Nothing About This is Easy And Here is Why: Life Through the Eyes of a Woman on the Autism Spectrum https://www.amazon.com/dp/B08L5FDW8W/ref=cm_sw_r_u_apa_g5yVFbR7DB7BT
i am growling.
they can’t hear me, but they know,
surely they know.
they should know.
i am powerful,
they know not to approach me.
if they come too close, i will bite them.
i will bite them with my teeth.
why won’t they let me alone?
i am being still.
i will bite them if i have to.
i am sad.
i am scared.
i am powerful.
i can keep them away with my growling,
my silent growling.
they know i will bite.
i hope they don’t make me bite.
i hope they keep their distance.
i love them.
i hope i don’t have to bite.
i am so sad.
i am so lonely.
i am so afraid.
i am so small.
all i have is the silent growl….
and the teeth.
~ mari stein~
Corona virus has caught us with, for lack of a better word, culture shock. It is hard for all of us, no matter what age, race or nationality. We are all in this together.
When I got NSCLC three years ago I took it in stride. It is the lung cancer that strikes at seventy. I was seventy. OK. There was a course of action, unappetizing, but a course of action.
For me, in very real ways it is not about death (although, after chemo and radiation in my brain, my collarbone, and my vertebra) I am not in the mood to have a virus kill me. But still, it’s not about death. It’s about uncertainty. Nobody likes uncertainty. My Aspie brain is fried, I am going back to my old stand-by … not eating. By god I have Gatorade, though. It’s the Gatorade Zero, but it’s Gatorade. I also have my family and the meditation app Headspace.
Today, I am stuck together with toothpicks and spit, but we will get through it. As Aspies, who like order, this is very difficult for us. I am taking this much harder than I took the cancer diagnosis. The element of surprise coupled with the magnitude of the whole thing has me much closer to a shutdown than a meltdown. At my age, a lot of us are in the high-risk category, but there is not much that we can do. All of our classes have been cancelled as have yours, but do we still follow through with plans made a month ago? Personally, I don’t want to, but I’m not opting out right at this moment. All we can do (especially as Aspies) is what we have always done, take comfort in what soothes us and make art or study our favorite interests. It really doesn’t matter what your art or interest is is, just do it and enjoy it, that and Gatorade. Never underestimate Gatorade.
Suicide Is Not About A Temporary ProblemSuicide, by its very nature, is a lonely, solitary business. It seems Robin Williams’ suicide has struck a sharper chord in me than any of the accidental overdoses of other celebrities
“Suicide is a permanent solution to a temporary problem.” Celebrity doctors like Drew Pinsky are all over the airways making an effort to send the message that the depression is temporary, that there are better days ahead, but when you’re there, and I have been there, you know that those who counsel patience have not been in that black, bleak spiral of hopelessness. The popular statement, his message, however, is of value to people who are sad, who will have brighter days ahead,
Teens, with their rampant emotions and hormones, sometimes try on Emo and Goth personas. Those who have not really seen it, think it is deep, romantic, and glamorously tragic. It is none of those and it is not a good suit to try on.
Pema Chodron, America’s first and most respected Buddhist nun, teaches us not to “bite the hook”, to not to engage with and be ruled and hurt by our triggers. I understand it and I get it. I am pretty good at it, but she also teaches us to “sit with the pain”. I understand that. The lesson is when you sit with the pain, and you sit it out all the way through, you will come out the other side knowing that neither grief, nor pain, nor sadness will kill you.
I’ve never been able to do that. I mentioned it to my sister and she said she’s never been able to do that either. Those of us who are still alive and can’t “sit with the pain” drink or reach for the helpful tranquilizer to keep us from running into a wall.
I wonder because Robin had been treated for addiction so many times if he also was unable to “sit with the pain”.
The point of this essay is my belief that depression is more organic than emotional, and because of this, it can’t be treated only with logic or words.
My suicide risk is low because I don’t engage much with pain because I can’t afford to but those with both a biological predisposition and an inability to head the dark thoughts off at the pass, and have realized the excess of drink and drugs will kill them anyway are at a monumental risk.
The worst part about having Asperger’s Syndrome is being “Other”. I tell people that I have Asperger’s Syndrome because I feel more comfortable just being myself. I would rather tell people than worry about being odd. I don’t want people to regard me as peculiar. I don’t know any more accurate word that explains it more clearly than “Other”. We seem to be the only group where people are not embarrassed to say, “well everybody is on the Spectrum, really” or “don’t we all feel that way sometimes?”
The most difficult attitude for me to deal with is that people want to rediagnose us.
“I think you have OCD.” or “It’s ADHD.”
