In late July I had the immense pleasure of attending Motormorphosis, the International Association for Spelling as Communication’s (I-ASC) annual conference, which brings nonspeaking autistics who spell and type to communicate, and their families and allies, together to learn the latest research, celebrate community, and inspire one another to continue to work for change. It was a mad weekend of soul- recharging connection that I still struggle to fully put into words. But those of you who know me know I’m gonna try, because what I learned there is too good not to share.
1) The Spellerverse is expanding at an astonishing rate
This year, like the few that preceded it, we have seen nonspeakers publish in many different genres: poetry, fiction, nonfiction, playwriting, and op-ed pieces for prestigious journals. There have been documentaries, art shows, and albums. There is an ever-growing number of spellers and typers enrolling in and graduating from colleges and universities. Elected officials at local, state, and federal levels are meeting with their speller constituents and joining the effort to get more of them a seat at the policy table. Many nonprofits, healthcare organizations, research and educational institutions, and even government bodies such as the Interagency Autism Coordinating Committee are adding spellers and typers to their advisory boards. (And let’s give a shout out to the allies who are teaching the foundational skills to make this all possible! I-ASC reported a 30% increase in fully certified Spelling to Communicate practitioners this year.)
2) …but it needs to expand even faster, because too many nonspeakers are still stuck without a means of communication and are suffering.
There are an estimated 30 million nonspeakers globally. And most of them still do not have access to reliable communication. Noah Seback gave a painful but necessary presentation at the conference about the all-too-common experience of trauma in the speller community. He also offered potential paths forward and discussed how we need to come together to promote awareness among mental health professionals and expand access to treatment and healing.
We all lose when so many people remain without a means to communicate with and contribute to their communities.
3) In particular, we need to do more to reach nonspeakers from Black, Indigenous, Asian, and Latino communities who often face additional challenges.
The Spellerverse skews white and wealthy. A panel full of brilliant advocates – both speaking and spelling — from underrepresented communities led a much-needed discussion about barriers to access and how we can work together to overcome them. There are challenges with awareness, financial accessibility, lack of practitioners (particularly in rural areas), and infrastructure (e.g., broadband access sufficient to access remote lessons via video). All of these need to be addressed, with the understanding that it will be a multi-year journey.
4) Spellers are among the most resilient people you will ever meet
Nearly every presentation or panel discussion led by nonspeakers touched on this theme. CrimsonRise built a place for nonspeakers to learn, grow, and advocate from the bottom up, because they couldn’t access any existing places to do those activities. Some speakers spoke of overcoming trauma, while others explained the hurdles of the college admissions process, which is challenging even for neurotypical students. They have persevered in the face of very vocal doubters, including being personally ridiculed in public presentations by those skeptical of their abilities. They have pushed on in the face of anxiety, apraxia, seizure disorders, and many other difficulties that coexist with autism.
5) …and they are incredibly dedicated to helping other nonspeakers surmount their own challenges.
They are telling their stories publicly, not because they are seeking acclaim, but because they want other nonspeakers, who may be feeling hopeless at the moment, to know that so much more is possible for them. They are getting organized to work together as well. We heard from the formidable advocacy and education force that is the Spellers and Allies Advocacy Network. Their presentation “The Truth About Nonspeakers, Let Us Spell It Out for You” has been well received at organizations in the United States, Canada, the United Kingdom, and New Zealand, with more to come. Communication4ALL, under the leadership of their typer Executive Director Elizabeth Bonker, updated us on their educational efforts and policy work with legislators.
6) Science is making impressive advances in understanding the motor and sensory differences that are so central to the autistic experience
Dr. Susan Crawford of the University of Limerick noted that 87% of autistic people have motor delays or challenges. She’s developed a vast array of easy-to- mplement programs to address some of the most common, which can be found at www.getautismactive.com . Dr. Deborah Zelinsky is doing exciting research at the intersection of optometry and neuroscience at the Eye Mind Institute. She noted that the retina is part of the central nervous system and is processing so much more than images. It is also processing where our physical bodies are in relation to other people and objects and constantly scanning for potential threats. If the retina isn’t picking up the “I’m safe” signal from the environment, for example due to issues with peripheral vision, a person can get stuck in fight/flight/freeze mode, hindering self-regulation, cognitive processing, and social interaction.
