Running Toward Myself

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

(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.

I am a runner

(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…)

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Dillan:

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!

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Dad:

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!)

 

 

Apple

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.

 

 

CDI Block Party

**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)

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Dillan with Joan Maltese – Executive Director of CDI

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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.

 

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Dillan with Tessa Graham – Director of Clinical Services (and his 1st Floortime therapist!)

 

HollyRod Foundation DesignCare 2015

**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!

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(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.

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West Coast Communication Symposium

**A look back at summer 2015**

(A communication conference hosted locally by REACH (formerly WAPADH) in July 2015.  Dillan was thrilled to participate in two of their panels, and also had a chance to hang out and chat with Tracy Thresher of Wretches and Jabberers)

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I. Taking Our Rightful Place – panel of high school students who type to communicate (on panel with: Emma Cladis, Jeffrey Diamond, Woody Brown and Killian Hynes).

I was lucky enough to be asked to share my experience as a student in high school who types to communicate. The people of WAPADH have been helping me find my voice for years and now I have the opportunity to share it with others in my situation and the people around them.

(Following were Dillan’s comments on the subject)

People are always afraid to let autism into their classroom. Making the teachers nervous easily is the first trial to get over. We do not belong in their idea of a perfect classroom. They do not say it, but it is plain to see. I greatly need a strong partner to help me bring my type of learned mind out where they can see it and not be nervous about the autism in their classroom. Need a typical education, but really not in a typical way. I will move, I will make noise, and sometimes I need to leave class. But to leave class is different than to be blocked from class by people who do not believe I was ever really there. In classes not familiar with so much autism that is easily seen, it can be hard to make a good impression. I am more work for a teacher who has so much to contend with before they let autism into the room. People, it is only possible to overcome this all with a team behind me to keep my autism in needed peace, so the teacher can forget it is there and teach things I want to know.

My autism is full of erratic needs and constant impulses. I am not always able to stay rational, so it is critical for someone near me to keep me from drowning in autism. Deb knows how to keep me even and what to do when I can’t be stopped. It is not so bad when things do go crazy. It happens and then it passes, and it is a poor reason to keep all of the autism locked away in a small class of boredom and repeated lessons of washing hands and days of the week.

Having technical skills in supporting a typer’s communication is only one piece to the puzzle of autism. I need a multidisciplinary approach. I am supported to type answers to academic problems, and to say what I think and control my uncooperative body. Some days I am able to handle more on my own, but I need someone to believe in my ability to gain independence and recognize when I do need additional support.

Not only is the strategy or intervention important, its also knowing when to use it and when not to. A strategy may be helpful in one class, and dangerous in another. Gaining regulation is first. Then I am able to get to a place where my rational mind is in control and I feel somewhat calm and able to succeed. It is important to have a support person who is flexible and ready to help me acquire the ability to navigate and perform what I need to be a student in a classroom.

Most importantly, I have to talk about the emotional piece to my educational experience. If I had a support partner that only focused on typing and academics, it wouldn’t be enough because I would not be a real person to them. In taking my feelings and experiences into account, I become whole in my support person’s mind and then I know I’m not alone in this world. I need to be heard. I am not heard when therapists are using some strategy alone and not really talking to me. We lead lives in isolation, and to type opens doors to personal relating, which is the real meaning of communication.

“Young hibernating mind ignored for many academic years finally woke up.  The expectation to successfully tell people I am smart enough has been set, and no ignoring it.  Hearing teachers educate my mind supports my communication and lets me excel.  Fluidly tuning in to how I communicate identifies a good communication partner.”

 

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Dillan was so happy to be at the conference, but needed a run!!

 

II. Taking our Voices into the Future – panel focused on future advocacy in the areas of communication, education and inclusion (on panel with: Tracy Thresher, Larry Bissonette, Emma Cladis and Jacob Artson).

People with autism are finally coming out of their isolation and showing everyone their minds and hearts. We need to break more silent voices free to the public eye. I spoke about moving forward and the future of educating those with autism.

