Footsteps of an Aspie: Write this Way....

Footsteps of an Aspie: Write this Way....: My life has changed thanks to GOOGLE. Why? As an Aspie, I isolate myself. There are many things I have managed at the age of 43 to still...

Write this Way....

My life has changed thanks to GOOGLE. Why? As an Aspie, I isolate myself. There are many things I have managed at the age of 43 to still not understand and trust me, some of these are things you don't just go up and ask a person, without risking them looking at you like you just arrived on the planet. For example, I never understood the term "clockwise". Does it mean a clock is smart? WTH, right? Try working out and the instructor yells out, "Now do it clockwise". Oh GOOGLE....just type in...WHAT DOES CLOCKWISE MEAN and voila! Everyday I use GOOGLE at least three or four times to understand something I am too embarrassed to ask. I posted a picture of my first diary. I was eight years old and received it as a Christmas present. Meltdown. I did not understand what I was supposed to do, hence the magic marker lines through what I had written. I didn't think I did it right and was very upset. I tried again and started to get upset again until my older brother Lance wrote it for me and showed me how to express myself. I have been writing ever since. Every day can be a struggle to remember basic things, to understand simple things. I have lists and notes. I have notebooks full of photography notes because I continue to forget basic aperture and shutter information. This is why I have never ventured into cooking as most recipes simply overwhelm me and if I buy a new board game, another person has to read the instructions and show me how to play.
What year is my car? Forget. What year did such and such happen? Forget. Who is your doctor? Forget. So I isolate myself because it's easier. Guess it's me and GOOGLE. I trust my family and I trust my boyfriend. Yes, he looks at me funny sometimes but he knows why and makes a joke out of it, although I often have to remind him my thinking is in black and white and there is no gray area. Gray area confuses me. How can there be gray? That doesn't make sense and I truly don't get it. Isn't the gray area just an area for people who make excuses in life? It's either this or that. Right? Yes, I've been told by a counselor I think too much. I am in my head and there's a whole lot going on, songs singing, books being written, patterns of sunlight and shadows being noticed, scents galore, tapping of fingers to numbers....and people wonder why I'm tired by the time 8 pm rolls around.
My father would sit with me at the dining room table for hours trying to explain word problems. Hours and hours. I remember not understand 75% of something. My dad took out four quarters and took away three. BINGO! My brain got it and I never forgot it. Hours and hours and that's all it took. He has always been great like that and I still call him to help me figure out percentages and such. I don't know what I will do without him. He writes on gas cans for me with mixtures for my other garden tools. He, well, he is my rock. He's my dad.
So now at 43, what would my diary entry be?

September 30, 2013
Dear Diary,
It's been a long time. A lot has happened since I last wrote in you. I have changed and grown and I am learning to love who I am more and more each day. My handwriting has improved immensely as well:) I write a lot now and because of you I understand how to express myself and it helps me. It helps me to think and to heal. I still look through you from time to time. I wrote in you until I was in high school. Thank you for being my friend when I needed someone to hear me. 

Always,
Robin

Windows Rolled Down...Life with Aspergers

Footsteps of an Aspie: RESISTANCE IS FUTILE

Footsteps of an Aspie: RESISTANCE IS FUTILE:   http://www.youtube.com/watch?v=zbnJo88kuP8  David Bowie "Changes"  Change is an inevitable part of life and Aspies disl...

RESISTANCE IS FUTILE

 

http://www.youtube.com/watch?v=zbnJo88kuP8 

David Bowie "Changes" 

Change is an inevitable part of life and Aspies dislike change.

Change is necessary to learn anything. Routine by definition does not involve change. Change requires breaking with routine. A marked fear of change and lack of flexibility are some of the other common characteristics of the patients of Asperger syndrome.

