Autism. I remember the time in my pre-child life when I felt like autism would be one of the worst diagnoses a parent could hear. I thrive on personal connection, and the thought of a child who could not relate to others or to me sounded like a parenting experience of all work and no joy. Occasionally I would meet parents who mentioned they had a kid with autism. My immediate reaction was to feel a deep sadness for all that they had lost. These parents who acted like life was normal and enjoyable while loving and raising a child with autism absolutely amazed me! If I ever heard that kind of news, I knew a darkness would enter my world and remain there.
When my son, my first child, was born, I was completely certain he was perfect. Perhaps he could have typical flaws in the eyes of other people, but I knew any weaknesses were somehow still indicative of hidden strengths. I was careful to make sure I was a dedicated mother who provided exactly what he needed, and of course, I felt every characteristic about him reflected his solid development and my ability to be an attentive mother.
As my son developed into a toddler, I did notice he had a strong, intense, and unusual interest in watching movement. Water, water fountains, escalators at the mall, moving strings and wires, and other continuously moving objects would capture his mind and body, leading to him reacting as if he was being ripped away when we tried to direct his attention elsewhere. This was odd, but he was hitting his milestones on schedule, so I saw this fascination as an ability to find joy and appreciation in details no one else noticed. I liked that he viewed the world a little differently, and I took it as a sign that his unique perspective would help him be noticed when he shared his gifts with the world.
Completely in love with the increasingly unique strengths my son displayed, it wasn’t until he was three years old that I started to wonder if perhaps his communication skills weren’t as traditionally fluent as other children his age and that he might even need some help. He had a broad vocabulary, but I was becoming a little frustrated with his difficulty in understanding what I meant when I asked him questions. I had to be very careful about how I used my words for him to be able to interact with me. For other people, I felt they could never get it right when talking to him. They would frequently say something that was distressing and overwhelming to him, causing him to scream or shut down. Confident that his strength in processing information so deeply was the reason for his odd reactions, I decided to seek out some evaluations on his communications skills to determine if perhaps speech therapy would help him learn to manage his depth of feelings to be able to have an easier time interacting with others.
After what ended up being six months of meetings, observations, and evaluations, the public school preschool team told us he had autism. I was immediately certain the team must be confused. My son was affectionate and flexible with schedules. He didn’t even seem to care for a routine, and I had heard all children with autism want to follow a strict, repetitive schedule. And ultimately, I had worked so hard to meet his needs and provide a stimulating environment. Wouldn’t a diagnosis of autism somehow imply I had somehow done something wrong?
However, I spent several months reading and reading and discovering that autism looks different for each person. The commonly known signs of autism are only common but not a requirement. My loving, creative, funny, and curious child had autism because of his strengths that allowed him to see the world differently. My attentive mothering had been effective; this was not caused by something he was missing. I then also realized that his ability to see life through his own perspective would also present challenges for him as he moved forward in the game of life.
At first I was stuck on the word autism and what I imagined autism to be. I kept having images of non-communicative children who don’t seem capable of love. Was my son going to turn into this type of kid? I started to feel like I had lost the amazing child I thought I had and that some new, labeled child had taken his place. My confidence was shattered and my love was temporarily weakened because I thought he would turn into a different person who I did not know. I felt the darkness of doubt surrounding me.
It has now been close to four years since my son was diagnosed, and I’m so happy to have learned in that time that I never lost my son. Apparently he is still a loving, creative, funny, and curious person. That is what autism can look like. I’ve also learned that my fearful images of children who did not communicate was not accurate because I thought they couldn’t feel love. All of these children feel love. The challenge is in finding out how to communicate with them and help them see what the world has to offer.
My son does have a diagnosis of autism, and now I realize that label is one that means I have a super-cool kid. His humor, intentional and sometimes not intentional, keeps my perspective of the world fresh. His excitement for the how and why of everything from the structure of dog families to telescopes to life after death keeps everyone around him excited about life. Even his enthusiasm when shopping at a grocery store is contagious, and I frequently hear people around us laughing at his energy and celebration around buying food.
Learning that my son had autism was devastating for me, but realizing that he is still an amazing, quirky, and fun kid who has so much to offer the world has been such a joy in my life. Autism exists in the world to keep our perspectives fresh and to help us realize appreciation of life comes in many forms!