The Experience of Autism from the Inside

I write this post with a great deal of caution.  I am going to attempt to flip the script on how autism is often described.  Rather than a set of outward behaviors, I am going to attempt to describe autism from the standpoint of the inward sensory experience.  This is fraught with all sorts of pitfalls, not the least of which is that every person is unique, and every person, while their experience may in many respects be identical to someone else’s experience, will frame that experience in relation to different memories, different language, and different emotions.  To speak in a generalized way of an inward experience of autism is almost guaranteed to fail from the start.

But I’m going to make the foolhardy attempt nonetheless.  Here’s why.

Autism is diagnosed on the basis of clinical observation and assessment of external behaviors.  While the understanding of the genetic origins of autism are growing, and while other medical markers such as functional MRI brain scans, are also helping advance the knowledge of the autistic brain, the fact remains that we do not as yet have definitive biological markers by which to diagnose autism.  There is no blood test for autism.  So, the clinical diagnosis of autism is from the standpoint of related behaviors.

But these behaviors are assessed in terms of deviations from what is considered normal.  They are assessed from the standpoint of deficits, deficiencies, and disability.  It is, after all, labeled Autism Spectrum Disorder.  And while this medical model of autism may be our only way currently of diagnosing autism, it creates and furthers social stigma.

After spending three-fourths of this calendar year researching autism, from clinical books to lectures, to persona memoirs and YouTuber videos, to interacting with autistic persons, I have come to see that the experience of autism from the inside is a richer and more beautiful world than it is viewed from the outside.

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Thanksgiving Transitions

Although the original post was deleted long ago, today marks the calendar day, twenty years ago, that I first began this blog. In the Russian Orthodox observance, today is the feast of St Katherine of Alexandria, a martyr who debated and defeated the philosophers who sought to turn her from Christ. (The Greek Orthodox will observe her feast tomorrow.) Being a philosophy student, I thought at the time it would be an auspicious day to begin the blog.

I was then (and would be) going through some significant transitions. I had left my seminary education over a desire to pursue life within the Orthodox Church (though I did eventually complete my master’s thesis). I had, after about a year of hemming and hawing, and after reading Ephesians 5-6, decided I would pursue the Orthodox Faith and decide to go wherever it would take me. It was my last gasp effort to find a Christian way of life. I began my PhD program (ancient philosophy and ethics), and would soon begin teaching my own classes in philosophy to undergraduates. I had begun working part-time at the university library where I lived. And, only a few short weeks later, I learned I was going to be a father, with our first child.

Twenty years later, to the day, I am going, and have gone, through other transitions.

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The Nostalgia of Malt O Meal

This morning I did some grocery shopping to get some pies. While I was walking through the grocery store, I happened to walk down the aisle with the “hot cereal” as we called it when I was a kid. “Cold cereal” cereal was boxed cereal. My mother always wanted to ensure we were eating healthy and so limited what sort of snacks and sugary foods my sisters and I ate. And let’s be honest, if she brought home a box of Frosted Flakes or Cap’n Crunch, that box was not likely to last more than one Saturday morning, with three kids and Saturday morning cartoons. Like throwing wads of cash in the fireplace.

So, as kids, while we sometimes had such fuddy duddy “cold cereals” like Wheaties, Raisin Bran, plain Cheerios (the only kind there was when I was a kid), and plain Rice Krispies, more often than not, especially in the winter months, we would be served oatmeal (cooked on the stove) or Malt O Meal (or, more likely, Cream of Wheat). Some of the first things we learned to cook as kids was oatmeal and Malt O Meal.

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On Endings and Beginnings

If one has the good fortune to live in a climate which has four distinct seasons, each year one will physically experience the rhythm of endings and beginnings. During one’s school years, the annual rhythm of work during fall, winter and spring, and play during summer, will make its own marks. As one grows into adulthood, marries and becomes a parent, new rhythms of ending and beginning will weave different tapestries in to one’s life.

As one ages (though age is not a prerequisite), one may well experience divorce and the end of friendships, or debilitating or terminal illness. All of us will experience the death of loved ones and friends. And all of us will experience death ourselves.

Managing well each ending and beginning is the preparation we all make for that final passage from this life in to the next.

