Autism = Me
Since my autism diagnosis, I've been writing and rewriting and rewriting a presentation on autism I'll give along with presenting ALICE. I'm not exaggerating when I say that I've written nearly 20 presentations over the past 2 years. And none of them felt quite right.
Finally, I woke up this morning and wrote another presentation that is nearly exactly how I want to present everything I've learned about myself, about autistic girls and women, about why so many of us are late diagnosed, while also tying in how my own narrative is woven throughout ALICE, the opera. Zane has offered feedback that will help me keep the talk as universal as possible so that anyone can relate to what I'm expressing. (lucky me with a brilliant writer of a husband who knows me SO well. It was his willingness to really get to know me over these past 20 years that allowed him to created such a "spot on" libretto for ALICE).
In a world that has based its understanding and descriptions of autism solely on the observations of white boys (it was only recently that science understood that girls could also be born with autistic minds), I'm excited to do my part in expanding our understanding of autism: not as a disease, or a deficit, or something to be eradicated or cured, but as an aspect of the natural diversity of humanity (while also acknowledging the difficulties that come with having a VERY differently wired brain.) We hear a lot about the difficulties of autism. And I don't want to silence those. I live them (in more ways than most people will ever be aware). Part of why so many girls and women are so often late diagnosed is because we become experts at hiding certain aspects of ourselves. We're also very different from autistic boys. (imagine that!) But our hiding ourselves, while on the outside looks like we're "fitting in" - always comes with a tremendous price at the other end of it all. A price I just couldn't pay any longer... and it was the refusal to pay that price that lead me to my own diagnosis. And I'm so grateful for the freedom of it all.
There are way more autistic girls and women than the world has yet to acknowledge. Autism isn't something to be feared. The autistic brain, we will continue to recognize, I hope, is capable of extraordinary things. And yet, so much research is built around eradicating autism. News flash, you can't eradicate autism. To attempt to do that would only result in the destruction of a beautifully different human brain. And yet, the largest research organizations continue to raise money to do just that. (please stop giving money to Autism Speaks... that organization causes so much harm to the autistic community in so many ways.)
Life, for an autistic person, often has to be quite different for many of us to be able to truly be ourselves and be healthy. (ask me why I've been so drawn to the subject of my first opera based on Hawthorne's Scarlet Letter). I've managed to continue to build a life that works for me... out of survival.... out of the desire/need to be free and freely myself... And now, with a word for what I am, autistic, I no longer feel completely that I was mistakenly deposited by an alien ship upon this weird and awe-inspiring world. (well, I think I'll always feel like an alien, but I now know that I'm not the only alien here.)
It's nice to acknowledge that I belong... and that I AM different... and that I finally love what is different about what makes me, ME... My talk will invite others to love about themselves those things that make each of us unique...We all have aspects of ourselves that are unique. It's often those aspects that the world wants to ridicule or point fingers at as though our unique qualities are something to punish. But, it's our unique qualities that hold the potential for the greatest gifts for each other. I'm excited to share my thoughts on this for the first time at the NOA conference. And I'm deeply grateful for all who have granted me this opportunity.
Pictured below is the autistic pride symbol. It's rainbow-colored because autistic people are much more likely to fall within the LGBTQIA+ community. And because the rainbow accurately represents the wide spectrum of who we are. Contrary to popular belief, our spectrum isn't a linear spectrum. High or low functioning labels are often wrong and deeply misleading. For those of us in the autistic community, we reject and don't use those labels. Also contrary to popular belief, humans are not all "a little autistic". You either have an autistic brain, or you don't. Please visit my autism resources page on my website to read about synaptic pruning that is one of the primary differentiating factors of the autistic brain. Simply put, we have way more synapsis than most humans (we don't shed as many as allistics do - or non-autistics do). It's what allows many of us to sense and hear and see so much more about the world around us. On the flip side, it's also what can cause us to become quickly overwhelmed. (ask me why I've ALWAYS hated malls!!) Also contrary to popular belief, our too many synapses makes us deeply empathetic, contrary to myth that we are not capable of empathy. To prove this point, sociopaths shed too many synapses, we shed too few. Our brains look very similar to the beautiful tree root networks underground. (read my story about the wise tree on my website to learn about what I learned as a child from trees). The autism "levels" (high and low functioning) are based primarily on the observations of others. But observations never tell the whole story, especially when it comes to the autistic brain. Most of us would love to share with you about the rich and complex world that exists within our minds of which most people are completely unaware. It's only been too recent that science understands this fact about non-verbal autistics. The autistic spectrum, not linear, is rather a spherical representation of our qualities that make each of us unique. And we are, all unique. If you've met one autistic person, you've met one autistic person. And yet, we have more in common with each other than we do with the rest of the world, which is what makes us feel so alien at times. Until we understand ourselves as autistic, we can end up feeling quite lonely in this world where we feel like we're the "only one" who thinks in certain ways. I'm deeply grateful for my alien brain, for my diagnosis that has lead me to be able to connect with a rich, diverse, creative, brilliant, deeply kind and empathetic community of other autistic adults. They make up some of my closest friends now. I'm deeply grateful for my diagnosis that has allowed me to find my kind. And I'm deeply grateful for the opportunity to share at NOA more about what makes me, me.