 A day in my life is nearly the same from day to day. My counselor asked me to tell him what my usual day is like. "Well," I began, "I wake up, feed the cats," then I just stared off. "To be honest it's pretty much the same everyday." I love the routine of it. I don't have many friends and I like it that way because they might come over, and that just irritates me. Seriously, my family has been to my home twice in six years and my best friend once. If there is a knock on my door I hide or peer out to see who it might be. But in my mind I'm thinking, "How dare they come over and interrupt me." My home is my sanctuary from the chaos of the world, and if someone drops by, even family, they throw a wrench in my routine. 

As a child my parents didn't understand my meltdowns over things such as a haircut or new clothes and it got worse when I became a teenager and was brought bra shopping. I didn't want to change. I didn't want to grow up, but what I wanted didn't matter. So, the new bra was stuffed into the back of my dresser drawer. There, if I didn't see it I could prevent change. They were exasperated by my reactions, but just didn't understand why. In college a boyfriend set up an entire day for me to be pampered. He bought me new clothes and a day at the spa to have my hair and makeup done. I sat in the chair at the spa and cried as they changed my hair for the evening we were supposed to have together. "I don't need to be changed," I said in tears. Of course they could not fathom why a makeover would upset any girl. 

If I receive a last minute call to go out I will almost always say no. I have to have advance notice so I can prepare myself. Yes, spontaneity is not a strong suit. But I have NEVER been late to any event.

If I have enough warning and allowed to mentally prepare then I can do anything I set my mind too. But quick changes in schedule or events or a simple change in a dinner causes me stress and anxiety. I become highly aggravated at what I see as a total inconsideration for my time and feelings. I have worked hard the last three years of my life to try to become more flexible. I planned two trips to Europe by myself. These trips forced me to focus and gave me much needed self confidence. I remember getting on the plane and saying to myself, "What the hell did you just do?" I was excited and terrified. Tears welled up in my eyes as the plane lifted into the air. I had just talked to my mother and suddenly felt very alone and surrounded by nothing but clouds. I ordered a Bloody Mary and talked myself into relaxing. It's a journey I told myself and just go with it. Nothing matters but the journey. I arrived in Washington airport and during my layover they changed my gate. I have always relied on following whoever I am traveling with. Now, I only had me. I heard the destination and went to check and yes, my gate was moved and they were loading the plane. This was great! I didn't mess up! Trust me that was huge! A change occurred and I was able to adjust and it worked. When I arrived in Prague I was instantly confused and disoriented. I hopped on a tram not having any idea where I was going and rode it for over an hour. I just did not know how to get my bearings straight and started to become very upset. What was I going to do? Call my dad? Yes, I have been known to call him when I am lost in various cities crying. "Dad, I'm lost." "Robin, calm down. Where are you?" One time he laughed when I called him from King Street in Charleston after driving in circles. I called him in New Hampshire from a pay phone hysterical. This time he said, "What would you like me to do? I am not there."
Imagine being like this and traveling to college. I arrived at The University of South Carolina and literally felt dropped from outer space into thousands of faceless, nameless people. I hibernated for a few weeks and only stayed to a certain path to classes etc. Even going to the cafeteria was to much and too noisy. I still have dreams that I forget what classes I'm taking and where to go. But in all this I learned strength and learned to trust myself. 
So, in Prague I decided it was ok to be lost and to take a deep breath and simply get to the hotel and nap and start over when I felt stronger. I got lost a lot but learned to love it. I would discover new things and places. Getting lost could be great! Change can be fascinating and I was able to make it into a game. What's down this alley? Take a left instead of a right. Come out of the hotel and go a different way. It didn't matter. So what if I got lost, there could be a treasure at the end of the road. Funny but I never looked at a map, they often overwhelm me. If I had I would have realized I didn't need to take the subway everyday but simply walk along the river to where I wanted to go. Oh, well! I finally discovered that Apsergers was alright and I just needed to make it work for me. So what if I didn't think or see things like others. I saw the World my way and it started to be fun:)When I'm able to process it my way I'm able to see the sign below and be ok.

LIGHTS, CAMERA...NO!

