“Why Are You So Open About Being Autistic?”

Since being diagnosed with autism, I have chosen to take a path of radical self-acceptance. Considering the potential for pushback, this sometimes surprises people and prompts questions about why I am willing to share my story so candidly.
One of the last pictures I took with my dad before he passed away.
Losing my dad was a reminder of how short life can be and how misguided it is to live life as anything but your authentic self.

There are many unfavorable stereotypes about autism. Some are grounded in confusion about the separation of autism from co-occurring conditions. Some are based in ableist assumptions. Some are even based in an unfounded trust in groups that are supposed to promote autism acceptance, like Autism Speaks. Regardless of their origins, such stereotypes harm the autistic community and make it difficult for autistic people to share their life experiences openly.

I wasn’t diagnosed with autism until I was 22 years old. Because of some of the negative stereotypes about autism, people find it confusing that I would even want a diagnosis as an adult. They often believe that autism is a pediatric condition that only affects children (this is completely untrue, autistics are autistic their entire lives). Some people also believe that I am using autism as a useless label and that we’re all “a little bit autistic” anyway (also untrue, neurotypicals and autistics are different neurotypes).

For me, and many other late-diagnosed autistics, receiving an autism diagnosis is a life-changing event. We spend our entire lives up to that point not knowing why we are the way we are. We spend our childhoods with feelings of alienation and isolation, aware we don’t quite “fit in” but unsure as to why. Without a diagnosis, the reason why inevitably becomes us. When you see yourself in that way, feelings of inadequacy quickly accumulate, often leading to low self esteem, depression, and anxiety.

I remember from the time I was fairly young, I was described as “intense” or “difficult”. I was always “too much” or “not enough”, “too loud” or “too quiet”. Even though masking my autistic behaviors got me through the school day, I would come home exhausted and irritated, having spent all my energy on hiding my true self. I didn’t yet have the words to describe my experiences and sometimes didn’t even realize everyone else wasn’t experiencing the same things. I felt very alone.

But my behaviors weren’t that of an inflexible, obstinate child, but of an autistic child trying to navigate, on her own, a world that was not built for her. I was trying to manage a plethora of overwhelming, distressing, and uncomfortable situations. I had to try so hard to relate and communicate with my neurotypical friends and family, but, despite how hard I was trying, I was often seen as not trying hard enough.

Being diagnosed with autism gave me a new lens with which I could evaluate my life and myself. Suddenly, everything made sense. I didn’t feel so alone because I was able to read the accounts of other autistic people and relate to their experiences. It allowed me to start to let go of some of the negative beliefs I had about myself and provided me with a new, better understanding of my own life experience.

Being diagnosed with autism has given me the words I needed to explain my thoughts and actions. This has improved my relationships with family and friends because now they can understand me better, but it has also helped me to understand other people better. The way autistics and neurotypicals communicate is often quite different, so by being aware of these differences, naturally, the communication improves.

Beyond the benefits to me, being open about autism also helps other autistic people. Not everyone has a positive experience with being diagnosed, largely as a result of the abundance of negativity surrounding autism. By telling my story, I am hopeful I can change the mindsets of the people who read it and provide other autistic people with the option to do what I have done: choose radical acceptance.

And that, to me, is certainly a worthy reason for candor in sharing my autistic experience.

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