May marks the 10th anniversary of my blog. Since 2009 I have been sharing my experience with autism with an unleashed level of vulnerability. After 26 years locked in the closet of the unknown, I found my diagnosis to be a liberating experience. Though the diagnosis was liberating, living with Autism is a challenge that pushes the boundaries of human acceptance. It is not easy being the proverbial social battering ram. Yet I found that my honesty gave hope to others as I have traveled this path with only late life interventions. It gives me great joy to know that my openness helps others.
It has been a while
One of the drawbacks to my openness is it sparks the same openness in others, and not always in a positive way. The constant bombardment of criticism of the deepest parts of my being slowly inject soul toxins and weigh me down. To feed the souls of others at the cost of my own is not a healthy approach, and so I took a long holiday from blogging.
I didn’t set a date to start blogging again, and I was quiet about my departure. Instead I set reassessment dates every quarter to decide what I wanted to do with my advocacy work, returning only when I felt healthy and at peace. In that time I found myself doing much more personal writing and even wrote another book. If anything I learned I was not taking enough time to create elsewhere.
Now that I am back, my publication schedule will be monthly with maybe the occasional special edition post.
A re-branding, of sorts
2019 has become my year of healthy living. I have made adjustments to my diet, started exercising more, and even cut off all of my hair which I have donated to making wigs for cancer patients in honour of my mom’s fight to be cancer free. Mindfulness practice, yoga, and aimless strolls in the park are all part of my routine now to feed my softer side. For the rough and tumble side I have added hockey and HIT training. I certainly feel MUCH better.
Re-branding requires changes to my blogging though, right? In short – No. I see no reason to discontinue being open and honest as is in my nature to be. Instead it makes more sense for me to share my observations with readers and what I want to see change.
There are a few pet peeves I have with people, as we all do, which I have written about before in the post Why Don’t You Just…Be Like Everyone Else. But is seems there is a similar undercurrent to almost all of the negativity I encounter as an Autism advocate; people look to me to validate their own view of Autism, and in those cases I almost always disappoint them.
There is no one way to be Autistic, and the gamut of Autism is quite broad. Each Autistic person who is willing to share their experiences of being Autistic have something unique to offer. This is something we should accept as a way to broaden our view of humanity and NOT as way to alleviate shame. I know many people in the Autism community that do not agree with me on huge talking points like vaccines, empathy, and facilitated communication, and that is acceptable so long as we continue to dialogue without judgement.
When Autistic Advocates are wedged into the position of validating views and alleviating shame, we become sounding boards for the current acceptable norms, muffling our own voices. Telling me my experience of Autism is not valid when it disagrees with your own views is like telling the person you kicked how much they hurt. I know my own pain and I know my own joy, even if the current definition of the diagnosis says I can’t. You can like what I say, or not. You can even debate with me. But in the end we both must be willing to expand our own minds.
In Buddhism, one of the three universal truths is “everything changes.” We are creatures that continue to evolve and the only way to survive this is to be adaptable. In my opinion, the most beneficial form of adaptation comes from the collective willingness of communities to expand our understanding of the universe, which also means were going to be wrong. Often. If we allow ourselves to fall in an environment where the collective is there to help catch you, then we can let go of our fear of failure.
I see it like this – Autism is an ocean where on the surface are waves and beneath is a sea filled with life. Like the ocean, autism has a cycle of tides, and can become unnavigable when the sensory storms hit us. Sometimes outsiders can unintentionally get caught in our undertow, but with patience and time, we can provide so much to humanity. However, shame and the fear of failure are the toxins that destroy our climate, making the storms more intense and suffocating our life within. So what can you do? Instead of looking to Autistic Advocates to validate your views, look at us with a sense of wonder. Look at us as contributors to the over-all story of Autism.
I didn’t choose to be born Autistic anymore than I choose to be female, or have hazel eyes. These are just the pieces of my being that was handed to me by the complex yet beautiful odds of the universe. What I do get to choose is how I translate myself to the world through the tools I have worked tirelessly to acquire. Some people with Autism do not want to be advocates, and some Autistics want to be political game changers. Some of us want to write blogs and give words of inspiration, and some of us want to aggressively challenge the limitations of society. There is no wrong way to advocate so long as it has an overall benefit to the long-running narrative of Autism. In other words, Autistic lives now should benefit now from advocacy taking place now because that benefits Autistic lives of the future.
So now I return to making my videos that help bring a positive perspective to the world of Autism. I see beauty in Autism but that doesn’t mean I ignore the suffering. Autistic people suffer just like all humans suffer. Suffering is a part of life and I can recognize while still taking steps to living with joy, peace, and love. There will be times I write about Autism in ways that makes you angry and I am sorry for that, it is unintentional. Perhaps the next time you are angered by the words of an Autistic Advocate you can ask yourself, “What flaw in myself do I feel has been exposed by the actions or words of this person?” Often times I find my inability to see the big picture is caused by deep rooted feelings of inadequacy usually placed there by my absorption of societal judgment. So I tell myself I am not alone and then I look for a safe place to share my feelings.
Being a strong voice for Autism is something I have worked tireless at and it is a big piece of the person I have become. So let’s keep the dialogue open and continue to broaden our understanding of Autism.