 

People with Asperger Syndrome often have to deal with extreme sensitivities to everyday sights, sounds, smells and touch. I have been told I should be a perfumer because I have such an acute sense of smell. As a result of being so sensitive to smells, I only wear a light oil on my body and not a perfume. I can smell exactly where a dead animal is in a ceiling and once had to point it out to a pest control employee because he could not find it. I pointed to the spot in the office and he returned with the rat. This was after two trips to the attic and swearing to me there was nothing dead up there. Seasons smell different to me and I become very creative in the Fall and Spring. Fall is a cleaner smell. It has a hollow smell and I hear for what seems like miles when there is no humidity. I also become depressed in the Fall and will write and draw more. 

I can't sleep if there is a smell in the house that I don't like lingering in the air. I feel like I am suffocating around a smoker and can not go to bars or restaurants that allow smoking. My employee has to wash the phone after she uses it simply because I can smell smoke on it. This is even if she has not had a cigarette in hours. I have gotten up and had to search the house to find a smell I don't like and get rid of it before being able to fall asleep. Smells I dislike include the cooking of lamb,  the leftover smell of sauteed onions and peppers,  the leftover smell of anything cooked that lingers. I dislike the smell of hard boiled eggs but love the smell of scrambled eggs. I either really like a smell or really dislike a smell. I smell so intensely that I once threw up simply seeing a McDonald's commercial because I could SMELL the hamburger and I wasn't feeling well. I also have some scents that I love! Scratch and Sniff books were great when I was a child but I hated the scent of scratch and sniff Orange Juice. That page needed to go. Hot Chocolate was scratched and sniffed until there was nothing left to scratch. I still love the smell of books, especially the smell of a book or a magazine that has just been printed. Yes, you will see me sniffing books. Some smell great, others not so much. As a child I would go through the grocery store and open all the laundry soaps and smell them. I still have to uncap bottles and smell them first. I place light oils under my nose or on my hands and face so I can smell them and relax throughout the day. Cal just bought me a shower gel called "Sleep" and I place it on my pillows and sheets. I have strong memories of smells and the smell of a person makes all the difference as to whether or not I will date them. You either smell right or wrong.

Hearing. Some Aspies seem to hear sounds others do not. I get irritable when people have a computer going, a television going and they are talking. It is simply too much and something has to be shut off or I have to leave. People in a car next to me with a sub woofer is like fingernails down a chalkboard. Every sound is amplified for me so much so that I have bought a pair of headphones like they wear at an airport. I hear frequencies like a radio playing with music and talking, yet there is nothing on at my home. I HEAR the music. I HEAR talking. I have looked all over my home to find where the radio sound is coming from and I can't. I can simply hear it. I can hear sounds from what seems to be miles away and somebody will say, "What is that noise?" I can always answer them with exactly what the noise is that they are hearing. But this ability to hear makes it hard for me to follow conversations or listen. It makes it hard to relax. Something as simple as the buzz of fluorescent lights or a dog panting can throw me off and make me irritable. I put myself into many time outs and currently work with a doctor on breathing and relaxation techniques. I have cried at my desk simply because of a sound. I do not go to concerts, video arcades and dislike loud restaurants or places with poor acoustics. A fair is not fun for me. The intense greasy smells, the loud arcade sounds and people screaming in the midst of bright, flashing lights. No, you'll find me with the animals or looking at artwork by locals. I did ride the bull once. Vegas? Ding, ding, ding, ding. Good for about an hour and then I go numb. I have sat outside of a restaurant with my girlfriend trying to enjoy a glass of wine and dinner and had to leave because the noise level just gets unbearable and I can not make out what she is saying. It exhausts me. "What? I can't hear you." What comes next is either me getting aggravated, upset or frustrated. And it's simply at a small outdoor cafe.
As a child I would simply tune it all out and sleep. I would sleep for hours and hours and I still love to sleep or just be in bed with my eyes closed. It is my quiet time. No noise. No television. No talking. Nothing. I decided against having children because I knew I would not being able to cope with whining and crying. I need too much solitary time. A person eating next to me makes me want to scream. Slurp, slurp, chew, chew, crunch, crunch. I had to stop dating a person because of the way he ate. It grossed me out so much that everything else about him grossed me out. Snoring is enough to make me leave a room and go sit in a closet. As a child I decked out my closet creating a cool room with a chair and toys so I could go there and escape the world and recover! That's why I like tree houses. Over the years I have learned to set a two-hour time limit on visiting with family because I know I will be exhausted after that period. The telephone ringing is an intrusion to me and I rarely will pick up unless I'm at my office. I get mad when my mobile phone rings. I decide when I am ready to talk to the person and will call back when I feel I have enough energy. I am much better at texting. I rarely have phone conversations and have heard about it for years because it bothers my family. I did not talk on the phone as a teenager and I don't now. Yes, I know that means we don't keep in touch, but thank God for texting and email and FACEBOOK. Oh FACEBOOK how I love you. 

