Notes from the Spectrum, Part III: Speaking the Words

Notes from the Spectrum, Part III: Speaking the Words

January 22, 2016 1 Comment

It seemed his voice had rusted over…He had never actually said out loud that Ethan was dead. He hadn’t needed to: it was in the papers (page three, page five), and then friends had told other friends, and Sarah got on the phone…So somehow he had never spoken the words. How would he do it now?”

The Accidental Tourist by Anne Tyler

“I am not talking to you now through the medium of custom, conventionalities, nor even of mortal flesh: it is my spirit that addresses your spirit; just as if both had passed through the grave, and we stood at God’s feet, equal — as we are!”

Jane Eyre by Charlotte Brontë

My first attempt at writing about autism begins with a direct, three-word sentence: “I am autistic.”

The simple declaration is the most hard-won line in a piece filled with them, and one of the most hard-won lines of my writing and my life. It opens the gates to a world I’ve always lived in (whether I knew it or not), a world I’m only just now describing at length, a world I hadn’t talked about with more than a handful of people. This last fact changed recently, propelling me into new territory. While it was hard enough to write the line, to speak it publicly was much scarier.

I had agreed to present at a gathering of faculty sponsored by my university’s Center for Teaching and Learning Excellence. The Center is a great resource, offering workshops focused on helping us improve many aspects of our teaching. It has a more holistic focus, though, as well, and in that spirit is curating a series of talks by faculty called Identity Intersections.

It’s an opportunity to learn about colleagues’ lives and careers in a personal way. The current Center Fellow is a friend I respect and like very much, so when he asked me if I would speak in the series, I agreed without a lot of hesitation. He had read my first autism essay and expressed appreciation; he wanted more of the faculty to hear my story—the beginnings of it, at least. I felt a calling; I knew I had to do it.

And I knew it would be very hard. If it were going to happen, I would have to—if you’ll permit me the analogy—set aside “customs [and] conventionalities” and, perhaps most of all, my autistic “mortal flesh,” to talk at the level of spirit, as Jane breaks through to Rochester in one of literature’s greatest bursts of intrepid articulation. Autism is near to the essence of who I am and how I relate to the world, and I would not be able to account for it in any way but with a depth and richness that transcends everyday conversation.

Oh how that unadorned first line got stuck in my throat.

I guzzled some water, relaxed my neck and shoulders, spoke low into the mic to help steady my voice. I stumbled my way through a preface. Then I had no choice. So I said the words. I spoke them with a tremble, as one speaks when ego has been set aside. I stood and talked and kept talking.

Saying the words is an obvious critical step in the process of healing and growth, regardless of the nature of the change one has endured. In Anne Tyler’s The Accidental Tourist, Macon Leary learns that speaking his son’s death out loud—even much later, perhaps too late to save his marriage—is the very lynchpin of anything resembling recovery.

Being a writer and autistic, I’ve got two good reasons to publish my feelings on forums like this rather than talk them out in person. And yet higher ed. remains a world of podiums and microphones. Now, I have no problem in the classroom, as it’s an environment I mostly control and the content is academic if often deeply personal for me. But revealing parts of my identity I’m just beginning to understand…that’s a different world.

Why was it humiliating? Why did I feel so supremely vulnerable? Let me briefly mention, then set aside, two obvious contributing factors: the very common aversion to public speaking even among neurotypical people, and the autistic adherence to routine and resistance to change. This was a big change. Beyond those, my admission was a kind of death: the death of a certain type of image I had wanted to project to the world, to my university, my family, my friends, myself. I would prefer to appear transparently intelligent, powerful, accomplished, and self-composed, end of story. But I went on to talk about an inner life filled with fear, with mishandlings of simple social situations, of an abiding loneliness and alienation that has threatened the very foundation of my being.

It feels unbecoming for a professor to describe being curled in the fetal position, ritualistically blowing on his knuckles.

Most of us don’t want to talk publicly about what hurts, and though autism has had some positive influence in my life, it’s also an enormous daily challenge. Autism is not incompatible with personal and professional success, but it complicates the picture a great deal. Even as calls for a neurodiversity paradigm are encouraging to me, I experience the autistic life more often in terms of its deficits.

I feared being misunderstood or being unable to provide good answers to questions. Concepts like neurodiversity are so new that many people, even well-read university professors, may very well not have encountered them yet, and I sensed a disproportionate amount of pressure to educate the audience.

While my talk did contain some exposition, it was mostly personal narrative. I was not, and am not, ready to accept the responsibility for being a resident expert on autism. I still have much to learn. It’s hard to want to share a journey you’ve barely begun when you can’t comment on the big picture, the themes, the narrative arc—it’s all still unfolding, organic, unpredictable.
Furthermore, and this is upsetting and offensive, but it’s very possible that I’m scared to accept that because it is a spectrum, I am every bit related to the person on the other end of it—the “classic” or “severe” autistic, the developmentally disabled person who may need full-time care.

By virtue of our autism he is my brother, she is my sister, and I don’t really know what that means yet. And I am ashamed of feeling scared.

