Silent Struggles and Unspoken Strengths

After Asaf’s last hospitalization, I took part in his typing session the next day. After he shared how much better he was feeling, I asked him if he had any other medical issues that we may not even be aware of. His answer blew me away:

I suffer from a lot of headaches.

I had no idea. As I’ve said previously, Asaf’s pain threshold is very high. He needs to be in copious amounts of pain before we even realize he’s suffering.

I had absolutely no idea what to do with this information, so I made an appointment with our doctor. She gave me a list of questions to ask him during his typing session and also advised us to get his eyes tested — which, as we all know, is a feat within itself. How can you check a non-verbal individual’s sight when no verbal feedback can be given? Finding an optometrist who specializes in non-verbal individuals wasn’t easy, but we succeeded, and an appointment was made.

On the day of the appointment, we joined his typing session. Asaf was super focused, and his motivation to help us understand what was causing him pain was evident. He was able to share where the pain was, how often he felt it, and that often the light blinds him. After painstakingly sharing all his answers, I asked him if he could show us a sign when he has a headache.

His answer again blew me away.

Yes, I hit my head.

Indeed, Asaf regularly hit his head, as well as his chin. How the heck was I supposed to know that his head hurts when he seemed in such a good mood?

This led me to ponder: what other signs are we missing that he’s visibly trying to show us?

I was very nervous about the eye test. Asaf doesn’t usually cooperate during doctor visits, but he was so determined to succeed in helping us understand what was hurting him that he cooperated throughout the entire session. The optometrist confirmed his sight was fine.

As a result of his answers, we paid a visit to the ENT doctor and once again Asaf’s cooperation was admirable . We discovered that the source of his pain was in his ears and also learned that Asaf suffers from blocked ears regularly. We were relieved to finally have answers and to know we could alleviate a medical condition that we had no idea existed.

But, I couldn’t help but wonder: how often had Asaf suffered in silence, with no way of being able to share his pain? The thought made me feel deeply saddened, but instead of focusing on this, I focused on the gratitude that now, through typing, he can communicate and share his thoughts and pains with us.

I’m a firm believer that we do our best at any given moment in parenting with the tools we have at that time. If I’d had the knowledge I’ve gained from my exposure to non-verbal spellers 20 years ago, things would have been so different today. But I can’t beat myself up over this; I can only look forward and see what amazing successes Asaf is going to achieve with his typing. As his phenomenal typing therapist, Naama, who I adore, admire, and am so grateful for said, “With his typing, he’s like a meteor shooting through the sky, leaving behind a trail of white smoke…”

Ido Kedar changed my life. His book Ido in Autismland: Climbing Out of Autism’s Silent Prison was a game-changer. I identified so many of the situations he described, and I had countless lightbulb moments that helped me understand Asaf’s behaviors and responses better.

In one example, he tells of his mother asking him to open the window in a car, but he opened the door. He explains that he wanted to open the window, but the information and signal didn’t reach his hand correctly, so he opened the wrong thing. He talks about the frustration he feels, which is twofold: not only is it devastating and frustrating to see your body not respond to what your mind hears, but it’s also frustrating to have the person opposite you assume that you don’t understand and react to you accordingly. Wow, I had absolutely no idea.

Each time I would ask Asaf to do something, and he didn’t or did something different, I just presumed he didn’t understand... how wrong I was.

During Asaf’s last hospitalization, we entered the elevator, and I asked him to press the fourth floor. He pressed the second and glanced in my direction. Previously, this would have strengthened the assumption that he didn’t understand my basic request. Today, I know that it’s a motor issue preventing him from succeeding.

I looked at him and said, “Asaf, I know you wanted to press four, but your brain sent the wrong message, and you pressed two.” His expression was one of “Wow, she GETS me.”

I felt ecstatic.

Each time Asaf feels understood, his confidence strengthens, his motivation increases, and his determination becomes more obvious to me. This realization made me realize how important it is to be truly present with Asaf. There are so many distractions around us; it's often easy to be physically present but not emotionally present. Since this incident, I’ve consciously tried to be 100% present with him in order to try and pick up on the signs he’s trying to show.

Through this journey, I’ve come to understand that presuming competence is not just a belief, but a practice. By recognizing Asaf’s unspoken strengths and silent struggles, we open the door to understanding and compassion that can change his life—and mine—forever.