Strangely enough, my parents thought I was deaf as a baby and would bang pots and pans together to see if I would move or wake up. I would lay in the carrier with kids running and screaming past me and never move. This is just the other side of the spectrum that I was showing as a baby and is hyposensitivity.

Touch. I am sensitive to touch. I can't stand clothes that have a tag that itches my neck especially and I will break out in a rash and actually get tender and sore where the tag rests. I cut the tags out of my shirts. I love soft blankets and LOVE that I get to wear scrubs to work everyday:) I don't mind being touched by people or give a hug or kiss, however I can only allow somebody to be in my space for so long. In a relationship I enjoy kissing and am passionate but when I start to settle down and want to go to sleep, I need quiet and my space. Cuddling is great for awhile but soon I am absorbing too much of the other person's energy and need to go my way to relax. Your foot touching me on the bed is simply TOO close. King-size beds are the way to go or some duct tape down the middle doesn't hurt either to give the subtle hint of stay on your side! Don't tickle me or touch my knees. Tickling is aggressive to me and my knees, well they are mine so leave them alone. Honestly, I have no idea why I don't want my knees touched. Just don't.

Visual problems are less common. However, I can search for an object and not notice that it is right in front of me. I joke and say it's my Apsie Angel moving stuff around on me to keep me on my toes. I keep all the lights off and one client found it rude. "What are you ready to leave?" "Am I holding you up?" "No," I replied. "I just don't like bright lights." 

 "You think better with the light on," my employee tried to convince me. No, I don't. I survive with the lights off. Thank You. Bright lights bother me and a trip to Walmart is not enjoyable. It's like being reborn and slapped on the ass all over again. Fun right? I can hear the lights and the store turns into one big bright blob of motion. I have been asked, "Are you a bat?" No. I just like to shower in the dark, put my makeup on in the dark (yes, I have to fix it in the light) go to sleep with total darkness etc. It's great for the electric bill though! I see license plates and will memorize certain ones and then get excited when I am in the same place as that person with the license plate and finally get to meet them. In my mind I am seeing the same license plate over and over and that means this person must have a message for me, something to share. One person became a client of mine and I told her I saw her license plate twice a day for over a year and now she is my client. No coincidences. I notice cloud patterns and shadows and sun patterns. I guess that makes me have a good eye for photography by being able to see light patterns and color and texture.

Proprioceptive and Vestibular disorders. I have a hard time orienting myself in my space. This can make me seem like a klutz. I have gone to sit down in my office chair and landed on the floor. Yes, something always seems off about my stance or posture and I can't get comfortable. When I was in school I could not get comfortable and my legs literally hurt if I couldn't put them up on the chair in front of me. I walk into walls and bruise easily. I drop things often. I exercise with a mirror and have learned to focus on where I am in my space and to focus on each muscle that I move. I HAVE to work out daily or I get irritable and feel like I am crawling out of my skin. I run for miles on my toes and can not get comfortable trying to run heel to toe. It creates a very strange looking runner's gait. I had a difficult time learning to tie my shoes as a child. I just didn't understand and tried over and over until finally breaking down in frustration and tears. I STILL remember how I felt when I finally accomplished tying my shoes. Sometimes I am smiling and people close to me ask me "Why are you smiling?" Often I don't know or something is just making me happy. It just seems out of place for the situation. I have been known to zone out in a grocery store and just stare off. If I'm waiting for you to pick out your tomato I just go to my relaxation zone place and hang out. A lot of times people think I am watching television with them. I'm not. I'm staring and creating something. 

