(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.
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.
“Until I lived in the real world, I did not know people really wanted to know about autism. Possibly I can give lessons telling my autism point of view. Feelings penetrate understanding of autism. Kind of prison people really are not familiar with. Let me tell you all about it.” – Dillan Barmache
(The story below was written at age 11 with Soma Mukhopadhyay in Austin, TX – first time he wrote about autism)
Once upon a time a boy had two heads. But the doctors did nothing with them. One head was smart, other head was autistic. People could not see the smart head. They only saw the autistic head. But the smart head heard and saw everyone. One day, the smart head was really tired of the autistic head, because that head had the same sound pattern for twenty minutes. Smart head could not think, so he had to fall asleep and waited for autistic head to calm down.
The process of coming out of autism was and still is a constant struggle that I experience every day. People need to understand that all of us autistic people make decisions about the people trying to help us too. We are so reliant on outside support that we live with a sort of connection, and a type of understanding is formed with our therapists. I have had so many people try and help me, but what so often occurred was an inevitable process that was impossible to change. Living with autism is so hard mainly cause I have to rely so much on the experience and understanding of others. Appearing to be kind only goes so far. Autism is a total overwhelming sensory experience for everyone involved. How therapists respond is the key that each of us looks for when we begin our journey with a therapist.
To each autistic person living without a voice, I hope you find a person in your existence that will believe in you, try to connect with you, and most importantly, do it always with respect and belief in your abilities to think.