“Mom? Why were the people on the show so sad when they found out the boy had autism?” Ethan, now 16 looks at me with those searching eyes. We had cable television for a week at the local campground. A novelty for our nomadic lifestyle.
“I’m not sure,” I answered.
“It was really strange. They showed everyone feeling really sad when they found out,” Ethan said.
“What do you think about that?” I asked.
“I don’t think it is a bad thing at all. In fact, I’m glad I have autism. It gives me different gifts and my brain thinks differently. I don’t understand why the show made it seem like autism was a bad thing.”
“Sometimes it just comes as a surprise to parents that their child thinks differently. But, you are right, autism isn’t a bad thing. I can see how that is confusing,” I said.
“Yah, I like the way I think. I don’t see it as a bad or a sad thing,” Ethan said.
“I don’t either honey.” I gave my tall man-boy a giant squeeze.
I never thought I would be having such a conversation with Ethan. At five years old, his inability to communicate the thoughts in his head drove him into meltdowns that included kicking doors, walls, floors and me. To hear his thoughts finally verbalized was a miracle in itself.
And now, here I am listening to my teen with autism talk to me about how unfair it is that the world views autism as a negative thing. Something that needs to be fixed. We have raised him to know he thinks differently – autism is his own super power.
Accept Us & Accept Our Autism
I attended my first autism conference after Ethan’s diagnosis of PDD-NOS at seven years old. A diagnosis that stood for Pervasive Developmental Disorder Not Otherwise Specified. A very wordy way to say, you don’t really fit into any of the other boxes on the Autism Spectrum, so we will label you this. I attended the conference to make sense of it all.
I sat in my folding chair at the optional evening session of the conference where an eighteen-year-old boy with autism shared his thoughts with parents. He introduced himself as he paced back and forth across the stage flapping his arms. He invited his own family up to act out scenes of his life. The first scene was his mother giving him a haircut and the speaker yelling because the sound of the buzzer and scissors created a sensation of pain for his body.
To help us understand sensory overload the speaker saturated the crowd with blinking lights, loud sounds of conversation, and added muffled sounds on the microphone. He shared with us his inability to filter out sounds that made him unable to concentrate. Then, he dismissed his family and looked straight out into the crowd. He paused and then asked, “Why do you spend so much time and energy trying to make us be like you?”
Chills emulated from my head down to my toes. I had spent countless hours and days trying to find a way to heal my child. I missed eating, and connecting outside of my home because I was reading every book I could find on this diagnosis. I lived in the chair propped in front of our home computer. I was obsessed with finding a cure for Ethan.
The young speaker continued, “Why can’t you just accept us the way we are? We are not trying to talk you into thinking like us. Or seeing the world like we do. We are not saying your way of thinking and acting is bad. We accept you. So tell me, why can’t you just accept us?”
I closed my eyes. He was right. I had fallen into the media’s message that my child was broken and needed fixing. That he was somehow flawed and I was not. I had been brainwashed into thinking that a child with autism somehow needed to be healed. The speaker was an example of the beauty a person with autism brings into the world. They speak the raw truth. The truth that changed my life.
In one aspect I would rather wish for others to be more like Ethan. For years I have struggled and spent a lot of energy on finding the “cure” and grieving the reality that there will not be the understanding of autism for years to come. Now I am spending time on celebrating who he is, trying what I believe I need to try, then trusting I will be lead to the path that is right for my boy. In letting go of the control, I am able to appreciate the gifts I have.” –A letter I wrote to our Autism Specialist when Ethan was young.
Autism is Really a Super Power
Autism brought a different journey into our family life. Daily we worked on what facial expressions meant, talked about the Monarch Butterfly multiple times an hour, went over the meal chart, and I hugged him tightly when his body needed to hit. In the early years, I woke with a racing heart to Ethan inches from my face with the latest news on his Monarch caterpillar. Soon it became hard for me to get out of bed to raise him and his three other siblings. I didn’t have the energy to comb my hair and began calling t-shirts and sweats my clothing line. Motherhood became survival until one day I could no longer keep my nose above water. I finally went to Social Services for help and hired a Personal Care Attendant to save my family. To save my sanity.
Eventually, Ethan was diagnosed with Aspergers Syndrome. He did have some things that needed healing, like his gut system and so we changed his diet. I also found him therapies that helped him – speech, social skills, and occupational therapy. And then I let go of trying to “heal” him and instead focused on embracing him. That was when I could become his mother again.
Ethan taught me to look beyond diagnoses. He taught me to look beyond the behaviors of people and to find their core. To see people with love and compassion. To disregard the term of normal.
I am not sure if those with autism need healing. Maybe they are elevated thinkers of humankind – a people who can focus on their passions regardless of judgement. Maybe those who have autism are here to teach the world acceptance and the real meaning of unconditional love.
When I look at Ethan, I am grateful for the boy who taught me it is okay to be who you are without apology.