Today is Mother’s Day, so I’ve decided to share something that Dillan wrote last year in the 10th grade as part of a history assignment about Enlightenment. It really moved me, and seemed it could apply to anyone (parent, teacher, advocate) who feels they may have insights to share. Our children are not always ready for our guidance, and sometimes students and society need some time and space to consider new perspectives as well. This is a favorite of mine. Hope you like it too!
Gaining Enlightenment allows a person some new perspective about the things they assumed they understood. When people are not interested in exploring the possibility that there may be another way of looking at things, then a longer, slower process of evolving new thinking must be allowed. How that learning happens for each person is different. So it is not the task of the enlightened to design the entire path to understanding, its their task to point the way.
(Sometimes it’s an ordinary trip to the shoe store that really makes it clear how important it is that Dillan have access to the full 26 letters on a keyboard or letterboard, and the proper support and strategies that allow him to tell us something unexpected (and belly-tickling) like this…)
Mom: Dillan, what do you think about these shoes?
Dillan: I was initially skeptical because they looked awful in the box, but on my feet they are not as ugly.
Mom: You’ve tried on a few different ones. Which do you like best?
Dillan: Seems that it would be fitting to choose the underdog shoe.
(Of course it would!)
(Dillan’s speech from the first Spectrum of Opportunity conference in March 2016)
A very long time ago there was a boy with incredible challenges, so he decided that the only way he could have the kind of love and peace he wanted was to spend more and more time with his toy animals.
In school, the teachers had been trying to make up new ways to teach the boy how to be a student before they even understood him. All they learned and understood about autism was that it should be brought under control, otherwise the boy would never learn. Decisions each and every day made the teachers feel they were doing good for the boy, but for the non-speaking boy, all he had was his mind to hold on to.
Before my teachers could even begin to really help me, they needed to understand my autistic mind.
Autism is amazing in the way my reality is experienced. My sensory system is like a movie that doesn’t play on the screen in a way you might think. You have no idea how important my sensory system has been for me. I may look like I’m not in this world, or tuned out like so many of you think, but what is really happening is that I am absorbed in the world around me. My mind keeps track of all the sensory information like a movie that I can manipulate. I am able to fast forward, slow down, and even pause the world. I have always enjoyed placing the world on pause and studying it in extraordinary detail. My teachers had no idea about having a mind like mine, and so we were locked in a constant battle.
Dealing with their academics was like a stationary bike, always peddling and going nowhere. Easy lessons repeating day after day in place of a real school education. Much of my mind wanted to know about the world like any other student, but it always was impossible. What my teachers believed about me influenced what they taught me. And these teaching practices were the problem, not my autism.
What I needed was my teachers to be my instrument. I needed them to learn and realize that autism is not a behavior, it’s a language to be viewed with respect. If they could have realized that, I would have played the most powerful music with them as my instruments of learning.
Our voice is hidden from the world of educators. All they think, they learned from minds that are not autistic. All they learned could never have helped them to help me.
The right teachers are all around you. They are autistic, giving people that have been speaking for a long time. Listen to their stories and make the especially hard cultural change in the way you talk to and teach others of us who have not yet been freed.
(On February 14th, Dillan and his dad, Randy, ran a half-marathon relay in the LA Marathon. Here are some of their thoughts about it…)
It’s a huge task to run a marathon. Not a huge task for someone like me, but a mighty task for any person. I did it alongside so many people banded together by the mighty task. We all ran and we all became no one thing. I was not autistic running, I was only running. I was among thousands of people like me, not because they had some neurological problem, but because they were doing a simple, normal thing together. Any other time, I am a standout. I have noises. I do weird stuff with my hands. You know that because you are reading this blog by the amazing kid with autism who actually can have thoughts too. But in the marathon, I was only a runner like those others, and I crushed it!
So the LA marathon finally came and went. The weather turned out to be perfect and not too hot as they were all projecting. Dillan was calm and collected the whole morning and seemed really ready to run. We started our half of the marathon after our friends came in with a great time in under 2 hours. We congratulated them, took some pictures, and then headed off to join the pack for the second half. Dillan was amped up and went out hard. I had to keep telling him to relax and pace himself. We stopped to walk only for each water station to make sure we stayed hydrated. Dillan kept a very steady pace and didn’t waver a bit until maybe the last mile. He started losing focus and tried to walk, but I would not have it. I encouraged him to keep going as the finish line was in our sights. We ended up crossing the finish line arm in arm. When it was over, the official time clock showed 3:43 for the whole marathon. My Garmin showed we did 13.1 miles in 1:46.5 at an 8:13 average pace. That is by far the fastest recorded time for any distance over 10k for Dillan (and myself for that matter). I was so proud of him and he was even smiling right after crossing the finish line.
(Chocolate milk is the best “recovery drink” and Dillan loves it!)
Now that I have a voice, I am seen and heard in a way that had never been possible before. Anyone who sees in my inner mind, sees me. Autism is a voice too, but not in the way I want to be heard. People all can hear my autism, and they interpret from it a lot about who I am. Before I had a voice, I was locked away in a prison of a body that was uncontrollable. No one saw me inside trying to love those that loved me too. Before, my world was in total isolation. My family loved me, and I felt their love and wished I could speak to them and say, “I’m in here.” They, more and more every day, saw autism acting in my place. Autism acting out my feelings of loneliness in the way I line up my animals, in the way I make my piles, in the way I scream and laugh. Always autism acting in my place, not me. Not my mind that wanted to love back and to be included. Hard to describe a world that is in total control of you. Hard to describe how impossible it was to be always in prison. No words can fully explain. My words fill in parts of an experience that I existed in. An experience that was totally overwhelming in my senses and in my emotions. I was in chains, made helpless by a sensory and emotional system that was faulty.
Appearances, I suppose, really matter to people. Each day I shaped people’s perceptions about me with my autism. It took finding that person who could imagine me before really seeing me, to break through. A person who believed in me and had so much confidence in me when I had none, was a person worth working as hard as I could for to push through the autism to relate back. Rarely has a person been able to see past my autism. When I had really reached that place where I could type out my words and have them seen, read, and heard, then I could tell the people in my life what was happening to me, what I was struggling with, and what I was feeling. I could give them a way to help me that I could never have before. I can finally speak for myself now. I can talk with a voice. A voice that is now being heard. An autistic voice that is being heard around the world in people’s own lives and in their own families.
I have been given an opportunity to share my experience in a way I never imagined. Apple, THE Apple, wanted to make a short film about me. It was so crazy to be in the film, with people in my home, looking into the corners of my life. It was overwhelming, amazing, scary, incredible, painful and awesome all at once. The crew was so respectful and supportive. Only hard to push past my emotions that railed and raged.
Now, here it is for all to see. I am elated and terrified all over again. I want you to watch and know I am not the only one. I am not a fluke. This is about all of us trapped in autism who yearn to be free. I am grateful so many will hear my voice. I only hope they will listen to the many others needing to be heard as well.