All of this overwhelms me.

Although I’d like to think this is not true in our ever more inclusive culture, I may have risked my career by coming forward to begin this conversation. Everyone knows that tenure-track professorships are high stakes affairs—many would like them, but few get to have them. To admit to a neurobiological disorder may be seen as admitting to a weakness, a professional flaw. I fear planting a seed of doubt: Did he disclose this during the hiring process? Does this affect his teaching?

I think I have good answers:

No, because I did not have a diagnosis until several years after I was hired

Of course it affects my teaching, though it’s complicated—some facets of autism are problematic while others are in fact strengths…one of Hans Asperger’s most frequently quoted lines, for example, is a testament to the obsessive focus typical of people on the spectrum: “It seems that for success in science and art, a dash of autism is essential.” This focus mostly makes me better in my roles on campus.
But would they entertain darker questions in the backs of their minds?

Questions like, Should his job belong to someone else? Someone better equipped to handle the daily stresses of university life? Especially after reading the game-changing New York Times bestseller NeuroTribes, I can’t ignore centuries of abuse, mistreatment, and a near-complete misunderstanding of autistic people. And one need only read comments on any autism-related social media post to see that (to put it charitably) suspicion about us is alive and well.

These questions hit me in the gut. I’m certain it’s just paranoia. Yet some days I feel like a fraud. And in fact not-yet-tenured professors (even those who, like me, can be described as having largely achieved success in the early years of their careers) can be released for almost no reason at all, and it happens around the country.

My university has been very good to me and I should know better than to indulge these ugly thoughts. But hopelessness creeps in, and I start thinking that at any moment someone will call me in and take away my ability to earn a living and support my family, and that will be that. Only my job is also much more to me—it’s closer to how Frederick Buechner defined vocation: the place where our deep gladness meets the world’s deep need.”

I believe in story and I know some things about writing and I love mentoring students; I believe in promoting flourishing through the humanities. I love being an English professor. I over-identify with my career, sometimes equating it with my self-worth. I am terrified of the rug being pulled out from under me for being autistic, and I hope and pray I did not invite such a gesture.

In the end, I did what I had to do, and if there’s fallout to fear, I haven’t heard of it yet. And in fact I’ve received some very supportive messages from colleagues who were there. Owning this publically has enabled me to begin a new journey. For one thing, I want to get better at talking about autism so I can do more of it in the future, and the only way to get better is to do it. I’m happy to have that first hard step out of the way.

But what’s more is that I do feel some empowerment. God promises us that his strength is made perfect in our weakness—that if we humble ourselves, he will lift us up. And I just admitted in front of people whose opinions I value to being very different, to having a challenging condition and sometimes being unable to manage it and sometimes being humiliated and ashamed to feel humiliated, and simply uncertain about the whole deal.

For better or worse, this is good soul work.

At my very next social gathering, I noticed I was more aware of and in control of my reactions and emotions, a little less afraid, more conscious of cultural and personal expectations and how I might or might not meet them. I felt a little happy. I sensed—for the first time in a long while—the palpable joy of being surrounded by friends. I could focus more on them, on their warmth toward me and each other, on the stories they wanted to tell, on what it means to live in community and be present to the moment.

Don’t get me wrong: I have not, and cannot, “overcome” autism—that’s not the point here at all. Neither is this an indictment of those who choose, for many complex reasons, not to share their condition. We must all do what we think best; there’s no one right way.

As the poet William Stafford wrote, “…justice will take us millions of intricate moves.” I’m not at all sure if I can get “better” at autism, at doing the autistic life. But like anyone else, I can make a few moves—take steps toward wellness—and speaking the words for the first time was, for me, a very important step. Though my next steps might very well be backward, I pray I’m on the right path.



1 Response

Steve Rafalsky
Steve Rafalsky

March 03, 2020

Daniel, thank you for sharing your heart, and who you are. Unless we expose our true selves we cannot be loved. On the spectrum or not, I think we all face a very similar dilemma: how can we possibly be loved given all our wretchedness, failure, shame and weakness? Is it not, essentially, the human condition? It is a gift, this sort of self-knowledge, and an entrance—if given—into a world of unmerited favor, where the well-known words, “Blessed are the poor in spirit: for theirs is the kingdom of heaven”, speak to our reality and offer hope!

I’m a poet myself, and take comfort in that the words I speak are able to establish what is real, and may be a link in a chain of sanity and friendship to a fellow traveler in this realm of true speaking, such as in,

I have been alone
all my life

but then, again,
who hasn’t?

for it is the lot of us
that we are solitary
in our essence.

We who are lovers
of God
know how He breaks in
gloriously invasive
ravishing the loneliness of our hearts
with His exquisite presence
and we truly are
lovers of God

and we who are lovers
of our fellow humans
be they friends
or wedded lovers
also know respite
from the staggering solitude

but rare is the one
who has a companion
in the flesh
to keep him company
– or her company –
a mutual refuge of hearts
in the wilderness
of human society.

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