Neuroliterature,  Diverse Readers and Our Summer Reading List 

We Expect More from Literature.

 

Summer and reading are twinned in paths that go back deep into childhoods spent reading for hours on end. Reading lists and books pop up everywhere we go. Airport book stores, local libraries display beguiling books to consume under the shade of a tree, on a beach and or buried deep in a couch. Schools send home their lists and all the major newspapers put out their summer reading lists. In the mansions of a book are rooms, each filled with adventure, set in different locales and times. Peopled with ordinary and extraordinary lives, in emotional landscapes that expand our own worlds within.  The New Yorker frequently memorializes this epic summer pastime with their magazine covers. Here are some of our favorites that pay homage to this beloved past time.

S2C, Spelling to Communicate, I-ASC, Autism, nonspeakersS2C, Spelling to Communicate, I-ASC, Autism, nonspeakersS2C, Spelling to Communicate, I-ASC, Autism, nonspeakers

 

 

 

 

 

S2C, Spelling to Communicate, I-ASC, Autism, nonspeakersIn recent years, as nonspeaking Autistics writers have come of age, their voices and their words are beginning to penetrate outside our own community. We are gaining an audience not just within those who believe and value the competence of our nonspeaking autistics but beyond the walls that have kept us in for so long. ‘Darkness is a good place to begin’, writes Tito Mukhopadhyay in Leaders Around Me: Autobiographies of Autistics who Type, Print and Spell to Communicate, Edited by Edlyn Pena. “It is the nascent womb where everything began including the points of light called stars. Darkness is where light finds a purpose. That’s where my stories are born’. 

 

Within diversity publishing, industry rules deny us our stories. Even as they publish books on diversity, they still adhere to the single story.  Matthew Salesses, in his blog We need diverse diverse books, points out that the publishing market encourages you to tick a box when you’ve read a book on diversity.  Books are marketed, according to him, with the tagline,  if you read one book this year, read this one. This is damaging to those whose identities are diverse, he says, “One story becomes the accepted (or only visible) version among many, and the persistence of stereotype and singular model can be extremely damaging to a person’s sense of self, truth, and empathy.” This is the reason why we need to read many, many books on neurodiversity. We  imprint ourselves and our relationships, and decide whom we want to be through stories we’ve read. And when they don’t reflect our identities, we are left without a self, relationships and seeing our place in the world. As we uncover the truths of spellers’ worlds we must read many, many of their books. There are, at this time, not as many of them as we need. Let’s read as many as we can.

Reading and listening are an important part of communication, and of spelling to communicate. When we read neuro-literature we receptively build ideas, absorbing and collecting information that we go on to express in ways that penetrate the darkness surrounding a nonspeaker’s pre-communication days. Autistics, long denied their rightful place in education and in life, find in books a solace and a source of everything. As Tejas Rao Sankar puts it, ‘Books are my lifeline into the world’. Reading neuro-literature is our lifeline into their worlds.

The act of reading uses visual, motor and sensory systems, and we know well that this is an area that hasn’t received the attention it deserves. Ann Donnellan and Martha Leary in their seminal book Autism: Sensory-Movement Differences and Diversity bring this home to us. Nonspeakers have neuro- sensory differences that don’t allow them to initiate, combine, pause, stop, switch, or modify their motor actions successfully. Until recently an autistic’s inability to look at where one pointed was interpreted to be lack of joint attention, arising from lack of intellectual capability. We know that it is, instead, the failure of the person pointing to the object to coach the motor needed for the eyes to follow that directional prompt. 

All spellers are by default able to read, it’s a process that nonspeakers have access to in early intervention with access to developmentally appropriate books in their early years. It is augmented by the availability of text everywhere around us. This access to books in their early years falls off precipitously for nonspeakers as their competence begins to be questioned when their apraxia leaves them with insufficient motor control for speech. It places them in a ‘low-functioning’ track, and they are then given access to functional skills and not the written word. A book-rich life is shut down. As they gain recognition as readers in later years, their tolerance and capacity to read independently needs to be rebuilt. Cristofer Puleo, age 28, prefers to be read to. It’s easier on his eyes, he says, and he is able to interpret information faster. He says when he reads for himself, focusing his eyes is a challenge. He says, ‘Reading words is like seeing pictures in my head. I can determine the words by putting them together with visual representation”. Nick D’Amora, age 22 says, “ It is overwhelming to read a book. Lots of sentences and words to track. It is difficult for me to stay focused and keep my place. I can get lost easily, especially with small print. Also my hands and arms get in the way.” And William Jusino, age 16 says, “Reading is a pleasure and a curse for me.  I love reading but lack the ability to track so I can’t read independently.” Tejas Rao Sankar age 22, said, “I can read ebooks, I can ask for the font size I need, but my eyes need time to lock onto the words, and the effort and concentration required ruins and takes away the joy of the experience.” 