I think it is amazing that Psychiatrists and Psychologists spend all that time and money getting their degrees when clearly any Joe Smith on the street can diagnose OCD, ADHD, PTSD and Asperger’s Syndrome.
Autistic people are neurologically different. We process information differently than people without Asperger’s Syndrome. We refer to them as Neurotypicals because, think about it, if we refer to them as normal, where does that leave us? Nowhere good. You can be sure of that.
The simplest way to explain it is that we process information differently than Neurotypicals. Sensory overload is something that we need to be prepared for, or as prepared as possible for, situations that cause a melt-down or a shut-down.
Chaos is a good word to explain what we are dealing with before a meltdown. Its synonyms: disorder, disarray, disorganization, confusion, mayhem, bedlam, pandemonium, madness, and frenzy are words that help explain how we can become overloaded by things that would not phase a Neurotypical. The menu on a wall in an Order-at- the- counter eatery has too much information, too much space between letters, too much glaring light, and code. Everything is in code. I really don’t care that they choose not to list their sizes as small, medium and large: all I know is that within the first minute of trying to figure out how to order I am so panicked that all I want is to get the fuck out of there. The overload follows at lightning speed so that I cannot read the menu board at all. It’s all shine and blur and chaos. We learn very quickly not to tell the person you’re with what is going on unless they know you very well because they will try to help by letting you tell them what is going on. This never ends well, because what is going on is that my brain has short-circuited. All I want is to get out of there, but that’s not easy either because navigating a crowded space is hard for me, when I panic it is impossible. My words are either gone, which means that I will only stare at you. My words are gone. I don’t have them. They are gone.
If I am melting down I conjugate the verb fuck. “Get me the fuck out of this fucking place.” and it gets worse from there.
I have tried so many times to explain to people what it’s like, but I think it’s hard to understand without experience, and if they had experience, they would be Autistic too.
We are the only group that people feel comfortable stereotyping. We do not lack empathy, our social skills vary from person to person. We are not the hulking, brooding sociopaths that many people believe us to be.
Maybe you have to have Asperger’s Syndrome to hear what people say about us. Maybe your ear or sensitivities are not tuned to “hear” when Barbara Soloman tells the story, on her feet with a lumbering gait, about a student she was asked to tutor. “He was so smart, but he walked like this (dimwitted slow lumber) and I was afraid of him. I couldn’t have him as a student.” I really don’t care about your stupidity or your insensitivity Barbara, but what other group is it acceptable to dehumanize?
I have been in several Olli literature classes and often when there is an introvert or a character not easily understood a classmate will say “ He (she) is Autistic or has Aspergers. Mind you they never say that when the character is a genius, only when they’re a little creepy or odd. Several times I have interrupted and said, “ You don’t get to do that.” Clearly most people didn’t even hear the negative characterization. The only answer that I can think of is that it is acceptable to stereotype us, and what I say makes no impression at all. It makes me very angry.
We are not broken Neurotypicals. We are Autistics, with our own strengths and weaknesses. We don’t need fixing. We don’t want awareness, we want awareness and acceptance
A nice woman named Marissa Au was a hippy dippy kind of person, who also happened to have Asperger’s Syndrome. She tired of making up reasons and excuses for her differences, so one day she jumped out of the closet and confessed. Gone were the days of saying she was tired or busy; she simply said she didn’t want to leave the house. She became more comfortable navigating the long way around the classroom so that she wouldn’t come upon a classmate and not know if they would step aside, run directly into her, or just stand there forever.
When she left the house to walk the dog, she needed to figure a way to avoid seeing anybody. The dog, was a buffer, though, just in case. People could fuss over the dog; that would be okay.
Certain of her well meaning friends, had remarked,“You would never know you have Asperger’s Syndrome. It’s hard to believe you have it.”
Lissa always replied, “I hope you never see a melt down or a shut down. I work very hard to avoid it.” She understood that sensory overload and the panic that ensued was hard for people to understand.
Inevitably the discussion would get around to her friends listing stereotypes, such as poor social skills and a lack of empathy.
“Well, it’s a Spectrum disorder” She always said
“When you think about it, we’re really all on the Spectrum, aren’t we?” Joanna said.
“I have an idea. Would you like to see what it’s like?” Alissa asked.
“You can do that?”
“Yes, Joanna, but you have to mean it.”
“I mean it.”
“Close your eyes, I will put my hand on your shoulder. It will take about five minutes, then I will tell you to open your eyes,” Alissa said. “Open your eyes Joanna .How do you feel? Did it take?”
“I swear,” Joanna said, “there are more colors than before.”
“There are, your visual sense is heightened.”
“My clothes are scratchy”
“Heightened senses, but you will also feel how nicely a fine pencil glides on paper. Try it.”
