relentlessly unpredictable

Not all the features of atypical human operating systems are bugs. By autistic standards, the “normal” brain is easily distractible, is obsessively social, and suffers from a deficit of attention to detail and routine. Thus people on the spectrum experience the neurotypical world as relentlessly unpredictable and chaotic, perpetually turned up too loud, and full of people who have little respect for personal space.
~ Steve Silberman
(NeuroTribes: The Legacy of Autism & The Future of Neurodiversity)

A major source of anxiety for me is any sudden change of plans. Over the years I’ve learned from observation that other people don’t see these as the catastrophes I experience and have at times concluded that there is something terribly wrong with me. Or then I think something is wrong with others, that they’re rude not to stick to a plan. I’ve spent countless hours giving myself pep talks about learning to be flexible and learning to go with the flow. When a change of plans pops into my day I have a hard time telling if it is a reasonable response to an unanticipated development or if it is just someone else’s whim. It doesn’t matter. Either way, I force myself to accept the change and exhaust myself repressing the panic I feel, trying to be “normal.”

[Lewis] Carroll’s transitions from chapter to chapter are abrupt and unexpected. Alice is rushed from one scene to the next without any opportunity to stop and process what she has just experienced, or to prepare herself mentally for what’s to come. This kind of abrupt time change, without transition, is similar to how a day at school feels to a child with AS. There is no flashback, no foreshadowing: since there is only the immediate moment, shifts in time and place are disconcerting and stressful. Carroll captures this feeling of urgency and panic very well.
~ Julie Brown
(Writers on the Spectrum: How Autism & Asperger’s Syndrome Have Influenced Literary Writing)

“Alice Meets the White Rabbit” by Margaret Winifred Tarrant

I have a very poor sense of time and an “unreasonable” fear of being late. When I know I have an appointment I rush around checking the clock all day, much like the White Rabbit in Alice in Wonderland, and cannot manage to do anything else. It seems like such a waste of time, but I cannot help it. Inevitably I leave the house too early. I watch in wonder and awe as others effortlessly multi-task and juggle appointments and chores in the course of a day. But to me it’s too overwhelming and confusing!

When surprised by the doorbell or the phone ringing I experience an adrenaline rush. I’ve worked hard over the years to not startle or gasp when that happens. Similarly, it is difficult to keep myself together when hearing a horn or a siren while out driving. On the other hand, I love the soothing sounds of foghorns and buoy bells, one of the comforts of living by the sea.

It’s interesting to me that I accept other sorts of change with far more grace, the change of seasons, the stages of life, evolution, or lifestyle changes. Knowing that nothing stays the same or lasts forever makes it easy for me to do things like let go of clutter or keepsakes and accept that children grow up and move away. Perhaps because these changes are more predictable and expected.

when your friends come by

“Dear Bird” by William-Adolphe Bouguereau

Got to keep it together when your friends come by
Always checking the weather but they want to know why
Even birds of a feather find it hard to fly
~ Aimee Mann
♫ (Goose Snow Cone) ♫

Today is the 26th anniversary of my mother’s death. The pain of loss has dulled somewhat over the years, but this year is a little different because my mom was 59 when she died and I am now 60. It just feels a little unsettling… One thing I still miss terribly is calling her and telling her what was new in my life and what her grandchildren were up to. She would have found this autism thing very interesting.

When I was in nursery school my behavior was different enough to prompt my parents to take me to a child psychologist for evaluation. Autism was not understood or even heard of in the 1960s. The psychologist told them I needed more attention from them. A few years later, when I got a stomach ulcer in elementary school the doctor told them I needed more emotional support from them. How I wish I could tell them now it was not their parenting that was the problem!

Currently I am reading a wonderful book, Writers on the Spectrum: How Autism & Asperger Syndrome Have Influenced Literary Writing by Julie Brown. It’s no secret that Emily Dickinson is my favorite poet and my jaw dropped to learn that she probably had autism and one whole chapter in this book is devoted to her. I found it interesting to learn how autism made so many of her poems indecipherable, although they no doubt made perfect sense to her.

The recurring practice of quoting from someone else’s literature in your own text resembles the echolalia that people with autism are known for. Some repeat words from movies, television, or other people because they are trying to understand the meaning of the words. Sometimes echolalia is an attempt to communicate with others — the words are tools borrowed to build meaning. Some repeat phrases for the sheer joy of it.
~ Julie Brown
(Writers on the Spectrum: How Autism & Asperger Syndrome Have Influenced Literary Writing)

A couple of things struck me in the above paragraph. My autism may be what drives me to collect and share quotations! I’m not sure I completely understand the definition of “echolalia” but my mother did tell me something that I think may be related. She could always tell when I made a new friend at school because I would come home with a different accent and different mannerisms, evidently copied from various classmates. It still happens to me when I spend a lot of time with someone, although I try not to do this.

So many things are making more sense these days…

impaired executive function

Most people on the spectrum have some level of executive function impairment, but how that impairment impacts our lives can vary greatly from person to person.
~ Cynthia Kim
(Nerdy, Shy, and Socially Inappropriate)

The most fascinating aspect of autism that I have encountered so far is the idea of impaired executive function. It’s not something that usually gets listed with other features of autism and I had no idea what “executive functioning” could possibly mean.

Executive function is a broad term that refers to the cognitive processes that help us regulate, control, and manage our thoughts and actions. It includes planning, working memory, attention, problem solving, verbal reasoning, inhibition, cognitive flexibility, initiation of actions, and monitoring of actions.
~ Cynthia Kim
(Nerdy, Shy, and Socially Inappropriate)

I have trouble with all these things! I’ve long considered myself to be inept, clumsy, absent-minded and inflexible — to think how long I’ve desperately tried to force myself to be flexible and easy-going. Even my children tried not to spring things on me, not wanting mom to get hopelessly flustered.

