"Where the rain gets in" - Article written by Selene De Packh, Digital Artist, Writer, Pittsburgh, Pennsylvania, Usa

Author:SeleneDePackh,

Artist,Writer,Pittsburgh, Pennsylvania, Usa

http://prodigadinero.deviantart.com/aspinthegarden@gmail.com     

"Where the Rain Gets In"

I spent a weekend this spring trying to find out whether an online friend had taken his own life. Christopher commented constantly across the fragile fellowship of the autistic spectrum on the web. He and I shared a fondness for surrealist art; he’d often leave a knowledgeable comment comparing a new artist I’d found to another from an earlier generation. I knew his mood from the given comics character he had as his icon—Marvel monster/heroes with bulging muscles alternated with sweet-faced manga animals. He’d started using one I hadn’t seen before, a wistful white manga lion looking off into some undefined horizon.

He’d expressed occasional loneliness, remarking on a funny Valentine’s Day post showing a conjoined carrot resembling an embracing couple that everyone had someone but him. When a favorite artist of ours died, I posted an obituary. My friend was unaware of his death, and said he’d been struggling so hard with work that he’d lost touch with what was important. It’s uncommon for those of us on the autistic spectrum to have success in both employment and relationships; neither of us was an exception to the odds. About a third of us are able to live independently. Christopher, in his fifties as I am, had managed to hold a steady high-tech job and lived alone but for a much-loved cat. I have a long-term, supportive relationship, but I haven’t been able to navigate the working world on its own terms for any length of time.

Friday morning there had been Christopher’s regular stream of political postings. His commentary was sardonically funny, as it often is. I keep my feed running in the corner of my screen as I work on my 3D artwork or write. When I’m doing my housewife chores, I check my tabs every half-hour or so. One of my online comrades will often be struggling, and the rest of us swarm in to offer support like dolphins raising a newborn calf to the surface for its first breath. 

Christopher had posted a pained rejoinder to a recent article in The Daily Beast by Maia Szalavitz.  It was called “A Radical New Autism Theory” and touted the stunning results from a new study suggesting that people with autism spectrum disorders “might be more able to experience empathy than originally supposed.” The issue of empathy (or lack thereof) is a sore point in my community, as are many of the dehumanizing attitudes of the neurotypical world. The most recent sting was from the killing of George Hodgins, a 22-year-old autistic man, by his mother Elizabeth, who then committed suicide. All sympathy was for the pathologically troubled mother; the young man’s name was rarely mentioned in news coverage; he was “her autistic son,” with no other identity worthy of public remembrance. The victim was non-verbal and exhibited the signature behaviors of autism—the lack of eye contact, the flailing gestures, the agitated rocking and meltdowns from intrusive stimuli. 

As we with the distinctive brain connections of autism realize, most non-verbals among us understand language perfectly well, and are capable of other forms of communication. Some coverage of this, such as by Ariane Zurcher of The Huffington Post, is finally making its way into the mainstream, but agonizingly slowly. My original support network arose partly in response to a 2006 video called ‘Autism Everyday,’ created by the largest “autism advocacy” group, Autism Speaks, for fundraising; it was widely distributed and never publicly retracted. After protests, the video no longer appears on the Autism Speaks website, but the group has never acknowledged the hurt it’s caused. It shows a mother speaking of wanting to kill her non-verbal daughter because caring for her is so burdensome… as the daughter plays in the background. There was every probability the child understood everything her mother was saying.  

My informal circle found one another through our pained reactions to Autism Speaks and its allies calling for ways to “cure” us of our “disease,” oblivious to the fact that it’s a vital part of our brain structure, inseparable from ourselves. The programs they support are biased toward the elimination of autism, and thus by extrapolation, the elimination of autistic people. Never mind that we’re well represented among the greatest intellects in history. There’s no positive message that we’re known for loyalty and honesty, that we have great powers of analysis and concentration. Their material presents dire predictions of burden, dissolution and financial ruin for our families. It’s a testament to our resilience that we don’t have higher rates of depression and suicide than we do, given what we hear about ourselves. Autism Speaks has no autistic members on their board of directors, and only a few token autistics in advisory positions, yet they dominate the public conversation on autism and control the majority of funding. One member of my circle coined the phrase: “Autism doesn’t speak unless autistics are speaking,”

My group was excited because a local television station had covered their candlelight vigil for the young man who had been murdered. It’s unusual for us to be heard in the public conversation on our lives at all. An autistic activist who could “pass” in the neurotypical world spoke of the hurt our community feels for the disposability of his life. She executed the correct movements, keeping her large dark eyes raised—not looking away, staring or moving her hands inappropriately. Then another activist was interviewed, a woman with a notable academic record who writes with passionate clarity. Her anger and stress had overridden her self-restraint; she looked away from the reporter and waved her hands erratically, her hair disheveled. She raged against the mother, saying that all parenting is hard and caretakers should just “get over it.” Ironically, she isn’t autistic; there was no mention of that. The news story ended with that image.

