Tag Archives: neurodiversity

Wasted Why

We scratched our heads in silence when two doctors gave us their report. One talked on and on about all the science, the genes, the environment, my pregnancy, and everything else under the sun using all kinds of important words that were in a more sophisticated intellectual book than a medical textbook. The other spoke plain English but did going one way- a child’s brain is a mystery and that way- think of a microwave and a toaster. After all the talk, we wondered: this “Does our child have autism or not?”

“Yes, ” said the pediatric neurologist.

“Now what?” I said with watery eyes.

“You begin your journey,” he said, handing us a list of resources.

I should have looked at those resources right away began to make phone calls, read, interview people, listen to lectures, take notes, make appointments, and prayed.

I didn’t do any of those things. I was stuck on a question I asked as a child and was asking again. I was seeking and pressing and eager for an answer. Why does Goldie have autism?

That kind of why that goes beyond the fun and curious why. Like why is the sky blue? Why do we have a belly button? Why do people say “God bless you” after someone sneezes. Why does the ocean have big waves sometimes and medium sized waves other times? That kind of why can be explored with excitement and make one feel smarter and hopeful. But this kind of why did totally the opposite. I was feeling sad, frustrated, disappointed, and stupid.

Why did Goldie have autism? Did I eat something I shouldn’t have during pregnancy? Was I too old to have a baby? Did I carry a gene that caused her to have autism? Did I commit a sin that was unforgivable? Did Goldie not have a healthy brain? Did she get a vaccine that she shouldn’t have? Was she exposed to some toxicity? Did I fail to teach her something as a baby? I kept asking and thinking the answer was out there.

But I ate nothing but fruit and vegetables during my pregnancy. If Sarah wife of Abraham had a baby then I was certainly NOT too old. I had good genes, some that produced doctors, law makers, philanthropist, teachers, farmers, writers, and even pastors. Doesn’t Jesus forgive us of all our sins? Goldie knew to eat, drink, walk, run, speak in tongues, and kiss her baby brother on the head. Aren’t those signs of a healthy brain? I had all the vaccines that Goldie had as a baby and last time I checked, I didn’t have autism. The only thing toxic I could sense in our environment was the smell of manure in the area. Goldie was spoken to, sung to, read to, comforted when she cried, taught to breathe in the fresh air, and knew the meaning of the word ‘no”. So why does Goldie have autism?

It’s been a journey of therapy, lessons, reading, talking to others, IEPS, goals, more disappointments, lectures, bad news, sadness, and worry. It is enough to sit back in a lazy boy chair and ask again, “Why does Goldie have autism?”

It took almost 20 years to learn the answer. Even though I know the answer, I still have moments of asking- why? Twenty years, of keeping my eyes and ears open to discovering the answer. Every time there was a food she finally ate. There was the time she finally wrote her name and even made it look calligraphic. There was the time she was asked her favorite color and she said “turquoise”. There was a time, when she read her first story out loud. There was the time, she rode a horse. There was a time when she made her first friend. It was those times, I knew. But there were days, when I kept asking “why” and I missed the answer. Sometimes I still do.

Why does Goldie have autism? Because God is showing His great and amazing work in her. Each day, He does. He doesn’t quit answering. He has been answering “why?” all these years.. God is showing Himself great through her. That’s it and should be all that matters.

Wonderings about Autism

I have asked a lot of questions about autism. Some, in my learning, I have answered. Not in a “that’s a fact” way, but in a way that helps me stop asking that particular questions. Some, reside in wondering. Because when it comes to autism, it is a mystery. There is no real answer sometimes to the why, what, and how. Sometimes, that will always be the case with autism.

Is having autism a sin? Is it because I am a sinner who gave birth to a sinner? Did God purposely drop a stitch when He knit Goldie together in my womb because He had a purpose?

Does Goldie’s brain look different than mine? Aren’t all brains uniquely designed even though we all have the same parts but God uniquely put us together. Each brain is crafted wonderfully. So is Goldie’s brain all that different than mine?  

Do any nonverbal autistic people learn to talk without a computer or tablet? Are their voice boxes only capable of grunts and groans? Or is it like selective mutism where they are choosing not to talk because of fear, stress, or worry? I told a story to some nonverbal autistic kids. After telling it only two times, they were saying some of the words. Was that some sort of miracle?

Why do some autistic people say that autism is their superpower? What do they mean? Is it a self-esteem boost? Or is it a word that really describes who they are? Is there really something “super” about them like having an excellent memory, able to draw a detailed blueprint of the Smithsonian having seen it only once, or like having an enormous file cabinet of facts inside of their brain. Goldie has never said her autism is her superpower. I wonder why? 

How do you convince people that if you have meant one autistic person who have met one autistic person. That’s all.  “I just know that they are autistic” is something I heard a lot. Especially as a teacher. But this label is not the one for all! Right? If you have bitten into one apple, there are hundreds of other apples to bite into as well.  They all have a different color- not just red. They all have a taste and a texture- not just crunchy. And not all apples are made for apple pie either! 

Like cancer, is autism doomed to have no cure and only treatment? It is a life long condition. So it is a life long journey. But if we can send a guy all the way to the moon, why can’t we find a cure for either one? Would those with autism want to be cured? 

I wonder what people who live and love someone with autism would say to a person who does not know anyone with autism? It seems like if you live with someone with autism, it becomes so real, so natural, you almost can’t imagine it any other way.  People who live, love, and care for someone with autism, are so used to this way of life, they might not even see the word “autism” tattooed on their forehead. They just know them. They have a name not a label. This is our daughter “Goldie,” not this is our autistic daughter, Goldie. 

I wonder what people with autism are thinking or imagining when they see other people without autism doing they don’t do? Goldie doesn’t drive yet. She doesn’t take AP classes to earn college credit. She may not every marry. Do those who have autism look at all the neurotypical kids without autism and wish, dream, and hope, they can do the same things one day even if not now?