Immersed: Our Experience with Autism

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“Immersed” Takes an Unflinching View of Severe Autism

[This review first appeared at https://www.sfautismsociety.org/blog/immersed-take-an-unflinching-view-of-severe-autism in January of 2017.]

 (Clickable image to link in Amazon)

Immersed: Our Experience with Autism

Text by Valerie Hall

Photographs by Bruce Hall

By Jill Escher

I’ll start this review with a fitting quote from the late galactic princess, actress and author Carrie Fisher. Talking to Charlie Rose, she said, “I like the truth in any form. It only bothers me if I’m asked the truth about other people, I cannot tell their truth. I will tell mine in any form.”

When it comes to the difficult subject of autism, personal truths are hard to come by these days. The media tends to emphasize the small-victory stories like the spectrum boy whose 3-point shots brought his team to victory, the quirky, withdrawn young men who land specialty jobs at tech companies, or the troubled autistic girl belting out a holiday song on YouTube. And in advocacy circles, one is hardly allowed to mention the unremitting turmoil, exhaustion, and despair present in many autism homes without incurring the wrath of a militant minority that has anointed itself with the job to paint an infinitely rosy picture of this mysterious and often incapacitating brain disorder.

But Valerie and Bruce Hall, a couple living in Southern California who have twin boys with severe autism, take the Carrie Fisher approach and rather than trivializing or minimizing the tragic dimensions of their boys’ disorders or pretending to speak for all with “autism,” the talented duo steadfastly tell their own truth. And they tell it hard, in both words and pictures in this unusual large-format art book, acknowledging that autistic kids like theirs “generally do not make inspirational news stories.” Bruce, a photographer who has been legally blind since birth, tells his truth in photographs, while Valerie, a gifted writer with a poetic bent, shares her painful reality in poignant prose accompanying the images.

Immersed is not the first to take the art-book approach to portraiture of classic forms of autism. I know of Echolilia, by Bay Area photographer and autism dad Timothy Archibald, and Understanding Stanley by UK autism mom Rosie Barnes. Photography fans should also check out photographer Mel Lindstrom’s artful series on Elevators, created in honor of his autistic son’s obsession. Immersed is a jewel in this subgenre, for it vividly opens the world’s eyes to an all-too-often hidden tragedy, and invites the broader society to understand, and to help. As autism rates skyrocket (up 40-fold in California over the past 30 years, soon to reach an astonishing 100,000 severe cases) each autism story should not only be told, but considering the vast societal implications, should also be considered front-page news, adorned with blazing neon lights, clanging alarms and giant arrows flashing “READ THIS! ” I wish all autism families had the ability and drive (and time) to tell their stories as the Halls have done, for the public deserves to hear hard truths about autism that will affect us as a society for decades to come.

As I first leafed through the book, seeing picture after picture of the twin boys James and Jack with vacant expressions and engaged in the most simplistic of repetitive of behaviors (jumping, splashing, screaming, spinning, swinging, for example), my favorite definition of the word “autism” came immediately to mind. The late Bernie Rimland, in his seminal book “Infantile Autism,” published 52 years ago, offered perfect terminology when he called the central dysfunction of autism a “closed loop phenomenon.” He likened autism brain circuits to a track lacking switches and sidings that would promote integration of complex information. Instead “raw material comes and goes, but the parcels are never opened and their contents are not mixed to form any useful compound.” In autism, said Rimland, “stimuli are apprehended but not comprehended,” resulting in profound learning disability and behavioral abnormalities that are the outward manifestation of an inner world stuck on a closed loop rather than a flourishing web of connections fundamental to meaning, cognition and development (Infantile Autism, 50th Anniversary Edition, p. 111).

This exasperating and stubbornly intervention-resistant closed-loop phenomenon is the core of the autism portrayed in Immersed. While the likes of author and inventor Temple Grandin may get all the attention, she and other highly articulate and intelligent people do not come close to representing this catastrophic core mental dysfunction. Indeed, Jack and James are poster children for classic closed-loop autism. They appear in the photos to be virtually imprisoned inside the misfiring loops of their funky-wired brains. While their typically developing older sister Christina peers from the pages with a sparkling intelligence that connects effortlessly to the people and things around her, the boys are lost in small worlds, or circularities, of their own. James stares at a spinning top. He plugs his ears to keep out sounds. In spite of many efforts to curtail the behavior, Jack bangs his head, leaving a red bruise.

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The photos are at once in-your-face and immediate—probably a byproduct of Bruce’s visual limitations and inability to see from a distance—but also remarkably non-intimate in the sense that the subjects never connect to us through the camera. Typical boys of Jack and James’ age clown for the camera, gesturing, sticking out their tongues, showing off, smiling, or otherwise performing kid antics. But these young subjects have no awareness of the camera’s function, they never pose or react or are seen doing anything remotely purposeful in response to their father’s clicking of the shutter.

Those of us who live with severe autism can easily relate to many of the pictures as scenes ripped straight from our own lives. The miserable therapist fruitlessly trying to teach a basic “feed the baby” task as the oblivious autistic student instead flicks plastic utensils. A helpless grandfather going through the joyless ritual of a birthday party that means nothing to the boys except for the pleasure of being able to fiddle with new mylar balloons. Boys wearing Halloween costumes but not having a clue what the outfits mean. A boy jumping high and flapping his hands at the sight of a wave at the beach. The boys are seen alternatively biting a swing, ripping out plants, splashing in water, staring intensely at their hands or plastic rings, screeching, scribbling, running about naked. These private scenes, artfully captured with originality and multi-layered meaning, are all too familiar to me and so many other families.