Dr. Elizabeth Torres’ research also confirms that sensory differences contribute to high rates of anxiety in the autistic population. She notes that most people think of the central nervous system as the brain sending messages to the body, but the body is constantly sending messages to the brain as well. When this feedback loop is out of sync for one or more senses, the fight/flight/freeze response can also be triggered. Dr. Torres’ laboratory at Rutgers University has been taking advantage of the revolution that has happened in the field of biosensors to study micromovements in the autistic population, and she and her colleagues have found significant differences vis-à-vis neurotypical populations
They have found that many of these differences are present at birth. For example, routine auditory screening in newborns measures the evoked brainstem response to sound. Her laboratory found that infants who later went on to receive an autism spectrum disorder diagnosis had narrower bandwidth and delayed wave forms at birth. This means that the autistic babies are not getting exposed to the same breadth of frequencies. This results in developmental delays, and a general difficulty syncing auditory input with other sensory input such as visual or vestibular (movement related). This sets autistic individuals up for challenges with both self-regulation and social interaction. These neurological and motor differences have great explanatory power for common autistic “behaviors”. Also, some of these fundamental problems with syncing sensory input can be addressed with technology. We don’t have all the answers yet, but we can do better.
In the spirit of harnessing technology, Dr. Lorans Alabood and his colleagues at the University of Calgary are exploring how augmented reality technology can help spellers achieve more autonomy. We saw a fascinating demonstration and many spellers volunteered to help with the ongoing research.
7) ...but more, much more, is needed in terms of both fundamental and applied research.
If you are a researcher in a related field reading this, please consider how your work might be expanded to help support nonspeakers. Nonspeakers and their family members and allies can also weigh in on research priorities. If you already have ideas regarding how to do this, here are three places to share them soon:
- The National Institute on Deafness and Other Communication Disorders is soliciting comments from anyone about what the priorities should be in terms of research to support communication in nonspeaking people. Submit your comments HERE. The deadline is September 15, 2023.
- Liz Torres, Jonathan Delafield-Butt, Vikram Jaswal, Susan Crawford, and Ashok Srinivasan are editing a special issue of Frontiers in Integrative Neuroscience focused on movement and sensory differences in autism. In addition to papers reporting empirical research, the editors welcome submissions from stakeholders, including autistic people, families, practitioners, and other allies. The deadline for abstract submission is September 30, 2023, and papers that are invited to submit will be due December 31, 2023. Note that there is an “article processing charge” for papers that are accepted to this special issue. Details are HERE.
perspective-a-decade-later - The Journal of Social Issues has issued a call for proposals for articles for a special issue entitled Using Neurodiversity-Affirming Intersectional Approaches to Build More Equitable Societies and Shape Public Policy. Their call for proposals states explicitly that they are interested in considering proposals from “people who are traditionally excluded from autism research, including people for whom English might not be their first language and non-speaking people.”
The proposal deadline is October 15, 2023. Details are HERE.
8) We also need to work harder at disseminating what researchers have already learned so that we can move on from outdated paradigms.
If you have an autistic nonspeaker in your family, consider sharing this and other new research with their medical and educational teams. If you are a blogger or have an online community through Patreon, Substack and the like, consider highlighting important new findings in laymen’s terms so that more people have access to these insights.
9) Nonspeakers with motor challenges remain greatly misunderstood by the general public and even by many professionals.
Too many people still assume that nonspeakers are not competent enough to understand and participate in the world around them, but also assume that their involuntary motor movements and/or coping mechanisms (aka “stimming”) are intentional “behaviors” that need to be extinguished. We need to work to help people understand that they’ve got this backwards!
10) Head nodding is not enough. We need action.
Please think about what you can do to truly support broader inclusion of the nonspeaking community. If you don’t know where to start, here are some suggestions:
● When you run into nonspeaking people in your community, engage with them. Talk directly to them, not to their caregiver or aide. Use tone and vocabulary appropriate for their age – no baby talk. Be patient if they communicate using an AAC device and need more time to convey their thoughts.
● Push collective spaces in your community – places of worship, schools, theaters, gyms, etc. – to be more welcoming to and inclusive of those with motor and sensory differences.
● Support businesses and nonprofits that employ and/or are run by nonspeakers. Go to their cafes and bakeries, buy their books and crafts, and engage their consulting services to make your organization more inclusive and accessible.
● Donate to organizations that support nonspeakers. I-ASC, CommunicationFirst , Communication4ALL, and AALIVE/Inside Voice are some of my favorites, but you can likely find local organizations in your own community with a simple online search.
● Speak up and be an ally when others denigrate nonspeaking people.
Let’s all do our part to support the incredible spellers and typers who are working hard to change our world for the better.
Jennifer Binder-Le Pape lives outside of Philly with her family. She’s a strategy consultant by day and an ally-CRP in other waking hours. She is immensely grateful to all of the nonspeakers who have widened her perspective over the last few years!
