The Curse of Apraxia

Apraxia is a curse for any non-verbal individual with autism. Imagine being fully aware, fully intelligent, yet trapped in a body that simply cannot perform what your mind wants it to. The brain sends the message, but the body doesn’t carry it out.

I only learned about Apraxia last year. Can you believe that for 23 years, I had no explanation for so many of Asaf’s struggles? I presumed, incorrectly, that he was incapable or simply didn’t understand. The truth was far more painful and powerful: he understood everything, but his body couldn’t reliably execute the commands his mind was giving.

It was through the writings of Ido Kedar, a non-verbal autistic individual, in his book Ido in Autismland, that my eyes were opened to the world of Apraxia and Dyspraxia. His words gave me the framework and language I had been missing for decades.

Apraxia and Dyspraxia are both motor planning disorders. In simple terms, the brain knows what it wants the body to do, but the signal doesn’t get carried out smoothly.

• Apraxia is the difficulty in planning and carrying out purposeful movements, even though the person understands the task and wants to do it. For example, asking Asaf to take out a spoon from the drawer, but the body wouldn’t react or he would pass me a fork.

• Dyspraxia is often used to describe a milder or broader difficulty with coordination and motor skills, like problems with balance, fine motor tasks, or sequencing movements.

Neither of these conditions means the person LACKS intelligence or understanding. The thoughts, words, and intentions are there, but the pathway from brain to body is disrupted.

Looking back, I can see the consequences of Apraxia in so many moments: why Asaf is unable to drink from a straw, why speech never came, why sitting down on the floor is nearly impossible, why he can’t blow air through his lips to do something as simple as blowing bubbles or birthday candles, why certain movements are so frustrating for him.

For years, Asaf simply wouldn’t try tasks he knew were motorically challenging. He had no motivation, he already knew he wouldn’t succeed. Or perhaps just the thought of his own body betraying him was enough for him not to even try. From the outside, it often looked like refusal, stubbornness, or lack of ability. But now I understand differently: it wasn’t that he didn’t want to, it was that he couldn’t trust his body to carry out the simplest commands. Living with this constant disconnect must be exhausting, extremely frustrating, and heartbreaking.

I read a post this week written by a mother of a speller, who shared her son’s insights about his dysregulation:

“It may look easy to regulate myself, but it’s a constant battle within. I have gained much more control of myself, but sometimes I lose the battle. All the stress of knowing how hard my body will fight only increases my anxiety. My body tends to sabotage the things I want the most. It’s so hard. It’s like my body knows what I love the most and sets out to sabotage it.”

Now imagine having to face this all over again every single day.

On Monday, Asaf returned to his sports group. A photographer in the group shared pictures of him sitting on the floor for the cooling-down exercises. My heart skipped a beat. This was the first time since he began attending the group. This is a huge success: a new neural pathway has been created, one we now need to coach and strengthen.

Asaf attends a center called Merchavim once a week. Also attending are another 11 non verbal individuals with Austism. There, he connects with his friends through typing, and together they care for and ride the horses. As a child, he loved horse therapy, but as he grew older, mounting the horse became increasingly difficult. Sensory issues often made wearing the helmet impossible, and eventually the activity became too overwhelming and challenging.

In his first week there, Asaf typed, “I once rode horses and I’d like to try again.” I admit I was skeptical. Yet the following week, I received photos of Asaf sitting proudly on the horse. As the weeks continued, it became harder and harder for him to succeed, so when I received photos on Thursday, after his return from the summer break, of him happily sitting on the horse, my heart soared. Another huge success that needs to be celebrated.

I want to break down what wanting to ride the horse truly means in the world of Asaf with his Apraxia. First, he has to get up from the chair, walk to the steps, climb three steps, swing his leg over the horse, maintain his balance, and sit up straight. For most of us, these movements, except perhaps swinging a leg over a horse, are automatic; for Asaf, each action requires a separate battle between brain and body, another disconnect to overcome.

Yesterday, my friend Rena, a communication facilitator at Merchavim, called to share her experience with Asaf. She told him: if you don’t want to ride the horse, that’s fine. But if it’s your body that won’t let you, then tell your brain what to do, you are the boss, not your body.

Rena patiently coached Asaf, step by step. Each success was celebrated. She reminded him: if you want to ride but your body is betraying you, you are stronger than that. He succeeded. He mounted the horse and sat tall, proud of his achievement.

Moments like these underscore the importance of presuming competence. We must assume that individuals like Asaf understand, want, and are capable of far more than their bodies can sometimes reveal. Presuming competence allows us to provide the support, patience, and belief necessary for them to break through barriers and show us the incredible potential within.