Wednesday, November 9, 2016

To Find Out

I had to expand on the To Know part because there comes a point in time where one finds out about the diagnosis and in this post I recall the most intense moment I've had in my career and the reasoning why it was so intense.

Between the two chapters before this there will be a moment when one goes from not knowing to knowing. I have written about my story several times and when I read on the Internet the awful prognosis my identity was destroyed. My vision of who I was, and who I was going to become, became frozen and then shattered. I’ve heard from others that had a similar experience but there is one instance that will stick out with me forever as I was in direct contact the moment a person realized that they might just be on the autism spectrum.

            I was in the midst of a nationwide speaking tour with the target of speaking to student bodies and I had just given one of my largest presentations ever in one of the most pristine venues I’ve spoken in. As a speaker, it’s a thrill to be in such a great theater, but at the end of the morning segment (two presentations with around 800 students in each session) I had many 6th, 7th, and 8th graders asking me questions regarding my presentation. “Whatever happened to Emily?” was a common one, but many others such as, “My uncle” or “nephew” or other family member is on the autism spectrum is also common with a “thanks!” following that statement and during all this there was a student that was in line but he always made a point to be at the end of the line.

            Time progressed and the line around me dwindled and then a teacher started asking me questions regarding strategies and when he left it was just me and this one student who was always last in line. I turned to him and right as he was about to speak he broke down in tears. I was at a loss because this had never once, or since, happened and I had no idea what to say so I just stood there, very Aspergerishly, and waited. I had no idea what to say nor did I know what he was going to say, but I knew this the most intense moment of my speaking career, whatever this moment was.

            A half-minute passed and he finally was able to vocalize, “Everything you said in your presentation and the way you struggled in school… that’s… that’s…” there was a long pause and then a barely audible, “me.” I held my breath because I thought back to that website in 2003 that offered no hope and I realized I was about to be this person’s introduction to the autism spectrum. Of course, I couldn’t give a diagnosis, but at this moment it didn’t matter because this person was sure of it and was a sobbing mess.

            I did look around to see if there were any faculty around and except of the theater manager who was setting the lights and sound levels there was no one. It was just myself and this 6th grader whose world view of himself, and his future, were hanging perilously in the balance. He spoke of the issues with his family, and fellow classmates, and even students on issues regarding taking things literally and not reading social situations. I just let him talk and when he started sobbing when he said something along the lines of, “What’s the future like? Will it always be like this?” and with that I smiled.

            Why did I smile? I was coming off one of my largest presentations ever, but while the size was nice the questions from students were even better. When I present to students about autism I speak for only about 25 minutes and then I open it up to questions and the questions in that hour were amazing. So after I smiled I went on a five minute speech and I said some lines such as, “Did you hear the questions asked today? Did you hear the compassion and understanding? If I gave a speech like this 20 years ago I don’t know if anyone would’ve listened or cared, but there was a true sense of caring in this room today. And you know what? It’s up to people like you and me to not let whatever we have define us as we have to define it.” I also mentioned that no one, despite rumors to the contrary, is normal to which he smiled and I ended it by saying, “Autism awareness is always growing and from that will come understanding. Can things be difficult? Absolutely, but things can also get better, and be amazing. We have the ability to think outside the box and to see things in a different way so while things may be bad now, through understanding things can be better may just turn out great. I can’t believe the way my life turned out and I can’t believe I am the one saying there’s hope, but there is and I hope all the best for you.”

            The student was late for class and he thanked me and rushed away and afterwards I did alert the school principal to this encounter and they quickly tracked him down and got in touch with the family but that was the last I had heard. I don’t know how they took it or if they pursued getting a diagnosis, but that moment in that theater will live with me forever.

            Why is this story relevant in my book? I realize I have a broad audience as some of you may already know you’re on the spectrum, others may be parents, and others might just be teachers or in the medical field. Whoever you are, when a situation like this presents itself please, please, please be mindful that, in my opinion, the introduction to the autism spectrum is about the most tense event a person can go through and your words, well, choose them wisely because you don’t get a 2nd chance at a first impression and I can only hope that, on that day at that school, my words were what he needed to hear because the words I found on the Internet after my diagnosis took almost a decade to be disproven.

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