STEP-ASIDE: NEURODIVERSITY-FRIENDLY SPACES INCLUDE MOTOR!

I-ASC relies on its Nonspeaking Leadership Council, and other nonspeaking/minimally/unreliably speaking (together, the “Nonspeaking” and “Nonspeakers”) neurodivergent advocates to guide its mission and advocacy.  In our first blog in the “Step Aside” series, we explored ways to demonstrate that neurodivergent wellbeing is individualized and valid.  In this and future blogs in the series, my colleagues and I hope to share some guiding principles in creating Neurodiversity-friendly, or rather #NeuroInclusive (1) spaces, especially ones that empower Nonspeaking people to make decisions for themselves and optimize their wellbeing.

Our first guiding principle in creating NeuroInclusive spaces for Nonspeaking people around us is that MOTOR differences must be considered, respected, accepted, and accommodated!  Neurodiversity-Friendly Spaces Include MOTOR!

Our experts – being actually Nonspeaking people with sensory and motor differences – consistently describe their brain-body disconnect, saying that their bodies are unreliable when it comes to executing planned movement.  It may appear to someone else, or feel to the Nonspeaking individual, that they are often doing something wrong, and can’t conform to able-bodied people’s standards of “appropriateness” in social, educational, or other environments. Nonspeakers tell us that their unreliable and impulsive movements are due to their sensory and neurological differences, not their intent.  If a social, educational, or other event welcomes those individuals with neurological differences, then it must include and accept their sensory and motor differences.  

Let’s explore how some Nonspeakers might like their bodies and their motor supported.  We will also discuss effective support by respecting the Nonspeaker’s personal space and boundaries. Let us begin…

Divyesh Jain, a member of I-ASC’s Nonspeaking Leadership, advises us to,

“Allow the speller to work through the dysregulation. Our outsides do not match the insides. If I am dysregulated, it does not mean I do not want to spell. Coach my body to sit and spell.”

Providing further advice on how we can support him, Divyesh also says:

“Coach my body to slow down and participate. For example, if I am running in a restaurant, coach me to sit down.”

When Divyesh says “coach my body”, his communication regulation partner (CRP) can coach Divyesh to sit down by prompting the motor actions needed.  

How does one coach the body?

Rather than telling Divyesh “Get back to your seat now!” and putting the onus on Divyesh to obey a command, prompt his body parts instead.  Speak supportively to encourage one small movement at a time, for instance, “Step forward with your right foot” while touching the right leg as an extra prompt, followed by “Ok, now, lift the left foot and step forward with the left foot;… good, now step forward again with the right foot”….” turn your body this way, toward me…” and so on.  It would be appropriate to get Divyesh’s consent before touching a body part for a prompt.  If the person’s communication output is not at a reliable stage yet, be gentle with any physical prompts and remain reassuring, not authoritative.  Body language is not always reliable with a speller because spellers often cannot get their bodies to do what their brains want. For this reason, we are wary of presuming that body language reflects a speller’s actual intent, as Divyesh says that even if his body is dysregulated, coach him to sit and spell. With this in mind, if there is strong opposition to physical touch, it is always better to stop and focus on co-regulation instead.

Divyesh’s suggestions are only one example of a neurodiversity-friendly approach to supporting motor differences.  There are other ways we respect and accommodate neurological differences through motor support. 

For example,  I-ASC’s Nonspeaking Leadership Council member Sarah Ackerman suggests, 

“Help the speller by holding the [letter]board steady.”

As a CRP, I know that any lack of stability on my part can disorient the body of the speller I am supporting and throw off their coordination and accuracy while spelling. (Not to mention the partnership’s credibility is often questioned when a letterboard is not held steady, and that can negatively impact a Speller…but that’s another story). 

Sarah reminds us that while developing fluency and motor skills on and off the letter boards, “the speller needs time to learn the motor”  and urges communication partners to “be patient”.

Sarah wisely brings up the point that, at certain times, the greatest action to support the motor is none, and at those times, waiting is as powerful a verb as any.  Giving insufficient time for action and responses can negatively impact Nonspeakers’ motor functions and delay their progress in executing their planned actions.  

When we don’t give enough time, it often leads to dysregulation.  Then, one must ask, “How can we support dysregulation in a NeuroInclusive way?”  Sarah recommends, “stay calm and understand we have a hard time controlling our bodies.” 

Divyesh and Sarah’s messages are clear: 

“Coach my body, help me, be patient, stay calm, and nurture understanding.”

This is a contrast from what many of us parents learned in our journeys with our apraxic children.  

Many of us learned to correct a person whose movement did not look “normal”, or ignore them because we were warned this was “attention-seeking behavior”.  I’m sure that terminology sounds familiar to many of our blog readers. Most of us parents were taught by professionals to call movement differences or impulsivity a “behavior”, which doesn’t necessarily mean that it is intentional, but it surely implies it!  Sometimes we parents compare our children to someone else, strictly based on our perceptions of their motor control at that time.  We might say something like “Look at how nicely Ben is sitting,” not realizing how hurtful these comments are to someone who would love nothing more than to sit nicely but can’t get their body to slow down long enough.

