This essay is a second installment of my journey toward understanding why and how I am so “weird”. In my first essay, Autism @ 80, I used the term Asperger’s. After a month of reading articles about, and testimony from, people diagnosed with Autism I find the term and much of the concept of ‘Asperger’s’ has been banished to the dog house and that many neurodivergent people prefer to see ‘autistic’ as a personal identity rather than a condition or disability that a person has. Regardless of the truth value of the statement “Liza is autistic”, delving into the autism literature is giving me a lot of very comforting ‘aha moments’. I’ll share a few with you.
Jonah’s birthday party. So my son invited many of his friends and family to drop in at a local bar on the eve of his birthday. I found myself unusually comfortable in this small crowd (about 12) and small talk on my topic-de-jour came easily. “Autism, oh ya, I was diagnosed two years ago. And this is my doctor, she’s on the spectrum too.” Then I noticed that my grandson was reeling off a highly technical explanation of AI tokens and the person who had kicked off the discussion was right there with him. A new person walked up, greeted my son with a hug and they immediately began a loud, esoteric conversation about some business deal they had been involved in a couple of years ago. No introductions or social niceties, no problem. No masking. Now I’m wondering whether I have been uncomfortable when I visit my son and his tribe because I have been expecting neurotypical social rules and they had already dispensed with them.
Speaking of Masking. Everybody finds themselves on stage some of the time, suppressing spontaneous comments or behaviors and adopting others that seem more socially acceptable. But this is not an hour-by-hour experience for everybody. If I’m correctly interpreting the personal descriptions by autistics as found on the internet, the experience of having to puzzle out what to say in order not to be offensive is a continuous challenge. I’ve finally learned to keep my mouth shut until I’ve constructed an inoffensive script (to put on my mask) in most social situations. At the birthday party, nobody took offense. They seemed to ignore anything that might have been off color and to welcome the atypical. But for me not masking has become difficult as well, even in a group that appreciates my eccentricities.
Except for the picking. All my life, every scrape, blemish, insect bite, fingernail, hangnail, rough spot, and unidentified lump has been a target. I scratch or bite myself constantly. It’s impossible to mask, to hide, to stop; it’s more than just a bad habit. At the party I watch my daughter-in-law knitting. She’s always knitting when she’s not writing or petting the cat. My mother was always knitting or crocheting. My grandmother did embroidery. In an earlier age someone who was constantly flint napping or some other craft performed with the hands, repetitively, would be a necessary asset to group survival. Today we buy “fidget toys” for our kids and ask them to sit still.
Tyranny of the Typical. So if I’ve been surrounded by neurodivergents in my family of origin and my children, why have I had to mask so much. Why am I, along with many other adult females, experiencing a sense of relief and grief as more of us disclose that we have been masking our inner experience in order to function in modern society? Any satisfactory answer is likely to be long, complex and rooted in both individual and group dynamics. Let’s start by imagining life for humans as hunting and gathering prey animals who lived in small, relatively isolated bands.
Today we have machines that do the repetitive sewing, carving, berry picking tasks that require constantly moving hands. We rarely have to pick the parasites out of each other’s hair and we don’t open or lick wounds to prevent infection. What was typical and necessary is now dysfunctional in much of modern life. Along with the kind of repetitive actions seen in autistic people, unique ideas and innovative behavior would also help the group adapt to changes in environmental conditions and develop new social interactions. Natural selection probably has preserved some neurodiversity. On the other hand, hunting, along with infant care, and building communal structures or boats, requires cooperation, predictable skills, timing, and trust – – typical (predictable) behavior. You don’t want one of the hunters to spook the herd just when the others have it surrounded or one of the builders to drop the lodgepole at the moment it is being set into place. Thus, natural selection would also ensure the group had some neurotypicals.