Which brings us to the question of how do readers with sensory motor issues and a yen for books prefer to read? Nonspeakers are as varied in their choice of how they read as is any population. They choose physical, ebooks, text to voice screen readers, audiobooks and have people read to them. Hands-down, the four nonspeakers we canvassed picked being read aloud to. Nick likes the sound of voices, if they aren’t too loud and the expression they bring to it. William likes audio books and especially being read to by his mom because she makes the process very engaging. Nonspeakers choose their way of reading based on their motor-sensory needs and tolerance levels.. Nick loved reading Ido in Autismland, because, ‘he spoke for every one of us ( nonspeakers), and opened many people’s eyes’. Tejas enjoyed Animal Farm, by George Orwell. He says that its theme of how people with power manipulate those without power is important, and Cristofer loves reading the Bible because it has so many stories of value and life’s purpose. William likes science fiction because it is, “mad interesting”.

This summer, William, Tejas, Nick and Cristofer read a book called The Mole People: Life in the Tunnels beneath New York City by Jennifer Toth.  The group reading and analysis was led by Susanne Cannella, S2C Practitioner-in training, who said that the nonspeakers were struck by the parallels between the marginalized people in the book and their own lives as autistic people. It was a metaphor, she said, that surfaced repeatedly in their book discussions. They drew parallels from the way people respond to their autistic unpredictable body movements and vocalizations and how people withdraw their eye gaze and create safe physical distance from the homeless. They identified with the sense of community and life the Mole people built amongst other homeless people.  They saw the failure of organizations that were supposed to provide the homeless with services similar to their experience with organizations that are meant to provide them with an education. Nick said, “ I really enjoyed this group. It was a great way to get together and collaborate. I liked hearing others viewpoints and thoughts, I looked forward to this each week”. 

S2C, Spelling to Communicate, I-ASC, Autism, nonspeakers

We want to invite you to take the summer reading challenge, read on your own, or in a physically distanced group, or in a virtual book group. Whether you are read to, or read on an ebook, or listen to an audiobook, reading and listening to a book read out to you  – dive into a reading adventures with us. Send us your blurbs and book reviews all summer long. We will publish them on social media.

S2C, Spelling to Communicate, I-ASC, Autism, nonspeakers

The I-ASC Neurolit Summer 2020 Reading List – Curated by Ann Jusino and Lakshmi Rao Sankar 

S2C, Spelling to Communicate, I-ASC, Autism, nonspeakersAnn Jusino has a 30 year career as a librarian in public and academic settings.  She is a mother of a nonspeaker, is a scholar and a neurodiversity advocate. Ann is an ardent reader and an S2C Practitioner in training.  

 

The author, Lakshmi Rao Sankar, lives in Brooklyn, has a dog named Obi, and is a passionate gardener. She loves reading. She loves second – hand book stores –  the sensory experience of handling a physical book, smelling them,  discovering the name of their previous owner on the flyleaf.

 

The mission of I-ASC is to advance communication access for nonspeaking individuals globally through training, education, advocacy and research.  I-ASC supports all forms of augmentative and alternative communication (AAC) with a focus on methods of spelling and typing. I-ASC currently offers Practitioner training in Spelling to Communicate (S2C) with the hope that other methods of AAC using spelling or typing will join our association

2 responses to “Neuroliterature”

  1. SATHYA RAU says:

    My sincere hope is that we will have an epiphany into the autistic mind one day, and that
    , i believe will come through the articulation insights of a non speaker.

    • I-ASC says:

      We agree! We have no doubt that many of the great challenges and problems of our time can be solved by nonspeakers!

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