Spellers tell us that these comparisons are not helpful when they cannot will their body to do things. Some Spellers, like Divyesh and Sarah, tell us that they would like NeuroInclusive support, like body coaching, to manage these differences and work on a successful outcome.  

Our Nonspeaking Leadership Council members explain that body coaching can change their experience from one that goes awry to one that feels successful.  New families in the Spellerverse may find the idea of “coaching the body” both simple and impossible for their apraxic loved ones, who seem to have bodies that either never stop moving, or never get going.  I agree, and it is hard at first!  Coaching the motor to follow prompts for purposeful movement gets much easier with time, frequency and practice, just like spelling does!

Here are some resources that might help with supporting the Motor:

• I-ASC is always developing resources in body coaching.  Search “coaching the motor” on our website.
• Here are some ideas on respectful language for coaching a tricky body
• When you see I-ASC advertise one of their free webinars about coaching the body – register for it!
• Check out these Motoriety Motor Hacks!

Advanced spellers in our community can also use self-commands to move their own bodies purposefully!  This is something S2C Practitioners can guide you through.

Like Divyesh and many other Nonspeakers have told us, if your Nonspeaking loved one is not successfully participating in an event or their body parts are having a hard time doing what the mind wants them to do, and body coaching is not working out, this does not mean that they do not want to be there, or that they are not interested.  In these situations, it is best to first look for and eliminate any imminent threats (sensory or emotional).  If the Nonspeaker has developed fluency to reliably communicate, they should take the lead in problem-solving.  

What if the nonspeaker has no access to reliable communication?

It is always easier to troubleshoot when a nonspeaker can communicate with open-ended thoughts by spelling or typing and has a trusted CRP available. Sometimes there is no CRP available, or the Nonspeaker is still building their motor planning skills for purposeful pointing and accuracy in the early “Acquisition” stage of spelling.  For those that cannot direct what specific motor supports they require in a social situation,  Sarah suggests:

“Keep looking at our body language for signs of stress. Recognize when we are getting dysregulated and move to a different location that is calmer.”  

When the whole body and mind is in complete distress, we never quite know what to do. At the inaugural Motormorphosis conference in 2017, which was during my and my son’s first year of our spelling journey, I asked a panel of Nonspeaking participants something that I’d been wondering for years: 

“What can parents do to support you during a meltdown?”.  The answers were so similar across the board.  I heard the following comments from different participants read out loud and I recorded them: “stay quiet”, “stay calm”, “do not add your dysregulation to mine”, “be patient”, “let me ride this out”, “wait”, “wait for me to calm down”.  

The verdict is out!  Stepping aside and giving quiet support seems to be the way to go!

Stepping Aside: How much is too much support?

Animated storyboard with two frames, set on a dark grey background. Frame one: a happy non-gendered grey humanlike figure, labelled “ME, A NONSPEAKER, DOING THE THING I WANTED TO DO” reaching out toward a large, round, yellow object labelled “THAT THING I WANTED TO DO”. Frame two: a larger pink non-gendered figure labelled “YOU’RE DOING JUST FINE ON YOUR OWN, BUT I’LL HELP YOU ANYWAY”, with arms wrapped around the waist of the smaller grey human figure from the first frame.  The smaller grey figure nervously smiles with a large drop of sweat on their temple, and is now labelled “BUT…I’M DOING JUST FINE…]

My son has directed staff at school to stop holding him by the elbow when they walk beside him, especially since he’s not “a runner”.  He’s happier when they don’t always walk beside him if he’s with his friends or classmates.  Rather than doing everything for him, like packing his bag, or putting a chair on his desk at the end of the day, he would prefer they spend the time coaching his body on how to do it because that will help him develop the automaticity and confidence to do it on his own. 

There is nothing shameful about requiring and receiving support, in fact, we all, neurodivergent and neurotypical, need support to get through our day, it’s just that certain types of support are expected and acceptable in our societies and cultures.  Backing off from giving support that ISN’T needed is also NeuroInclusive! Many of us call this micro-managing in the work world, it bothers us too.

Every Nonspeaker with apraxia has a different opinion as to whether, when, or how they want their bodies supported to participate in a particular event or activity. Whether or not they can ask for support, and whether or not that support is successful in helping them navigate their bodies. Nonspeakers wish for inclusion and acceptance of their motor differences in social, educational, and all other environments. 

We look forward to sharing more ideas about stepping aside in order for Nonspeakers to create their own NeuroInclusive stories in the future!

Giorgena Sarantopoulos serves on I-ASC’s leadership cadre, and as Faculty for S2C Registered Practitioner training while running her own S2C practice in Toronto, Ontario, and raising two teenagers.  Giorgena strives to learn more about creating a NeuroInclusive world.
I’d like to acknowledge and give special thanks to I-ASC Leaders Divyesh Jain, Sarah Ackerman and Monica van Schaik for their collaboration on this blog entry and our STEP ASIDE  webinar.

(1)   Borrowing the term coined by our friends at neurodiversity advocacy dynamo NeuroClastic, “NeuroInclusive”  describes ”spaces, activities and programs that are intentionally, actively designed to foster inclusion for people who are different from neurotypes – like Autistics, ADHDers, PDAers, dyslexics, etc.”