“That is so nice! So really, it’s a gift. Damnit why did I buy scratchy clothes? What is that whirr, the tap tap tap, the pat pat pat?”
“The refrigerator, the kid down the street with the basketball, the dog walking on the bed. Walk on the carpet, you will hear every step. What is happening is your brain no longer can separate out the important sounds from background noise, so you hear it all. I would strongly advise that you avoid public restrooms … they are echo chambers with the added bonus of air hand dryers. Your heart will beat so fast, and you know you can’t leave the stall until all the other people are gone. They will know you are afraid, and you will get ‘that look’ ”
“Let’s go outside, Joanna, I can give you a sense of what it’s like out on the sidewalk.”
“No. Is there more upside? Why are these clothes so scratchy? What was that sound?”
“There is. Your memories will be movies that you can recall; virtually an eidetic memory, and you will probably be able to draw. Most of us can. Do you want to go outside?”
“No, we don’t want go outside and run into people and make smalltalk.”
“What is smalltalk?”
“You used to know Joanna … I looked it up. ‘It’s polite conversation about unimportant or uncontroversial matters, especially as engaged in on social occasions.’ ”
“What? How do you do that?”
“I don’t know, but it is an important social skill, and a big giveaway when we talk at the wrong time, or engage earnestly, then realize that we are not having the same conversation as they are. We call them neurotypicals, NT’s for short.”
“I don’t know how to make smalltalk.”
“You used to, Joanna.”
“The worst part is that we need literal conversation; we misunderstand what someone was trying to tell us or ask us to do, and then they get mad. They ask us to put something there. What the hell is ‘something’, and where is ‘there’ ? They talk in code, then get angry when we haven’t pleased them. If we carry in a casserole and ask them where to put it, invariably they respond ‘anywhere’. Where the hell is ‘anywhere’?
“I get it, Lissa. You make it look easy. It’s exhausting, observing and adapting second by second. All the things they do naturally, you have to work at.”
“I work at it constantly when I am in public. There is not a single moment other than when I am having a conversation with a good friend that I am not studying and working on my skills to pass for one of them.”
“I’m ready for you to change me back, Lissa.”
“I can’t. It’s okay, though, because ‘we’re all on the Spectrum really’, remember?”
Sometimes I feel so childish. I was going to pose a question on facebook (for emotional support) asking if it is ok to not include a person who is in a group with me when I do something outside the group, although many others in the group are included.
The reason I was going to pose this question is because I try very hard to like everybody. The big downside of this is that I feel worse with every encounter with people who clearly do not like me. I have dealt with this my entire life. The glittery fixed eyes, focused on me like I am something foreign that might rub off. That fake smile that makes me fear that her face will crack off, don’t get me wrong, after a year of trying, I don’t care if her face cracks off, I just am so tired of trying to like her that I really cannot stand it anymore.
I really should be immune to it by now, but it is Aspergers that she is seeing, and that obviously turns her stomach, to the point that her face freezes and her fake smile is grotesque. She must believe that I have Aspergers Syndrome AND am blind. I don’t know how to make that fake smile, nor do I want to know. The problem with this is that once I am done trying to be friends with someone, I am done. I don’t know how to pretend, so I imagine during the next encounter, I will freeze and look like I have been hit in the back of the head with a bat, or I will drop something ( which is what I did the last time).
I am 68 years old, and this ONE thing looks the same every time I see it. Last week I was shocked that I was over it, and it didn’t hurt me anymore… shocked for 5 minutes until that denial came and hurt more than it would have if I had admitted it to myself from the beginning. It’s THE LOOK that makes us know we are different. The look that makes us know we are imperfect. The look that makes us know we are unacceptable.
I don’t know if this is an acceptable blog post, but I am pretty sure that just like all the other feelings we have in common, I can’t be the only one who feels like this.
I will feel more comfortable now not including her in “The Club” now that I have faced my sadness in this blog post.
Many adult Aspies have blogs where we write about Aspergers from our Adult points of view. We write what we see and feel today. Very few of us write about what it was like to be a child without the voice to explain it through our own eyes back then. I believe that is because many of our childhood memories are colored by our misunderstanding of the people around us.
I was a very young child when I first viewed my parents with distrust. They put my 15 month old sister on the back of a horse and watched her fall off. They laughed while I melted down. At five, I realized they were irresponsible and not to be trusted. It seems my lifelong relationship with my parents was cemented in that single moment.
When I was about 7 my family’s Sunday visits to my dad’s parents stopped. Every Sunday we would go to their house and have dinner where everybody would talk real loud. After dinner grandpa would sit on his chair and my dad would sit on the end of the couch adjacent to grandpa. Grandma sat in her grandma chair, and mom, sis and I sat on the couch with dad.