Sometimes it feels like it’s been a thousand-year monsoon over this leaky outpost of ours, yet we still rush to the window every time there’s a hint of a break in the clouds. I congratulated the group, but said I regretted the impression left by the news story’s parting quote. The woman who had made that impression came online and apologized for having lost control of her talking points, none of which were included in the final edit.  

Christopher posted an article about the then two-week-old killing in Florida of an unarmed black teenager by a “block watch captain” who had yet to be charged with any crime, along with an especially bitter comment. It was less than he generally says in a day, but I didn’t think about that at the time. I fixed dinner and spent the evening with my partner. I didn’t check my social media before bed. We took a lazy Saturday morning, and then I went to see what was happening with my circles. There was a single line status update from Christopher, written late at night in his time zone. He rarely leaves them, preferring to comment when he shares something from someone else.

“I am so tired of being a fundamentally broken human being; I wish I could fall asleep and never wake up.”

The dolphins had gathered in the meantime; a dozen or so of his friends had left encouraging messages. Uncharacteristically, there was no response from him. I wrote: “You are valued here. We can’t afford to lose any members of this odd fellowship.”

My note was followed throughout the day with more from other friends, increasingly anxious. Christopher had private messages relayed to his phone; I left one for him. I posted on my page, asking if anyone had heard from him. I got only echoes of my own worries. I checked every half hour or so; nothing more appeared but the lengthening thread of concern. I left a post on the networking page that serves as a hub for a lot of social media-connected autistic adults. In the time it stayed visible before new posts pushed it out of view, no one responded. I gave up for the night, and shut the computer down. 

Christopher’s despondence is a baseline for a lot of us on the spectrum. We know we live in the fragile margins of life, even as many of us appear outwardly successful. We’ve always been here: the eccentric hermit, the ostracized collector of books or stray animals, the strange one no one wants to sit next to on the bus. An English study from 2007, updated in 2011, found that “adults with ASD living in the community are socially disadvantaged and tend to be unrecognized.” A goodly proportion of us who can “pass” in social settings carry the awareness that we’re one meltdown away from the street or an institution; it’s an ache so familiar it usually goes unnoticed.

Over the previous month, just before Christopher disappeared from the radar screen, I’d been a research subject in a University of Pittsburgh/Carnegie Mellon study to assess how “high-functioning” autistic brains are different from “lower functioning” ones. I’d had misgivings about volunteering, particularly since Autism Speaks was partially funding it. I’d refused to give a blood sample for DNA profiling; I didn’t want to contribute to a eugenics determinant. It will be found, but not with the genetic markers from my body. The world would be a poorer place if autism were eliminated through pre-natal testing, whether it chooses to know it or not. I don’t intend to assist the process. 

I wanted to give my younger peers the benefit of my successful behavioral adaptations without the pain I went through to develop them; I also wanted to know first-hand how the conclusions which would come from the study were reached. Research shows that autistic brains start out very similar to one another, with fundamental differences in neurological connection patterns from typical ones. Differences in autistic social functioning seem to arise in significant part from changes in the brain that develop from differing patterns of use. I was a sample of a more successful adaptation; my neurological connections would be mapped using a functional MRI to determine how I’d learned to meet situations challenging to an autistically wired brain.

I’d been through several interviews to determine whether I fit the profile. I proved to fall deeper in the autistic category than I’d thought. The autism spectrum begins with a total diagnostic assessment score of 13; full autism begins at 19. My score was 22. I’d been asked about markers of the condition in my initial phone interview: did I have low muscle tone, an awkward gait, slumping posture as an adolescent; uncoordinated motor skills; unusually poor performance in team sports; was I bullied in school; had I had complaints about my dress or personal hygiene, particularly as a child; complaints about not respecting conventions of conversation; did I have hypersensitivity to particular tactile sensations, sounds, lights and odors; unusual insensitivity to certain types of pain; was I prone to digestive upsets, allergies, migraines, visual disturbances? Yes to all.

The intake screening interview was videotaped for educational purposes. I was representing my peers; I tried to carry myself with grace and dignity. When the assessment report from the study office came in the mail a week later, my stomach knotted. The interviewer’s statement described me in the third person; I read my name with the same dissociated sense I’d had as a child looking at my report cards. 

“…Selene primarily used complex speech…she produced stereotypical words and phrases accompanied by a slightly odd intonation of her voice…her emphatic gestures were slightly excessive.

“…She had difficulty asking her conversational partner about her thoughts, feelings, and experiences and even responding in a reciprocal fashion to her comments. Therefore, the conversation lacked the level of reciprocity expected for an individual with her language….

