My Autism Speaks Loudly, but not Today

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.

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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.

 

 

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

CDI 20th Anniversary Gala

(In March Dillan was asked to speak at a gala for an agency that supported him for many years and has a special place in all of our hearts – following is a CDI blog post found at http://www.cdikids.org/dillans-message/ – Dillan’s typed words are in bold)

Dillan Barmache, age 15, recently gave a speech at CDI’s 20th Anniversary Dillan pic
Gala on March 21, 2015.  Dillan has autism and uses a letter board and keyboard to type his communication.  His words were spoken via his iPad.

Mom:  In preparing for the Gala, Dillan had some conversations during which time he reflected on his journey with CDI, and how far he has come over the years. He spoke to Tessa, who was his CDI Floortime therapist when he was 2 years old, and who continues to be an important part of our lives to this
day.  Tessa knows that for Dillan, the relationship comes first.  She asked him to speak a bit about relationships and being treated with respect:

“Therapists have allegiance to certain approaches that may limit them in their ability to heal.  A relationship-based approach that deals with emotions in a patient and connected way is a far cry from what many autistic people experience.  A really intimate and messy relationship is by far the most liberating and healing of all approaches.”

What do you remember about those relationships – the good and the struggles?

“A lot of therapists tried to help my family and me.  It was not easy though.  I was so overrun by my sensory and emotional feelings that all the work was hard to integrate into my mind and experiences.  My family also tried almost every moment.  I am a way better person all around because they loved me even if I could not integrate the risk of connecting with others.”

Mom:  Our family was better able to be there for Dillan because we were so well supported by our team at CDI.  Dillan shared with Debbie, his school communication partner, a bit about how the therapists from CDI worked with him:

 “It was really nice.  They sensed that I needed a lot of movement.
Getting calm was impossible.  Can’t keep a desperate to move child still enough to do a gaining a skill activity.
Hard to get my attention.
Hard to hold me.
Hard to keep me engaged.
And getting me to stay was so hard.
And really sad each time they left.
Reality that I laid in massive autistic pit.”

Mom: You’ll notice that Dillan’s response is a bit choppier here.  The fluidity of his thoughts and communication may vary depending on his internal and external environments.  Nevertheless, his words are powerful.

When asked more about his CDI memories, Dillan shared:

“A lot of sensory going to attractions that pummeled my ability to connect to others.  When I was eating and tasting much of my world some people saw a child who was not able to connect, but the people at CDI entered my experience with respect and did amazing work with the child I was.  Remember I am single-minded and so much of my early experience was tasting my world, and sometimes I could be really difficult to engage with.  The therapist had a lot to do with whether or not I could build a neural connection with them.  A few therapists deny much of what has been said before by other autistic people, not cause they are being stubborn, they have no relationship theory to help them find a real way to connect with a sensory child.  The therapist with a total developmental approach and a relationship mind has all the tools they need to get a connection with the child.  People really need to know how much I wanted to connect, but it was impossible.”

Lastly, Tessa asked Dillan what he would like people to hear.

 “Am really not sure people can get it.”

Tessa encouraged Dillan to keep saying it and planting the important seeds!

“A really huge message is sometimes impossible to allow words to even describe it fully.  Hard to put words to a life that has transformed.  Let me say that gaining a really healing relationship is rare and hard to find.”

“A level of understanding that I am whole in mind and that having autism is hard enough.  Attitudes are based on theory and what people see.  I am quite autistic, appearing as if all I can feel is bad behavior and limited ability to feel for others.  A hard thing keeps people convinced that we don’t want love.  Autism feels like a person is on the outside who has been made out of props and is controlled and influenced by every sensory need.  Inside of my mind I am in control with the rest of the world, but most of the world is oblivious to make the most of my efforts.  Yes, really hard to believe us that we can have an effort to connect.  I needed a group of people who had an ability to see my efforts to connect and who could do the same.  I am sad I had so many people in my life trying to make me learn, when all I ended up with was harm.  Feel I needed help with my sensory system and emotional regulation. All the people at CDI cared and I felt understood.  Anytime I am allowed a total use of sensory integration with communication, I am peaceful.”

Existence

I often wonder about lots of things but really what I think about the most is the injustice of how people with autism are existing.

Our existence is not really living.

Regardless, I believe  that in the right relationship amazing things can happen.

Boy With Two Heads

“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.