Ever since my son was diagnosed with Autism, I have been fortunate enough to have a very supportive group of family and friends. However, inspite of being surrounded by people who love us, surprisingly, we often feel rather lonely in our journey, like standing alone in the middle of a crowd.

When people see us, our son, they see a snapshot of our life. It’s like the story of the elephant and the blind men, where everyone only sees a part of him and makes a conclusion about our and his challenges. So, it’s not unusual for me to hear well-meaning but not so comforting – “think about those who are going through worse” or “ you worry too much, he comes with God’s plan”, or “it’s just this one thing, he will get over it as he grows”. While all these comments are meant to make me feel better, they make it even more frustrating for me to step out because I feel like I am being silently judged and I do not even get the chance to present my case well enough.

For years, I have always wanted for someone to just listen with an open heart, not sympathize, not give solutions, not try to comfort. Just. listen. For years, I have wanted someone to simply say that they are there if I need them and say that loud and clear and then leave it at that. I might never trust my son with anyone else except me but the fact that there is someone out there reaching their hand out to hold my back is very reassuring. 

And finally, it happened. We were attending a party with a few friends. My son, with his onset of teen years, has been way more challenging than he used to be. His behaviors have escalated and that has made it almost impossible for us to leave his side or for someone else to interact with him. This is on top of the already existing challenges he has, especially when among people or outside the house. So it was pretty apparent that we were struggling to get through the few hours that we were there. 

After what seemed like an eternity of walking on eggshells at the party, when we came back home, I noticed a message on my phone. It was from a very dear friend. This is what it said, “I saw how much you go through with <my son’s> challenges. Kudos to both of you (my hubby and I). Always remember we are here and if there is anything we can do to help you, please let us know”.  3 simple sentences but strangely they had the power to make me feel validated, that I was not overreacting to my situation. Suddenly, I felt seen, understood, and supported, without the “but”. “If’s or, “I think” or “you should” added at the tail end. There was something about the heartfelt simplicity of the message, I could feel tears welling up in my eyes. For so long I had been waiting for someone to say just this – no advice, no sympathy. Just this. It felt good.

But as I sunk myself in the warmth of this message, a felt something bothering me. I read the message again I immediately knew what it was. As a caregiver, I want to be understood but as a mom, to hear that my son is challenging breaks my heart. I want people to talk about all the amazing things that my son is or can be. When I return from a party, I want my phone flooded with messages about how much joy it is to be with my son and how his uniqueness is special. I want to kvell in his extraordinaire, not gloat under the shadow of his challenges. It did not feel as good as I thought it would.

I know my son has challenges – some seen, some unseen, some that we are facing and some we know we will eventually. The challenges will never stop and some might even be unsurmountable but every time I hear that from someone else, somehow it makes this whole thing more real. 

There is no denying that because of our son’s diagnosis., we often go through a lot of our life experiences in unexpected ways. However, most of our days we live in unintentional oblivion of the looming presence of autism in our lives unless we are thrown into a situation where the stark reality is hard to overlook. That’s when I feel exposed and vulnerable, making me want to go back to the safety of our home, away from the sympathetic and sometimes uncomfortable glares of those around us. Maybe it’s the vulnerability of that situation that makes me crave the unadulterated understanding of others. But maybe that is not what I need. The long-awaited message from my friend was a wake-up call for me to realize that what I need is for me to be at peace with myself and not put the onus of my absolution on anyone else. I do not need others to understand my situation. All of these are for me to own and process. My friend’s beautiful message opened my eyes to my own predicament and made me see things a little more clearly.