News and Knowledge

My mom once told me a story about a doctor’s visit, a check-up that I had when I was a young child, in maybe 2001 or 2002. One thing you should know about me as a kid – I was deathly afraid of everyone and everything. I could not look at anything, nor could I interact with anything, if they were outside the comfort of my home or my immediate family. I would remain glued to my mother, my face buried in her chest at all times. I was also a very late talker – I only said maybe two or three words, up until about the age of three. As one can imagine, this doctor’s appointment proved a little difficult; during the physical examination, especially, there were many screams and tears of protest. Finally, when it was over, as the pediatrician was walking out of the room, my mom thanked her for her time.

I very quickly raised my head and said “bye-bye” before retreating back to my mother’s sweater

The doctor sighed and said that that’s what she had needed to see.

She then went on to tell my mom that before that exact moment, she was ready to have me assessed for autism. Based on my fear of eye contact, refusal to interact with others, and other things of the like, she was worried that it might be a possibility. But from that one single moment of me saying goodbye to her as she was walking out the door, she had completely changed her mind on the matter. I was suddenly just another child who was just painfully shy.

My “shyness” continued for the next year or so of my life. However, as soon as I was introduced to the world of the performing arts, I immediately burst out of my shell.

Music was a safe-haven for me. I very quickly began to pick up instruments left and right, while my perfect pitch – as well as my love and understanding for theory – started to bloom over the course of years and years of practice and indulgence. I dove into the world of musical theatre, landing my first role at the age of seven – one of the orphans in a regional theatre’s production of Oliver! – and I was immediately overtaken by the theatre bug. Dance classes helped me gain better control of my body, acting classes taught me how to interact with others and build my own sense of confidence, and improvisation workshops provided me with great on-the-spot conversation skills. It soon became clear that, by all accounts external, I was neurotypical – I learned how to dress and act the part perfectly.

But there were still areas where I struggled. In school, I was often the target of bullying due to my inherent “weirdness” (until I sort of won some social standing through my “talent” in theatre). My executive functioning was absolutely abysmal, and I was constantly late or completely missing out on assignments, all the way up through my first year or so of college. I was often called “oblivious”, however endearingly, by my peers, and while my social skills were polished and refined, they were totally inorganic – I was only using a manufactured toolkit that I had been given, as opposed to having an inherent, natural understanding at my disposal. I had horrible, dissociative meltdowns – which I was told were “panic attacks” triggered by “social anxiety” – whenever there was a sudden shattering of routine or expectations I had developed for something.

And the thing is, I knew that something was “wrong” with me – I was incredibly self-aware of it. I knew that my experiences in life were drastically different than those of the people around me. Why were others able to do things I struggled so much with so easily? Why couldn’t others wrap their head around music theory the same way I could, or fall into episodes of complete hyperfocus like I often did? Why was I so intrinsically different?

And then, this past July, I was diagnosed with Autism Spectrum Disorder for the very first time. I had just turned twenty-one.

I’ve spent the past few months doing a lot of thinking; thinking back on all of my various life experiences, both good and bad, and suddenly having a very concrete answer for all of the questions that were often left in their wakes. It’s through this retrospection that I’ve been left with one singular, consistent question…

Why?

Why did it take this long? Why had I been forced to stumble through a neurotypical life without anybody noticing that something was off? How had I fallen through the cracks through the most important, formative years of my life, the years where I very much could have benefitted from the support and assistance that I required?

As it turns out, I’m not entirely alone in this experience. There are countless other adults who have gone through this very same wringer of mis- or un-diagnosis, left sequestered and lost in their own sea of obstacles and unresolved issues. And through doing my own research, I’ve discovered some very significant causes, as well as some possible solutions that could be brought into reality. There are still many misconceptions surrounding ASD, including what kind of people can or can’t be diagnosed with it, and these misconceptions have affected me as well as countless others – and I hope that writing openly about my experiences, as well as some of the research that I’ve found on this subject, can shed some light on things.

Austin Kelly is an actor, singer, dancer, writer, and self-advocate from Los Angeles, California. He is currently finishing his senior year at Texas State University, pursuing a BFA in Musical Theatre, intending to graduate this coming spring. One fun fact about Austin: he can play six instruments (violin, guitar, bass, ukulele, mandolin, and banjo), and is currently learning his seventh (the accordion).