autism – In the Woods

magnolia blossoms

Thursday was an interesting day. Changing plans is always tricky for me! (autism) I found another open space property online for a new place to walk and made a plan, map in hand. But when we arrived at the trailhead there were a number of cars and a large group of volunteers armed with tools for trail maintenance. Too many people too close for comfort so we didn’t even get out of the car.

Where to go now? We had been to the beach the day before and so we decided to go back to Elm Grove Cemetery where we found two magnolia trees in full bloom! Spring is coming! But it was cold… We started to walk but then Tim’s leg pain started up and we headed back to the car. He offered to wait in the car so I could get some exercise and I was off, feeling bad for him but exhilarating in a nice long brisk walk.

This huge cemetery is a perfect place to walk and I think it’s been discovered. We weren’t as early as we were Tuesday morning so a few other people were there but the many lanes and walkways made it so that I never crossed paths with anyone.

Finally I wound up at the White family plot, where eight of my maternal ancestors lie buried. Tim caught up with the car and snapped this picture of me standing behind the grave of my 3rd-great-grandmother, Lydia (White) Hill (1798-1877). So the sudden change in plans was accomplished without too much difficulty.

The sense of having one’s life needs at hand, of traveling light, brings with it intense energy and exhilaration. Simplicity is the whole secret of well-being.
~ Peter Matthiessen
(The Snow Leopard)

an explanation for all the confusion and difficulties in your life

How do you explain to the people around you that what you need now is to just crash and do nothing for a while until your head feels normal again, when you don’t even know what’s wrong with yourself? … I think it’s important to keep in mind that when we define the severity of a person’s Autism, it’s only a measure of outward behavior and doesn’t really reflect how much one is affected by the condition internally. Those of us who appear to have low severity may actually need more than is apparent to the eye. … Sometimes I think of myself as part of a lost generation (or generations), the ones who had to go through life with Asperger’s unknowingly. And I’m hoping that in the future, with better education and understanding, the Aspie youth of the future will have a completely different experience. … It’s a nice feeling — a relief — to finally find an explanation for all the confusion and difficulties in your life, but it would have been even nicer to have known it all along.
~ Michelle Vines
(Asperger’s on the Inside)

Yesterday I spent the day reading and then shredding all the journals I wrote when I was in my late 20s and early 30s. (I’m in my early 60s now.) Something I’ve been meaning to do for a few years because there was a lot of very personal stuff in there.

What was strikingly revealed to me as I read is the painful struggle I was having with autism for years, trying desperately to figure out what was “wrong” with me. The evidence of impaired executive functioning jumped out at me on almost every page, so obvious from what I know now, so baffling back then. I wanted so badly to live like a “normal” (neurotypical) person, to figure out how to get along in this world.

As I read I kept saying under my breath, “no wonder you were so damn tired all the time.” It’s exhausting trying to make your brain work with a different operating system. I can’t help wondering what my life might have been like had I and my parents and my husband known about autism and if I had had some meaningful support. But it IS a huge relief to have it all make sense now.

time is not even a thing

9.22.19 ~ timeworn hardware at Mystic Seaport

And this means that time is a mystery, and not even a thing, and no one has ever solved the puzzle of what time is, exactly. And so, if you get lost in time it is like being lost in a desert, except that you can’t see the desert because it is not a thing. … And this is why I like timetables, because they make sure you don’t get lost in time.
~ Mark Haddon
(The Curious Incident of the Dog in the Night-Time)

For me, this might be why I like (need?) clocks. Getting lost in time for me is more like being lost at sea. (I’ve sailed across the ocean but I’ve never seen a desert.)

I hadn’t thought much about it before I read this book, but I have a clock in every room of my house. Clocks were one of the few moorings I had at school when I was growing up. The bell always rang at the right time. A difficult class could only last until the appointed time. Thinking about all this also brought up a fond memory.

Many years ago, long before I knew anything about autism, and long before there were cell phones, we were visiting Tim’s aunt and subconsciously I was looking, one room after another, for a clock, feeling very anxious. At some point it sunk in that I wasn’t going to find one and before I could check my tongue I blurted out, “you don’t have any clocks!”

