We have been smack dab in the middle of a kitchen renovation project and for someone who is not "on the spectrum", the chaos and mess is causing me to stress over a disruption in my routine. The inconveniences, dust, lack of a dishwasher (horror), dust, no decent meal in days, and the dust. Yuck. The pinnacle of the project came to fruition when the granite was delivered and installed on Saturday (hallelujah), so we invited our friends over to check it out that evening. While sitting with our friends amidst the dust and the Kitchen Aid Mixer and toaster temporarily relocated to the kitchen table, Ryan came in with his recently purchased Minecraft Diamond Sword (foam of course). Our friend, who has tried repeatedly to engage Ryan on numerous occasions, be it at their home, at parties, and at other social events, with little to no luck, asked Ryan about the sword. I'm sure our friend expected to be ignored or brushed off quickly, as was the pattern in the past, but, this time, in Ryan's house, in Ryan's environment, and discussing Ryan's latest "thing", our friend got a wonderful treat. Ryan connected. Ryan explained what the sword was, what it was made of and when he got it. Ryan's body, and most importantly, his eyes finally connected with our friend.
There is an old English Proverb that states, "The eyes are the window to the soul", which stems from a passage in the Bible, Matthew 6:22-23. This proverb basically means that by looking deeply into a person's eyes, your can tell who they truly are on the inside. Although I have looked plenty of people in the eye, I can AWEnestly say, I have never seen anyone's soul. Do I have soul blindness? What does a soul look like? It's true, you can see kindness, sadness, worry, and a range of emotions in someone's eyes which may tell you a lot about that person, at least in that moment. That is certainly a powerful tool...if that person wants you to glimpse at his or her soul. What if someone wants, or needs to keep their soul hidden and the shades are drawn and the shutters closed tight? If you can't see through the window, how can you tell what that person is really like? How do you see the soul of a person who avoids eye contact because it makes them uncomfortable, it makes them nervous, it confuses them, and it makes conversation very, very difficult.
When Denial and I were spending endless hours Googling "signs of autism", regardless of what site we were on, the words "poor eye contact" jumped off every page and poked me in the eye. Of course, I would quickly cover my eyes, click on that x as quickly as I could and look somewhere else, just like I did when Ryan would avert my gaze. I saw it, I knew it, I felt it, but, I was so afraid, so worried, that I would just look away so I couldn't see Ryan looking past me and not at me. More often than not, as seen in this picture, Ryan would look out the corner of his eyes rather than directly at you. It didn't matter if you were 5 feet away or 6 inches away. It wasn't like that all the time, which is why Denial and I felt that A Word, just did not fit him. Sometimes, Ryan would occasionally glance at my eyes, and I would savor that peek into his window to see the beautiful soul behind the often drawn shades, no matter how fleeting the moment was.
Even though I worried about Ryan's preference to look at me out of the corner of his eyes, I had Denial reminding me of Ryan's beautiful eye contact when he was younger and I was still nursing him. I specifically remember savoring those moments when he was approaching one year of age, knowing our special, just the two of us, time was about to come to an end. I think that is why my brain has seared the moments of his beautiful eyes connecting with mine as I sang him songs (he couldn't tell me how terrible my voice was since he wasn't speaking yet), told him stories and snuggled him. Ryan would pull away long enough to look up, milk dribbling down his face and smile with his mouth, with his eyes and with his soul. The shades were wide open. Is this memory still so vivid because it was a chapter ending or did I sense a new chapter about to begin? Maybe I could sense something was about to change, maybe I could feel Ryan slowly pulling away. It's hard to say, since Denial was waiting right outside Ryan's bedroom door.
I don't remember when Ryan's eye contact became less. When he chose, with more and more frequency, to look past me and not at me. To choose to look at the floor or the wall rather than my face. It must have happened gradually as Denial and I continued to also look the other way because losing the ability to see inside Ryan's soul was too painful to face. At some point and time, Ryan closed the windows, drew the shades and would only allow brief glimpses into his perfectly innocent, highly sensitive, bewildered soul. Although I was no longer able to see Ryan's soul through his averted eyes, I could still feel it...with my heart and with my soul. I knew that Ryan was still in there...behind the shades.
I don't remember when Ryan's eye contact became less. When he chose, with more and more frequency, to look past me and not at me. To choose to look at the floor or the wall rather than my face. It must have happened gradually as Denial and I continued to also look the other way because losing the ability to see inside Ryan's soul was too painful to face. At some point and time, Ryan closed the windows, drew the shades and would only allow brief glimpses into his perfectly innocent, highly sensitive, bewildered soul. Although I was no longer able to see Ryan's soul through his averted eyes, I could still feel it...with my heart and with my soul. I knew that Ryan was still in there...behind the shades.
