Doctors Don’t have the Final Say in Autism

First, I want to say–this post is not about bashing doctors or their practice of medicine but more of an encouragement of what the decision making process a parent or guardian holds. I want to tell you a story…

I received Nevaeh’s diagnosis of autism when she was 4-years-old. There was no comfort, but only hard walls, sharp corners and stern behavioral professionals. When I finally got Nevaeh’s full report from the psychologist, I was surprised that a motor skills therapist and speech pathologist contributed to the report. The excerpts said that Nevaeh’s hand/eye coordination would be severe to “impairing her mobility into adulthood,” and “unable to make intelligent phrases while severely lacking overall communication skills”. When I asked about these specific phrases, I was told that it was unlikely that my daughter would be verbal or able to contribute to society.

I felt like a piano dropped on me.

And, immediately I was defeated. I felt that my world was spinning and I can’t still, to this day, figure out how I did not pass out. Here I was, a single parent that did not know a single thing about being a mother, let alone autism! Could I do any of this? Could I do this alone?  All I heard was my daughter would not be able to be independent. I thought about all the things she would miss out on. The friendships she would never have.  What type of life was she supposed to have?! I cried my eyes out, hugged my daughter and went to sleep.

The next day, I put my big girl panties on, and although my eyes were swollen and face puffy from the day before,  I threw a middle finger to that stupid report and looked at my daughter.  I said to her, “Nevaeh, you are amazing.  You are intelligent.  There is nothing you cannot do.  There is nothing you will not do.  This world is yours and you will conquer everything in it.”

And I made it my mission to seek out other professionals and different teaching techniques.  I remember I would sporadically surprise her by tossing ball after ball at her. I know, some of you parents cringe…but I figured, when she gets tired of getting hit with a ball, she’ll catch it. And one day she did.

Everyday since that day of catching the ball, I pushed her a little further and believed harder.  I knew I would adopt alternative teaching techniques.  I taught Nevaeh how to add with cotton balls, she learned her colors with water and food coloring and how to write with different textured pencils.  If Nevaeh was going to win in this fight of her life, I promised her that I would position her to take the world head on while throwing invisible middle fingers to any and every doctor that did not give me the report we were looking for.

Remember, a report or discovery of your child is not the end all to life, but the defining moment of what you know you’re made of as a parent.  Will you accept and roll over or dig in deep and shock yourself?

Doctors don’t have the final say in autism because until one can show you scientific data points, they lean on observed behavior. The outcome of a physician’s observed behavior coupled with standardized tests on your child is parallel to, simply, an educated guess. We all know the process of standardized tests and the variables it takes to be successful taking them. (Mental flash back to AP biology–yuck.)

Standardized tests don’t account for creativity or value diversity. Instead, the tests create stress and provide an amazingly profound artificial learning environment without providing any feedback on how to perform better. This unique equation does not make it any better for our children, us as parents or even the doctors themselves! Essentially, we are providing our kiddos the best possible chance for mediocrity. A doctor’s best option, in this case, is to offer you a theory that’s relative to a small moment of observation between the doctor and your child. That small moment doesn’t even hold a candle to the years you got in the game.

But imagine if I would have accepted the first doctor report as our reality? Nevaeh now is so verbal sometimes I wish she would shut it! Her team won their softball championship…she’s competing in this year’s minecraft tournament and has the best heart that God ever created. 

My advice, as a mommy with tenure, is to take the reports under advisement and keep it moving.  You’ll be surprised how well equipped you are with finding the answers. Trust yourself.  Respect the process. And most of all,  congratulate yourself along the way.

You, my dear parent, are a freaking rock-star!

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Hi, Antoinette here. I am a writer, mother, twin sister and newly paddle board lover. I am striving everyday to be the best mom that I can to my little girl Nevaeh. It's just us two, rocking it out and hoping to inject autism acceptance worldwide!

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