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(On this panel, Dillan shared an autobiography he had written for school in the 9th grade)

My Autobiography

I am Dillan Barmache. I was born in December 1999 and I have autism. Home is a kind of haven for your nice, typically wired kids. But if you have autism, not the kind that is so much more easily navigated, but the kind that is tough, the kind that leaves you in a prison each day, home is the only way to stay sane. My amazing dad and mom always loved me, even though I totally ran around when they tried to be near me. It’s incredible how they could have loved me since I was incapable of making an uncooperative body love back. In the evening, I really was so difficult. Some days, before their patience and strength ran out, I would attempt that impossible-to-resist dream of getting my body to calm, always at a disadvantage. My brother Ethan is totally that typically wired kid. I think of his nine years and all the time we have not been able to communicate. I think instead of the pain, I remember the only way for the love to be shown inside our hearts was in our play and in our arms around each other. The only way to stay sane was in the hobbies a person like me could find that would engage my autistic mind. So it was in my family pictures that I found looking back at me a sort of life that seemed normal. And the only other way to stop autism’s control of me was to keep my body working its muscles with Cross Fit and running. Autism’s hold is broken by feeling the sensations brought on by hard exercise. Internally getting a sensation is sometimes more attractive than outside sensory stimuli.

Every day I dreamed of finding an experience that my teachers would never bring to the classrooms for people like me. Until the time I was in middle school, I experienced institutional lessons that frustrated me. They taught us concepts that bored the mind and meant nothing to bodies that couldn’t listen. I would not entirely say that I ever expected to be treated like a student who really was capable of some higher-level thinking. In cases like me, if a student cannot communicate, not since venturing into this life, it finalizes how people speak to you. So when I acted out behaviorally, it made people conclude that little was in my mind. To remember the way that I was in those early years is extremely hard. To not have the help I needed to be heard was like being in the worst place imaginable. It would have been easier to get through if I were really the kind of student that teachers and people believed in. The hope for understanding for my autistic mind was placed in the hands of the teachers and specialists. Each person is wired differently. Autistic wiring sometimes appears to be radically different than any other little kid who is typically wired. The normal learning that I thought I was going to get was in reality attempts at conditioning autistic behavior using repetitive circles of experience that oppressed my mind. Their way to my education was to have control of my behavior. My autism took over easily because much of my mind was finding it’s own information to learn. My elementary school years also became filled with reports of my out of control behavior. I admit I was extremely broken in soul and spirit. In elementary school, I was in an autistic class that for years taught me that I was far more set in my autistic mind than people could handle. Pathetic lessons intuition told me I already knew, but my sensory system was so overrun each second of every day that I only had my experience in other things to help. Yes, I even thought when I found the difference between my autistic mind and my regular mind that my life and education would be better. I was going nowhere until my middle school experience. Very little has been said about how education could be handled in an effort to teach the totally sensory driven body. Most importantly, teachers have to believe that there is a mind capable of some higher-level thinking. Never had I imagined that one day there would have been an individual who used determination and belief in a way that unsuccessful teaching approaches could not have attained. The kind of education approach I needed was an intense combination of working the mind and body in order to get to know each thought. I learned that if I experienced respect with a sense of patient emotions towards my autistic mind, that I could begin to feel hope. With time, anyone would assume I have dealt with all my educational pains. In reality, only recently am I able to feel safe enough to look back at my reality, which was a lot like being trapped in a sort of death; a life not living.

To really be heard has always been my dream, so when I gave my graduation speech entirely without saying some stupid remark about the way autistic people are educated, all the people heard that day at my school; and then even more that afternoon on the news. I never thought it would take only a few years of intense work to get my autism to live without needing to be in control every second of my day. I learned that if you never place your belief in some people, you will never have the rare chance at a dream.

The future is something I realize that can be uncertain. I hope I do get lucky enough to work with another person who understands autism. I am able to do anything as long as I am supported by a person educated about the sensory needs that I have. The importance of an education is to learn about some area of study. To be able to learn and be at a college on my own, and then to be able to give talks about disabilities would be my goal. Maybe someday I can find an amazing woman. I really love the idea of marriage, but I am not sure about kids. I hope I will have the very same chance to be in a real relationship that all other people have.

I am still trying to find the answer to the reason for why we are here. To my disappointed self, I try understanding why I have autism. And sometimes I will even start to reach a conclusion that I am meant to do more, even make a difference in the world. But on the days when I get lost when dealing with me, the autistic me, it is so unbelievably difficult I think I am simply in hell. Reality can certainly be overwhelming. I am lucky though to work with eclectic people who talk to me and hear me, something that means the world to me.

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Debbie and Cheryl…part of his “eclectic” and fantastic team!

 

III. Spending time with Tracy Thresher (a highlight for Dillan!)

There are many people who would say that it was impossible for either the man who inspired my journey or myself to have a dialogue. However, against all their doubts, we both sat and discussed our hopes and dreams together.

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Thank you WAPADH/REACH for hosting such an important and much-needed conference!

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Darlene and Katie of REACH with Dillan and mom