Out of the Shadows: Why I became an Autism Advocate

On March 8th, 2015 I did one of the most courageous things that I’ve ever done. That was the day that I stepped out of the shadows and told the world about my autism diagnosis. I had spent the better half of 2014 wrestling with the idea that I may be on the autism spectrum. I’m not exactly sure when my suspicions began, but at age 36 I was almost certain that I couldn’t be autistic but I was wrong.
For years I lived an unrealistic life a life that pushed me well beyond my human limitations. Growing up every struggle that I had socially or educationally was the result of my lack of strength or at least that’s what I believed. Even in the midst of obvious struggles I was often characterized as weak, weird or just plain wrong. So I became afraid.
Fear is a funny thing. It is not easily defined. Fear can present itself in different ways for different people. Fear is universal, but fear isn’t uniform. Fear is a motivator for change in fact fear demands change. Fear fuels change. The problem with fear is that the change that it produces is always false.
For many who are diagnosed with autism as an adult fear of rejection played a role in the subtle erosion of self at a very young age. This erosion eventually gives way to a fictionalized version of self that is created in order to survive in a world that does not understand or accept you for how you truly are.
The most troubling part of living this way is that it eventually eats away at your humanity. When we forget that we are human, we forget that we are human. When we dismiss our own humanity we create a breeding ground for all sorts of heinous acts against humanity. We teach ourselves and our children not to feel. When we subconsciously suggest that being yourself is not enough, we breed a culture that lacks humility, and a lack of humility always results in a lack of humanity.
Since being diagnosed with autism spectrum disorder I’ve learned a lot about myself, but even more importantly I have learned a lot about why I knew nothing about myself for so many years. Since being diagnosed I have been confronted with stereotypes about autism, stereotypes that I believe are the reason why so many other adults are currently undiagnosed and as a result remain in the shadows of our society as they silently struggle in solitude.
The real reason I didn’t think I was autistic is because I had very little education about what autism actually is. Autism has received a lot of attention in the last decade, however the harsh reality is that there are still millions of people who don’t know nearly enough about autism, what it is, and how it affects people.
I am convinced that when you lack the knowledge and language to explain your experience you run the risk of explaining away your experience. I spent years explaining away my experience, and with each excuse I gave for not being extroverted enough to meet society’s expectations I mortgaged away my own humanity. Eventually, you learn to stop being yourself and to stop being human.
The journey to my autism diagnosis as an adult began with exposure and education about what autism really is. It began with awareness, however the path back to humanity requires acceptance. Education about autism, what it is and how it really affects people is how I gained both the power and courage to stop explaining away my experience and instead start embracing who I am without fear of rejection.
Since my diagnosis in 2014, I have slowly learned to embrace my humanity. When I need to spend some time alone away from the sensory overloaded world that I encounter every day, I remind myself that I am not weak, I am human. When I misunderstand someone or have difficulty understanding what they are trying to communicate to me, I remind myself that I am not weird, I am human. When I get nervous and anxious about meeting new people or interacting and conversing with someone I don’t know, I remind myself that I am not broken, I am human.
Embracing my own humanity has given me the insight and intent to learn to more consistently embrace the humanity of others. Learning that I am autistic has liberated me from the prison of conformity and persuaded me to extend the same grace and love to others who are also human, who make mistakes, and who live with their own limits and yet are no weaker than I, they too are human. That is why I moved from awareness and acceptance to advocacy.
Understanding, accepting, and advocating for our many differences is what brings hope to humanity. Different does not equal deficient, limitations don’t equal liability, and boundaries don’t have to translate to burdens.
We are different but we are human and the more the autism community advocates and communicates this message into our culture, the greater our chances are of restoring our sense of humanity so that we can learn to co-exist with those who live on the other end of our racial, gender, political, economic and ethnic spectrum and see them as human and learn to live in the grace that is needed to treat them as such.
Being diagnosed with autism has actually taught me how to be more human, how to hurt, how to seek help, how to heal, how to hope, and more importantly how to hunt for the best in others who are also in desperate need of having their humanity recognized, respected, and celebrated with grace, love, and acceptance and that is a message that I believe can change the world for the better.