From the Autistic WindowRead Now
June 30th, 2020, Ty Lynn Salis
As I write. Its just a little cold for me. Not to much smell though, so I am not being bombarded with eu de whatever. I am sore in my chair. No shoes, dear God please no foot prisons for me. Have to tell hubby to quit talking because I want to write. Do I need loud music to drown out the words so I can focus? I am going to yell and scream now. I want to be able to think about the words on the screen so I can help people understand this. Who and what do I experience as an autistic woman? And that is such a tricky determination that I just wonder about it.
I am an American Southern Woman. Definitely a woman physically. Many a time I have been told I am not lady like at all. I speak up and say things. Almost as if I don’t want to place my filter. It took me many years to use contractions and walk normally.
So, how did I get here? Well lets check the biographical information and see what we have. I was born 7 weeks early and my mother had partial Placenta Previa the whole time. I also was working with intrauterine growth restriction. Because of the placenta previa, I could not grow as I should have. 2 pounds and 4 ounces. That’s the same size as a 26 week baby, and I was born at 33 weeks. I had constant apnea and needed little jolts all the time at first to remember to breathe. I still have sleep apnea. I never grew to catch up to my fellows. I am 5 feet tall (154 cm due to a fraction of an inch extra) and that’s all I’ll ever get. I was always a little behind. Particularly in motor control, sensory seeking behaviors (though not labelled as such in 1981) and socially. I had a brain scan in 1981 when I was 4 years old and it showed problems. Not structural, but in the patterns of transfer through it. I got an diagnosis of ADHD in 1981 because autism and Apergers were not available for children who could talk and learn back then. I was always an outcast in school, always a teacher favorite yet annoyance at the same time. Never could achieve anything that didn’t come instantaneously to me. And in later years, if I knew more than my teachers, I would correct them, in front of the class. At 42, I know that was not the smartest move, but bad facts and incorrect figures enraged me. I had obsessions through the years. Topics I studied to death, figuratively speaking. Figurative speaking is still a challenge when others use it, but I have learned how to use it, somewhat.
I had obsessions with GI Joe and transformers. I was obsessed with Rainbow Brite and Strawberry Shortcake. Then I discovered dinosaurs. Later on within dinosaurs, I discovered Human evolution and Geology. Those are two topics I still stroll back to regularly today. 35 years later. I wanted to be a Geologist from the age of 11. But mathematics is a huge weakness for me so it never happened.
I made it through most of college, though when I lost my way, I failed out. I have never got back on track to anything real. I probably never will. I do not like writing formal papers where I have to do footnotes, in line citations, etc. I hate stopping my train of thought to switch to another task of getting those notes etc.
For the next 20 years or so I went through a series of abusive relationships. As I am, I am very forgiving of peoples difficulties, but it lets people take advantage of me. I’ve been cheated on, infected with STIs while faithful, drugged, abused, raped multiple times, and almost murdered by strangulation. All this by people who claimed to love me. I always forgave the boundary violations because I couldn’t see where to have those boundaries. The old illusion that there shouldn’t be boundaries or secrets between a couple harmed me greatly. Everyone assumed I should know. Everyone assumed it was instinctive. I was 36 before I learned crossing my arms over my chest meant I was closed off. I did it to give my arms a place to be and sometimes to cover my hypertrophic chest.
I was 30 years old when I found out I had Asperger’s syndrome. That was still a diagnosis in 2008. It explained SO MUCH. My innocent nature, my sensory issues with food, so many things. It was a relief in a way. I could explain when people said I was too weird, too off, too much that I was me. I could explain why somethings were not the perfect vision of femininity while I had strove for that my whole life, yet failed.
I turned to the web for more information. I voraciously devoured blogs, videos, articles, and what books I could find on the diagnosis and its associations in psychology. I was obsessed for years.
I am going to have to lotion my lower legs and feet. The skin is starting to feel all not stretchy and not flexible.
Back to the tale now. I was obsessed with understanding the problems of how my mind worked. For awhile. Once I had a better understanding of ME, of how my mind processed everything, I came up with a fantastic description.
