I noticed a message in my facebook inbox. A person affiliated with a selective mutism awareness group asked me a question that should’ve been easy for me to answer.
She said, “What does it feel like to have aspergers?” I was surprised at how difficult it was for me to reply to her. After all, I’ve written a book on how it feels! So here’s this blog instead, an attempt to answer her.
I think it’s in the wording. Putting the word “feel” in a sentence isn’t quite fair. It’s not specific, really. I’m tempted to say to her: Tell me the difference between thoughts, ideas and feelings. Then define feelings some more, and I’ll get back to you how aspergers feels. Some days it’s like having cranked up vision. Have you ever seen columnal basalt? Have you ever really enjoyed looking at it? I REALLY enjoy seeing individual components of things, but alas, tis possible I miss the whole picture. Go ahead and Google columnal basalt and then come back to this blog, okay?
Now super-see everything! Go ahead! The weave of a blanket. The grain in wood. The place where the floor meets the walls. Now appreciate what you see on the ground. While out walking, let’s say, walking through a parking lot, I should have a sticker affixed to my back that reads: “Stops For Shiny Things” because that is what I do. I’ve boxes and boxes of treasures. Sea glass, rocks, trinkets. But for all the watching I do, I don’t seem to learn by studying people and following suit. For instance driving, I don’t do that. I also don’t ‘hang out’ with people, enjoy cook-outs with others, or go to hair salons. I decline 90% of invitations that I receive. I remember hearing an 18 year old say to me, “I am SO sick of taking the bus! I can’t wait to be independent and get my driver’s license!” That statement floored me.
I believe that every single individual’s idea of independence is different. For instance when I learned to take public transit in my forties, I remember the surge of independence I had. Sure, it’s not the same as driving oneself to one’s chosen destination, but I got to places on my own!
About cranked up hearing, touch, taste, and smell. Being a person with an aspergers diagnosis means friends are kept far enough away to be cherished. It means being closest to virtual people from a distance. It means that expressing oneself in a written way or through the art of painting pictures is more dependable than words.
Sometimes a person like me will get very good at blending. It becomes a past-time from early on to mingle with the herd. If you’re weaker; if you are different, if you stand apart from them, you will get picked off. This is true of folks with any difference, let alone aspergers. Remember Rudolph the Red-Nosed Reindeer? His parents wanted him to just be like the others but he couldn’t help it. He wasn’t. The old claymation Rudolph story has a line I’d like to share with you. You see, his parents have fitted him with a black cap to cover up his blinking red nose. The narrator says this:
“For the first year, the Donners did a pretty good job of hiding Rudolph’s non-conformity.”
It’s a soup of confusion, frustration, anger, occasional helplessness and despair, all mixed up with wonder, deep deep empathy, curiosity, intelligence and hope with a fair amount of naivete stirred into all of it. And all of that is tasted in one walk down the street or interaction with a bank teller, or trip to a store. Imagine having your father accidentally brush against your skin as he walks by and your startle reflex causes you to drop a dish. He yells, “I’m your father. Never hit you a day in your life! Jumping like that!” Now imagine holding down a job as a cashier and ten times a day you drop coins because someone’s fingers brushed your palm. Imagine avoiding stepping on anything bumpy because the lumpy sensation gives you shivers. You feel that pebble on the sole of your foot and it’s disturbing. Imagine a classroom setting. Your peers wiggle their hands in front of your face and say,
“Hello? Is anyone in there? Yoo-hoo? She’s in her own little world.”
Imagine meltdowns so severe they give you painful hiccoughing hyperventilation hitches that last an hour or more. Imagine banging your head on the wall. Incidentally days afterward a peaceful calm ensues!
Socializing can tire anyone, but I end up crashing my operating system afterwards. It’s dam hard work keeping up! When a person crashes, it is NO time to be adding new software. A person’s got to get rebooted first. When I do crash, usually a day or two following a long social period like a holiday, routine becomes very very important, safe and soothing so I can get back on track. Don’t even consider adding anything drastic like changing what toilet paper I use or surprising me with an activity I hadn’t planned on. The patience is an important part of decompression.
Have you seen the latest Superman movie? Remember when young Superman becomes overloaded in the classroom? He runs for a supply closet with his hands over his ears. That sums up autistic experience. But just a part of it. An integral but small chink of it.
So much of how I perceive and what I perceive is heightened and often extraordinarily beautiful too. When ”simple” interactions baffle, it can shatter the nerves, isolate the physical body but also soothe and feed the soul. Double-edged sword, right?
And yet, nearing the end of this blog, have I really answered her question? It feels like ME, to have aspergers. that’s how it feels. The way I have black hair, pale skin, the way that I am tall. I will not tell you the myriad ways I was bullied in school, the ways (over and over) I was taken advantage of, the sleepless nights I yearned for integration of me into my species. I’ve already written a book which touches ever so gently on those issues. But I’ll say this: If I had blonde hair, an olive complexion and was short in stature, I would still be me. ME isn’t a physical appearance and it isn’t a diagnosis. Why should I wish I was who am I not? I don’t mind who I am and I don’t wish anymore that aspergers would go away. I stay up and running most of the time, even if my processor and windows operating system seem to be outdated. It’s what I got.
