autism

All the Things I Kept Inside

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This post has been tough to get out. I am a careful guy who thinks about perceptions and wants to get just the right one out to readers. Can you imagine that I am a nonspeaking autistic who can actually have that option? It’s been a long tough road for me. You see, around this time last year, I had felt the reality of my future like never before. Still so many things to do, and yet fear gripped slowly through my soul – that the movement towards my future was already halting. The facts would not change. The accomplishments would always nicely exist like some trophy locked away in a cabinet. I had shared in graduation activities like other students, had fulfilled all of the classes needed to get that diploma, sorted the daunting college application experience enough to be accepted into one, and yet I really felt nowhere near ready to step onto another path that would take me away from all I knew. It was summer 2018 and I was already unraveling.

Being autistic is stressful enough. I had so much on my mind that having to think about things like funding for my support person to be able to go with me to college was almost more than I could handle. I got intensely nervous. It is hard to not have those feelings when someone else is deciding your future. The process involved an assessment and report writing, and then I had to wait. I hated the long wait.  It took many weeks, months really, until I heard that I had gotten the authorization for my much needed support person.  Hope flooded in. I had it all in a way, the acceptance of a college, the funding for support, yet I did not feel it was right that I was only one of just a few of my autistic brothers and sisters with this opportunity. There was this pressure that I had been feeling for a while. It was the pressure to try to attempt to set a precedent. I almost started to hate that I got in.

I had this idea that people in college would really be somehow able to see me. That the autism that controls my body would somehow not paint the usual picture of special needs. I looked forward to an ideal situation in college – it had to be better right? After I started classes, I began feeling the pressure, and I worried I could not keep up the pace I had set in motion for my classes and running life. There was a new level of expectation. Being a Kingsman meant running and training on a whole new level. I got up early to get to campus, ran hard in the afternoons, and even ran some mornings before class and got really strong. To the outside world I looked like I was managing it all. Inside I was really struggling. The feeling of not failing crept into my mind. I got harder and harder on myself. I got so lost in the schedule of going to hard runs and typing for all my classes that I forgot who I really was inside.  Mostly, I got stuck on my ideas that success had to be achieved at all costs. The idea of really allowing something to naturally evolve was not an option in my hectic schedule. I had intentionally set these things in motion and I needed to follow the path of least resistance – any accommodation in my schedule meant not having it all. I got totally overwhelmed. Things felt manageable on paper, but in reality I got too worn down, and that is when I knew I had pushed too far. I experienced a type of autistic reaction to my internal stress.

In the spring semester, I became greatly stuck in autistic modes of movement. I felt the pressure of my life crush in on my high spirits and I felt intense pulls so strongly that I could not help becoming lost in my patterns. I felt like I was transformed, but not in the way I had hoped. I was turned back into the trapped boy behind autistic walls that could only hardly be broken open with my team. Instead of running with the track team I had to stop. I even became injured which made all running impossible for many weeks.

The system out worked my whole reality. It was set up perfectly for someone who is neuroliteral*. The way students normally start to seek out support is they look to each other, but that option isn’t there for autistics like me. The reassurance that I so needed was nowhere to be found. I needed to know that I really could acknowledge my struggles and fears, and that others wouldn’t see me as a failure. I wished for reassurance that I was not the only one.

Then, my year was over. I was nervous to see the results after such a challenging time. My grades were fine in the end. I had come out the other side. Some of my strong autism is going back to sleep, but not all of it. I am still recovering from the stressful months. I can run again now. I think that will help me heal inside. I am wondering what will happen in the fall semester. I have had a great successful semester, and a very challenging semester. I don’t know what the next one will look like. I don’t know whether to hope or whether to worry.

*Neuroliteral is my very own word which means having a typical thought process along with neurology that is nonautistic.

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Running Toward Myself

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I have experienced many challenges in my life with the autism, that takes root in my actions, my thoughts, and my feelings. However, I have also been blessed with gifts, and I am going to talk about one of them today. I wrote this essay for my college applications, and it means a lot to me that you will also read these words about the times when I can leave my autism behind.

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Running Toward Myself By: Dillan Barmache

It would be easy to write about autism. I always have that inspiring story in my pocket, The Boy Who Had Autism and Learned Anyway. In this moment, however, I want to talk about the moments when I can separate myself from autism, even if it is only for a short time. Those moments come when I run.

I am on the cross country team in the fall. I run track in the spring. I wake up early in the summer and run miles just because I want to. I am fast and my legs are strong. My body moves with certainty and obeys my commands. That means more to me than it does to many others because in almost every other moment of my life my body is a mess. The chasm between what I want my body to do and what it does is huge and everyone who spends more than five seconds around me can see it plainly when I run my hands through impulse patterns and babble in nonsense noises. So, when I run, those moments of control are like air to the drowning man. My body goes exactly where I want it to.

My most ambitious event was the time I ran a half-marathon with my dad. He and I trained hard. This was, after all, the longest run of my life. As we trained my dad would strain to keep pace with me. I would wear him out with my voracity for the trail, eating up the ground beneath my feet. We trained until the day came when we had to go to downtown LA and put our feet to the pavement.

You could think that a run like this would be easy. I’ve established how I love running, I’ve talked about being good at it. However, I have so much more to consider when it comes to an event like this. I would be surrounded by strangers. I had to sleep near the event in a strange hotel room with none of my familiar comforts. My routine was crumpled up like a piece of scratch paper and tossed away. To a person like me these are major, catastrophic concerns. My parents have to constantly wonder how I will react. Will I be able to handle it? Will I break down and freak out and have to be pulled away into a quiet room where the stranger’s’ eyes won’t see my weirdness? I felt not just my own anxiety, but the anxiety of my parents as they tried to plan for every problem and prayed for the things they can’t control to just go smoothly.

Just before the marathon the runners gathered at the starting point. The buildings of downtown LA loomed over me. They closed in like giants and all of us gathered runners were packed in together. I did feel the energy getting wild inside me. I felt my control slipping. I felt the autism that wanted to take over and become everything my parents and I feared. Then, the signal came and it was time to run, and none of it mattered anymore. The threat was over the instant my legs started moving, because then I knew exactly what to do. Run and run and run.

I finished the half-marathon just like the waves of people around me did. I was part of them and I fit seamlessly among them. You can’t imagine how rare that is for me. I am always either the odd boy off to the side with special needs, or I’m the miraculously intelligent boy everyone is shocked can do anything but flap my hands and repeat simple words. I’m always different. I’m always other. But when I ran that day I was just a runner. I was just Dillan.

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Instruments of Learning

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(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.

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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.

My Autism Speaks Loudly, but not Today

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Voice_poolsideNow 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.

Boy With Two Heads

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“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.

Coming Out of Autism

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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.