(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.
**Last 2015 flashback**
(CDI is an incredible agency that worked with our family for many years. They believe in the importance of relationships and really listening to our children, and have been huge supporters of Dillan’s message. Dillan was interviewed for this year’s video and asked to speak about what children might want their parents to know )
Your child has so much to say. You have to listen no matter how hard it is to hear them. They are inside the prison of autism and they cannot escape alone. Most of the battle is never giving up, and finding new ways and methods to release a child’s voice. Everyone has a unique voice and what they have to say is a valued gift to those who want to hear it. There are many ways to learn and teach and share. We must always find them. Just keep trying and don’t let anyone tell you there is nothing beyond the autism. I hope every child finds a way to be heard and is surrounded by people who listen.
(The Block Party celebration on 10/17/15)
Dillan with Joan Maltese – Executive Director of CDI
Dillan’s brother, Ethan, joined him at the podium
Being here tonight is not only an honor its an amazing opportunity to be able to take the battle all of us are fighting to a whole new place. This battle against the misconception that autistic lives are destined to be without love and relationships needs continual support and hope. We must never give up and we must keep finding new ways to help autistic people be a part of their own lives. I think we have done some amazing things so far; either we go forward or fall back. I ask you all right now to look into the future and never give up on us. Thank you so much.
Dillan with Tessa Graham – Director of Clinical Services (and his 1st Floortime therapist!)
**More of summer 2015**
Editor’s note: This was a very exciting evening for us! Dillan received the HollyRod Autism Champion Award at the DesignCare 2015 event, which gave him an opportunity to speak to more people about autism and the need for a shift in perceptions (He has a one-track mind!). How he made it down the red carpet (ok, it was purple) is beyond me, but he posed for pictures and actually typed for several different reporters…typing something different each time, but always a version of the same message – autistic people need to be heard. A big THANK YOU to HollyRod and their generous supporters for all they do for our community!
(Dillan’s acceptance speech)
Many autistic sons and daughters might get a moment now and then to find a way to communicate their thoughts. Many times a family member hears and sees old tough behavior and buys into the all powerful notion that autism is an overwhelming impossible assailant who has taken their child’s mind. Not until their child’s voice is heard by alternative communication are they able to see past the autism and discover their child. Having come this far, I have learned that we autistic people also want to be heard, not just for a reward, but because we are individuals who want to be in relationship as much as any of you. Getting this honor and having the opportunity to be allowed to be a representative for another perspective has been amazing. I so hope to change the way that autistic people are seen. I hope that you all can begin to let go of the same old beliefs and listen to autistic voices all over the world. We are people easily disregarded but we are more like you than you could ever imagine. Thank you.