This blog post was originally posted on the Love & Autism website, you can read it here.
I recently sat down to answer this question. Tasked to write my Love & Autism story as part of our storytelling initiative, I struck at my keyboard….and then stretched my middle finger tapping that delete key.
Maybe paper and pen…yes…that’s it…I bet I can write this story if I got my snazzy new journal out. Even with my beautifully bound leather journal with the embossed phase Make Things Happen, I just couldn’t make this story emerge.
“Stories are particularly essential when it comes to defining our identity—understanding who we are and how we got that way,” says author Emily Esfani Smith. Stories are created. Stories emerge from the events in our lives and intertwine the listener to speaker. Stories weave us together, evoke powerful emotions within each of us. Stories and our collective narratives shape our realities, our world views and this year at Love & Autism we’ve decided to make this our theme: Stories that Grow Us.
What If I tell the wrong story?
WhatIf….whatif….whatif? The WhatIf Kid. I can hear my mother’s voice light and gentle, “Little Jenny, you are my WhatIf kid.” Shell Silverstein writes a magical poem called WhatIf where childhood’s fears are realized during bedtime
Last night while I lay thinking here,
Some Whatifs crawled inside my ear
And pranced and parrtied all night long
And sang their same old Whatif song:
The WhatIf kid, I donned this nickname for years for my mind often wandered and wondered about all the unknowns, all the whatifs. Whatif that fan falls on my brother and I’m not fast enough to save him? Whatif it gets cold and that man with no shoes freezes? Whatif that person grabs me and I never see you again? I’d plead and plead and plead to my mother. Whatif, whatif, WHATIF???? My little whatif brain collected questions around those I loved and how the world worked.
That WhatIf kid grew herself into a WhatIf adult and landed into the only redeemable profession for a WhatIf’s mind; counseling. As an MFT who specializes in autistic family systems, there were plenty of clinical whatifs that sustained me for years. Whatif we listened rather than told, whatif we loved better, whatif we were more patient as parents? Whatif!!! I counseled and created, and questioned in my tiny little office. And all was good.
Yet outside of my office when I listened close enough to what was happening in our autism community, I could hear so much hurt, shame, discrimination, misunderstanding, and pain.
And the whatifs swirled into an angry state…
Whatif nothing changed in how we think about autism?
Whatif this is it in terms of treatment?
Whatif we keep othering people with autism?
Whatif children continue to be restrained and abused?
Whatif job opportunities, housing, and schooling options continue as is?
I felt stuck. Depressed. Limited. It was 2014.
Whatif nothing changes? The angry whatif voice had crawled into my ear and this time they weren’t going away.
Any person with a Facebook account has scrolled through at least 270 memes of, “Be the Change you’d like to see.” So, I shifted that inner voice and started asking myself whatif I created change?
Whatif I could be part of changing how the world thinks about autism?
Whatif I could do it better?
Whatif we could create more love in our autism community?
And so I did and we do.
Love & Autism was born out of my whatif voice and each year since then my team and I gather and whatif together. We wonder. We ask. We create. We dream. We whatif ourselves into a fantastic line up with our mission of changing how the world views autism.
And we’ve had some amazing experiences because we’ve allowed ourselves to whatif. Whatif we could get Dan Siegel to speak at our inaugural conference? That would be big…and it was. In 2015, “Whatif we got married at your conference?” Anita Lesko said to me in a phone call and so we had the first all autistic wedding between Anita & Abraham. Next came, whatif we celebrated the beautiful talents of our community?” And the miracle project performers serenaded us with a show-stopping performance. Whatif autistic artists displayed their love and relationship inspired art….wow, that could be rich and so Debra Musikar and Keri Bower or The Art of Autism joined us. When Chou Chou Scantlin whatif-ed us into the first autistic cabaret show, I couldn’t even conceptualize how powerful a story could be told through her sultry voice and a wiggle in her hips. Some of our most amazing Love & Autism whatifs have come through taking a chance on someone unknown like Daniel Wendler who had me in tears as he invited us to create societal change by asking ourselves “Whatif I sat next to him?” when encountering a lonely teen. We’ve whatifed ourselves through our third year…and it was magical.
And now I let my little whatif voice get big and I don’t silence it. I let the whatifs grow.
what if we gave the power back to actually autistic voices and let them lead us, teach us, show us how to be better parents, how to challenge the status quo, how to accept ourselves fully, how to live authentically, how to become decent friends, lovers….humans. what?
WhatIF we silenced the negative tragedy narrative that has been all too commonplace and allowed a new collective narrative to emerge humanizing of all autistic people. Whatif we created a world where all autistic people were understood to be just people. Just like you and me, worthy of love and value, afforded a full capacity of human rights.
WhatIf we looked at neurological differences with new eyes and demanded change of the medical model of autism where autistic people are routinely considered broken version of ‘normal.’
WhatIf we grew love within our community rather than fighting over who is autistic enough or too autistic.
WhatIf we pushed ourselves to create change and invited others to join us to tell a new story? What if we wrote this Love & Autism story together?
What if we changed the world!!!!
Note from the Author:
What if we get it wrong?
What if we accidentally or unintentionally hurt another person?
What if we offend in our attempt to offer help/change? What if we silence or further marginalize? These what if voices do keep me up at night. But after four years of Love & Autism, I know that the answer to these what if voices is staying open and responsive to feedback. I welcome feedback about how we can do this better, with more love and intention to humanity. Email me at [email protected] if you feel compelled to do so.
WhatIf we came together