The Whole Story


This is the story of autism that we need to hear, not just the young adult with autism that is
a surgeon… We need to hear the whole story, no matter how uncomfortable it may be.

A few weeks ago, a friend of mine asked me if I had seen the new show on television entitled The Good Doctor. I told them I hadn’t since I don’t watch too much television anymore, unless it’s pre-recorded on my DVR. In my old age, if I see another commercial on what drug I should consult my doctor about or another low budget local commercial on where to buy my next pair of shoes, I just might ban television all together in my house. I don’t know, but I’m sure I have a little smirk on my face as I fast forward through all the senseless commercials while I enjoy my previously taped show. As I firmly hold my thumb on the fast forward button, I’m thinking I’ve outsmarted every overpaid marketing exec who is trying to tell me what to buy or how sick I really am. Just maybe.

I went home to do a little research on The Good Doctor to see what all the hype was and why my friend would assume I would be a shoo-in to have it on my DVR list. After researching it, I realized why my friend almost tripped while running over to me to ask me about it. The show is about someone with autism who is an up and coming surgeon. Since I have a son with autism, my friend’s thought was that I would be anticipating the new series. As I read the reviews, many of them were very complimentary, but then I read a comment that shared my sentiments, “What about the others?” When the mother of a child with autism typed in response to this series asking about the others, she meant, “What about the individuals on the autism spectrum that will never be doctors?”

She went on to explain her frustration and I could see why she was expressing the fact that these shows that are meant to spread awareness about autism are only spreading awareness about the view of autism that doesn’t make people uncomfortable. We need a stronger effort towards understanding the entire spectrum and what that really looks like.

Don’t get me wrong. I don’t stick my nose up to every movie that involves a character with autism. That’s not the message I’m trying to send. I love The Accountant and I’ve watched it several times. I did watch it more than once and it wasn’t because the handsome Ben Affleck was the main character. I admired the fact that the movie showed the public that not every person on the spectrum is an accountant, verbal or a savant. My fear is that if we, as a society, only highlight the area of the spectrum that portrays someone with autism who goes to college and gets a job, or someone who lives independently, then we are doing the rest of the autism community a disservice. We need a level of awareness that helps the public understand the entire spectrum.

We need to talk about the teenagers with autism that aren’t potty-trained with parents paying thousands of dollars to clinics to help them train their children. It is common for parents to carry the burden financially because insurance companies may not cover this service. “I’m scared for my son. I have to figure out how to get him potty-trained. He’s a teenager. When my son is wearing a diaper, how can I assure that he will be cared for when I’m gone? I won’t be there to protect him.” I’ve heard an exhausted mother say, “When my son was three years old, holding a teddy bear was socially acceptable and people would approach my child with a smile. Now, my teenager, who is taller than me, still walks around with a teddy bear. It’s not cute anymore, is it?”

This is the story of autism that we need to hear, not just the young adult with autism that is a surgeon. We need to hear the stories about the children who are working on ways to communicate after being nonverbal for so long. I want to hear about the young adult who can’t live with his parents anymore and how we can create a plan to provide safe places for these young adults to live and thrive. We need to hear the whole story, no matter how uncomfortable it may be.•

 Shelley Huhtanen is an Army wife with two children, one with autism, whose husband is currently stationed at Fort Benning, GA. She is an autism advocate and currently the parent liaison for the Academy for Exceptional Learners.