Finding Joy
We are nonspeaking autistic siblings. We could not communicate until we turned twenty and sixteen years old – five years ago. We were taught supported typing and creative expression at school. Joy took the place of depression and fear. We incrementally built our self-confidence. Now we have diverse teams of support helping each of us grow.
But inexperienced with the ways of the world, we have not always understood how skillful some people can be in misrepresenting us and taking advantage of our disabilities. We have always had to defend ourselves, but never like this. In the last three years, we have been shamed on and off social media for airing our thoughts aloud. We have been told we cannot think for ourselves.
We have always hoped that the people we shared our inner thoughts with would be our partners, our circle of trust, caring and nurturing us to our full potential. Instead of protecting us, some took advantage of our disadvantages. There are times they could have directed us to a teacher, a therapist, or a mental health practitioner experienced in autism and other disabilities. Instead they attacked us for things they don’t understand.
Initially we were bold and determined to keep practicing, in spite of some repeat lessons and resistance. But it reached a point where Max and I became too scared to post on social media, especially because our self-advocacy in areas of gender, sexuality, and human rights were being attacked in very inappropriate ways. The American with Disabilities Act protects our voices and choices.
Because of the abuse, we developed phobias, anxieties, panic attacks, psychogenic issues, and even got hospitalized. We are recovering and learning healthy and safe boundaries on how to better protect ourselves – who to trust and who not to. We’re also leaning stronger on kind and thoughtful professionals who are personalizing complementary supports to ensure our safety and wellbeing.
We have spent too much time trying to prove to the public that we are our own voices. We hide our writings, our thoughts, our joy, our pain. We are scared to speak up and explain our needs. Isn’t this abuse? We asked our mom to reach out to disability advocates, but how will she find time? She has been so busy caring through our traumas and stressors, trying to stay ahead of our repeat health challenges. There are days we have breakdowns, stress sweats, fainting spells, big cries, and inner crises. The medical system tells us to take more medications to drown our feelings. Some family members try to protect us by telling us to keep quiet.
We waited every microsecond of our childhood and teenage years wanting to communicate. We suppressed our thoughts and feelings. We felt depressed that we could not verbally speak. We have now reached a point where we have no choice but to start communicating to the world again.
Many people have been curious how we communicate. That will be a future blog.
For now, here is one of our favorite poems written by Max.
My Safe Space
There are roses in my bathtub Sun shines through the window
Gatorade in my cup Squirrels marching up and down
A fish tickled my toes A turtle curled up in my towel
I smiled at the roses They whispered in my ears
Nauseous in my stomach As agony dissipated in my brain
I scribbled with my pencil on the walls That it feels safe to be home
Nature lives in my throat Shining waves of laughter
Solitude in my heart As I prepare for the unknown
Creation in my core Empowers trusting me