The lengths I went to in order to open those shades again. "Hey, Ryan, look at me...look at Mommy's eyes!", Denial and I would yell with a sense of near hysteria excitement. I would hold his battered and chipped James, the Red Engine, from his Thomas collection on the bridge of my nose, hoping that by seeing James, Ryan would see my eyes and see the depths of my love for him reflected in them. It didn't matter if I stood on my head or screamed, "A clue, a clue" while pretending to be Steve from Blues Clues, more often than not, Ryan continued to focus on anything, but my eyes. Ryan would sometimes smile at my antics and he would answer my questions and respond to me (most of the time), so I knew Ryan's averted gaze was not about shutting me out. Ryan could hear me, he could feel me, and he could see me, he just didn't care to look in my window and see my soul (some days, that is a totally understandable).
People with autism have shared that eye contact is difficult for them because they have such a hard time concentrating on what someone is saying, that it takes all of their senses to find the proper words in their brain and respond appropriately. Looking someone in the eye, is just too distracting, too powerful and too unnerving. For people with an ASD, it makes no sense to stare at someone's eyes. Words don't come from a person's eyes, they come from their mouth. If looking at the floor helps a person with an ASD "hear" you better, why would you ask them to do anything else? Why would you yell, "Look at me!" again and again if all it did was cause stress and anxiety to the "don't care to see your soul" little boy? Now that I understand this, I have years of guilt ridden therapy ahead of me. Yeah, I know, comes with the Mom territory.
There were times, when I was so overcome with worry, with such debilitating fear of that A Word, that as I stood right in front of my finger flicking, anxious son, who was looking out the corners of his eyes and I would yell, "Look at me!". Which sometimes, out of fear of the crazy lady standing in front of him that sort of looked like his mommy, Ryan would look at me briefly, then all the energy, all the effort he had just spent trying to find his words went right out the window and Ryan's shades would close once again. All because of what I needed, what I wanted. A chance to see his soul that he once so willingly shared with me.
I am not the first worried, nutsy, frustrated, misinformed mother who has shouted, "Look at me!" to their eye averting ASD child. Many children and adults living with an ASD are taught to "look people in the eye" as a way of social engagement, as a way of fitting in, as a way of looking "normal". Even though I understand that eye contact may be difficult for Ryan others do not, so it is important that he learns at least to periodically look at someone when he is speaking to them. It's funny, because now, when we try to encourage it, we have gotten exactly what we deserve. Sometimes after the words, "look at me" are kindly said, no longer shouted in a hysteria induced state, Ryan will look right at me, over-exaggerating his look by bulging his eyes as big and as wide as they will go in a sort of, well, you wanted to see my eyes, see my soul, now you can see as much of them as you need to, kind of way. Needless to say, looking at big bug eyes is incredibly distracting for me and causes me to lose my train of thought. Tit for tat. Ryan, 1, Mom, 0.
I am not the first worried, nutsy, frustrated, misinformed mother who has shouted, "Look at me!" to their eye averting ASD child. Many children and adults living with an ASD are taught to "look people in the eye" as a way of social engagement, as a way of fitting in, as a way of looking "normal". Even though I understand that eye contact may be difficult for Ryan others do not, so it is important that he learns at least to periodically look at someone when he is speaking to them. It's funny, because now, when we try to encourage it, we have gotten exactly what we deserve. Sometimes after the words, "look at me" are kindly said, no longer shouted in a hysteria induced state, Ryan will look right at me, over-exaggerating his look by bulging his eyes as big and as wide as they will go in a sort of, well, you wanted to see my eyes, see my soul, now you can see as much of them as you need to, kind of way. Needless to say, looking at big bug eyes is incredibly distracting for me and causes me to lose my train of thought. Tit for tat. Ryan, 1, Mom, 0.
If we are AWEnest, do any of us really want to reveal our soul through our windows...our eyes? I mean there is a lot going on behind those eyes. So, maybe these kiddos with ASD get it. Maybe seeing someone's soul is too personal, too violating, too much. Almost like putting a window in your shower stall that faces the street. Too revealing, too much. Maybe to really find someone's soul, to find out who they truly are on the inside, maybe it should take more than just a gaze. Maybe it should take time, patience, understanding, acceptance and love.
If the eyes really are "the windows to the soul", perhaps the heart is the door. The Greeks thought the heart was the center of the soul and since they gave us democracy and the Olympics, they are a credible source. We often describe people by the kind of heart they have...a good heart, a kind heart, a generous heart and this often translates into the kind of soul a person has. Maybe opening the door to someone's heart, understanding their heart, should take a little more work than quickly peeking in their eyes to see their soul. Opening that door shouldn't be so easy, after all, we are complex individuals. I know that if you peered into my eyes to find out who I truly was, without checking my heart, on days 21-28 of the month, my soul, my "essence" would be a lot darker than it is on days 1-20. My heart, however, would remain the same. We may not be able to see a person's soul through their window, because some prefer to keep their shades drawn, but, we can find a person's heart, by opening the door to our own heart. Accepting people's differences, taking time to open their door and to know someone's heart without judgement, without fear, may be just the window you need to truly see their soul.
No matter where you look, my boy's beautiful soul is worth the time and effort it takes to find it.
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