How is it that the neurotypicals now seem to have the upper hand and have convinced even the neurodivergent folks to pathologize their own behaviors? One answer may be that neurodivergent people are less likely to self-organize and develop a common voice. Their differences are from each other as well as from the typicals. Even if there are more divergents than typicals, rules, common beliefs, and cultural norms will not emerge as readily among the divergents. The typicals are better at articulating the value they bring to the whole group. The cooperating hunters are now corporate executives, police, doctors, academics, and politicians. The divergents are scattered among homemakers, farmers and factory workers, inventors, artists, scientists, researchers, explorers, risk-taking entrepreneurs, political activists, shamans, and social drop outs of many kinds. Does this imply that the neurotypicals have used their very typical-ness to consolidate both the overarching cultural narratives and means of physical force to marginalize the neurodivergent? If so, I doubt that it was either conscious or intentional. Whatever the underlying motivations and evolutionary dynamics, for the past several hundreds of years, the neurodivergent, autistic, and socially deviant populations have been labeled sick, disabled, defective, useless, or dangerous often enough to make masking of their differences the ticket for participation in mainstream society. It led to my family of origin, most if not all of whom were pretty divergent themselves, reject and criticize me if I didn’t mask the very behaviors I saw in them. Luckily, the narratives had already begun to change when my children were born in the early 1970’s. I did my best to celebrate their uniqueness while supporting them through the inevitable pressures to conform that school and employment presented. The happy and comfortable birthday party tells me my efforts are paying off.
Healing Grief and Anger, Reclaiming Self and Power. What more do I need to do? I’ve learned a lot in a month of read, writing, and talking about autism. Am I finished? Not hardly, not for myself, not for our broader social narrative. I read and agree with several criticisms of the term “autism spectrum” and the implication that there is a single, linear dimension against which to measure the strengths and challenges faced by neurodiverse people. There is a much more nuanced story to be discovered and then told about the various ways the human nervous system is “wired”. New chapters in that story are now being written, about just how varied the human nervous system can be for individuals who survive to adulthood, about the relationships among genetics, epigenetics, and life experience, about the long term effects of physical and psychological trauma on the behavior of individuals, about how cultural and social collective actions afford freedom of action for individuals. What is said about humans in general will impact my view of myself.
And my personal story? I’ve carried anger for almost 80 years toward my family, schools, and communities over the ways they have reacted to my “weirdness”. Some said I was ‘intelligent’, ‘high-strung’, ‘neurotic’, ‘hypochondriacal’, ‘depressed’, ‘chaotically attached’, ‘suffering from narcissistic wounding’… misdiagnosed. But I’m not sure they ‘missed the diagnosis’ of autism either. The term “diagnosis” continues to medicalize inappropriately. Rather, we all failed recognize how varied we humans can be in our sensations and in our thought patterns. We – I – got caught in the different-is-bad trap. When everybody in the trap is different, everybody is bad. As all of us support each other in taking off our masks, as we move from different-is-bad to different-is-interesting, my anger is morphing into sadness. That we have been punishing each other for being diverse is sad but there’s nobody to blame. My parents didn’t know any better and they didn’t intend to hurt me any more than the crowd at the grocery checkout counter means to send me home exhausted after shopping.
Believing that I have been hurt, even without blaming others or myself, gives me space to grieve. Grieving leads to healing. Spaciousness also comes from reading about the ways autistics protect themselves from sensory overload and take time to rest and recover. Instead of asking myself what’s wrong with me when I’m ready to leave the party after two hours, I’m saying, “for you, two hours is a good run.” I’m wondering what other useful tips I can harvest from lists of strategies for parents of diagnosed autistic children.
It’s not all good. I’m still in the middle of what I have always thought of as ‘a depressive episode’ or ‘seasonal affective disorder’. But now I’m wondering whether I’m experiencing ‘autistic burnout’ from too many hours in Zoom meetings last week. I can’t change the seasons and I’ve never been able to climb out of the depression – – except by giving myself the kind of space and decompression time I find mentioned in the autistic literature. And I can schedule fewer online meetings. Is that Self and Power? Well, yes, somewhat. Can I decrease my picking and scratching? Not yet, but I’m going to get a spinner ring for starters