Part 1: I am standing right here: don’t speak for me #StandingRightHere

Being autistic is not about living in a vacuum, sucking in everything around you, living in an existence shutout from your environment. If anything, the environment becomes more real, more painful, more evident.

By Jocelyn Eastman

Part 1 in a 3-Part Series
Part 2 – I am Standing Right Here – The Trumping of Autistic Voices
Part 3 – I am Standing Right Here – When power and ego trumps #Autistic voices

TW/CW: Upsetting dialogue, discussion of problematic topics.

Preface

This is the first of a three-part series about an autistic point of view to the current dialogue on the way autistic voices are framed as militant and angry. It is possible to discuss things without swearing or being dehumanizing. I think it starts with those who have the most power, the non-autistic individuals, taking a step back and listening to those who are autistic. Whether you believe it or not…you do have the power. I bet if non-autistic people listened to us and honored us, there would be a lot less angry people. Only time will tell. Thank you for reading…Enjoy!

Please indulge me two requests.

The first is before reacting, read the series in its entirety. Some of it is not pleasant. Some of it will be painful. This is my 5th attempt at part 1. My hope is that those who read the entire series will walk away with something meaningful.

My second request is allow me to speak about myself in terms which I want to describe myself.

I may refer to myself as autistic, disabled, crippled, a gimp or any other way pertaining to my neurological or disability identity. These descriptors are my own. I don’t in any way agree with PFL (Person First Language) as my being autistic and disabled is integrated into the way I perceive and navigate the world. Autism is part of my identity. I will respect other autistic persons’ requests to be referred to as a person with autism in discussions. I will not police others who are autistic on how they identify, and will respectfully discuss language with anyone at any time. However, I will not entertain arguments that insist that I, as a 32 year old woman, should identify myself as anything other than Jocelyn Eastman, autistic, disabled…and someone with a little bit of a big
mouth and hopefully a big enough heart.

***
I am autistic.

I am multiply disabled.

So often I’m told a ton of things about how little I understand about parenting an autistic child … about the guilt, about the struggle and about how hard things are. I want to respond parenting is difficult, but that alone would never be enough, especially because I have no children of my own.

I have an older sibling (not diagnosed) who exhibited a lot of “autistic behaviors.” Yes, I did go there. I went there because when I try to discuss the stereotyping of autistic people, I’m either told the behaviors are so awful and I’m so terrible that I have no idea, or I’m told “we are all just a little autistic.”

All that strangers know who read this blog is that I can type. They know nothing more of my experiences.

I can’t stress enough being autistic is less about behaviors and more about the internal  processes we experience. Behaviors? You can see different behaviors I have among all of my family members and aside from myself and my twin sister, none of the others in my family have an autism diagnosis.

I am told, “I can’t understand the guilt and the pain of what it is like to (insert either having a child that is not normal/having a child with issues/worrying about what to do…etc.).

Or, I am told:

when I explain my family doesn’t live with chronic pain…they live with me. I live with the pain. They live with me, living with the pain.

I had cervical cancer in 2014. That was a very scary experience. If my husband was telling people he lived with cervical cancer, I think people would have had some questions about how that could happen (he lacks the body part required). I make the analogy here of a parent of an autistic child who talks about their child. They can’t say they live with autism because they aren’t autistic.

In reality, I did say that it someone co-opted my pain for their self description I would be angry. I won’t deny that, and that is the truth. In the interest of full disclosure, I also said this:

I could tell you about what it felt like to be blamed for my autistic sibling being depressed at a young age. I stumbled upon records as a teen that went into some detail about my perceived role in having caused my sibling’s deeply troubled state. I can tell you how this was exacerbated and how I was expected to hide my achievements. I could tell you what it was like to be able to stand by and not be able to do anything about it, while being autistic myself. I even know what it feels like to go from provider to provider saying, “something is wrong, I think I need an assessment,” and not be believed. I was told I was imagining things. I know what it means to put in the hours and hours of research to advocate for an autistic person, the frustration that comes with navigating the endless red tape of bureaucratic school systems and medical facilities and what it feels like to need some damn support and get told no.