Tim’s aunt said she guessed that was true, and a few minutes later she kindly brought me a watch to keep with me for the day. That’s one thing I love about her, she accepts my quirks and does what she can to make me feel welcome and comfortable anyway. ♡

It was almost three years ago when I found out that I was on the autism spectrum and thought that I would blog about it a lot more than I have. That doesn’t mean I haven’t been observing my interactions with the neurotypical world and sorting through memories with new understanding. It’s been a journey of discovery, fascinating but difficult to articulate, probably because of my brain thinking mostly in pictures.

I prefer analog clocks to digital ones. When I see the numbers on a digital clock my brain translates them to the clock pictured in my mind. And it takes a bit of time.

I enjoyed The Curious Incident of the Dog in the Night-Time, a mystery novel written from the viewpoint of a teenage boy with autism. The author doesn’t have autism so it’s amazing that he can describe the train of thoughts running through the brain of an autistic person. I read the book in one day! It was so easy to picture everything he was talking about.

I dislike feeling unmoored and lost in time, simply because there is no clock around to anchor me. But then I remember, our brains are as mysterious as time, and oftentimes anxiety happens.

Being awake. Resting in the happening of this moment, exactly as it is. Relaxing the need to understand or to make things different than they are. Opening the heart. Just this — right here, right now.
~ Joan Tollifson
(Resting in the Happening of this Moment)

comfort

Sometimes I think it must have been much easier to live and die at the time of our ancestors, the Vikings. When they buried their relatives, they also buried many objects together with the body. This was to be sure that the dead would not miss anything in their new environment. It also an assurance for the family members who remained that they would not become obsessed with spirits of the dead and constantly be reminded of them because their possessions were still scattered all over the tent or mud hut. Very clever.
~ Margareta Magnusson
(The Gentle Art of Swedish Death Cleaning: How to Free Yourself & Your Family from a Lifetime of Clutter)

7.13.18 ~ Eastern Point
my camera decided to go Impressionistic for this distant cormorant

You might guess from my recent choice of reading material that I’m still struggling with the objects and possessions I inherited from our ancestors. Things started piling up around 2008. Hard to believe it’s been 10 years! I have managed to dispose of a lot of stuff but cannot rest on my laurels. What’s left is stacked halfway to the ceiling in a corner of what is supposed to be the genealogy/guest room. The corner takes up almost half the room.

there are three cormorants in this picture,
which I didn’t realize until I saw the picture enlarged on the laptop

Trouble is, life (births, illnesses, travels, weddings, visitors, deaths) keeps happening and I need a good chunk of uninterrupted time to roll up my sleeves and dig in. Now that there is a lull in the stream of summer activities I am annoyed by the droning of the air conditioners. But I since learning about the autism I am aware now that I am much more sensitive to noise than neurotypical people, so, I will wait patiently for some cool, dry, quiet weather to return.

7.12.18 ~ Grandmother Elm ~ Stonington, Connecticut

We enjoy going to estate sales. We rarely buy anything but a few days ago we found a large file cabinet in excellent shape at a great price. It is now in the genealogy/guest room waiting for me to make use of it. After my grandmother died my grandfather offered us anything we wanted in the house. I chose my grandmother’s mahogany secretary which I still have and treasure. Grandfather said he didn’t want us grandchildren to be burdened with all the stuff. I don’t want my children to be burdened either.

I’m also sad about the changes at my beloved beach. The city has installed a gull repellent system. Every three minutes a recording of a gull in distress blares out from the loudspeakers. There are maybe two or three fearless gulls left on the roof of the beach house. All the laughing gulls are gone, all the different kinds of gulls are gone. I suppose I will never see my friend with the mangled foot again. It’s all too much for me to bear and I’ve been reduced to tears more than once this summer.

I visited my elm tree, Grandmother Elm. I cannot believe it’s been 5 years since I have gone! I used to visit all the time when Tim’s brother was living with us, the year he died here of cancer. Now she has small stems and branches growing out at the base of her trunk, covered with leaves. When I read The Hidden Life of Trees by Peter Wohlleben I believe he said this was a sign of distress. No other tree in the cemetery was like this. Perhaps she is suffering, too. Still, her wordless wisdom comforted me.

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

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)