Superman learned to deal with hyper and hypo senses, didn’t he? Rudolph, once he was exposed to his community in all his uniqueness, was very useful in the scheme of things. Everyone had to see his strengths instead of seeing a big glaring difference to ridicule. Which is why I have written Under The Banana Moon, which is why I try to answer people who ask what it feels like to have aspergers. Even now I do not believe I have answered that question. Read other blogs from people like me. Read their memoirs, view their artwork.
Google something for me when you finish reading this blog. Google what salt and pepper looks like when magnified a zillion times. Then choose to look at everyday ordinary things with a different mindset…and look at people too (isolated or distant and preoccupied with intellectual pursuits as they may be) and see them as extraordinary just like yourself; just like salt and pepper.
I don’t believe the puzzle piece is a terrific symbol for autism, per se, because it implies mysteriousness. A piece that doesn’t fit. Like feelings. They aren’t really mysterious to me, just lost in the translation of expression. Loving thy neighbor is a felt thing. It can be there, even if one does not see it expressed. It is not mysterious: to feel but not be able to express that feeling. It is mysterious TO ME how some people assume feelings do not exist because they do not see: smiles, laughter, touches, eye contact, gestures, voice inflection.
I’m a deep well hidden by a big slab of beautiful rock.
I assume these photos are in public domain and I post them respectfully. pls contact me if this is not the case. I will post a credit
5 thoughts on “She asked me, How does Aspergers feel? Read my book Under The Banana Moon or start by reading this blog”
Thank you, that was brilliant. I don’t have a diagnosis of Asperger’s, I have diagnosis of bipolar but I sometimes wonder if it’s entirely correct.
Sounds. I’m currently in the loft room listening to the sound of rain on the windows. I love the sound of rain on the windows, it reminds me that I am safe and warm. I came up here to avoid the other sounds – my husband tapping on his keyboard, the sound of eating. Those sounds drive me insane. I like quiet places very much.
I recently quit work but I had an interesting chat before I left with a bus driver. He said he loved people and he loved parties. I told him that I like people well enough but it takes me days to recover from any kind of social occasion, even work. He was shocked, he couldn’t understand that I find people tiring.
The weekend was never enough for me to recover. I need four days minimum to recover from people. Four days just to get my balance back. The strain of making sure I say the right thing at the right time is exhausting. Pretending to be genuinely interested in things which don’t interest me is also a strain. Chit chat is a drain. I know what to say, I made a deliberate effort at the age of 12 to learn what to say but I don’t get anything out of it. Well, I get to pass as normal. When I stop pretending the social consequences are dire but I do like people, I like them a lot – I just like them in small doses!
It’s common for Aspergers to be missed. More people than you’d think aren’t diagnosed until adulthood. Although Hans Aspergers studied it in 1944, (thus the name of it) it really didn’t become a standard diagnosis until the 90s. People like myself and you- just didn’t get the diagnosis; teachers and doctors weren’t exactly on the lookout for it. My diagnosis came in 1999 when I brought my then 16 year old son in for evaluation. We both had a series of three or four 3 hour visits with extensive testing and 20 hrs. of in-home observation. Both our diagnoses were the same. It’s pretty common for a lot of people, including myself, to “have” something that co-exists with the Aspergers. For me- dysthymia, anxiety, selective mutism.
If you suspect you’re one of us (people from another planet), then I say WELCOME.
When I was 7 or 8 years old a neighbour who was a child psychologist knocked on the door and told my mother she was concerned and believed I may have autism. A very brave thing to do. My mother was hugely offended and told her to go away.
I had to take my eldest daughter to various child psychologists and psychiatrists because of her “odd” behaviour which disturbed her teachers (and to be honest she was extremely hard work as a young child. She could not be soothed as a baby and screamed for 18 hours a day until she was three, she tantrummed for hours on end, she was obsessed with the feel of her clothes. Our lives consisted of avoiding screaming fits).
After much analysis they decided she was extremely bright ( a reading age of 18+ and comprehension age of 15+ at seven years of age). The psychologist actually looked alarmed at her bizarre speech. At 7 she spoke and interacted like an adult from the 19th century. It was hilarious, the psychologist deliberately used complex language so that my daughter would not understand what she was saying. When she finished she said “I’ve never seen anything like it, it’s like talking to an adult”. My daughter looked over and said, in the creepiest voice possible “Yes, curious, isn’t it?”
Nothing came of it, the NHS, in their infinite wisdom, decided that as she was a danger to herself or others they would do nothing more. She’s a teenager now and charming, if a little nerdy.
Sounds a whole lot like myself, my kids and many people I know who are on the spectrum.I’m glad we’re having this conversation. My son spoke in a British accent when he was little. I can relate, believe me!