I do not think in audio. No inner monologue rules me. I see my mind like a 1940s aircraft hangar. There are tons of books shelves lined with books of memories, facts, trivia, and information. There is a large seating area for resting. I have a huge screen on one wall that has imagery and words that are what I am thinking. There is a stereo with music. In another section is a huge stack of servers and an access computer where I access all my thoughts and information. To describe this, I see myself at that server typing everything a fraction of a second before I type on the real computer so I can see sort of how its going to look on the paper. On the ceiling of this brain room, are RULES. All the rules for every social situation is posted in huge print across the ceiling. If someone says something political that I can not stand, I say or do “X” almost in a flow chart like pattern. But its written in a list with a list of lists and a cross reference list so I can extrapolate.
Social rules are SO confusing. I mean, how do you automatically know what to do in a situation? How do you know the proper response? You can not use a genuine response in 90% of situations because what’s real and what’s allowable are totally opposite. Social rules are social lies people use to manipulate each other. Its almost as of being normal in the social world is to be a liar. I hate lying. You have to keep track of it. I hate lying because it means you are not telling the facts. And add feelings into the mix and the whole world gets to the point where its time to implode or explode. I hate it. I avoid a lot of socializing with people outside the Autistic community. Most of my close friends are autistic or subclinical. Subclinical meaning they are autistic but their functionality in society is so efficient they can’t get a diagnosis because they don’t meet some ephemeral standard that means they are expected to function fully with no difference.
I prefer autistics. Honesty, real information, understanding of energy limits for social masks, total understanding of sensory limits, and the jokes are so good. Oh, did that surprise anyone? Autistics can be very funny, very sarcastic very allegorical, when they want to be. It can be off to others though so we generally don’t reveal it since it doesn’t fit the social lies and social standards artificially imposed by a society that does not allow for the real person to be exposed. We are literal as it gets a lot of the time when its serious. Try to say the grass is blue and I will argue to death its green because guess what, I looked and its green (or brown, or yellow depending on weather or season).
Am I bitter, perhaps a little. This world is not built for us. There is no help or support for us unless we are nonverbal or totally nonfunctional and when that happens, the autonomy is removed. Frequently, when the word Autism is applied, suddenly the outer world assumes you are always the one who is wrong in any situation. Your death means less when your murdered because you were “difficult to deal with” or because you refused to bow down and be someone else. Maybe its because certain textures or flavors, sounds or tastes grate on your nerves like cheese on a cheese grater until you explode or implode.
I do have sensory issues. A lot of them really. When I walk into a store, the smell sets my whole mode. I hate lavender. Stop using it world. Its cloying, really. I can not eat jello, oranges, or pineapples. When my teeth come down, it just makes me want to gag. But I love the juices or drinks made from them. I can’t eat the fat from the outside of meat. If meat looks even a touch pink, its not going in my mouth, I’d rather starve to death. Bodily sensations totally disrupt me. Pain, its nothing (and I have chronic pain to a degree) but itch, and its all over. Or thirsty. Can not do thirsty for even a minute or two without having my functionality and focus out the window. I hate shoes and socks… I can’t stand them. I will wear sandals and flip flops until its below freezing to avoid containing my feet that way.
I have several of the medical and psychological issues common with people on the spectrum. I have the digestive issues. Food sensitivities that are a pain to work around. Every single medicine I take for any of the issues just makes the trouble worse for me. I just live with it. I avoid the foods that set me off if I can and otherwise I choose to suffer since the side effects are worse than the initial suffering.
An ordinary day includes being awakened too soon by my 5 year old autistic step son. Talk about rough since he jumps his full 56 pounds of weight onto me. But he still doesn’t understand and probably won’t for awhile. Now since we are meat eaters as well as veggie eaters, he is gnawing on my hand. My son contorts himself in different ways all day long. He is definitely a sensory seeker, not an avoider.
Is that skin on my ankles still doing that thing? Damn. Are they swelling? No? Then why? Aw jeeze.
