This post will contain a collection of short journal entries I wrote recently about what it was like emotionally to grow up with autism. These thoughts specifically dealt with bullying and (for me) the most confusing time of adolescence, which was middle school and the beginning of high school. By the last couple years of high school I had figured some things out and learned how to “pretend” to fit in a bit better, even though deep down I still felt like an oddball.
I hated always being the butt of the joke – even among friends. I was naive. I was gullible. I was trusting. Too many times I was set up for humiliation or embarrassment.
In an effort to avoid this embarrassment, I quit trusting anyone. I quit taking anyone at their word. I became suspicious. I struggled to identify sarcasm, so I started assuming ALL was sarcasm unless I knew someone well enough to tell the difference.
Due to this struggle with recognizing sarcasm, how many “mean” comments did I take to heart that were meant in jest? How many cruel words that cut me to the core, were never even meant to be cruel? When boys would say they liked me and I would take it as them mocking me and choose to ignore them or laugh at their “joke”, did I instead end up hurting their feelings in an effort to save my own?
Bullied for my weight during middle school, accused of having a lack of “feeling” or frustrating others who thought I didn’t care about anything because I suffered from selective mutism under stress, constantly feeling reminded that I wasn’t “feminine” enough – this was much of my teenage experience.
The common thread throughout was that I unknowingly made myself a target for abuse. The way I dressed. The way I talked. The way I acted. I was so desperate for acceptance and approval, but I reached for them in ways that were socially unacceptable to those around me and ended up only painting the bulls-eye larger on myself.
Some of you will probably find this post funny (honestly it is rather amusing), but if you happen to be autistic, OCD, or have a sensory processing disorder, you may relate to my very real struggles here lol.
So….I am at war with the crickets. Every single night they seem to congregate outside my bedroom window and conspire to drive me crazy and keep me from sleeping. Their constant noise is maddening and sometimes enraging.
I’ve tried several strategies to deal with the issue so far:
- Sometimes I just lay in bed and imagine stepping on them all and squishing the life out of them. Or I envision dog-size crickets that I blow apart with an assault rifle. Imagining their cricket heads exploding brings a momentary sense of satisfaction from the annoyance.
- A few nights I have gone outside at around 2am (when I normally go to bed), and took a broom to try to sweep them all away from the area or sprayed bug spray all around the area. Unfortunately, one night it was raining and windy when I did the bug spray thing and most of it ended up blowing back in my face and I think I might have poisoned myself instead of them. I don’t know if any of my neighbors have seen any of these late-night confrontations, but if they have, I do wonder what they think…
- Yesterday we went to Home Depot and got some outside insect repellent pellets to put all along the yard on that side of the house. Not sure if that will work either, but it’s worth a try I suppose. The crickets were still around last night, so it definitely hasn’t worked yet.
- Before you suggest noise-cancelling headphones or ear plugs, please know that those things are sensory hell to me in themselves. I do not like the feeling of headphones and certainly couldn’t sleep with them in. Same with ear plugs.
And so, the war rages on…
As I mentioned last week, I started a series of ACEO art trading card artworks based on various kinds of symbols. I created a couple of these artworks based on Native American symbols, but somewhere along the way of creation, they kind of took a turn of their own and didn’t end up looking quite like the symbols I started with. I figured I would still share them though.
The first one was based on the Native American Hano Clown Kachina Mask image. This one did turn out closer to the original image than the other one:
The second image was based on the “Spirit of Evil” symbol, but turned out looking far more like a creepy ape lol:
Both of these new artworks have already found a home with a fellow art lover, but if you like my art, feel free to check out my art currently for sale on my Ebay store!
Recently I was reading a book about glamour magic. I read a lot of books about paganism and mystical spiritual paths, because even though I consider myself an agnostic, I also believe there are many, many things we don’t understand and I enjoy delving into the mysteries and deeper meanings found in spirituality and mythology.
Overall, the book was a bit of a letdown, it seemed fairly shallow in some ways, but I guess I should have guessed that since glamour magic itself is generally about surface level changes. However, there was one meditative exercise in the book that I did find meaningful. This part of the book emphasized the importance of figuring out what your great work will be.
As the book went on to explain, in order to get anywhere in life, you have to know what you are aiming for. You have to know what is most important to you in terms of achievement and meaning. You have to figure out where your energy, passion, and hard work should be directed. So, I meditated on this subject for a while and here are the three things I came up with that I currently would consider my own “great work” in this life:
- My writing/blog. Guess what? You guys are all a BIG part of my great work! I write because my soul cries out to share my experiences, feelings, hopes, and dreams. Having people who actually want to read about those things is truly a magical gift in itself!
