Tuesday, December 5, 2023

The Pain of Not Knowing

"It hurts" I said, with my hand up. The teacher looked at me, huffed, and then said with the most blunt and stern words of, "No it doesn't."

It was 1989 and I was six. It was first grade music class, and I was still 14 years away from getting my autism spectrum diagnosis. The teacher was explaining bass and whatever bit of music we were listening to was turned up to maximum bass. Kidneys were shaking, and if we had fillings at that age, they would've been shaking out of our mouths. However, I was 14 years away from any understanding as to the events of this day, and the long-lasting impact it had on my life.

This month, December 2023, is the 20th anniversary of my diagnosis. I've been struggling with writer's block because I have such deep emotions about this. After this month, I'll have lived more of my life knowing I was on the spectrum than not knowing. With that said, how could I commemorate this milestone? This story of first grade music class kept flashing in my mind, and it needed to be told once again.

The impact of "No it doesn't" transcended that day. Of course, how many people knew what sensory issues were back then? Asperger's was still five years from getting put into the DSM, so how could I blame the teacher? I don't, but this doesn't mean the impact was negated. What impact? The impact of being unable to advocate for myself.

While the other kids were loving the feeling of the music, the beat were like knives in my arms and legs. My heartrate picked way up, and I didn't know what adrenaline felt like and I couldn't identify it, but my body was in full fight or flight mode. I spoke up, I said how I felt, and I was told I was wrong. Think about that for a long second or two. With my belief that those on the spectrum operate with the system of, "whatever happens first always has to happen", that makes it an extreme danger that, the next time I felt any distress at all, why would I speak up? Why would I risk stern words from a teacher or family member? 

This is why the need for understanding is so great. It was a different world back then. Autism was rare, and there was minimal knowledge that approximately 90% of those on the spectrum will have a sensory issue in one form or another. I can tell you, I became fearful after that day of any big speaker, and any potential event that would create a lot of noise that shook the room I was in. Did I actually feel what I felt? If so, how could I speak up about it? 

The fear of the noise often became worse than the noise itself as I lived life in anxiety all from the words, "No it doesn't." Had I not learned about being on the spectrum in 2003, I can't imagine where I'd be now just in terms of the sensory aspect of life. It was a great relief would I finally understood what happened on that day in first grade. I do wish the teacher had said something else, or asked what I meant by the pain I mentioned as I might've not grown afraid of my own feelings and if others would negate how I felt. 

I'm often asked by people whether or not it's worth even getting the diagnosis anymore. This story of what happened to me in first grade, and the relief I experienced when my reaction to bass was validated was such a weight off my existence. My feelings weren't imaginary, my traits weren't because I was defective, and after my diagnosis it took a long while to understand this but, I'm not normal, but this doesn't mean less. As I've yearned to be normal, I finally realized that normal sounds boring so yes, there may be events in my life like bass that give me grief, but there's also a wonderful world of traits that I wouldn't have without being on the spectrum, and it took man years to understand and accept it, but 20 years on after my diagnosis I am so thankful that I am, and thankful for the answers of knowing that yes, it did hurt, but it's okay, and I hope fewer and fewer people go through what I did back in 1989.