One day, my son was playing with a United States map puzzle. He repeatedly dropped the puzzle pieces that were in the shape of individual states onto the floor and got close to the floor to listen to the sounds they made. I joined him in his play and I experimented with a variation on the game. I grabbed a few of the pieces and held them behind my back.
I dropped one behind me and asked him, “What state is this?”
Instantly, he replied, “Wyoming.”
I was stunned. I did it again, with a different state. “And what state is this?”
“Arizona,” he said.
I continued with other pieces, and he answered each one correctly.
All the while, I watched him in awe, my son, who, nine years earlier, was diagnosed with severe autism.
Over the years, I have discovered that my child lives in a much different world than my own. His senses are unimaginably heightened. He experiences sounds and color and light in ways that we cannot even fathom. He sees and hears beauty in the world that I may never see myself.
I know this because I watch him with curiosity and an intense desire to understand him and his world. He has perfect pitch, which means he can hear a group of notes played simultaneously on the piano and he can name each one from the other room instantaneously.
He is different, for sure, but I didn’t always look at this in a positive way.
At the beginning, I was a typical parent with a newly-diagnosed child. I responded to the news of the diagnosis as if I was just told my son had a terminal illness. I cried for three weeks straight and felt completely hopeless and devastated. I have met many parents along the way and their initial reaction was similar to mine.
My tragedy tale gained momentum after I met with a few doctors about what to do to help my child. There was a definite air of urgency. I actually believed that I had this tiny window of time in which to fix what was broken.
I bought into the going belief that if you didn’t make significant progress by the time your child turns 5, it was pretty much a done deal. It was like this arbitrary age of 5 was the wall, the fortress that would never be toppled. I was so distraught and wrapped up in finding the cure for my son’s autism that I probably inadvertently did more damage than good in those first few years. I believed that autism was something to be feared.
Since then, however, I have learned that this just isn’t true.
I used to want him to be normal more than anything. I wanted him to be like the other kids. But I realized that “normal” means conforming to a lifestyle that invites stress, anxiety and sadness. I have come to realize that today’s version of normal is the last thing I want for him or his two brothers. I want better than normal.
But the really profound discovery I made was that I could choose my beliefs about autism. I could see it as a tragedy or I could see it as something else. After several years, I chose to approach autism from a new mindset. I acknowledged that my little boy was different, but I recognized that he is not a tragedy.
I realized that my beliefs about autism are the single most important factor for his success and well-being.
I realized that attitude is everything.
This doesn’t mean I have abandoned my desires for him. I still want him to form meaningful connections and to communicate and make friends and to experience the beauty of human relationships.
But because of what I have chosen, I show up now from a place of love. Not fear.
The really incredible paradox I have witnessed since changing my attitude is that all of the “fixing” that I used to think I had to do is fixing itself. He is connecting and communicating and empathizing with his family and others in profound ways. And he is happy, really happy.
There is a better way for us to approach autism. We can drop the fear and embrace love and acceptance. We can find the positive, whether it means marveling at our child’s discernment of a puzzle piece dropped on the floor or something else entirely.
We don’t have to give up what we want for our children, and we will almost certainly get it much quicker when we approach autism this way. We will have a much more rewarding experience as well.
My son has shown me that there is a better way to live and be in this world. He has redefined what I understand to be “normal.”
With gratitude for our differences,
Andrea Libutti, MD