The Mind that Knows, The Body that Struggles

The Reunion with his phenomenal teacher Einat.

Last week I was invited to deliver my lecture, “A Voice from the Silence,” at Asaf’s former school , a place that was home for him for eight phenomenal years. Walking through the familiar hallways filled me with emotions that are hard to describe. This was where so many chapters of our journey unfolded, years of growth, challenges, and lessons that shaped who we both are today.

It felt deeply symbolic to return there, standing in front of educators and staff, sharing Asaf's story and how he is able to communicate through typing and expresses the most thoughtful, intelligent, and heartfelt reflections.

It’s hard for people to believe that when they see Asaf’s movements, his stims (self stimulating and regulatory behaviours), or moments of challenging behaviour, that they’re witnessing someone with a deep, rich inner world, full of feelings, hopes, dreams, opinions, and ideas. His window of opportunity to communicate is still small, just three hours a week, and his physical limitations are great, but behind them lives a bright, funny, sensitive, and wise young man who understands everything and is thirsty to learn more.

My lecture, “A Voice from the Silence,” was born out of this profound awakening , realizing that for years, Asaf had been trapped behind the silence of autism and apraxia. It tells our mother-and-son journey and invites participants to look again at children and adults with autism who are nonverbal. The central message of the lecture is simple but vital: We must presume competence even when it isn’t visible.

The day before the lecture, I joined Asaf and his typing therapist for a conversation. I shared my excitement about delivering my lecture to the teachers of the school where Asaf had spent eight phenomenal years. Asaf typed, “I’m very excited, I haven’t been there for years.” When I asked if there was a message he’d like me to share, he wrote: “Explain that my body doesn’t act according to my mind’s request.”

Stop and think about what that actually means for a moment. It means that the brain sends a message to the body, but the message arrives tangled, and the body can’t carry out the request. It isn’t consistent , sometimes the body cooperates, other times it doesn’t. Add to that being overwhelmed by emotions, sounds, or bright lights, and you can begin to imagine the constant struggle to function in a world that demands control over your body.

I got a powerful glimpse of this when we arrived at Asaf’s school. His excitement was visible and  I could feel it. This was a place that had been home for him for eight years, filled with memories and connections; and it was clear he remembered it. But when apraxia takes over, Asaf disappears; this is a manifestation of Asaf’s autism. His eyes go blank, his face loses expression. Once he manages to move through that overwhelm, he returns with hugs, smiles, and so much joy. His happiness to be there was unmistakable.

I need to admit I was very nervous to deliver the lecture in front of Asaf. It’s one thing to speak about our story, but something completely different when the person at the heart of it is sitting right there, listening. I kept wondering how he would feel, whether I was representing him faithfully; and how he would experience hearing my words about moments that were also his.

Apraxia is something Asaf deals with every single day. Last week, one of the volunteers who cycles with him called me, frustrated that he couldn’t communicate with Asaf. I explained that when Asaf is cycling, there’s no need to talk, he simply enjoys being in nature, listening to the birds, and soaking in the beauty of the valley. I told him that Asaf understands everything. It’s hard to have a one-way conversation, but sharing, talking about life, about anything, he’ll be interested.

I also explained that when Asaf doesn’t respond to a request to get back on the bike, that’s a classic example of apraxia. The verbal message doesn’t translate correctly from the brain to the muscles; and Asaf simply can’t respond. He often needs a “restart”, a gentle hand under the elbow guiding his arm forward, or a light pressure on his leg, and then suddenly his body cooperates. Sometimes he also needs verbal encouragement. To an untrained eye, this can easily be mistaken for someone who is “mentally challenged,” but it’s not. It’s apraxia, that is, the enormous gap between a fully functioning mind and a body that doesn’t always obey.

At the end of the lecture, one of the attendees approached me and, standing right next to Asaf, asked if I thought he remembered the school and his classroom. To be honest, I was taken aback. I had just spent an hour talking about Asaf’s intelligence and the importance of presuming competence; yet here was someone still questioning his memory and cognition. I wanted to scream in frustration.

It is unfair for me to judge her. I was in that same place not so long ago. But her question reminded me, so powerfully, how deeply rooted our misconceptions are. How quickly people still see the diagnosis, the behaviors, and the apraxia instead of the person behind them.

And that’s exactly why I feel such a strong need to keep delivering this lecture, to reach as many people, communities, and organizations as possible, until every individual like Asaf is seen for whom he or she truly is: intelligent, capable, and full of life.

As Asaf once wrote, “I’m autistic. Every day I overcome my difficulties.”If he can do that, then surely, we can overcome our misconceptions about how we see non-speaking individuals.