If you would have asked me two years ago if I would get married, live independently, or run a non-profit organization I would have said it is not just improbable but impossible. I had a crippling fear of change, trying new things, loud noises, and becoming an adult in general. I was intelligent enough and had always excelled at learning academic material, but life outside of books and quiet places to read was terrifying.
I grew up under the impression that I was just a shy, overly sensitive, gifted kid who had some quirks and socially was a little awkward. It isn’t an unfamiliar story for girls on the spectrum who are diagnosed late after years of accepting that was just the way they were. Autism can present so differently from one person to the next it isn’t surprising many people are misdiagnosed or struggle their wholes lives knowing something isn’t quite right, but can’t figure out what it is. I’m no exception. It took me twenty-three years of wondering if I would ever fit in or be able to do “normal” things without constant anxiety, sensory overload, and overwhelming self-doubt before I found a chart on a website called help4aspergers.com that would change my life. It was coincidence I even found it as I wasn’t searching for myself. I was looking up information to help my brother whose son was diagnosed with Autism, and I happened to come across a chart with female Asperger traits that closely resembled those of males on the spectrum but are unique to just females. I quickly realized after reading the chart that I didn’t have one or two, but nearly every single one of the forty-five traits listed to some degree. It was my “aha” moment– the moment where everything leading up until that point suddenly makes absolute sense. It was as if all my struggles, my fears, and my hopes for the future where validated in an instant. However, that was only the beginning of my story.
My happiness to finally understand my own invisible struggle wasn’t always met with the same enthusiasm I felt, in fact, quite the opposite occurred. Family members began to assume that because I was able to “function” better than my nephew that I wasn’t being truthful, and I was looking for attention. People I met who had kids on the spectrum would tell me, “but you can talk and you are making eye contact so you can’t be Autistic.” Then there were the people who said, “but you don’t look Autistic.” It was shocking at first to hear that particularly because I was so elated to finally understand my own struggles, but it quickly became a reminder that there are people out there who don’t understand what Autism is and what it looks like (or rather what it doesn’t look like). It gave me a purpose and direction– to advocate for the understanding of the entire Autism spectrum but particularly for the parts of it that were easily forgotten. However, I felt like I was missing something.
I didn’t have a formal diagnosis and for a long time I felt like that would justify my being able to talk about and advocate awareness for myself and for others with Autism. If you want to teach you need a college degree, if you want to build buildings or vehicles then you need a license or certification. What set me above a Ph.D. in Behavioral Analysis with a specific focus on Autism? I was asking myself just that when a large Autism conference was to be held in Dallas near where I was living at the time. My wife, who I had been dating about six months at the time, was as interested to learn about what I was experiencing as I was which led us both to buying tickets and attending together. I had watched the movie about Temple Grandin when I first learned about Autism and found that I related with her story in different ways. I was pretty quickly captivated by her history and by her as a person. I wanted to be a role model for people with Autism the way that she is and to help those who were struggling to understand themselves in a world that is seemingly against them. She said a lot of things that resonated with me and in a way challenged me to overcome the issues that were still holding me back, but there was still that nagging question of if my own self-diagnosis was enough to make me a credible advocate. Who better to ask than Temple Grandin herself? The wait in line was excruciating. It was overcrowded, loud, and too hot, and by the time I got to the front of the line it was all I could do to just stim and try to focus on why I was even there to begin with. She finished her picture with the lady in front of me, and I as I handed her my book she asked what I did for a living. I imagine it was because up until that point everyone she had met was a teacher, therapist, college student who was in the field of Autism studies, or a parent to an Autistic child. When I told her I worked for a non-profit that didn’t have anything to do with Autism it seemed to peak her interest a bit more. I told her I was self-diagnosed with Autism, and I was trying to find out more about myself. The next bit of advice she gave me was worth more than the rest of the conference combined. She said not to get an official diagnosis. She said it would only be a label that would follow me through my life and flag me as being different. It was the answer I had been looking for and had come straight from one of the most beloved role models in the Autism community.
I think finding my diagnosis and realizing I was my own expert were just the first steps. Once I got myself out of my own way I was able to grow to be the person I am today. I stopped focusing on all the things that I couldn’t do and started focusing on all the things I could do and do better because I saw the world through a different and unique perspective. I began to learn and put coping strategies in place, to anticipate the triggers for my sensory overload, and learn the proper etiquette for situations which I was unfamiliar with. There will always be bad days when I know I am going to have a meltdown no matter how many different stims I do because of situations I encounter that I have not encountered before, but I also know that each day is a new day and provides new opportunities to learn and grow. Each day I wake up with that in mind, and I can look back now at all the things I have done that just two years ago I would have said were impossible. I have taken over my dad’s non-profit organization as the new Executive Director. I married my wife who loves all of me unconditionally and who supports me wholeheartedly but also challenges me every day to be the best person I can be regardless of my Autism. I finally moved out of my parent’s house and into our house together, and I recently started my own blog and website to share my experiences with others on the spectrum with the hope that by sharing what I have learned it will impact others who are also beginning their journey and looking for direction like I was not so long ago.