Part 3: I am standing right here: when ego and power trumps #autistic voices #StandingRightHere

Jocelyn Eastman "Cartoon Part Three"
Jocelyn Eastman "Cartoon Part Three"

Many therapies with the intent to cure are dangerous to our health. We are not science experiments. We are human beings. We are your children.

By Jocelyn Eastman

Part 3 in a 3-part series
Part 1 – I am Standing Right Here – Don’t Speak for Me
Part 2 – I am Standing Right Here – The Trumping of Autistic Voices

TW/CW:Violence, murder of disable and autistic persons, upsetting dialogue, discussion of problematic topics.

I know my words hurt. My words bite. My words hit at the sensitivities that a person has. My words probably strike at the very depth of people’s souls, shaking the instinctual need to be able to express maternal and paternal frustrations and joy as one wishes and destroying the social structures that everyone so clings to. I don’t have to use vulgarity, and I currently choose not to, but I haven’t always been that way. Even now, I can still be quite cruel if I choose to be. I don’t want to be. I’m simply not going to lie.

Your feelings might be hurt by what I say. You might be insulted. Your ego might be bruised. Your sense of authority might be challenged by my words. You’ll be able to recover. I don’t enjoy hurting people and I try hard not to, but the message needs to get out and it needs to be the truth.

While you may be feeling hurt, challenged and insulted, my experiences have damaged my soul. I don’t know how to recover from a damaged soul other than to teach you how not to create someone like me.

The truth is I’m here not simply for my own benefit. I have a pretty good life, considering my daily challenges. I’m here because I know that my voice is loud and that there are some who don’t speak, or whose voices are silenced or who may not be able to face the constant barrage of abuse that comes with saying things people don’t want to hear.

I’ve been called awful things. I’ve been threatened. I’ve been invalidated. I’m not afraid and I will not be intimidated. I’m not built that way. My body may be crippled and my neurology may be autistic, but my passion and my conscious is clear and strong to be open, kind, caring and do what is right.

I’m still here to say we need to do better. You may not like how I say it, but I’m saying it. I say we, because collectively, we do need to do better. All of us.

I want my autistic friends to know it’s okay to not feel guilty when you step away from a conversation that is triggering (before it effects you for days). I want you to know that if you reach out to engage with people and try to change their minds, I will applaud you even if it doesn’t work. If you work for organizations I oppose, I will give you time to prove me wrong. I will still be biased, but open to change on that one. I will not judge you by virtue of the company you keep. We all go back many years for many different reasons with many different paths to come together where we are now. We all ask to be looked at for who we are as humans and not for anything else. Do what you feel is right, be who you are and grow as you will. Treat me in kind, and you will always have my support and friendship.

I want my autistic friends to know I’m moving on from my own moments of obscenities directed at those who disagree with me. I know many have seen this change. I want my friends to know why. The anger I was feeling in these exchanges was effecting my health. I could literally feel my blood pressure rising. I was lashing out at strangers with anger for actions that had nothing to do with them.

Don’t get me wrong, those I was lashing out at were problematic. They needed to hear what I was saying. But my anger was stopping them from hearing me and was hurting me as well. My body ached more often, my blood pressure was higher and it was causing me all kinds of other problems. Those problematic people, for me, were representative of people in my own life who didn’t protect me.

My autistic friends need to know I’ve changed and I feel better. They also need to know their paths are their own and they need to do what feels right for them. I know how it feels to be angry for not being listened to. I will always be here for you, even if our words and tactics may differ.

My autistic friends believed me when no one else would. They embraced me when no one else would. They held me (without hugging me because I am squeamish) when no one else would. Others may not like their anger or their words, but I will not forsake them even if I have changed my way of speaking.

I want parents to step back and evaluate why they are posting their children and family members, our most vulnerable, for the world to see. I’m not asking you to stop reaching out. You should reach out.  I’m asking for a tactical change.

Why not reach out privately to someone like me? An autistic adult? I have an unique experience to offer. I may even know another parent who can talk to you privately. It allows for you to have a confidential and sympathetic ear without compromising your child’s dignity.

Many autistic adults are perfect respite providers. It’s a win-win. An autistic adult can receive income, and respite care is available from a provider with lived insight. I have provided respite care to children. My nickname is the Child Whisperer.

