As an advocate for myself and when I can other people I run into a question a lot. “How do you do this?” This question most often comes from my fellow autistics. As someone diagnosed as an adult I find a lot of my experiences without diagnosis mirror the “medical treatments” others on spectrum who were diagnosed have. Child abuse in disguise as therapy in order to teach control reigns the autistic childhood, we learn silence. We learn stillness. We are erased with in our own bodies as much as possible. We are punished for existing. The best autistic parents even do parts of this because there is no voice that they hear, yet, from the autistic community. Our song has just begun.
The autistic culture is one of enforced shame, it is one where we deal with a lot of hate just for being. This is in part due to a lot of hate organisations like Autism Speaks, who sink their budget not into helping people but into quackery, negative ad campaigns and convincing newly minted parents of autistic children that their children are a burden. That their children will never live on their own, get married, have a “real job”, or anything that is valued as productivity. These parents are convinced that there is only pain in the life of the autist. So they create more of that pain, feeding it. I do not deny that a lot of things with autism really suck but I LOVE who I am.
How does one learn to speak? I think this how to might apply to survivors from many types of abuse. It is about regaining the voice. This process is not universal and is a general guideline to what I answer the most often when people ask me how I blog, how I advocate, and how I risk going out of my house being so far from the norm. I think I hide less and less of my abnormality. I celebrate it now, but it is an on going process and journey. I wish there was a universal answer but here is what I worked out as far as what I do subconsciously and consciously that I can put to words.
1. When I want to be silent out of fear, I speak up and risk the consequences. This to me is the basis of self advocacy. Oppression is born in a culture of fear, so I must not obey the fear that tells me to be quiet. “If you are good and quiet nothing bad will ever happen.” If that was true I would be a far different person, because being “good and quiet” only lead to pain. It leads to secrets. Good and quiet would mean still being with my exhusband, it would mean watching my father murder my step brother with a frying pan, and it would mean condoning every act of rape, malpractice and other harms brought to me by people who tried to take advantage of my selective mutism, of my physical fragility and of my silence. Sometimes it is a small noise, other times it is a roar. Sometimes it is actually words. Sometimes a song. I am not silent. Not anymore.
2. When I am threatened, I do not revert to silence. Making noise leads to punishment. It leads to the threats that come in a variety of forms. I had a medical professional threaten and then withhold my pain medications on more than one occassion, because she did not believe I was not addicted. I suffered. I was then told if I kept speaking up to her boss about these threats and punishments she would have me black listed. I took that threat to her boss and switched doctors. I have a doctor now in the same facility. I wanted to be silent. She is no longer my doctor but treats others, thus I also am in the process of number 3.
3. Do not let the threat harm others. This is a mixed bag. The threatening person may be someone you cannot stop. This protection must never come at a cost you cannot live with. This means do not chase the axe wielding halloween monster, go for more qualified help. It means talking to someone’s boss, documenting issues. This is often what gets me to perform step 1. If the doctor was allowed to bully me with medications I needed and threaten my life that way, she would be allowed to do that to other people who may not be able to endure it, be able to adapt and if someone else spoke up without documentation I had, then I was harming that person. Thus i went to her boss in step two. As you can see these steps are not in order because they are more a mobius strip how to guide for living.
4. Document the threat. Little notes from my exhusband, recording the doctor without her knowledge as it is legal to do in my state, pictures of bruises. Those parents who send their autistic kids to school with hidden cameras and find out that not so shocking to any of us, abusers aer out there ready to harm your vulnerable chiild for being who they are.
The same process applies to why I write. I cannot put on a super hero cape, race about the world and fix it. I must slowly advocate for myself and then when I can on bigger projects. I cannot advocate for others if I do not come first. i think back to my first few tries at blogging. I threw on a secret identity, I tried to hide who I was. Yes, there were other blogs before Textual Fury caught fire. I stumbled, I struggled with my words out of fear. Then I realized that was what i was trained to do and the rebel that lives in the core of my being took over and I wrote the first post here. As I wrote more and more the tone of my blog changed and I let out the “monster” i feared. It turned out that person is pretty darned cool and I began to push further and further out in the world as myself. I never hide anymore.
So how does someone conditioned their entire life to a culture of silence learn to speak? By doing. The posts I never share, those still happen, the poetry saved on my hard drive instead of published, facebook and talking to friends, gathering with other autistic people. Knowing what I know now those are just little things. It has to be something you want, so you have to stop hiding from the desire to write, to sing, to speak, to shout to be. The thing is? Just wanting to IS enough. When people ask me for help it makes me proud, not of me but of them. I am proud of every single person who takes on the difficult journey of learning to speak for themselves. This is not a challenge exclusive to autistic folks, though the culture of silence caused by shaming and abuse seems to be so prevalent among my people that there are no autists I know without PTSD or that they know. There are no autists without pain, suffering and a knowledge of abuse that is intimate and too close, that I know of… except perhaps those children being born right now. So we are learning to speak so that they do not face the battle of a life where our words are forced back down our throats until we choke on them. That is why I wrote this out. The how to on blogging is the same as other things. Baby steps, do what you can and try to do a little more each time. Cry, laugh, feel happy, feel good, struggle with it. Live.
I think of the others who came before me, for I was hardly the first blogger with autism out there. My brain does not want to write names but I can see faces, words piled up before me that create a beautiful sky and world. I remember the first moment I read something by autism speaks and it broke my heart and filled me with fear. Was I seen as such a monster? Did i deserve the abuse? I was a baby back then, not yet a woman and lost in a world of flying diagnosis where everything seemed to stick. Then I decided to find adults on spectrum too. Now I have loving friends who hold me close, even if it is just as text. Better as text since I can enjoy that. The diagnosis that stuck saved me so I could find out that no, those descriptions of horror are wrong. Even if I had never been able to live on my own, they are wrong. There should be no shame in having a need. There should be no shame. So i am writing this for the people who inspired this post by speaking,by learning to speak, by asking, and by being.