It’s difficult for me to finish a chore if it has too many steps. Sometimes I have to write down each and every step if I want to have any hope of getting the job done. Lists are my friends, I think.

Driving is overwhelming because there are too many things going on to pay attention to. I use my left foot for the brake because the right foot is for the gas pedal. One foot can’t seem to handle two different assignments. When I finally got my driver’s license at the age of 21 the person who tested me decided to pass me if I promised to work on using the one foot for both pedals. He said if I used both feet I would get mixed up and push the wrong pedal sometimes. Now I am glad I didn’t listen to him because I have never gotten the pedals mixed up doing it my way. Now I know why — my brain works a little differently.

I also have many difficulties with problem solving. Often it just doesn’t occur to me that doing something a bit differently would be faster or more effective. And very often I don’t even recognize a problem until someone points it out to me. (I do appreciate the helpful hints, by the way, humble being that I am.) And sometimes when trying to do something familiar in a new setting or at a different time or with different people I simply freeze. In fact freeze is my automatic response when faced with the anxiety of a fight-flight-freeze situation.

When I was a child we often went to visit my widowed aunt who needed my parents’ help with home maintenance and yard work. She always had a stack of gift catalogs — like Harriet Carter, Lillian Vernon, Carol Wright, Miles Kimball — but I called them problem-solving catalogs. My parents never had these fascinating resources! While Auntie was cooking a Sunday dinner I used to study them carefully, amazed at all the clever gadgets people invented to solve problems I never imagined existed!

Something more recent now… I have two tall bookcases with glass doors that I need to move to finish painting the living/dining room. I wanted someone to help me by standing on the floor while I stood on a chair and emptied the top shelf, handing them the items to put on the table. I wanted to do it this way because I didn’t want to have to keep getting up on and down off the chair. That’s pretty much how I always tackled the problem but when I was younger there was always a child available to help me out.

Then one night about a week ago I was sitting on the couch looking at them and it suddenly occurred to me that I could take things off a lower shelf and then move the things off the top shelf onto the lower shelf while still standing on the chair. I was amazed at my sudden and unfamiliar brilliance! Why didn’t I think of this years ago?

What is unusual here is that I figured this one out by myself. To do things my way is usually tedious at best. Most of the shortcuts I’ve learned over the years for doing housework have come from how-to books or from friends and relatives pointing things out to me. I still remember how enlightened I felt when my aunt told me about felt circles I could stick to the bottom of the kitchen chairs to muffle the loud noise they made when moved across the floor. Who knew?

Frustratingly, an executive function deficit is not something you can fix by simply trying harder. Often, other people will look at the symptoms of impaired executive function and assume the autistic person is lazy, spaced out, or disorganized. If only they would make more effort, everything could be fixed. In fact, I think most autistic people — including me — think this of themselves at times.
~ Cynthia Kim
(Nerdy, Shy, and Socially Inappropriate)

making sense of my life

lesserury-woman-at-writing-desk
“Woman at Writing Desk” by Lesser Ury

If I could, I would always work in silence and obscurity, and let my efforts be known by their results.
~ Charlotte Brontë
(The Life of Charlotte Brontë)

I’ve acquired many labels in my sixty years: highly sensitive person, introvert, obsessive-compulsive, painfully shy, homebody, bookworm, social phobia, agoraphobia, chronic depression, chronic migraine, chronic anxiety. But none of them got to the crux of the matter more definitively than autism.

Feeling like an odd-duck for all of my life I started suspecting autism (or Asperger’s syndrome) a few years ago. Little hints in the occasional magazine article. (Caring for elderly relatives for most of my adult life I’ve spent countless hours in medical and hospital waiting rooms reading magazines.) But last October I read an autobiography written by someone who had been been “diagnosed” late in life. His experience compelled me to read a few more books on the subject. And then a few more. My curiosity finally led me to consult with a neuropsychologist who confirmed my suspicions in December, one month shy of my 60th birthday.

Talk about a paradigm shift! The news actually came as a huge relief. So many things about my life until now are finally making sense.

It can be harrowing to see life through the surreal lenses that warp and tangle and convolute the most simple of activities; activities that the neurologically typical consider ordinary, things like shopping and driving and studying and keeping a job and paying bills and visiting with friends. It can be sad to find that no matter how deeply committed the effort, tenuous results may be all that follow.
~ Liane Holliday Willey
(Pretending to Be Normal: Living with Asperger’s Syndrome)

Reading the above quote for the first time deeply resonated with me. I’ve often tried to figure out how most people can simply hop in the car and run out to the store. For me it is a major and exhausting expedition that needs careful preparation and planning and a lot of recovery time afterwards. I’ve never been able to explain why this is to anyone — and still can’t. For me, so many things don’t respond to the ‘practice makes perfect’ philosophy. Now I know why. Now I can make the allowances I need without feeling so badly about it.

No doubt I will be writing more about this astonishing discovery in the coming months.

a strange gift from our deep past

“The Ten Largest” by Hilma af Klint

In recent years, researchers have determined that most cases of autism are not rooted in rare de novo mutations but in very old genes that are shared widely in the general population while being concentrated more in certain families than others. Whatever autism is, it is not a unique product of modern civilization. It is a strange gift from our deep past, passed down through millions of years of evolution.
~ Steve Silberman
(NeuroTribes: The Legacy of Autism & The Future of Neurodiversity)