Some Aspies like to be swaddled. As a child I would wake up at 6 am, make a mixture of cereal in a mixing bowl and literally roll myself into a blanket like a burrito to watch cartoons. I will flip and flop like a fish in bed trying to find a comfortable position, not just for my body, but my fingers and hair and the blanket can only touch certain places of my body and not be too high or too low. When I was a child I had to have my stuffed animals lined up on both sides of me the same way every night and had to listen to my carousel play "Love Makes the World Go Round." I still collect musical carousels. I still listen to them to relax.

Every day can be a challenge to simply get through without breaking down in some form. Shopping takes preparation and making sure I have the correct form of energy. Then I know I need the time after to decompress. Everything I do takes mental and physical preparation...visits with family, work, play, shopping, phone calls, eating...

How have I used these sensitivities to my advantage? Certain forms of music touch me to my core as do pictures or colors. I believe this has helped me as an artist to see and feel. We are great actresses since we watch closely how others behave and speak. We are great artists, photographers, scientists...I am lucky through all my struggles with Aspergers to have learned to see the Gift of Living on the Spectrum!

ASPIE DEFINITIONS

 I figured it might be helpful to create a list of simple definitions for readers new to the language of Aspergers.

 
Asperger’s Syndrome (AS): Asperger’s syndrome is an autism spectrum disorder characterized by deficits in social interaction together with behaviors, activities or interests that are repetitive or restricted. AS is generally differentiated from classical autism by the lack of a delay in language development. People diagnosed with Asperger’s Syndrome are autistic and I refer to myself as autistic, aspie or having Asperger’s interchangeably. Sometimes AS is referred to as Asperger’s disorder (AD) or high functioning autism (HFA).
Aspie: An aspie is a person with AS.
Autism Spectrum Disorders (ASD): This phrase describes the developmental disorders that make up the autism spectrum: autism, Asperger’s syndrome, pervasive developmental disorder not otherwise specified (PDD-NOS), Rett’s disorder   and childhood disintegrative disorder (CDD). When the DSM-V is released in May, Autism Spectrum Disorder will become the sole diagnosis for everyone on the spectrum.
Central Coherence: This refers to a person’s ability to extract meaning or see “the big picture” in an information processing task. People with weak central coherence tend to focus on the details at the expense of the big picture (think of an essay that is grammatically perfect but has poor organization). People with strong central coherence tend to see the overall meaning while sacrificing details (the essay is well organized but riddled with typos and grammar errors).
Executive Function: Executive function is a catch-all term that includes our higher cognitive functions such as planning, working memory, attention, problem solving, verbal reasoning, inhibition, mental flexibility, multi-tasking, and initiation and monitoring of physical actions. Impaired executive function is a characteristic of AS and one that many people continue to struggle with throughout adulthood.
Neurotypical (NT): Neurotypical is often used as shorthand for people who are not on the spectrum, though nonautistic people can be neuro-atypical as well. A more correct term for nonautistic people is allistic.
Perseverative:  This is a fancy word for repetitive. It’s used to described the repetitive actions, thoughts or speech of people with ASD. It can also refer to the tendency of people with Asperger’s to continue doing something the same way even though the task at hand has changed.  You may also see perseveration (noun form) or perseverate (verb form).
Stimming: Short for “self-stimulation” stimming refers to repetitive movements like rocking or hand waving. I shake my leg back and forth or do a dance step with my fingers that includes counting beats. stereotypic movement.