- My art. I often feel insecure in my artistic abilities. I feel like there are so many artists out there that are far more talented and definitely better trained than myself, but I LOVE art and sometimes I genuinely love the stuff I make. My art may not be top of the line, but I do think many of my creations are unique artworks that only I could make.
- Advocating for others like me. This kind of ties into #1 and #2, since I often use my art and my writing to advocate for others who have autism, mental illness, or chronic pain/illness. People like me are often marginalized, ignored, looked down upon, and mistreated. I want to help stop that. I want to help the world to become a kinder, more empathetic place for those who struggle.
Now that I have shared my own great works in life, why don’t you spend a little time figuring out your own? You can pick just one, or you can have several like I did. Think deeply about it and question your purpose in life. If you would like to share what you come up with in the comments on this post, I would love to hear it!
This is going to be a bit of a rant. Yesterday I received a letter from the orthopedic doctor and pain management clinic I was seeing for my upper back/neck pain. That letter turned my mood sour quickly. It said that I had been non-compliant with physical therapy and the spinal injections they had ordered, so they were kicking me out of the practice.
Why did it tick me off? Because the way they expressed it is totally not what we had discussed in person. First of all, I was not “non-compliant” with physical therapy. I tried it for several weeks and it WORSENED the pain rather than helping. It also caused widespread fibromyalgia and chronic fatigue syndrome flares throughout my body. This wasn’t the first time I had tried physical therapy, so I had been worried from the start, but they had promised they would accommodate my conditions, which they didn’t actually seem to do.
When I called the physical therapy office to explain that it was worsening my back pain and my fibromyalgia/cfs symptoms, they seemed understanding at the time. I was also having issues driving myself to therapy because when my back pain flares up, I can barely turn my head because of the neck pain. I asked the physical therapy office if I should perhaps try again in the summer when my husband could drive me, but the lady said that if the sessions were causing me that many problems, trying it again in the summer didn’t make much sense.
As for the spinal shots, the main reason I was fearful about going through with them is because they would not offer any kind of sedation. You see, I had been told how important it is for spinal injections that you be absolutely still during the process or you could cause damage to the spine. As an autistic person with severe sensory issues and intense over-sensitivity to any kind of sensory input (including pain), this worried me. I also have severe anxiety and that can sometimes make me shake and tremble involuntarily.
I had researched the shots and noticed that many other places offer sedation. I even talked to a few other people who had undergone the shots and had been sedated. I was not trying to be a pain or a drama queen, I was simply being cautious. Affording the shots was also a major issue at the time (since they required full payment up front), which I had explained to them.
In the end, I’m not upset that they were unable to further help me, I had already kind of figured that out. However, I am upset at the accusatory tone of the letter they sent me and the obvious insensitivity and lack of understanding for people who suffer from chronic pain/chronic illness and people who happen to have autism or other sensory processing difficulties. By the way, I will be sending them a letter back stating much of what I just said here. Hopefully they will learn something.
I figured I would do a short follow up post about my psychiatrist visit a couple days ago. It went ok I guess. Instead of switching me off the Prozac, he decided to try upping it one more time to see if that would do the trick, but promised me that if that didn’t make me feel better we would try something new next time. He did mention Wellbutrin as a possibility, which I have never taken. If anyone has experience with that drug, please let me know your thoughts on it!
The first few minutes of our visit, we talked about Netflix and the shows I have been binge watching recently (Black Mirror, Atypical, Stranger Things, American Horror Story). Then he asked how therapy was going, and I felt like at that time I needed to admit how bad my depression had gotten and that my therapist was actually worried about how low I was feeling.
My psychiatrist asked me why I didn’t bring that up immediately when our session started and he kind of jumped to the conclusion that I was trying to be “a good patient and not complain”, but I had to explain to him that his assumption was wrong. I wasn’t trying to make things easier for him, it is just simply hard for me to talk to anyone in person about how bad I really feel when at my lowest. It makes me feel vulnerable and exposed, and I hate that.
I know that last sentence may seem weird, considering the fact that I am so open and bluntly honest in my blog writing about how low and horrible I feel sometimes, but it is just easier for some reason to write that all out to a blank page and post it to the ether of the internet. Being in front of a living, breathing human, it is so much harder to peel the layers away and let my real self be seen.