There was a point in my life when things were going particularly badly resulting in a meltdown. I didn’t know how to express what was inside. The wires that connect my emotion and my words don’t connect like others. They never did. I was in my own pain physically and mentally. I was remembering all the pain I caused others from my actions; things they say that autistic people are not capable of. I wasn’t diagnosed yet, yet I had been called cold, too honest; blamed for things that weren’t my fault; told I hurt others; yelled at for never understanding and never being enough; never doing enough and not fulfilling expectations. I was sitting on my bed at home at the time. I remember growling, marching down stairs, grabbing garbage bags, running upstairs and ripping every single award I had ever earned off of my wall and every single sports trophy off of my shelf that would fit in the bags. I stuffed the bags into the trunk of my car donating them to a trophy shop telling the owner to use them for children who deserved them.

When I was done, there was only one trophy left standing alone on the bookshelf. It was the first bowling trophy I received when I was three years old.

I learned later my mother had snuck around and saved a couple of them from my car. My motivation was to make the pain I had caused go away. I also know I caused her pain by ridding our home of the things she was proud to have there for reasons she couldn’t fathom. But how can I explain without causing more pain?

I knew I hurt other people. So often we are portrayed as not knowing. We do know.

I have experienced physical outbursts and have watched the aftermath. I have had words that just wouldn’t come out. I didn’t need to speak to know the damage I caused. Being autistic is not about living in a vacuum, sucking in everything around you, living in an existence shutout from your environment. If anything, the environment becomes more real, more painful, more evident. I express it and live it in an entirely different context and in a different way.

I could tell you the story about how I had a two week meltdown (one of many) and almost ended up committed, or I could tell you about how I laid in the emergency room screaming for 30 minutes in agony because of the pain from my physical disability. Both times looking at my husband who stood by, both times able to do absolutely nothing about it. Both times my husband was wishing he could just fix it and make my world all better.

We really do understand living with us can be difficult at times because we aren’t “normal.” I give all of the credit to my husband who stood by me, helpless as I was in physical or mental pain. I give him credit when he grits his teeth when I do my stimming or when I need to be alone and he wants his close contact. I give him credit when my secretive self-injuring behaviors leave scars on my body. I know that upsets him. He tries to understand. He only wants to love me. I give him the most credit of all that he does not take my problems and speak about them in public forums.

Yet, even without a word, I remember what my husband’s eyes looked like. He has never once complained.

But I know. I just know I hurt him. When I think about it, my face may not show it-

-but my heart cries.

I think in discussions between autistic people and those who live and care for them, there is this idea we have no empathy or we somehow lack all ability to understand or interpret the world around us. That’s just not the case.

While parents find themselves in situations where professionals, advocacy organizations and schools aren’t listening to them about what they believe their children need now externally, most people have the tendency to ignore autistic people about what we need internally. Both of these things are a juggling act and one an autistic adult not only has the lived experience of, but also the 20/20 hindsight to say, “This was a really bad idea.”

Yet we are still ignored. Even the utmost understanding isn’t going to keep the nicest of people from becoming angry. While I hope I can dispel the myth that autistic people don’t understand human dynamics on any level (again, we can in a different manner, and often surprisingly well if you ask us the right question), I think most people want to know why it seems as if autistic advocates can “seem” almost immediate in their passion, anger, intensity and vulgarity in dealing with those who disagree.

In part two, non-autistic readers will need to take off their shoes and hold onto their hats. In my life, I’ve been told to put on the shoes of parents every day. I have big feet. Size 11 boats.

Maybe it’s time for you to put on a pair of my shoes…beware Part 2 in this series…my shoes have been beat up.

***

Jocelyn Eastman was born October 21st 1983 with twin sister Jessica. Jessica was diagnosed as autistic at a young age, whereas Jocelyn was not diagnosed until 2015. She is currently known for authoring There Will Always Be Love, a children’s book about a sister who asks a lot of questions about autism and for being in the documentary The Sandwich Kids. She is also a contributing author to Easy to Love But Hard to Raise: Real Parents, Challenging Kids, True Stories, Autism World Magazine, and former radio show host for Innersight Freedom Foundation and ANCA. She has traveled around the country with her family speaking about autism and will be in the upcoming documentary Normal People Scare Me Too .