“No, I believe that chickens are more trouble than they’re worth.”
“That’s because you are stupid.” Grandpa shouted at Dad, his only son.
“I’m not stupid, you will never get enough eggs to make them worthwhile.”
“Well, you’re stupid.” Grandpa sang the refrain.
This is one of the strongest memories I have of Sundays as a child. I must have been about seven when I asked my mom why Grandpa and Dad spent every Sunday screaming at each other. She didn’t answer me, but Sunday dinners at Grandma’s stopped.
Mom detested my grandparents, so this was a handy way to take Sundays back from my grandparents.
Dinner at home was never any better.
The family is at the table and my mother has put all the food on the table. We are sitting down and now it’s time to do what they do on tv.
“How was your day?” Mom asks Dad.
Dad always has an anecdote about one of the stupid sons of a bitches he works with, sometimes it’s a mad anecdote, but often it’s funny.
Mom asks sis and I in turn, and we are hoping it will all go ok; that there is nothing to rock the boat. It never really mattered. It was going to be something. Maybe we were having fried potatoes and Dad would mention that nobody could fry potatoes like his mom. This is where mom came in with her pointed but ineffective reply. Something like, “Go live at her house then.”
“Well, I’m allowed to say I like my mom’s potatoes.” Dad said.
At this point mom was crying; She was a very emotional woman when it came to any
disapproval from Dad.
I would invariably pop up with whatever positive affirmation that this situation required.
“You and Grandma both make good potatoes. Dad thinks you make good potatoes.”
Dinner was an experience that always seemed to escalate. First it would rock, and then it would shake, then it would boil, then it would churn, all the while I was trying to keep peace so this wouldn’t happen. Again.
Miss McHendry’s No Science 7th Grade Science Class
by Mari Stein
The worst teacher I ever had, indeed the worst teacher I ever saw, was Miss McHendry. She was 4 feet 9 inches of pure crazy. We all knew this not only from her reputation of jumping off her desk, but I knew it from those eyes. Her eyes glittered with unfounded excitement. The first day of class we wondered how long it would be until she jumped. I, for one, wanted that to be a myth. I hoped it was an untruth enjoyed and perpetuated by each class to titillate the next class. Everybody loves an “in” joke; Miss McHendry was the perfect foil,but she proved the myth to be true.
The first week of class she climbed on the chair and onto the desk. There she made some noise asserting that humans can’t fly, even if they flap their arms. So there she is, tight grey curls badly contained on her elderly head, crazy eyes looking directly at her captive audience, while trying to raise onto her toes. The thick heels of her heavy black oxfords made quite a task of it, but she didn’t let that stop her. She had been doing this bi monthly for more years than anyone could remember. She mustered enough lift to carry her off the desk, and as she landed on the floor she said, “Humans can’t fly.” The other thing she did that first week was give us our ONE and only assignment for the year. We were to collect fall leaves for class. They had to be ‘perfect’ leaves, not small, not large, not spotted, not curled. Only perfect leaves would qualify. I drove my mother crazy obsessing about my leaves not being perfect enough. This was for a GRADE.
Miss McHendry loved to teach standing on her desk. She was my homeroom teacher and one of two science teachers for the 7th grade. It was my misfortune to have her as a teacher instead of the real science teacher. I absolutely detest crazy for the sake of crazy, and that is exactly what we were dealing with. We had science books, we could have spent that 50 minutes each day studying science. Studying directly from the books. It would have required no effort on her part. She could have made up test questions directly from the review in each section. We could have had Science Class. Instead we had a woman instructing us on ‘men with value vs. men without value’.
“My father was a wonderful man,” she raised her eyes, her face glowed with a beatific smile. Then she launched into a tribute about her father’s military heroism. She was too old to be teaching, so I could never really understand when his military career took place, but it didn’t matter because from there she launched into a diatribe about men who didn’t serve in the military. I think this diatribe covered any and all wars. “Namby Pambies they are! Panty Waists I say. They are not worth my father’s pinkie finger!” As she said this she had her hands on her hips and minced around, back and forth on the desk.
As she got angrier over these ‘Nambie Pambies’, she adopted her Shirley Temple voice and a five year old child’s earnestness. She drew her elbow back then thrust her fist forward and upward in an awkward hooray kind of motion. It was as confusing as it was disturbing.
I for one hated it. I hated it every day. It’s not like we ever went to class and has a science class. We no longer had those expectations, but as a person who values order and routine, I detested never knowing what the day’s crazy was going to be.
Of course we all got B’s on our report cards. We kept asking when we should turn in our leaves. “Not yet” she would say, She never wanted them. She changed her mind.