“But I don’t blame anyone. I knew what might happen.
But how it hurts.”
There are some books that cut you in ways that never really heal.
I first read exerts to the Daniel Keyes novel Flowers for Algernon in an eighth grade literature textbook (I would later read the full novel in 10th grade Honors English).
I loved it because I loved everything in English classes, and I loved it because it was a story involving medicine and science, topics which have always fascinated me, and its application towards human development, which has also always fascinated me.
And I hated it because it the first real exposure that I had to regression, or at least the first one that made me understand it fully. Even if I had heard of things like dementia or brain damage before, I had never really felt the weight of the possibility of developing backwards until I felt it through Charlie’s eyes.
Which are startlingly much like my own eyes.
I’ve made some gains in my life in terms of speech, of social cognition, of processing speed, and of emotional control. I went from not being able to produce intelligible speech to being able to speak clearly, but not exceptionally well, to being able to speak eloquently and fluidly. I went from having meltdowns at every discomfort and disagreement to being able to cope with disappointment and discontent…at least somewhat. I went from only understanding what was explicitly printed or explained to being able to make extrapolations, inferences, and postulations I went from often missing sarcasm and jest to being able to make use of it myself. I went from over-gregarious and oversharing to being…well, I can’t quite say how others see me, but I know that I talk a bit less and only get weird looks about 5% of the time as opposed to about 45% of the time.
That these gains could be taken away from me felt cruel and unfair and absolutely horrifying.
Of course, I was never as far “back” in my development as was Charlie. I never had an intellectual disability–even at the worst of my communicative barriers, motor skill deficits, and emotional dysregulation, I was always at or above the academic performance of my grade level cohorts (often above). At any rate, my gains were not made by experimental intelligence-enhancing surgery; they were made with therapy and counseling and discipline and a fair amount of good-ol’-fashioned growing up.
Yet, I know how Charlie feels when he looks back on a him that isn’t really “him,” as though the Charlie of the past and the Charlie of the present are looking at each other through a window.
I sometimes get the feeling that the Paula of younger years, the Paula who would use the restroom in front of strangers, who sang sing karaoke at the flea market, who was in genuine danger of wandering into the streets, who never worried about sound loudness but who cried every time she had her hair brushed, who had to be force-fed and put on Pedasure sometimes, who loved all things pink and Barbie, is a different person from the vaguely-socially-conscious, dark-aesthetic, food-loving, somber and cynical and self-doubting person that I’ve become. Perhaps everyone feels this way about their younger selves–time changes people.
But I’ve even been told by others that I’m so much different-“-so much better” [their exact words]–than I used to be. My classmates and peers seem to find my presence more tolerable. My parents trust me with greater freedoms. People complain less often (at least to my face) about how “sensitive” and “weird” and “creepy” I am.
So one could see how slipping backwards from where I’ve gotten to would be undesirable, right?
But I have slipped backwards, and I’m slipping still.
“Now my mind is deteriorating rapidly. I won’t let it happen. I’ll fight it. I can’t help thinking of the boy in the restaurant, the blank expression, the silly smile, the people laughing at him. No–please–not that again…”
I self-injure more often now than probably ever. My sensory modulation is getting worse in both the hypo and hyper directions. I’m finding it more difficult to process external stimuli, to respond effectively to a request, to engage with the outside world. I’m making more everyday mistakes and missteps than usual. It’s harder for me to motivate myself to take care of everyday tasks and to interact with others. The voices of those I care about are physically painful to me at times. The people around me are getting increasingly worried about me. They’re walking on eggshells more often, and they”re losing that trust that they’ve built up in me.
I’m collapsing inwards, and I don’t know how to pull the brakes on it.
I’m trying to stay positive. I tell myself frequently that this is just one of those depressive-like slums that people in our early twenties are prone to, that I’m just a bit worn down by family stressors and the chaotic nature of being an autonomous creature being surrounded by other autonomous creatures, that I’ll feel better as soon as I start making enough money to pay my own bills and have my own place and start to feel in control of my own life, that this is just some temporary fatigue that’ll lift if I just keep pushing forward.
But there’s another possible explanation, one more specific to my neurology, and one that could make pushing forward a bit more difficult.
“In summary, Autistic Burnout is an accumulation of years of trying to appear normal and cope as an Neurotypical (NT). The strain and drain of it suddenly becomes too much and an autistic person (me in this case) falls apart. All autistic symptoms get worse. Trying to manage all the every day normal activities are way too much. It is overwhelming and stressful for the person involved.” – Kezza, Autism, Motherhood, and Advocacy
Here’s a much longer and very informative article on Autistic Burnout/regression/symptom worsening, originally from the Autistic Library Archives. Here is a very respected video on the matter by Amythest Schaber.
Things have been getting worse for years. Since at least sophomore year of high school–so, what, five years now?–I’ve been getting more upset, more sensitive, more forgetful, more “out-of-it,” and so much more easily worn.
Going away to college didn’t make it better. Getting involved in school organizations didn’t make it better. Changing dorm rooms didn’t make it better. Proving my parents wrong about being able to “make it” in college didn’t make it better. Dating a guy who treats me like an absolute princess and who loves me more than I thought that a human being could ever love another non-relative human being, although I am absolutely grateful for such, didn’t make it better.
In fact, it seems that I just keep falling apart more and at an increasingly rapid rate.
While I wouldn’t quite go so far as to say with absolute certainty that it is Autistic Burnout that I am going through as opposed to Twenties-itis or a Vitamin B12 imbalance or any of the millions of minor issues that can affect a person’s functioning, I have to admit that I can relate a hell of a lot to the concept. Or if not Autistic Burnout, then maybe burnout in general.
Point is, I am headed towards collapse. If I keep falling at this rate, I am either going to be institutionalized or a suicide statistic.
I am trying not to fall apart. I have a support group of loved ones that I can lean on for emotional support. I exercise daily (thanks to Pokémon Go), I have my chamomile tea, and I try to integrate thankfulness into my daily life. I am trying to push forward with school, with my hobbies and craft, with my interpersonal relationships. I am trying. I know that it may not always look that way when I scratch my arms up over Niantic not letting me on to the server or when I wear the same items of clothing for two days straight, but I promise you that I am trying.
Should I fail, know that you have done nothing wrong (or at least not any more wrong than a human being generally does to their fellow human being). Should I fall to pieces, blame it only on my own personal weakness (and here I’m not referring to being on the autism spectrum–some autistic people are so incredibly strong and power through even the worst of it all. I’m referring to an individual quality of fragility). I am trying, but I cannot promise that I will succeed.
Should I fall, please believe that I can get back up again. And please remind me of such.
“The only question now is: How much can I hang on to?”