“Selene inconsistently directed her gaze and facial expressions to her conversational partner…. When speaking, she tended to look down…[she] had a difficult time modulating her eye contact with her speech and gestures…difficulty describing how she feels when she is happy, sad, angry or anxious…. She demonstrated some insight into her own behavior and its effect on social interactions. Selene had some difficulty understanding social relationships such as friendship and her role in the relationship.

“Overall…Selene’s social overtures were somewhat awkward… [she] engaged in some reciprocal social communication…but this was less than would be expected.

“…Selene made reference to highly specific and detailed topics…. She did not exhibit any unusual repetitive hand movements, nor did she engage in any self-injurious behavior....”

That was the best I could do—with a half-century’s worth of learned protective camouflage—using the top 99^th percentile IQ another assessment done the same day showed. I’d been unable to keep my train of thought without looking down. I demonstrated some insight into how weird I seem, and I didn’t rock myself or pick at my hands, even though I felt the urge so deeply that I pinched myself under the table a few times. I was still considered a successful enough specimen to be included in the brain-scanned group. I thought about that, deep into Saturday night.

That night, thinking of the markers in my blood I’d refused to reveal, I let myself wonder if a lot of us might have been better off never having been born. Autistic kids have a sign on their backs that’s a target for tormentors of all persuasions. We don’t really lose it when we leave school— it just gradually gets better hidden for some of us, even if it takes all the energy we have to keep it tucked deep inside. We don’t read subtle neurotypical social cues well, so most of us have a hard time developing and keeping friendships, and knowing which people will take advantage of us. I think the most common effect we feel is the stress exhaustion of trying to seem “normal” while staying hypervigilant about our vulnerabilities.

Sunday morning brought nothing from Christopher. I debated with myself, and then dug into the information on his page and found a contact for one family member, a brother. I followed the link. There were no pictures of my friend in the copious family album I found on his page. I copied Christopher’s brother his last post. I wondered what results from my study participation might have changed things for a little boy learning how to battle through life with a widdershins—not fundamentally broken—mind. 

I re-read my assessment, remembering the conversation in front of the video camera.

“What makes you happy?”

“Working on my art…doing my gardening…being with people I care about….”

“What did you like to do when you were a child?”

“My father brought me home a set of ballbearings…. I know it’s an autism stereotype, but when I’d spin them, over and over…. I was listening to the music of the spheres, learning about the workings of the universe…not mindless….”

“What makes you angry?”

“Cruelty—be it deliberate, ignorant or indifferent.”

“What are you afraid of?”

“Fists.”

“What does sad feel like?”

“Like my heart is a clod of clay…or if it’s that sadness that’s gentle more than grieving…the lighter one is like rain against the window….”

I didn’t have difficulty describing how I feel; that is how I feel. It may not be how I am expected to feel, but it’s the truth, purely told.

By Sunday night, I’d resigned myself that at best, Christopher was hospitalized somewhere. I hadn’t got an answer back from his family. The clay was heavy in my chest, the muffled thuds pulling me down into a dark, dull place.

Mid-day Monday, though, a personal message came through in response to the one I’d left on Christopher’s phone. It just said “still here. Thanks for your care and concern. Will be posting a thanks to all shortly.” He was true to his word, leaving a terse but grateful note on his own page, and tracking down and publicly answering all my posts scattered across the network.

“The water got deep, but my nose is still just above it. Still very depressed, but holding on. Thanks again to all for your kindness. It helps to know I have such caring friends. ”

I wrote to tell his brother I’d heard from him. I finally got a response: “Yeah, he’s a great guy. I worry about him.”

I thanked him for getting back to me.  

Later in the week I watched a little girl with her shirt crooked walking stiff-legged through Target, reading her book without watching where she was going, her pink sparkled feather boa unwound from her neck and dragging behind her, unraveling.

The next day I saw an older girl in the grocery store, soft-bodied, with a calm face and poor posture, flicking her beads around her wrist—winding/unwinding— singing the same strangely sweet note over and over as shoppers avoided her, glaring. I walked past, back and forth getting yogurt. Her tired-looking father studied the refrigerated shelves far longer than politeness allows; he seemed to be trying to read an extinct language carved in a rock. He ignored me as I reached in past him into the cold. The girl never flicked me with her beads, even though I got quite close. I trusted her.

That night the rain ran down the glass, catching a glint from the streetlight…. 

PS : Selene De Packh is a BPPROJECT contributor and she offers her articles to BPP for free and for the shake of our audience only.

Her brilliant Illustrations found above, created especially for this article.

If you want to learn more about Selene De Packh, please visit:

http://prodigadinero.deviantart.com/  

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