Before my son was born in 2002, I had two experiences of autism. One was Rainman, the movie with Dustin Hoffman, and the other was Janine, a sophomore student. Now Janine was not my student, she was in the classroom next door. This would be the classroom of my best friend and team-teacher, Clarissa. We were science teachers, and together we would plan lessons, projects, guest speakers, and field trips, and often we would share our experiences of our students. Janine, often came up.

Now Janine was an excellent student. She took advanced classes in science, was in journalism, and if memory serves, was a straight A student. Everyone knew Janine. And one thing everyone was clear on, “Janine” was her middle name. Call her by her first name, and she would freak out. On the rare occasions Clarissa was absent, even though she left detailed instructions for the substitute, Janine’s first name would inevitably be called out during role call. And she would freak out. Sadly, students used this information to trigger Janine, but as the years passed she learned to ignore it. But this story is not about bullying.

Clarissa and I had the opportunity to bring our students to the famous Salk Institute. But the subject of Janine came up. Clarissa was concerned that at times Janine’s behavior was confusing and erratic. She felt ill equipped to manage her outside her classroom. I said, we needed parent chaperones anyway, why not approach Janine’s mom and ask if she would like to help? Mom agreed. Problem solved. Or so we thought. After the first keynote, we were broken up into groups to begin touring the facility. Clarissa and I just assumed that Janine’s mom would chaperone the group Janine was in, but that didn’t happen. I don’t know what happened during the tour. But when we broke for lunch security came and pulled Janine’s mom aside. Of course they didn’t get “kicked out”. We all came on the same bus. But Janine’s mom never left her side for the rest of the day. I found out later from Clarissa, Janine would not stop touching the equipment and was perceived as defiant when the tour guide tried to manage her. But this story is not about behavior.

I had lunch duty during spirit week. Spirit week is basically a daily spectacle, but on this particular day, ASB was putting on an eating contest. Each participant had a small table next to them plied high with cafeteria hamburgers (I know it’s gross).  I thought Janine was there to cover the contest for the school paper, but she approached the ASB “officials” and declared that she wanted to participate. And they let her. Now the thing about gross spectacles like eating contests, is they draw crowds. And about 250 kids were all waiting in anticipation. You will not imagine what happens next, and my intent is not to make fun or humiliate Janine, but this story goes back to my question, “What IS high functioning autism?” When the whistle blew the participants went after those burgers with gusto. But unfortunately for Janine, she must not have been aware of what was happening to her body. After about a minute or two, she bent over and started projectile vomiting all over the ground and all over herself. You can imagine how those 250 kids responded. And thank goodness this was before smartphones. I remember this like it was yesterday only because it was so remarkable. As she stood up and looked at all those kids laughing AT her, the biggest, sweetest smile broke out on her face and she exclaimed with genuine excitement, “Did I win?!”

So I ask, why is she “high functioning”? Because she can get straight A’s in school? Because she is in general ed classes? Because she can do things for herself? Maybe even go to college? But what do we say about this moment in time? A moment that any three year old could interpret as humiliating ridicule. When I tell this story the reaction is typically pity. Pity for poor Janine. Of course the irony is, Janine didn’t feel humiliated at all. She looked positively thrilled she may have won the contest. And so I wonder how things could have been different for Janine. What if we shifted our perspective and priorities?  What if we could tell another story?  What if we could set her on a path of self discovery, and the complexity of relationships and her place in it?  What if……..