A Tragic Personal Narrative and A Love Letter
Content Warning: mention of suicide, self-harm, trauma, mental illness
I was diagnosed with several mental illnesses in the 2010s. When I felt like those diagnoses didn’t dig down into the root of my problems, I kept searching and searching. I even saw several specialists (endocrinologist, rheumatologist, pulmonologist, gynocologist, nephrologist, gastroenterologist, and a neurologist) over a year because it felt as if my entire body was failing. I had no idea that, other than one autoimmune disease that was uncovered, something I never could have imagined was the answer to why my mind and body were failing. Turned out the majority of my problems was severe stress. This kind of stress can literally be a killer.
Adult ADHD Diagnosis
I was diagnosed with ADHD at 35. A year later I was diagnosed with Autism. I discovered I am hyperlexic around the same time I got the Autism diagnosis. I can’t perfectly and accurately describe how I felt when I learned about my disabilities. What I am able to express is that I had a lightbulb moment; Being Autistic explained everything I experienced from birth up until the present day. The feelings were beyond complex. I felt relief. I felt like I learned the most profound thing in my entire life. And it really was. I thought I could learn about how to live my life again with a brand new and possibly fascinating, albeit perplexing, lens. Can you imagine feeling like you are born again, but as an adult, having no clue about how anything works? Like everything you thought you knew up to the rebirth is wiped out?
I didn’t expect crushing pain, though. Remorse. A sense of loss akin to the death of a loved one. The stress I suffered from being an Autistic in a cruel world was so suffocating, so profound, that my body was being destroyed. I was incredibly, deeply hurt.
Where had my life gone? I was in my late 30s, and I didn’t even know who I was. I masked my entire life, tried so hard to fit in with everyone else and attain the goals that Neurotypicals seemingly got relatively easily. The excruciating truth that was finally revealed to me was that the decades of pain, confusion, and thinking I was broken were things I may have been able to avoid. My gargantuan efforts to “make it” in this world never mattered. I would never have achieved what others did no matter how much I tried. I felt like my life was completely wasted and spent in daily torture.
How could I have even made it this far?
The suicide rate of adult Autistics is anywhere from six to nine times higher than the general public, depending on which research papers you read. And this is certainly not surprising to me. I could have been part of that statistic. I had been suicidal multiple times since 2002. I had engaged in several types of self-harm starting in my teens, especially during meltdowns. One late night in the summer of 2019 , my best friend took me to the psych ER. It was the lowest I had ever been. I spent 8 hours in there feeling like a prisoner, like someone who needed to be committed.
I only ever told these things to two people in my life. So this may come as a crushing shock to those who know me well and love me.
I apologize if this hurts you. But I think this is an important part of learning what it is like for many people like me. I want you to move from learning and acknowledging to accepting, appreciating, and embracing. I also want someone to bear witness to this experience so you understand where I was and where I am going.
I am still in the healing process. The trauma will never leave me; I can anticipate often tending to the wounds when they open back up (and they will, they always have). I can use my trauma to teach others, express gratitude for what and who I have in my life, and be a steadfast and unwavering supporter of and friend to others just like me.
I will segue from this tragic personal narrative to write something that I’ve been wanting to for a while but couldn’t because of my inability to see through constant grief. I am able to see through the grief now, to move from the tragedy, to use my experiences, learn and move forward little by little. What I’ve discovered on this journey was something so unexpectedly, delightfully pleasant and joyful.
I have met many fellow Autistics and other Neurodiverse people who have helped and supported me in ways I could never have thought possible. I thought I was too broken to help, to never meet anyone like me, SEE and LISTEN to me and commiserate. I never thought I’d meet people who saw me as deserving of all the wonderful things, despite the ugliness I endured for so long that it threatened to destroy anything left in me that was still good.
Fellow Autistics and/or ADHDers, and those who otherwise are part of the Neurodiverse community: This expression of love and appreciation is especially for you.
I want to preface what I’m going to continue to write with this: This is probably the most vulnerable I have ever been. This is genuine and raw, drawn from the deepest recesses of my Mind. This is actually my first real exercise in this type of expression. So I hope you are touched by the fact that I found such a difficult exercise worth doing because I would like you to know how you’ve helped me.
What you have done for me
You’ve helped me not only to accept myself, but to move towards appreciation and even self-love, which is something I never felt before. You listened when I had multiple meltdowns and could not turn to my husband. (Aside: My husband has been my rock, my champion. I don’t know what I would do without him. I love and appreciate him so very deeply). You guided me through my learning processes. You saw and embraced the real and authentic me when I couldn’t do that for myself. You made me truly feel like I was still worthy and capable even though I fell down so many times and struggled to stand back up.
You made me feel special about being someone who is so deeply and strongly emotional, a quality I always hated. It was a terrible burden. I felt like Atlas, but with an extremely large and heavy ball of emotions crushing my back. You reminded me that this is a unique and great quality that I could use to be of service to others, something I could use to drive towards the things I really want for myself and what I want to see in the World. You taught me it is OK, even beautiful, to love the qualities I use to dislike most in myself.
You tried to make me smile when I was in tears, when I was hyperventilating, when I wanted to run away again and again. You gave me virtual (firm!) hugs. You thought about me. You understood who I was. You stayed with me even though you know I am one to go radio silent or drop off the grid because I am forever trying to handle life in a world that doesn’t accept ALL of me, a world that wasn’t created for us. You know that I am with you, that when I do go silent for months I think of you.
You root for me when I attempt to find new ways to navigate the world, which is absolutely terrifying. I reach out for your help and support and you’ve NEVER failed to show up, even when you’re all going about your days and are caught up in your own issues, struggles, events, and the otherwise mundane life stuff.
An homage to my friends
Finally. You are the reason I am able to write this. You are the reason I am able to lessen the firm grip I had on my grief. I can now learn to search for the occasional small joys and victories, of which I would have continued to be ignorant, had it not been for your friendship. You have helped me turn my trauma and grief into something awesome, something I can perceive as a gift to my present and past selves. A gift to you, a gift to others who have yet to find their own paths and voices, and a posthumous gift to those of us who will never get to do that because they felt they had nothing left in them to keep fighting.
I could go on. I will never be able to express fully how much I appreciate you all. So this is what I’ve got so far, this homage to you, my dear friends. I hope to do the same for you as you have for me.
My name is Jo. My identities: Filipino-American, non-binary Autistic with ADHD and hyperlexia.
I’m a budding writer and Advocate.
I write mainly through the lens of someone who finally learned who I am at the age of 35. I write with deep introspection and vulnerability. I invite all to look at and reflect on what I choose to show of my unique, complex Inner World.
Would you like to add your voice to the conversation?
Join Umbrella Alliance and improve outcomes for NDs everywhere! With your support, we can create a world where everyone is accepted, valued, and given the opportunities they deserve.
Visit us on Facebook, Instagram, LinkedIn to stay up-to-date on our latest campaigns and initiatives.
Take the next step and join #ND23 today! Your support will help us continue our important work and bring us closer to creating a more inclusive world.
Every contribution, no matter how small, will help us in our mission to change the world for NDs. Together, we can create a brighter future for all.