It was a sticky, hot summer day when I first heard the word Autistic used as a way of describing my quirks. For 24 years I had grown accustomed to my awkward people suit. Most people called me geeky, energetic, and cerebral, but also thought I was very kind. I misread my peers intentions, failed to keep up with social trends, and at times had a real hard time controlling my energetic presence that was more suited for stage performance. I certainly struggled socially but my fight was more so an inner one. The way I saw myself was fragmented and depressed, distorting my personality to somewhat puzzled onlookers which in turn added a layer of awkwardness to my social interactions.
When I finally received my official diagnosis of Autism Spectrum Disorder (specifically, Asperger’s Syndrome) a few years later, I was relieved to know what was happening, and moreover, the steps I needed to have the life I wanted. My friend world shifted post-diagnosis. Some friends felt more at ease and offered their loving support. Others felt uncomfortable and eventually disappeared from my life. It was a difficult process to endure, but in the end gave me a clear view of who I wanted on my long journey through Autism. But my inner fights were protected from deep shame and ridicule in some ways, because I knew who was talking about me and why they wanted to share my story.
An Autism diagnosis for me was like Fung Shui for my mind. It allowed me to place the fragmented pieces together, develop my inner worth, focus my energy on positive growth, and eventually release myself from burden of victim-hood. This process was one I was happy to share with families desperate to hear the story of a survivor, and how Autism became the strength in my story rather than the weakness. People would often take me to coffee, or even lunch, so they could talk about their journey with me. We would bounce back ideas, create plans for the future, and debate even the most controversial of subjects.
It was organic, but slow. Years would go by without much change at all, especially as organizations failed again and again to invite Autistic Self-Advocates to the conversations happening in boardrooms and classrooms. Taking the conversation from the coffee shop to the boardroom was about as possible as jogging to the moon and back. A decade of advocacy work could equal one byline in a thousand pages of policy and procedure. It was exhausting.
In the early 2000’s, I decided to embrace the still emerging social media culture. I created a Facebook page, a Twitter page, and joined Facebook. In 2009, I also created my first blog post with hopes I could extend the coffee shop discussions to a wider audience. Readership of my blog was counted in followers who were automatically emailed every time I composed a new post. Twitter followers would reach out to me in hopes of bringing my message to their communities, and Facebook friends would find joy in getting to build a more genuine relationship with me, no matter how far away they were.
Soon, I was accepting invitations to speak all around the US. I traveled to Florida, California, the Carolina’s, and Sedona, Arizona where an amazing community there lifted my perception of myself, and my message. Within a few short years, I was working a speaking circuit and was the subject of a documentary by John Schaffer called The Shadow Listener. My story was helping others and I couldn’t have been happier.
Then, something shifted.
I remember the first time I read negative comments on my Youtube videos. Crude comments from an anonymous user left me feeling dirty and used. Now I certainly had heard my fair share of nasty comments varying from the way I looked, to my actions. People could certainly be cruel, but each little cruelty had a face behind it. I could see who didn’t like me and I was equipped to handle the emotions that followed. I would learn from the situation and move on, skillfully removing cruel and dangerous people from my radius. But how was I to deal with this? How was I supposed to move on? What could I learn from this when I couldn’t identify the origin and therefore asses the danger? Was I unsafe?
Not one part of me was ready for living on the unfiltered street corners of social media because the tools I developed to keep me safe were forged in a world where everyone wore a people suit they couldn’t easily separate from. In our physical world, we can usually see dangers coming in time to develop a strategy to keep safe. If someone is cruel to us, we stay away from them. If we bump into a bully at a grocery market, we can walk away without saying a word. But how would one walk away in a digital world? Moreover, how would one see danger coming?
Social media grew so fast, I found myself overwhelmed with it. Negative rhetoric started infecting my posts in public, while my private inbox remained nearly empty. Invitations to coffee shops were replaced with invitations to like closed groups. Parents started soliciting mostly free advice from self-advocates, and even professionals with social media profiles. Advertising pushed webpages into their feeds that agreed with their suspicions rather than the research and science they needed to overcome fear. As larger groups bought their audience through palatable keywords, Self-Advocates were pushed to the bottom of google searches.
Where is your struggle?
The Shadow Listener, the documentary about me that I mentioned earlier, was an egalitarian project. The director, John Schaffer, wanted my voice to be heard and to remain true to me. He allowed me room to talk about myself in the light I felt was true to me; a light that was overall positive. My journey with Autism has been one of triumph, fueled by tenacity and the desire to belong. So John allowed me to focus on the positives, spending very little time on the struggles. I appreciated that he was willing to compromise his vision in order to make me feel the story was true to me. It certainly was a huge risk for him to take. A risk I wish would have paid off better for him.
Despite all of the excitement in the online community, when the documentary was released I was bombarded by silence. The movie was not truly screened and online viewership was minimal. As I poked around for feedback from a crowd that had all but disappeared, I found their disappointment was due to the documentary not showing enough of my struggle. They wanted more drama, more of a sob story.
Somehow I had been burdened with confirming other people’s perception of Autism. My story was supposed to be their story too. I was supposed to be filled with struggle, fear, and disappointment. I was supposed to be a victim.
My social media world was shifting. People weren’t just gathering into groups that agreed with their perceptions, they were actively silencing those who appeared to oppose them. Self-Advocates, like me, still brave enough to share our experiences were expected to somehow represent the entire spectrum of Autism, and eventually we were “too abled” for our experiences to matter at all.
I think I can safely speak on behalf of all self-advocates when I say we never intended to represent all of Autism. I certainly have no intention of speaking for anyone other than myself. My story is not here to make the caretakers and the parents of Autistic people feel better. I share my story to help you better see us as people with valid experiences and unique abilities. What I experience may give you insight, or it may not apply at all. But it’s not about how Autism makes you, the onlooker, feel. It is unfair to hijack my story in that way.
Rebrand the internet
For a while now I have felt I could only share the bits and pieces of my story that don’t rock the proverbial autism boat, overcome by the fear that sharing would cost me professionally. Whether that is true or not, I have allowed this fear to silence me, even avoiding invitations to publish in print media. I foolishly allowed the “woe-is-me” trend on social media to lead me to being the victim.
My real-world tools are useless in the digital world that is driven by popular opinion. I could delete all of my social media accounts and push for a return to the days when you had to invite me to coffee to talk with me. But going back never seems to deliver the intended results. It just reminds us we haven’t gone forward.
Instead, I want to rebrand the internet. I believe that technology is overall a good and positive thing. We just have to develop the right kinds of tools to keep it on track. Autism was the new brand I needed to go after the life I wanted. My diagnosis unlocked the tools necessary to be the best version of myself. Why can’t we do the same for social media?
I want #rebrandtheinternet to be a movement that uses technology to connect people in ways they can take action. We need to hold ourselves accountable for our own online actions, talking to each online profile as if we were in the room with them. Is a short menu of emoticons not an adequate representation of how you feel about a post? Comment instead with a respectful, egalitarian tone, or invite the person to coffee to talk out their problems.
As an Autistic Self-Advocate, I want to get to work helping where I can, but I also want my time to be valued and my individual story to be respected. My journey with Autism is difficult, but I want to put my attention onto the successes. I want to feed into the Universe the positive energy I want to get back. Did I struggle? Yes. Did I struggle the way you did? I have no idea, but do I need to share your struggles in order to influence your triumphs?
With your help, we can add value once again to the diversity of experience and the power of overcoming. How do you think we can #rebrandtheinternet?