I am autistic…three words that I’m still trying to figure out what it means for me and admittedly difficult at times to say.
Growing up, I had many struggles and felt as if I wasn’t made “right” to exist in this world. I didn’t have any words or vocabulary to explain my constant discomfort and nothing ever made sense. Always frustrated, I internalized all my difficulties because I thought it was me who was the failure, I was just broken. As a kid, I hated having people notice and comment that I was just “different”, “weird”, “anti-social”, etc.. so I quickly learned how to “excel” on paper. Grownups didn’t ask too many questions if grades at school remained above average, or wonder why I didn’t have many friends and struggled to communicate. Instead of being “weird”, I was “self-sufficient”. The praise I was given was always about how “smart” I was, that I was so independent and never asked for help. I always believed that when I “grew up” it would get easier and eventually I’d actually figure it out. However when I graduated high school, I quickly discovered that was the farthest thing from the case. From age 17, everything that I thought would get easier continued to become more difficult and it reinforced my belief that I truly was broken and a mistake. The world bombarded my senses, there was no escape or life lines as I drowned beneath the unending waves.
I am autistic… now you may be a bit confused, the previous paragraph seemed to end unresolved. Well, you’re right, it kinda did. When I started writing this days ago, I had full intention of beginning with a brief history and talking more in depth about my diagnosis from there. Quick summary on that is, I learned that I am autisitc about six months ago and was diagnosed with combined Inattentive/Hyperactive ADHD almost a month ago. Both discoveries were amazing but completely overwhelming and ever since then I’ve been navigating life trying to figure out what has changed, and what hasn’t. Truthfully I began this piece talking about my history because I was unsure on how to put into words the impact being an autistic individual has on my life presently. It’s easy to look to the past and see all that could and should have been, and have the vocabulary to explain the behaviors and methods I developed to survive. However, how I got to this point left many scars both literally and figuratively and even knowing that I am an neurodivergent individual now, I still struggle to accept that what “has” happened, still does, it is my present, my future, and my past. I thought about deleting the first paragraph and starting from this point, but that would erase the journey that brought me here, in this exact moment (9:27pm 04/28/2021). Over these last few days while trying to “think” of how my existence is impacted and/or different due to being autistic, I was missing that I was simply experiencing it, and only getting frustrated that “words” weren’t happening on the blank page staring back at me…
Today I had a meltdown and to someone looking in at the moment it happened, it could easily be written off as an extreme overreaction and an inappropriate response for a 22 year old adult to have. Let me set the scene of the explosion… I was sitting in the living room on my computer as a family member walked in to let me know that they were leaving and would be back later. I acknowledged that I had heard and continued looking at things on my computer. Fifteen minutes goes by and the family member is still in the same spot now banging together dishes from the sink, opening the fridge and cabinets grabbing things and noise is starting to build, becoming distressing. Taking a deep breath, and as calmly as possible, I asked if they were leaving yet, and received a “yes”. Another three minutes goes by and they haven’t moved, now every one of my senses is in overdrive and the noise becomes incredibly painful. At five minutes I snapped, and told them with a raised voice I needed them to leave now, and they did.. At that point, it was too late and as I sat in the now silent living room, tears began to stream down my face and it became hard to breathe. There was so much coursing on the inside, it felt as if I was going to explode from the inside out. I attempted to slow down my breathing and got up to pace and stim, but there was nothing that could be done except for it to all come out. I went to my room and closed the door still attempting to “stay calm” but the pressure was too much, I hit the wall and bedroom door with my fists over and over and over again, throwing items to the ground, as I cried “Go away, Go away, GO AWAY!” and then… nothing. So.. why did that happen? Why did I lose control? For someone without context it seems pretty crazy or maybe even a bit scary to think about.
