I Didn’t Know I Was Autistic Until Age 25, And It Was Terrifying

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“I have an inventory of vivid memories, interactions, and my responses. I have always had this vivid, sure-thing memory, especially when emotions are tied to my interactions. I have vivid childhood memories of adults. The adults close to me and others. Adults who would stare down at me, listen to my words, usually repeat them back to me, and then laugh at me. No response required, I guess? Just a laugh and a move on with their day.

Courtesy of Allison Vaccaro

I have things to say.

These are the things I tell myself, the things I tell parents, the things I tell my supervisors, and the things I tell my friends. These are the words all the skeptics definitely need to hear.

I’ve spent my life reassuring myself I am enough, I’m not too much, I’m not an afterthought, and I’m not ‘crazy.’

A little about me: I am a triplet, who grew up in the middle of nowhere and loved every inch of that wide open space. I am a partner, to an incredible neurodivergent, non-binary biracial babe. I am disabled with multiple chronic illnesses. I battle with my mental health on a daily basis. I am a long distance best friend to many. I am a patient. I am a provider.

Courtesy of Allison Vaccaro
Courtesy of Allison Vaccaro

In late March 2020, the question was posed by my new and first ever psychiatrist:

‘Has anyone ever talked to you about autism?’

This was the first time the word ‘autism’ was ever brought up to me.

My thoughts: ‘YESSSSSS OMG. YES ME. I HAVE, I HAVE. OMG, DID YOU JUST SAY WHAT I THOUGHT YOU DID??????? OMG OMG OMG OMG OMG OMG.’

My words: ‘Yes, I have. Can you tell me more why you think that?’

At age 25, I was finally have been given the relief of authenticity. I discovered I was autistic around December 2019. I kept this information to myself; I was terrified of sharing with my partner, my family, my friends, and most of all, my coworkers or patients or clients or students. I felt there was no way to be BOTH an autistic human and a speech language pathologist.

Well, I was wrong. But it isn’t easy.

Flashforward a year, December 2020. I am living openly and authentically in my personal life, work life, and of course, my internet life. I’ve muddled through the trials and the errors and the hurt and the wins. Being autistic means you may cycle through those experiences on a minute-to-minute basis.

Courtesy of Allison Vaccaro

Being an openly autistic adult means you never know when someone lies in wait to take advantage of you, scam you, or unknowingly belittle your existence. It means reminding the people around you that you are capable, you are intelligent, you have reasons for the things you do and the things you feel, and you have a voice. It’s also reminding yourself of these facts simultaneously.

Being an autistic adult is realizing you come from a long history of neurodivergent humans past who did speak up, who made waves in research, and ultimately, weren’t taken seriously. In all forms of ‘advancement’ and throughout history, there’s often a ‘weird crazy smart genius’ people accept only because of their accolades, while continuing to dismiss their voice and focus on the ‘neurotypical agenda.’ This is an unfortunate part my existence and the existence of my community.

Being an autistic adult is working in healthcare, working yourself to the bone, to the point of extreme burnout, without appreciation. It’s working in healthcare or education and debating when it’s safe to share your firsthand experience with others. It’s working in healthcare and listening to your supervisor look down on autistic people in every meeting. It’s speaking up to your colleagues and being dismissed.

Being an autistic adult is searching for safety and security. It’s teaching yourself to unlearn everything society has thrown at you for the past 25 years. It’s listening to people spew their ‘beliefs’ related to autism. It’s facing a world where people actively deny your validity, but claim to be the ‘expert on autism’ at the same time.

Being autistic is being perpetually misunderstood.

Finally, for me, being a queer, disabled, chronically-ill, autistic speech language pathologist means being an advocate. It means I will not stop talking until y’all listen.”

Courtesy of Allison Vaccaro

This story was submitted to Love What Matters by Allison Vaccaro. You can follow her journey on Instagram. Submit your own story here.

Read more about autism:

‘What happens to my girl when society realizes it’s not ‘cute’ anymore? How do I make people see the beauty I see?’: Mom to daughter with autism urges us to challenge our idea of beauty

‘I whipped around fast. ‘You leave him ALONE.’ He covered his ears, flapping his arms. The man snickered under his breath.’: 70-year-old woman thanks special needs mom for opening her eyes to autism, ‘You taught me patience and kindness’

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