I want parents to know autistic adults aren’t against you getting help for the autistic person in your life. It’s the nature of that help we question. Many adults report PTSD from “therapies” they were subjected to as children. Many therapies with the intent to cure are dangerous to our health. We aren’t science experiments. We are human beings. We are your children. We aren’t against help in navigating a world not made for us. We are against being harmed.

We are against growing up with damaged souls. We want you to listen to us because when you tell us you don’t want your child to grow up to be like us, we actually agree. We want them to be healthy, happy and not spending their adult lives putting back together the pieces of their lives as many of us are.

I want people to step back and ask themselves why we react so abruptly to being challenged. I see it all the time, and I am always getting, “I am an autism parent!!! How dare you tell me I have no idea what it’s like to be autistic I live with it every day!!!!! YOU DON’T EVEN HAVE CHILDREN!! (insert lots of yelling).”

Well, I consider myself to be logical, and in the spirit of the logic that this argument presents, *technically* I lived with a parent who raised autistic twins, so that would make me qualified as an “autism parent,” yes?

We could go back and forth like that, and it would almost certainly escalate. Remember too, I have a lot more experience at this – my ability to withstand the onslaught and backlash of people who can’t stand my positions because I don’t defer to them (as a disabled woman, I get patronized a lot!) means that I can take a lot of hits. At this point in my life, I can almost guarantee it would not be me hurling the first insults.

I recall one time asking if my opinion would matter more as an autistic woman because I had a post graduate degree, owned a home, was married and had been gainfully employed for 16 years. The response was a questioning of my  mental capabilities. The individual asserted I was acting like a toddler for not agreeing with them. Because I am autistic, my mindset must be inferior, right? All I wanted was the same rights as everyone else. According to that conversation, people like myself are not afforded those rights. I’m expected to shut up or be characterized as having a child-like mind…sound familiar?

No one will ever understand the sensory and neurological experiences of a neurotype  they don’t live in. I will never fully understand the neurotypical experience.   I understand what it means to live with a neurotypical person. I don’t understand what it means to live with his neurology. I can empathize with my husband. I just can’t see the world through his brown eyes.

No one will ever understand the treatment either. We know parents are treated one way. We hear about it constantly because parents have the overriding dialogue in the autism community. The more challenges a person has, the less dialogue they are afforded;  the less validity their voices are given.

Yes, we are angry. We’ve spent years being abused, ignored, bullied and told we don’t matter. Now, we are adults, and we are trying desperately to ensure your child doesn’t meet the same fate. I don’t want kids to grow up with the painful experiences I or my autistic sister had – the shame, the need to pass, the years of dismissal, the abuse…all of it. I don’t want that for them.

The moment I found those papers in my basement … that was a private moment of shame, of guilt and of culpability in regards to how many issues my mere existence had caused. There have been so many moments like that. The moments where I was melting down so badly I couldn’t even leave my home. I’m strong enough to share them now. I can’t even imagine how violated I might feel if those vulnerable moments were out there for the world to see without my permission or input.

I could go on with other examples. There are so many. In the end, communicating with us and about us is not that difficult. We ask that you listen. We ask you be open to change. We ask that you respect how we wish to be addressed (IFL vs. PFL). We ask that you do not demonize autism and that you keep our most vulnerable moments private. We ask that if you need support in dealing with difficult times that you do so with respect and not blast it over the entire internet. We ask that you recognize that autistic people are a huge asset into understanding your own children, and that we can all stop saying, “You are not like my child.” I will admit at this second I’m not like you child because I am a 32 year old woman, and developmentally, that is not viable. At one time, or in certain situations, I may have internally experienced things as your child does.

We ask that you reach out for help to us, to counselors, to respite providers and in ways that are not going to embarrass your child. We ask that if you are in doubt ask!

Above all…

We ask that you see us as human beings, born with the same inalienable rights to respect, dignity and agency in discussions about autistic people and especially about ourselves individually.

***

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 .

2 Comments

  • This was hard to read and triggering but deeply true. Thank you. I am an autistic parent of an autistic child. I do blog about our lives, but always respectfully and in the interest of changing the WORLD, not us!
    Thank you for your brutal honesty and may you have times where this burden doesn’t lie so heavy on your shoulders,

  • Jocelyn says:

    <3

    I am not against blogging as a parent as means of support and building a community. What I am against is when blogging is used as a platform to demonize our minds, our bodies and our children…and to what end? It helps no one and only hurts us all in the end.

    Keep on keepin'

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