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Thriving While Autistic – Creating A Quality Self Defined Life

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This piece was originally published by Spectrum Life Magazine. Nine years ago, at the ripe old age of thirty-six, I was diagnosed with autism. It was a gorgeous, sunny, spring afternoon in May when my life changed forever. I remember the weather in particular as it’s been an enthusiasm of mine since childhood. As I sat in the passenger seat of my mother’s Jeep digesting the news, I noted that it was an especially low-humidity day, sunny but not hot — an anomaly for the time of year in New York.

I looked over at my mother. She, too, was processing the report we had just heard. Tears brimming her eyes, she turned to me and asked, “Are you okay?” 

I thought about it. For most of my thirty-six years, I was NOT okay. In fact, I spent a good chunk of those years angry, sad, confused, resentful, lost, and very much wishing it would all go away. Suicidal ideations became the norm for me somewhere around eight years old. The planning, wishing, and hoping for the courage to do it, didn’t become the norm until my twenties. For three decades, I had failure after failure, followed by deep depressive episodes, only broken by panic attacks as my anxiety raged. Was I okay? 

“No, I’m not. And I haven’t been,” I answered, “but maybe now I will be?” 

I didn’t know it then, but that moment was the beginning of a new life for me. In that instant, for the first time in over thirty years, I was able to see that not only was there potential for my life to be different, but that it could, maybe, even be a life I could enjoy.

It was a year after that sunny day in May that I began work on building that possible life. It all started with an idea, a hopeful goal for the future. Armed with the new self-knowledge my diagnosis provided, I set out on this giant mission; to create a life that I didn’t need a vacation from. 

What I had come to realize in that first year, was that so much of what I pressured myself to achieve, didn’t come from me at all. In fact, I was pushing myself to burnout trying to attain other people’s wishes, wants, and dreams for me, instead of my own. I was using all my precious energy and time to pursue a life that I didn’t even really want, and then, continuously beating myself up inside for “my failures”. It needed to stop, and I needed to redefine my life. 

I began thinking about the big trigger words in my life — the ones that carried the baggage of other people’s expectations with them. Words like happiness, family, love, and yes, the dreaded word, success. 

What did it mean to me to be successful? What does it mean to have success? Is success the end goal of living? And when I broke down what that word meant to me, I realized that what I truly believed success to be was not the version of success I was chasing, and so epically failing to catch. 

I had been in pursuit of an endless list of “things” that would prove my success to the outside world. Chasing degrees, jobs, relationships, anything that would show the world I was “successful”, but no matter how many boxes I ticked, I was still consistently miserable.

It was time to redefine success in my own terms and put all of that same energy and time into pursuing this new self defined version of success. It was time to find that inner voice I had silenced for so long and ask myself what success really meant to me. 

It didn’t take long to see that what success meant to me was very different from the version of success that had been spoon-fed to me by a world fueled by sameness. Success to me wouldn’t look like the “right” job, house, or husband, but instead success to me would be to feel like I fit in my life instead of shoving myself into a life in order to belong. 

Success for me would be to live a life that is aligned with my values and to wake up most days happy about opening my eyes. Success to me cannot be quantified, tallied, or compared. It is a subjective journey to reach a personal goal. 

Success is not one thing to many people, but rather many things to many people. And with that understanding of myself, life suddenly went from being a competition with others, to being a uniquely individual challenge. It was obvious. How had I missed it for so long? Silly me! 

Of course, my success would never look like other people’s success, and it was time to stop wanting it to. And with that, it was time to chase the life that I wanted for myself; a life that I was happy to wake up in, a life that met MY expectations of a self defined successful life, a life I didn’t need a vacation from. 

When I found out I was autistic nine years ago, one of the first things that I began to think about were all of the things in my life I could have done differently. I wondered, how many of my bad choices, poor decisions, mistakes, and traumas were the result of being uninformed about my neurology. 

Like most of us who are diagnosed late-in-life, I spent my first year post-diagnosis cycling through my life and revisiting every one of those memories through the lens of autism, deciding about each one whether it was really my fault or if it was ‘the autism’. 

Needless to say, that first year was full of a lot of anger, and even more sadness.  I yelled and cried for little me, who had muddled through the world for over three decades feeling lost, alone, and broken. As I processed through that year, I realized just how unkind I have always been to myself. How for years, whether or not it was true, I blamed myself for every hardship I encountered, every failed relationship, and every job I left behind.

I had come to understand in those thirty-six years that my needs and wants were ‘wrong’ and that my natural instincts must be suppressed in favor of the ‘right’ behavior. Without any direct instruction, the world had taught me that anything coming from my authentic self was not to be trusted. And the worst part? I believed every bit of it.

Nine years later, and I can tell you that none of it was true except for how unkind I had been to myself. Since my diagnosis, I have carefully, slowly, and with intention, deconstructed my life, and rebuilt it with all my new self-knowledge as my guide. 

I have stripped away as many of the self-imposed challenges as possible, knowing they were built on the ‘shoulds’ of others. And then, I rebuilt. I layered in all that I know about myself because of autism and let that guide me to my goals. I spent hours upon hours reading personal development books, listening to podcasts, and watching TED talks on quality of life and how to achieve it. 

But I kept running into the same problem. No matter where I looked for personal development that suited me, none of it really seemed to fit naturally because it was all for neurotypicals by neurotypicals. 

Still, I knew I was onto something as select bits and pieces from each source were working on their own, despite no one single source being a fit. That’s when I had an autistic epiphany. 

Suddenly, I could see the patterns in all of the books, and that a lot of the same things were being said by all. It just wasn’t in a format that worked with my brain. So, I stumbled through everything, ditching what wasn’t working and fine-tuning what was. Each day I took one small step forward to creating the life of my dreams, a life I didn’t need a vacation from. 

It may have taken almost a decade, but I did it. I created a life so entirely opposite of where I started from, that it is wholly unrecognizable, and so am I. 

Gone are the long hours, working nights to avoid rush hour in New York City. Gone are the noisy highways and lines for EVERYTHING. Gone is the bleakness of winter and the humidity of summer. Gone, too, is the angry and sad woman who suffered through thirty-six years on this planet. 

Gone is the miserable lump of a human who communicated solely in sarcasm. Gone is the desire to be gone. In her place lives the real me, my authentic self. The one I spent so much energy masking to survive, now lives freely and openly in a life that the old me wouldn’t even dare to dream of. 

Each day that I wake in this life, I am grateful. Grateful to still be here, grateful to be autistic, and, most of all, grateful to be me. Every single moment of the blood, sweat, and tears it took to get here was worth it.

Knowing how life-changing this shift has been for me, I could not just keep it to myself. So, carefully, I began to translate the skills and lessons I learned out of my head onto paper. I thought I would create a guidebook of sorts from my journey for the many autistic people that would benefit from this kind of support now, and not when research catches up. 

I am proud to say that I designed a three-unit virtual course so you, too, can build an authentic life of your own. One that isn’t just about surviving but has you thriving in your autisticness instead. 

If you are ready to start your journey to being your Authentic Autistic Self and living your Best Autistic Life, all of the work that I did to build my magical autistic life is now available to you as a virtual course. “Self Defined Living: A Path to a Quality Autistic Life” is designed to help you create your own life that you don’t need a vacation from. 

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