Being autistic, meltdowns will happen, and they do for all autistic individuals.. Are they fun? No. Can they be avoided? Technically also no, not completely, but each person’s experience is unique. They can happen for a variety of reasons and no “reason” is more important than the other. My brain is “wired” differently and that’s ok, but it also means that it perceives triggers in a way that those who are neurotypical don’t. Sometimes it’s wonderful, to be able to see the “little” things and experience joy and other times it is beyond distressing. It’s been a long time since I’ve had a meltdown and it’s interesting having the ability to now identify a meltdown from an anxiety/panic attack, or depressive episode. Was this meltdown due to the family member in the kitchen who didn’t leave when they said they would? On one hand, yes it was and there have been times when that is all there would have been to it. This time however, while I reacted to the “in the moment trigger” as the cause of the extreme distress, I started recognizing the signs of autistic burnout days ago. I’ve been unintentionally and intentionally masking my entire life, and even though I now know that what I am experiencing is not “wrong”, it is extremely difficult to simply take the mask off and it follows me in some way, shape, or form 24/7. I make little adjustments constantly and don’t ever truly consider the price they have, as I often make them alone. That first paragraph I wrote took three days. On day one, I spent over an hour trying to figure out why my screen hurt my eyes because it wasn’t too bright, it was just wrong. The success from that day was finding out how to keep the actual “paper” part white, while putting the rest of the screen on “dark” mode, I didn’t actually write anything down that day as after my success, I wrote and rewrote the first sentence over and over again before finally deciding I needed to stop and not continue to increase my frustration. On day two, I tried again but all the thoughts in my head were not translating into words that made sense when strung together as sentences. One thing I know about myself is that when I’m overwhelmed I’m often unable to verbally communicate a whole lot, and sometimes go completely non-verbal for periods of time. Text and written communication has always been what I could use when losing the ability to speak with my voice, and on day two, trying to not only write this piece but also when texting friends, I could not create the words. This was new, and a little scary so I decided to stop and try again the next day. On day three, I wrote the first paragraph in my head while driving on the freeway, listening to my music on a new speaker gifted to me by my brother. That was the day where I decided it would be easier to start with the past and go from there and when I got back home, easily typed the first paragraph. An additional three more days would go by where I didn’t open my laptop to this screen again until tonight.
During each of the additional three days, I thought about continuing this piece many times but was unable to do so. Each of these past three days has been full of ups and downs, good moments and bad, masking and making adjustments as every day that was before it has been. I had meals out on two different occasions and during one of them I wasn’t able to decide due to feeling overwhelmed by the amount of choices so the other individual chose for me and during the second time, I easily ordered for myself. Two different ranges of the same ability and at the end, I still enjoyed myself on both occasions. Both involved long verbal conversations and both times I was very much a “talker” and when returning home after experiencing comfort with the individuals I was with, I still didn’t have the ability to write, so my laptop remained closed. There were unexpected deadlines and changes that arose, some were truly massive by any standards and others, I suppose were not. The “little” and “big” things all added up though, until the breaking point at around 1:45 pm this afternoon. I imagine that a fair question would be “How did you go from days of being unable to write, overall mostly ‘functional’, then experiencing a huge meltdown this afternoon, to tonight?” Well to tell you the truth, I’m not entirely sure why I’m able to write this tonight after an experience that left my mind and body completely exhausted and drained, but I can tell you what I did after the meltdown. Immediately following the “nothing”, I just laid on my bed under my weighted blanket and was still. I’m unsure how long I laid there and also don’t really have a clear answer to why I did what I did next, it simply felt right and today I allowed myself to do so without passing judgement on myself like I had done all the previous times before. I went to the shower and turned it on, allowing my hands to feel the water dripping down first before completely stepping in. I didn’t think about anything except how the water was flowing and connecting me to the ground I was standing on. The recovery period afterwards took time and is still ongoing. I spent more time underneath my weighted blanket and still will later tonight, in the earlier evening I took a drive on the backroads of my neighborhood and listened to music, rehydrated myself and with many other things in between, eventually found myself here, ready and able to write. This experience as a whole will always be unique, and the length of recovery will likely differ the next time, it is also an example of a meltdown that belongs to me only. Even though there is a possibility other autistic/neurodivergent individuals would be able to draw parallels, not all will.
So now it’s time to focus on the where and how to move forward from here… as previously mentioned this entire piece is based on my own experiences alone, and therefore is a singular autistic/neurodivergent experience. So.. how can you support autistic individuals and celebrate neurodiversity?.. The answer is simple.. Listen to us. Do not drown out our voices but instead raise them up. Recognize that ableism is woven deeply within our society and be willing to admit wrongly held beliefs and grow from there. Personally, I didn’t really know anything about the neurodivergent community until getting diagnosed and discovered that I had harbored incorrect assumptions and ableist ideology that were not only harming me but everyone within the community as well. Follow autistic and neurodivergent creators and put in some time, even if small amounts, to educate yourself. It’s not easy, and sometimes the sheer amount of information can be extremely intimidating but this is the effort that is desperately needed. Understand that autistic children become autistic adults, and if you are a parent who is neurotypical to a neurodivergent child, seek out advice from neurodivergent adults and be willing to alter your definition of what “success” is. Be open to listening to the needs of neurodivergent individuals even if you don’t always understand, and work with us to create positive change.
I am autistic… and these words do not make me more or less. Neurodiversity exists within my entire being, and even though I did not have the vocabulary until recently, it has always been carefully stitched within my mind, body, and soul.