"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 am really 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."
"I agree buddy. I can understand though how parents might think their child thinks one way, and then they find out their child is different. That can be a surprise. But, you are right, autism isn't a bad thing. I can see how that is confusing."
"Yah, I like the way I think. I don't see it as a bad or a sad thing," Ethan replied.
"I don't either honey." I gave my tall boy man a giant squeeze.
I never thought I would be having such a conversation with Ethan. At five years old, 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. The majority of us have a difficult time thinking out of the box. My boy sees the world in full spectrum.
Accept Us and 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. How haircuts hurt him because he could feel the vibrations. How the sound of the buzzer and the scissors created a sensation of pain for his body.
He shared with us how lights and sounds affected his ability 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. It was grueling as we worked on facial expressions, endured obsessions, practiced motor skills, and learned communication. The early years took all of the energy I could give to Ethan as I raised his three other siblings. Those years were so intense that I hired a Personal Care Attendant to save my family. To save my sanity.
Ethan had some things that needed healing, like his gut system. Yet, he possessed the most loving perspective on the people of this world. A perspective that went beyond skin color, religion, country, and history. I found him therapies that helped him -- speech, social skills, occupational therapy. And then I let go of trying to "heal" him and instead focused on embracing him.
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.
Perhaps, it is not the "Aspies" who need the healing. Perhaps our children with the autistic label are really here to teach us to stop trying to change people and to just love them.