THE ELEPHANT IN THE NONSPEAKNG ROOM
Listening to Emotions, Boundaries and Trauma
by Noah Seback & Keri Delport
So what is the elephant in the nonspeaking room? It looms so large and obvious, yet we pretend it’s not there….but there it sits, crushing the life out of nonspeakers. Let us spell it out for you (did you get what we did there?):
Nonspeakers have trauma: underestimated and misunderstood? Check. Likely to be physically restrained or abused? Check. Denied opportunities and basic human rights? Check. Affected by run-of-the-mill life stressors like loss, death, divorce? Check. This is all trauma.
And all of this trauma is readily absorbed because nonspeakers have heightened emotional awareness. It accumulates and builds. Then, combined with sensory and motor differences, it eventually erupts in dysregulation and a primal fight/flight/freeze response. The lizard brain reigns supreme. Bodies spiral out of control and nonspeakers become a ‘behavior’ to be managed. Described as aggressive, defiant, disruptive, and the-list-goes-on, their actions are seen wrongly as deliberate. But they are not! They are a reflexive survival response beyond their conscious control. Over time, their bodies become primed to react this way like muscle memory kicking in. A vicious cycle and motor loop is born: constant anxiety and anticipation of threats leading to body dysregulation seen as intentional leading to physical restraint, segregation, verbal/emotional shaming leading to trauma and more anxiety. Around and around it goes. Nonspeakers are devastated.
If the elephant is so large, then why is it ignored? Why is there is not near enough honest 2-way communication happening between nonspeakers and allies to tackle this dilemma? First, nonspeakers lack a seat at the table. Although they are the experts, they are not consulted, making the discourse slow to change. Also, it’s an uncomfortable and upsetting subject for all involved, made worse by complicated and complex boundary dynamics. The family is not adequately prepared or equipped. CRP’s and practitioners are bound by ethical considerations; they are not therapists. Nonspeakers themselves grapple with initiation issues because of apraxia or privacy concerns or fear of alienating close support.
They now have a voice but rely on a CRP, a middle man in a sense, for their voice to be heard. There is no denying it: there IS a power dynamic, whether we like it or not. Whoever holds the letterboard is in that power zone. It exists, unnamed, and we need to be aware that spellers may be afraid of standing up for themselves in the midst of those complex boundary dynamics. The holder of the board, as a parent or CRP, or therapist, needs to have the courage to open up uncomfortable conversations. They need to prepare themselves for the possibility that what they hear may make them very uncomfortable. It can be easy to stay in your comfort zone and not invite these conversations in.
But then what’s the point? Why encourage working towards open communication and autonomy, if conversations that invite vulnerability are then avoided? Giving a nonspeaker a way to communicate what is most important to them, and then not creating that space, or being prepared to sit with your own discomfort is like putting the board away and silencing their hard-won voice. Those closest to the speller can’t demand that the world listens, when they themselves may not be fully listening.
To be able to invite these conversations, parents have much unlearning to do. We know this now from the direct input of nonspeakers, As parents, from the start you may have HAD to speak for your nonspeaker, to advocate, to interpret actions into thoughts so that you yourselves could act on them. Now, there must be: unlearning to speak FOR your nonspeaker, and rather to speak TO them; unlearning that you know what’s best for your nonspeaker without consulting your nonspeaker; unlearning leading, and moving into a space of being led; unlearning doing for, and moving into supporting your nonspeaker so they can do. Even with spelling, these relationship lines remain blurred and boundaries are overlooked.
Boundaries may be the last thing to cross your mind due to the nature of supports needed by nonspeakers. But we all need and value them, including nonspeakers. Not respecting boundaries adds insult to injury and further compounds trauma.
So support people, do your own therapeutic/emotional work as you embrace the changes you yourself have to make to support the nonspeakers emotional health. If you don’t, remember heightened emotional awarenesss? Empathy is strong and your energy will be soaked up by the nonspeaker. Your energy matters more than your words. Be genuine, authentic: mean what you say and say what you mean. This is so valuable in terms of nonspeakers’ regulation and avoiding greater distress.
The elephant has now been exposed. For the most part, despite accumulated trauma, nonspeakers lack authentic emotional interventions beyond psych-meds and a behavioral approach that often misses the mark. Without an honest appraisal of their emotional distress and an established path to intervention, those closest to the nonspeaker often ignore their potential inner turmoil. When sought out, professionals need to be working with this human distress, rather than treating autism and treating ‘behavioral’ issues. This means engaging nonspeakers in discourse about their emotional health. They need access to and accommodations for “talk therapy”. Professionals must be willing to accept their communication as legitimate, to trust their emotional/cognitive competence, and accommodate their sensory/motor differences. Whether professionals, parents, or CRP’s: boundaries and privacy issues must be taken into account. Initiation and the power dynamic cannot become roadblocks to nonspeakers’ emotional healing.
Let the trauma that has lived in their heads untouched for so long (unless it has erupted from their bodies) be heard. We all need to recognize, face and engage the elephant in the room. If not, it will continue to crush nonspeakers.
Noah Seback is a nonspeaking autistic who from his home in Atlanta, who intends to reach the world with his message of hope for nonspeakers plagued by trauma, runaway emotions, and bodies. He is a self-advocate and lived experience expert soon to launch qUirk, his business as a peer support specialist. Check him out soon at quirk thrives.com, and his blog at thisismenoah.com.
Keri is an ally and advocate for nonspeakers. She is a South African living in England, an S2C PIC and Trainee Counselling Psychologist finalizing her applied doctorate with a particular focus on and interest in the experiences of non-speaking autistic adults and how these may guide psychotherapeutic practice. When not buried under books or seeing clients, Keri enjoys endurance triathlon as her purposeful motor focus.
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
Great article and eye opener Noah and team! Hope you can continue to take this message far and beyond and share with other peers! Bravo Zulu!
We agree Bravo! Keep up the great work.
Congratulations on writing a powerful and needed piece of self-advocacy; I want to share your article with so many parents and people who work with non-speakers. We began leveraging talk therapy (psychological counseling) four years ago to help understand and address non-deliberate behaviors. Yes, it takes courage, but it has been valuable source of relief and empowerment.
Hyam, agreed very powerful. Please do share!
Wow. I’ve learned so much from this post.
Jill, we couldn’t agree more! We learn so much from the spellerverse.