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Living With Autism

April is Autism Awareness Month, so I thought I would break down and drop a truth bomb that I haven’t yet talked about much in this blog:  I myself am on the Autism spectrum.

There are many, many different types and degrees of Autism along the spectrum.  I have a very high-functioning level of Autism, also known as Asperger’s Syndrome. There is a diverging consensus among medical professionals in the Autism community over whether to label Asperger’s Syndrome as a distinctly different disorder than Autism or to lump it all under the same label and umbrella as Autism.  Looking back across my life, I can see that I’ve had Asperger’s ever since I was a kid, and it seems to be gradually getting worse as I age.  I actually suspected for many years as a young adult that I had Asperger’s, but I avoided and put off finding out for sure because I didn’t want to face the fact that I very likely had it.  And of course when I finally did give in and discovered that I did in fact have it, I wasn’t at all surprised.

Just as with regular Autism, there are varying levels of Asperger’s Syndrome as well.  I seem to have a pretty mild form of it.  I’m able to function well enough to live independently and hold down a professional job, but I have significant difficulties with speaking and processing social cues.  I often struggle with controlling the volume of my voice and the speed of my speech, controlling the words that come out of my mouth, and repeating myself over and over.  Sometimes when I go to speak, the words that come out of my mouth are completely wrong and don’t make any sense at all.  My speech is often disjointed due to having difficulty with taking the words in my mind and verbalizing them out loud.  Besides having verbal difficulties, I also have difficulties with expressing my thoughts appropriately, reading & correctly responding to verbal & non-verbal social cues, and I have A LOT of difficulty making eye contact with people when I am speaking to them.  I usually look at them below their eyes or not even in their general direction at all when talking with them.  People definitely notice that one and have mentioned it to me, some tactfully and some not.  I often have difficulty being able to tell when someone is joking or being facetious with me…it will literally go right over my head and leave my very confused.  What’s even weirder is that there are also times when I DO know that someone is joking with me, yet I STILL can’t get myself to express the appropriate response to it.  It’s as if my brain has a mind of its own and won’t do what I tell it to do.

I also have major sensory issues with certain textures and smells, loud sounds, and touch.  I HATE it when people touch me….especially when they touch me without my consent, but I also even sometimes have difficulty with shaking hands when meeting new people or being hugged by my loved ones.   Depending on the situation, my particular mood at that moment, and my level of stress or anxiety at that moment, my reaction to being touched can range from silent irritation to outright physical violence.  Unfortunately, I live in a culture where men still feel entitled to touch women they don’t  know and invade our personal space whenever they feel like it, so there have been times when I have suddenly and violently flipped out on men for touching me without my consent.  Women have been guilty of this, too, but it’s usually men who do this.  I also get VERY uncomfortable when people stand or sit too close to me.  Although I can usually hide my discomfort and react appropriately to these situations most of the time, it still causes me a great deal of inner anxiety and stress.  I remember one New Year’s Eve when I had been out all night celebrating with one of my friends at a very loud and crowded nightclub.  By 4 AM, I had had more than enough stimulation from all the lights, sounds, and people, and I hit sensory overload and wanted to go home and “de-frag my brain” as I call it.  But my friend was VERY drunk and belligerent and tried to stop me from going home because she wanted me to stay and keep partying with her until the next day.  So when she physically stopped me from gathering my belongings and going home, I suddenly snapped and had a full on Autistic meltdown like Dustin Hoffman’s character in “Rain Man” did at the airport and began screaming, hitting, and choking her until she relented and let me go home.  I felt bad about having done that to her and we didn’t speak to each other for about nine months after that, but eventually she realized that in her drunken stupidity she had put me under a tremendous amount of stress and anxiety that my Asperger brain just couldn’t handle.

I have another classic symptom of Asperger’s that kind of looks like OCD.  I’m not obsessed with cleaning, but I do have to have most of my things organized in a very specific way.  My CD case collection in my bookcase is alphabetized, and my DVD’s are arranged by genre (animation, documentary, comedy, etc.)  The shirts, dresses, and swimsuits in my closet and drawers are arranged by color.  When I carry money in my wallet, all of the bills have to be facing the same direction and are arranged from smallest to largest denomination.  And I truly feel sorry for anyone who ever rides with me in my car, because I often have a tendency to listen to the same song—or certain parts of a song—over and over and over.  I can literally listen to ONE song over and over repeatedly during an hour long car trip, and I very often do this.  Of course, I do make an effort to be courteous enough to control this quirk and not do it when there are other people in the car with me, but it’s hard sometimes.   I once observed a severely Autistic teenage boy doing this very same thing while sitting in a parked minivan.  He was non-verbal and he had a small tape player with him.  And every few minutes he would rewind and play the just the chorus line of “Living La Vida Loca” by Ricky Martin….over and over again.  It really alarmed me a bit to see this severely mentally disabled boy doing one of the very same quirks that I often do.

