Autism and Apraxia: This Changes Everything
The SPELLERS movement is changing everything we “experts” thought we knew about autism. It appears that we have overlooked a significant underlying condition that should dramatically change the way we approach interventions.
The SPELLERS movement is changing everything we “experts” thought we knew about autism. As a speech-language pathologist and autism specialist for the past 28 years, focused primarily on severe and profoundly affected individuals on the autism spectrum, I thought I knew autism.
I certainly thought I knew the basic language capabilities of my non-speaking patient population. I mean, that was my job: to assess, recommend and implement appropriate communication therapies and modalities for people with communication deficits.
Yet I began to question my professional understanding after reading “Underestimated: An Autism Miracle,” by J. B. and Jamison Handley. The book highlights the inspirational story of Jamison (Jamie), a non-speaking, severely affected autistic teenager, who finally broke free of his silence.
Jamie learned to successfully communicate through a low-tech Augmentative and Alternative Communication (AAC) letter stencil board. The therapy approach is called Spelling To Communicate (S2C). It is a discrete and repetitive motor-prompting method based on the theory that people who suffer from apraxia have an underlying severe motor planning disorder — not cognitive and intellectual deficits, as we “experts” had wrongly presumed.
The book inspired me and sparked my curiosity: I wondered what it could mean for other people with autism and for my profession.
To my disappointment, my speech-language pathology credentialing board, the American Speech & Hearing Association (ASHA), dismissed the book, the testimony of the authors and countless other people who are claiming successful communication through this S2C method.
In fact, ASHA outright warned providers against it, discouraging any speech-language pathologist from considering this AAC therapy method for their patients for fear of jeopardizing their ASHA certification.
ASHA’s warning also destroyed any hopes parents had for insurance reimbursement for AAC treatment, or access through state services or public school individual education programs (IEPs).
When I learned that J. B. and Jamie Handley were releasing a film based on their book and this AAC motor training approach, I was both curious and hopeful that if this were a valid therapeutic approach, surely ASHA would retract its warning, endorse the method and help non-speakers everywhere get access to this life-changing communication modality.
When the film “SPELLERS” was released, I critically watched, through a trained eye, for what ASHA claimed S2C to be: a dangerous false hope that a non-speaking individual can spell to communicate and that S2C is simply a reflection of “facilitator bias,” a “documented phenomenon in which a helper unintentionally influences the message produced,” and that any communication coming from this modality is not that of the non-speaker, but that of their wishful communication partner.
Yet, this is not what I observed at all. As a longtime behavioral therapist, I can identify facilitator bias prompting and I looked for such in the film. I watched as multiple non-speaking individuals spelled out complex language on a variety of AAC boards and devices, and even on independent typing on keyboards.
I observed independent language expression with and without the assistance of a communication partner. On top of that, I watched how these non-speakers progressed to more complex AAC models and how motor prompting faded as the patients continued to progress in their motor planning and sequencing.
The language complexity of these non-speakers was astonishing. In all my years working with this population and the wide diversity of communications disorders I have treated, I have never seen this — especially in a population considered to be severely affected individuals on the autism spectrum.
This is a population we have long assumed to be cognitively and intellectually impaired, who severely struggle with language comprehension and expression, and who would be most incapable of such a high level of learning and language.
Yet, these individuals profiled in the SPELLERS film were doing just that!
This film, and the success stories of countless individuals, families and providers, prove that those of us who have been considered experts in the field of autism — whether as providers, therapists, teachers or even parents — have been wrong. We have missed a crucial underlying deficit: apraxia.
For those unfamiliar with apraxia, it is a neurological condition that makes it difficult or impossible to make certain movements. This happens even though your muscles are normal and you have the understanding and desire to make these movements.
Apraxia can vary in severity, can be inconsistent and can affect a variety of different muscles in the body. A person with apraxia can appear as if they do not comprehend what is happening around them, or the message they are being given, even if they fully understand and want to respond appropriately.
Apraxia isn’t a problem with understanding language, it’s a motor planning and sequencing disorder that affects starting, stopping and completing the motor movements needed to successfully communicate and interact with the world around them.
When I consider the implications of this missed underlying condition, I feel a great sense of regret and deep sorrow for my role in not recognizing these individuals’ true lived experience and their unmet potential.
There are countless non-speaking children and adults in the world who have been misunderstood and deprived of a life fulfilled. Deprived of a life where they can communicate what is truly within, to share their thoughts, their ideas, their passions and heartache.
This new apraxia perspective profoundly changes everything we presumed about autism. It changes everything from assessments, recommendations and therapeutic approaches, to goals and expectations.
It changes how we advocate for people on the autism spectrum and how we educate parents, teachers and providers. Apraxia changes everything.
Unfortunately, change in orthodoxy is never easy, and we have yet to see ASHA reverse course and acknowledge this new understanding or endorse this valid and effective AAC motor training method.
Thank God for those who are taking the initiative to bring awareness to providers and educators like myself by publishing books, making films and sharing their success stories. It is these brave and resolute individuals and families within the SPELLERS community and the Spellers Freedom Foundation who are making a difference and working to give unrecognized apraxic non-speakers the voice they so desperately deserve.
I pray one day soon ASHA will finally hear the pleas of this amazing community of non-speakers and help give a voice and a future to all those yet to be recognized for their full potential. Meanwhile, providers, educators, and parents: Watch “SPELLERS” — and help be the voice for change.
Author’s note: I intentionally use the term “non-speaker” throughout this article instead of the clinical term “non-verbal” in compliance with the preferences of non-speaking individuals and advocates who accurately argue that these individuals are not mute and can produce verbal outputs and verbally communicate. They have a valid point; if you can cry, scream, whine, grunt, echo and laugh … are you non-verbal?
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