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Autism and Camouflaging (or Masking)

Everyone wants to fit in, to be included, to have meaningful relationships and social connections. Everyone wants to be “normal.” While the quest to be “normal” is a meaningless one, the desire for fruitful human connection is built in to all of us. Everyone, autistic people included, desire to be loved and to give love. But since autistic people have a different neurology, the ways in which they give and receive love, the ways in which they achieve meaningful human connection, are different in approach, though not different in kind.

Regrettably, there are pernicious myths that still persist in social consciousness about autistic people. They’re lost in their own world. They’re aloof. They’re narcissistic. They’re incapable of relationships and so on. But what these falsehoods do is increase the social isolation and rejection that is the common experience of autistic people. While it is true that only 1-2% of any given population is autistic, there is no reason that the 98-99% can’t see autistic people for who they are, understand and adjust to some of the different approaches autistic people have in making social connections, and in love accept and include autistic people in the care and kindness that should be the normal experience of all people.

Let’s explore what this might mean.

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On Late Diagnosed Autism

One of the recent developments in autism is the increasing number of “late diagnosed” autism in adults in their 30s, 40s, 50s, and even 60s and older. It’s something of a mirror image of the increasing numbers of diagnoses of autism in children in the 2000s. Just as there were public misperceptions of the increasing numbers of children diagnosed with autism, there are likewise misperceptions of the what and the why of adults being diagnosed on the autism spectrum.

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On Autism

Earlier this year, towards the end of April, I caught a passing reference to autism in a YouTube video that I was watching. It sparked my curiosity. Six months later, I’ve read more than three dozen books, several research articles, watched uncounted hours and hours of scientific lectures as well as videos made by autistic persons themselves. I’ve watched movies, read fiction, and dug into the webpages of various societies devoted to autistic persons. It may be somewhat ironic that I devoted so much effort and became so passionately curious about autism: one of the traits of autism is the ability to hyperfocus on a particular interest.

What I learned about autism completely destroyed the stereotypes and misunderstandings I had had about autism and autistic people. I had two views of autism: the classic kind of significant impairments of a young male, school aged, who was nonetheless a savant in math (the juvenile version of Dustin Hoffman’s character in Rain Man); and the Asperger’s kind of an adult male, condescending, super intelligent, selfish and probably narcissistic (a la Sheldon Cooper on the TV show The Big Bang Theory). These caricatures provide more falsehoods than they do truths.

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Grief is Weird

My mother passed away about ten months ago, in January. It left me feeling sad and disoriented. My father died in September 2015. With my mother gone, I was now without any grandparents or parents. It was just me and my sisters. I grieved that. I grieved her being gone. But it was different than when Dad died. Having already gone through Dad’s death, I sort of knew what to expect. And yet I didn’t.

With Dad, the sorrow was huge, all at once, and then tapered a little, with big waves that would toss my emotions around every now and then. But as time went on it subsided into a wistfulness.

With Mother, the sorrow was quieter, gentler, less overwhelming. A few months later, I knew I missed her. I would still reach for my phone to call her on the way home from Liturgy. But it seemed less. The tears were gone. And I felt (feel) guilty about that.

Or I did. Until now. We are heading in to the holidays, and now the grief is huge and overwhelming and constant. I’m rational enough to know that it is because of the association of gathering at Mom’s for the various holidays. And now, Thanksgiving will come, Christmas will come, and Mom won’t be there. The home with her in it, with all the holiday smells, all the cooking and the pies and cakes and homemade candies, the candles, the tree, the lights, the stockings, all her fretting and stage-managing, followed by her exhaustion and naps, the quiet mornings sipping coffee and talking for hours, the laughter, the frustrations, the hugs–it is all gone.

And I am wiped out.

Lord, have mercy.

The End of Another Forty Days

Six and a half years ago, I reflected on the death of my father. It is barely conceivable to me that I am now living in the aftermath of the death of my mother. Although I have had my own home since my twenties, and although my parents divorced while I was in college, there is something about your parents’ home being “home.” It doesn’t have to be the home you grew up in. And, as in my case, even if your parents are divorced, there’s just something that feels like home whenever you’re with them. My dad’s death was difficult, as all such deaths are, yet in his departing a feeling of home left with him. And while Mom lived, there was a “home” that seemed, somehow, just as much, perhaps even more, a home as my own. Now she is gone.

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