurologically diverse,” resisting our Western penchant to fit behaviors neatly into a categorical box. In addition, diagnoses having to do with behavior, sometimes called “mental illness,” are extremely fluid. What some might consider aberrant behavior in a particular culture and era is not considered so in another. (See Thomas Szasz, 1920-2012, author of The Manufacture of Madness.) What I dare to ask is: When people on the high end of the ASD scale display what is considered aberrant behavior in our day and time, might they be reflecting what patriarchy teaches and expects–especially from men? Even more to the point, why is that throughout my mini-lifetime with my “high-functioning” spouse, people (counselors, doctors, friends) have dismissed my concerns about my spouse’s behavior–especially in his familial relationships? Most times I would hear, “Just be happy he has a steady job, doesn’t come home drunk, and doesn’t beat you.”
Patriarchy–that social system with domination at its core–is sensitive to criticism. Don’t question me. I know. Patriarchy insists on its own way. There is no room for discussion–it’s focused on droning on and on about its own agenda. It makes no difference whether or not patriarchy can “read” facial expressions and body language. It sees no need to do so and therefore the “other” is not taken into consideration. No empathy needed.
Whether autism stems from our genes, causing a “hard-wiring” with specific neurological patterns, comes from soaking up our culture’s values, or develops from a combination of factors, I’m suggesting that we often look the other way when behaviors, heavily flavored with patriarchal values, damage both those who demonstrate autistic behaviors (meltdowns where an individual lashes out in anger, for example) and those who bear the brunt of those behaviors (anger) and walk around on eggshells for fear of precipitating that anger. We live in a patriarchal social system–its values seep into the marrow of our bones. Those values, destructive though they be, are familiar. We adjust, and we are far more likely to excuse the chaos left behind by high-functioning autistic men than women.
NOTE: My husband has told me that if he were a child today, he probably would fit under the rubric of some kind of “behavioral diagnosis.” He would/could not sit still in classrooms, disrupted the teaching environment, “defied” his teachers, and performed poorly through high school except in math and science, notably chemistry. His report cards said he “does not follow instructions,” “must learn to get along with others,” “has difficulty with authority figures,” and “should be more diligent in his studies.” His exceptional test scores, though, in math and chemistry gave him the impetus to apply to institutions of higher learning specializing in those specific scientific fields, and he eventually earned a PhD in chemical engineering.
Today, there is more attention given to what my friend calls “neurologically diverse” people. Children are more readily evaluated and if diagnosed on the ASD scale, are given help and support in the form of “shadowing.” A trained person stays with an autistic child throughout the day, demonstrating (among other things) the proper social responses throughout the day’s interactions. Does this mean that the child eventually learns, for example, to be empathetic? I don’t know. Maybe the child learns to trust another person to have the child’s best interest at heart, facilitating social engagement with the larger world. I don’t know. I’m trying to figure it all out. What I do know is that without communal support (medical, social, psychological) for my concerns over the years, I’ve felt frustrated and alienated. I can only imagine the frustration and alienation people on the ASD scale feel–especially if undiagnosed and untreated.
Esther Nelson is an adjunct professor at Virginia Commonwealth University, Richmond, Va. She has taught courses on Human Spirituality, Global Ethics, Christian-Muslim Relations, and Religions of the World, but focuses on her favorite course, Women in Islam. She is the co-author (with Nasr Abu Zaid) of VOICE OF AN EXILE REFLECTIONS ON ISLAM and the co-author (with Kristen Swenson) of WHAT IS RELIGIOUS STUDIES? A JOURNEY OF INQUIRY.