We kind of ramble and hang out until breakfast. Then we do homeschool app for my son and I get on Facebook or play Sims 2 (My current obsession is building houses by theme there. Current theme is nice clean homes in pods due to environmental catastrophe). My husband heads off to work in the other room since during the pandemic he is working from home. I do not work so we don’t spend as much in child care as I make and its easier to go back to work as a woman after staying home than as a man. When he works, we head out to take him to work. Then lunch, any chores I can actually remember to do instead of having them bypass. Damned executive function failure. I know I need to do those dang chores. I want to do them. They just don’t get done sometimes. Then we have supper and continue the same things until bedtime, which turns into a super battle with the 5 year old.
Hubby has autism too. Poor man was diagnosed in the army and lost the career he really wanted. Currently he is a bank fraud investigator and a lay speaker in the church we attend. He and I seem almost perfect. We balance each other and understand when each other is having a challenge. He can socialize and understands the rules. He is very empathetic with others and understands why they do the things they do better than I do. I just don’t care anymore because they don’t care about others.
There are other issues others never really contemplate. Autistics and relationships, Autistics and sexuality, Autistics and Gender Identity, Autism and legal autonomy, Autistics and parenting. I could write whole multipage essays on these topics.
As a final exercise, I will identify me. I am a high functioning, female presenting, cis gender Autistic in a heteronormative monogamous relationship. Both my husband and I are pansexual and sapiosexual. We both live below the financial level we should have achieved but failed to, due to not having the needed supports in place as children and young adults. We share similar political leanings and ideology, though I am more moderate than he is. Our religious beliefs are not the same but fall into a similar category but that is not traditional in any sense for either of us. He is 10 years younger than me and I love him to the point I would kill to protect him or his son who will some day be my son legally. We don’t care if someone is Autistic, neurotypical; straight, gay, somewhere else; conservative, liberal; religious, spiritual, or not; Male, female, somewhere else; cis gender, transgender, no gender, all sorts of other places there. We don’t care as long as you don’t hate on me for my choice and don’t hate on others. Try to eliminate assumptions, ignorance, and hatefulness and we are good.
So this has been a walking window tour of my brain, life, and how things work for me. I hope this does provide some insight into my life, my autism, and me.
6/30/2020 03:27:53 pm
It is difficult to describe how getting a proper diagnosis or diagnoses can help make so much sense of things. It is like events and feelings swirling above and around my head started lining up and organizing in ways that made more sense. Not everything comes together but a wondrous it does. *deep, cleansing breathe*
6/30/2020 03:30:53 pm
*Not everything comes comes together but a wondrous amount of it does. <deep, cleansing breathe>
6/30/2020 03:48:41 pm
Hello M! I cannot agree more. I find that my own diagnosis for autism was such an incredible breath of fresh aid - if meant that I was different, but not bad or broken! And there were OTHER PEOPLE LIKE ME! Hallelujah! Pretty awesome. <3
6/30/2020 06:31:37 pm
Hi Lisa, thank you for sharing your story. I especially identified with the entire paragraph on how social rules are so confusing. I appreciate your hard work on being a champion of equity.
6/30/2020 08:29:26 pm
Hi Ruth! This particular piece is written by Ty Lynn Salis! I can relate to almost everything she said, but not my writing! I am hoping to publish stories from neurodivergent adults, women, and trans folk to share our stories.
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Hello friends! I would like to publish writings from myself and other people with autism as snapshots of how autism has affected them, since there are so many misconceptions and confusions about adults with autism.
Some background: I completed a 12 unit certificate program to be able to serve autistic students and am angry at how the program focused only on little boys as autistic and completely left out adults, the trans autistic population, and girls/ femmes/ women autistics. I am currently pursuing a PsyD to do more research on autism and gender.
Please contact me if you would like to add a story! If so, please send me your piece, publish name, title, and an image (can be a picture related to your content, your picture, an autism meme, etc).
I am interested in publishing this collection, because people don't know enough about us (but sure do assume a lot). Also on Facebook!
Lisa Macafee, autistic counselor with a hankering for social justice.