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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The Underdog

(Sometimes it’s an ordinary trip to the shoe store that really makes it clear how important it is that Dillan have access to the full 26 letters on a keyboard or letterboard, and the proper support and strategies that allow him to tell us something unexpected (and belly-tickling) like this…)

Trail-shoe-buying trip:

Mom:  Dillan, what do you think about these shoes?


Dillan:  I was initially skeptical because they looked awful in the box, but on my feet they are not as ugly.

Mom:  You’ve tried on a few different ones. Which do you like best?

Dillan:  Seems that it would be fitting to choose the underdog shoe. 

(Of course it would!)


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.

I have your words now…

(Dillan and I have been slowly reading all of your comments and messages, and while responding is not always possible, he is very happy to hear from you, and to know that he has reached so many people.)

Have to say I am blown away.  Now I wish I could reply to each and every one of you, but my intuition and reality can be at odds with each other.  Have to sometimes give in to our limits.  Typing is an incredible gift that sometimes takes an enormous effort.  I hope you all know that I have your words now, just as you have mine, and so we are being connected through our typed thoughts, and that has made my world even bigger and better than I could have ever imagined!

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Made it through 9th Grade!

Been a year since I graduated from middle school.  Hard to believe I made it through 9th grade!  In all seriousness, I really had a lot of worry about the reality of having to take all regular classes.  Taking all my classes was a major challenge, and one I am happy to say I feel proud of.

Cross Country Meet

Written 10/3/14

The only thing that helps me calm my body is running.  I really need it like air.  To be a part of a really amazing group of people which also have running in their hearts is like nothing I have felt before.  So a few days ago I ran in the first cross country meet.  That day I easily thought about not running, but then I realized that I had the opportunity to just try.  Having the practice and support from the other members of my team behind me motivated me to try.  In some especially strange way, their support allowed me to dare myself.

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