The visions of daily chaos and surreal disconnection are matched by Valerie’s uncanny ability to capture on paper the despondent interior ruminations that clearly occupy her—and the heads of many other autism parents. In one of those “We’ve been there, too” moments, Valerie describes when Jack escaped out the back gate and was found some minutes later in a recliner in a neighbor’s garage, rocking back and forth, holding a newspaper. She writes:

“To Jack, the unknown location, the unknown chair, the unknown neighbor himself was no cause for alarm. Similarly, the sudden arrival of his panicked parents was not cause for relief. Jack didn’t look up as we approached, didn’t seem to notice when I picked him up off the chair. His only concern, as he twisted around in my arms, was whether he would have to let go of the newspaper.”

 

I’ve heard variations of this sudden-escape story from dozens of autism parents, but rarely is this story told so well, capturing the simultaneous joy and heartbreak of the moment. In spite of the gritty-reality approach, the book never loses respect for the boys and is never without love. In a theme common to autism parents, two narratives play tug-of-war in her heart: “Every day, I embrace the reality of who Jack is. I close up the wound, tell it to heal. Every day, Jack grows, and does not grow. And the wound is reopened. As long as he is here, as long as the days keep coming, the losses recur and evolve and accumulate. I see and love Jack for who he is. I see and mourn Jack for who he will never be….”

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A few “Immersed”-like scenes from my own home. Feathers cover a floor after my son rips a pillow. A self-scratched forehead. A chewed-up piano. As the Halls deftly portray, autism can be a viciously disabling and chaos-inducing mental condition.

Valerie expresses a fairly universal autism-mom experience when she describes going through daily life feeling almost alien “among all these people with their normal lives, normal concerns, normal frustrations and problems.” But it’s the lack of growth, development and learning that most distresses her. Every day is Groundhog Day at the Hall residence, with precious few skills achieved over the years in spite of endless therapies and interventions. The stunted development is in sharp contrast to the hyperabundance of caregiving, cleaning and chaos.

For me, the book also provokes important questions. Why do Jack and James have autism in the first place? (The book does not address this, but from a public health and social services point of view, it’s clearly an urgent question, and since my main focus in autism is crafting pilot research projects examining causes of genomic disruptions I could not help but wonder.) Why have cases like these, once so exceedingly rare that pediatricians would see one or two in the entire course of a career, been surging in number since the 1980s? Who will care for the boys and the countless thousands like them as they age into adulthood and parents become infirm and die?

It also begs the question, what is “autism”? Valerie voices a simmering resentment toward trendy Pollyanna views of autism and the euphemism-mongers of the neurodiversity movement, who consider autism just a difference, or even a gift, and not a disability. She writes:

“It baffles and enrages me that there are people who call autism a gift, simply a different way of thinking and being…. But I would no sooner wish for [my sons] to have lung cancer. And I would dare those people who call autism a gift to exchange their child’s brain, or their own, for one with autism…. You hypocritical proponents of neurodiversity, who would ferociously stand against a cure for their debilitating disease, who do not have to live my boys’ lives, do not experience the pervasive and devastating consequences of autism. You may offer me platitudes or judgment, but you would never trade places with me, or with my boys, or with any of the people you claim to defend.”

 

Her words reminded me of a panel at the Autism Society of America conference last year, featuring parents who felt abandoned and ignored by autism advocacy movements which chose to emphasize happier narratives, or disregard the severe side of autism, not to mention countless other parents with whom I work each day. Valerie is hardly alone in her sentiments: autism is a term now used so broadly that it has prompted ridiculous infighting and needless confusion.

The book ends on a slightly hopeful note with James finally, at age 10, learning how to say a word, reminding us that people with autism, even profound autism, do have potential to learn and develop. And the besieged family is finally afforded some relief when they find placements for their boys in a group home. Many parents like the Halls, including those on the ASA panel mentioned above, who lived the same tumultuous existence found sanity and peace only when they placed their children in the hands of staff trained and equipped to care for them in group homes. For those parents, as for the Halls, the placements, however imperfect, were godsends that enabled the families to survive; parents who had seriously considered suicide or murder-suicide after years of exhaustion and anguish found a relief valve. For her part, Valerie finds her time with the boys can now be spent focusing on nurturing connections rather than drudgery: “Before the boys were placed in a group home, we were so worn down by the many and varied challenges of autism that we could only rarely actually enjoy being with them.”

This is possibly the ultimate message of the book: autism can be so hard and demanding that no family can go it alone, and it must be seen and treated as a shared social responsibility. It is art serving as a cry for help. It will take more than a village to create solutions for this burgeoning population of severely mentally disabled individuals who need lifetime care. In the meantime, it is urgent for parents like the Halls to share their own truths.

Buy the book: 51LkijOCYSL._SR600,315_PIWhiteStrip,BottomLeft,0,35_PIAmznPrime,BottomLeft,0,-5_PIStarRatingFIVE,BottomLeft,360,-6_SR600,315_ZA(17 Reviews),445,291,400,400,arial,12,4,0,0,5_SCLZZZZZZZ_

(Clickable image to Amazon link)

Bruce Hall’s website: www.brucehallphoto.com

Jill Escher is the president of Autism Society San Francisco Bay Area, founder of the Escher Fund for Autism, a housing provider to adults with autism and developmental disabilities and the mother of two children with nonverbal forms of autism.

One response to “Immersed: Our Experience with Autism

  1. Could Bernie Rimland have applied the 1999 hypothesis then updated in 2018 optimum space-time events method to: e.g. autism’s inherited nearly all random DNA base pair combinations, their environments, imaging methods and to their neurons feedback and feed forward loops then Rimland’s publication would have been PHYSICAL.
    Its really unfortunate that long ambiguous sentences are necessary in the absence of simultaneous equations. See the Newton Medical Hypotheses 1999 52(1) pgs. 77-83 for such illustrated equations.

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