I’m not in a good place right now. I wish I was, but I’m not. For the past couple months, I have been struggling off and on with what almost feels like a new low level of depression. Half the time I can’t stop crying, and half the time I feel almost absolutely nothing. I swing between numbness and despair, with a few almost decent days thrown in here and there. This may sound strange, but I am even too depressed to entertain suicidal thoughts. I just can’t think that far ahead right now or drum up the energy to make a decision like that.
There seems to be no rhyme or reason. For several days I may be weepy and lethargic, skipping meals without even meaning to, and only finding comfort from burrowing in a pile of heavy blankets or laying on our swing outside. Then out of the blue, I might have a decent day where I can get myself showered, dressed, and actually get a few chores done or do a little shopping…but the very next day, I’m likely to be right back huddled up on the bed or the couch.
I guess the only good news is that today is my appointment with my psychiatrist, and I am praying he takes me off the Prozac and can get me onto an antidepressant that will actually work again, because the current cocktail of medications doesn’t seem to be cutting it anymore.
Kind of a downer subject today, but it is something I feel like I need to say. Please note I am not in any immediate danger, nor am I planning to hurt myself in any way. This is simply a post about WHY I would likely commit suicide if I ever did. I am sharing this in the hope that others will come to care about these issues and learn to empathize with people like me.
If I were to ever commit suicide, there are two likely scenarios why, and both have a lot to do with our often selfish American culture/government and the view that many people have that everyone should just “fend for themselves”, regardless of their actual ability to do so. I honestly cannot see myself committing suicide simply because of depression, loneliness, bipolar, Asperger’s, fibromyalgia, chronic fatigue syndrome, or any of the myriad other struggles I face on a daily basis. I have survived those things for years and will likely continue to do so. However, if I did ever kill myself, here are the two likely culprits:
- Lack of medical care. This is a real possibility. In our country, basic healthcare is not guaranteed to everyone like it is in most of the developed world. Were I unable to afford treatment for my conditions (especially the depression, anxiety, fibromyalgia, chronic fatigue syndrome, and other chronic pain/illness conditions I have) I can see myself being simply unable to bear the pain for extended periods of time with no relief in sight. If you have never had a pain condition that unbearable you are extremely lucky, if you have had conditions like that, you likely understand how lack of treatment, and especially adequate pain relief, could drive you over the edge.
- An inability to provide for myself or take care of myself without any help. Due to the many conditions mentioned above (and the associated conditions I didn’t mention), it would be extremely hard for me to provide entirely for myself. If my husband were to die and I was unable to get help for basic survival, my greatest fear of becoming homeless and penniless might indeed come true. There is a great lack of resources for many of the conditions I have, especially for Asperger’s. High-functioning is a title I semi hate because it gives people the illusion we don’t really struggle as much as lower functioning autistics or that we should be able to “fit in” with the “real world” and be entirely self-sufficient. Many of us simply can’t. We try. We fail. We fail again. And again and again… We panic. We often have ptsd and enormous amounts of social anxiety. We feel like little kids trying to “play” at being an adult. We struggle with selective mutism. We have meltdowns. We are intellectually intelligent, but often severely lacking in common sense and street smarts. We suffer sensory issues that neurotypicals can’t even imagine dealing with. Combine all that with the bipolar, and is it any wonder that half the time I don’t know what the fuck I’m doing in this world?
*Art by Maranda Russell
Flirting makes me seriously uncomfortable. Why? Probably because I am autistic and can’t actually tell when most people are flirting, unless they say something blunt like “I want to do you” (which has happened to me, I guess I didn’t catch their subtler hints or something so they decided to just go for it…sadly, it didn’t work for them).
Anyhow, back to the subject of flirting, whenever a male stares at me for uncomfortable amounts of time or keeps flashing me smiles, I do wonder if they are flirting or if they are just being outgoing and friendly. I really don’t know the difference. It puts me in a rough spot, because as a happily married woman, if they are genuinely flirting, I don’t want to encourage their attention or make them think I’m interested in return, but I also don’t want to be rude or mean if they are just being friendly. I also don’t want to seem presumptuous by assuming someone is flirting with me if that is not their intention.
For me, this issue of being oblivious to what the opposite sex wants has been lifelong. Even before I was married, I never really thought anyone was interested in me unless someone told me they were. Even then, I often thought they were joking. Sometimes not taking it seriously or not recognizing flirting got me into some awkward situations, or made people think I was interested back simply because I was kind to them, which then meant I had to hurt their feelings and let them down, which I hated. I know this all may seem weird to non-autistic folks, but I wonder how many Aspies can relate to my experiences?
*Art by Maranda Russell