Growing up, so many signs of my autism were missed. I seemed normal, had great grades, and good social skills. I was fantastic at masking and had a very accommodating family for my “quirks”.
When I was 16, a few months after a big friend breakup (the tipping point), I lost a lot of my daily function. I started having explosive “episodes” OR complete brain absence from things like: listening to music, physical activity, smelling food being cooked in the morning. I had to leave the classroom for things like a teacher playing a video with music or if the cleaner smelled too strong. I felt sharp, painful, frequent adrenaline rushes from stimuli that fueled bone-deep fatigue. I was losing my abilities rapidly and I was very scared.
I stopped going to school and started seeing a therapist. I struggled with sensory issues from childhood but this was hellish, and now I was telling her that music hurt and smells made me feel empty inside and I was having these horrible “episodes”. I felt I sounded crazy when I talked about it. The closest she got to mentioning autism was telling me “if everyone’s got their toes in autism, you may be ankle deep”. While it put the idea in my mind, I was very far from getting proper support and I almost dropped out of school.
I had medical tests done - an MRI, EEG, ultrasound, bloodwork. The theories were partial seizures, brain tumor, and adrenal issues, though luckily I had a clean bill of health. But still no answers. My hair started falling out from the stress and I started to obsess over losing it.
I was put on lexapro 6 months in. I feared people chalked it up to anxiety despite me pleading that it wasn’t, but I also understood that medication was an experiment. I ended up being overmedicated and the fatigue got much worse.
3 months later, I was off the lexapro. And a lot of my symptoms kind of slipped away. After 9 months I got my life back, but it haunted me for years. What the hell happened? Is it going to happen again and take everything away from me?
Six years later, I suspected I could be autistic by the end of college. Then the concept of neurodivergence gave me a better understanding of myself. At 29, my current therapist has really educated me about autism, and I already suspected that 9 month period had a correlation to autism.
Unrelated to any of this, my therapist mentioned autistic burnout today, and I just googled it. I had no idea what it was. But I read it and I was so, SO taken aback at how simply and accurately it described the horrors I experienced: chronic exhaustion, loss of skills or reduced function, reduced tolerance to stimuli. There it was. This entire page describes it perfectly: https://embrace-autism.com/autistic-burnout/
The “seizures” were shutdowns. The “episodes” were meltdowns. The physical pain, the intensity, the nonsensical nature of my reaction to outside stimuli. I feel so much grief right now for how scared and hopeless I was. I can’t believe I finally know. I wish I could tell little me. I had diary entries for years about how haunted I was by the whole experience. If I knew what was going on, so much could have been different, but I’m glad I know now.