My Asperger’s symptoms somewhat vary from day to day.  Some days I am able to feel and act pretty close to “normal”, and there are some days when I am literally lost inside of my own head to the point where I am completely oblivious to anything going on around me in the physical world.  A week or two ago I was stressed out about something that had come up, and I was stewing about it so much that I was walking around at work in “autopilot” completely unaware of anyone or anything around me.  I was physically present, but mentally I was GONE….completely immersed in another world and other conversations within my own mind.  My co-workers quickly noticed and became alarmed, but they couldn’t seem to get me to “snap out of it” into the real world.  It wasn’t until the following day when I finally “returned” and was fully aware of my surroundings.  There was one day before that when I actually had a little fender-bender accident while driving my car because I was completely withdrawn inside of my mind and not fully aware of what I was doing.  I was driving the car on “autopilot”, but not paying much attention to anything.

The best way for me to describe what it’s like to have Asperger’s is that I often feel like I’m not in total control of my own body.  I know exactly how I WANT and SHOULD talk and behave in various situations, but I just can’t always seem to make myself do it.  I’ve noticed that it’s often easier for me to talk and act “normally” when I’m at work because I feel like I’m “play acting a role” when I talk on the phone or in person with clients and superiors.  But when I’m in casual situations with friends, family, acquaintances, and strangers, then my difficulties start to noticeably appear.  My particular case of Asperger’s is mild enough for me to function reasonably well, but still noticeable enough to appear slightly “off” to most people.

However, on the flip side, there are some positive aspects to being on the Autism spectrum.  People with Autism and Asperger’s are known to be extremely intelligent, even if their disorder is severe enough to prevent them from being able to display their intelligence.  A lot of people on the Autism spectrum are actually geniuses or “savants”.  The character of “Raymond”, the Autistic man in the movie “Rain Man”, was a savant.  Although he had a great deal of difficulty communicating with others, Raymond had a photographic memory.  He could memorize entire phone books, instantaneously count piles of matches dumped onto the floor, and memorize cards while playing poker.  I myself am also a savant.  My area of “genius” has always been music.  By the age of five or six, I taught myself how to play piano and I had a “photographic memory” when it came to hearing and playing music, meaning I could hear someone play a tune or a song and then I could play it back myself just from having heard it….very similar to what Mozart could do.  I used to listen to my aunt practice on the piano when she was a teenager, and the songs she played quickly became etched into my memory.  As a little kid, I would constantly hum them to myself without realizing it and I could play them back myself whenever I was tinkering around on the piano.

This ability grew stronger as I got older, and by age 12 I had what is called Perfect Pitch, which means I could hear any series of musical notes at any pitch or speed, “see” the notes inside of my head, and then immediately identify the letter pitches of each note…..A sharp, F flat, etc.  Interestingly, I never really knew how extraordinary this ability was until I entered college and completely blew my music professor’s mind away one day when he caught me doing this.  The man had a Ph.D. in music and had been studying music for longer than I had been alive, and yet he said he had never in his life ever witnessed someone being able to do what I could do.  Eventually my brain became so attuned to this ability that I could identify the pitch of not only musical notes but ANY sound at all.  If someone dropped a metal fork on the kitchen floor or if a glass object fell over and broke, I could immediately identify the musical pitch of the sound it made.  I still have that ability to this day.

In addition to music, my reading and linguistic abilities (despite my difficulties with verbal speech) have always measured off the charts.  It’s actually very common for people with Asperger’s to have very large vocabularies and a strong grasp on the language they speak.  During my years in public school, I consistently scored perfect or near perfect scores in the reading and language sections on the standardized tests we took each year.  Before the second half of my Second Grade year, I was already reading Fifth Grade level books.  Math, however, is NOT one of my strong suits, so it’s a damn good thing that I’m so skilled in the area of Language and Reading Comprehension, because that was what often saved my ass and allowed me to receive passing scores on college entrance exams.  Speaking of reading and language, people with Asperger’s are also often very talented writers, yet we often tend to talk in circles, be overly descriptive, and talk/write for too long.  So if you have ever noticed that many of my blog posts tend to be on the lengthy side, well that’s just another symptom of being an Aspie.

Another hallmark of having Asperger’s Syndrome is the tendency to have very eclectic and “weird” interests that often times border on the obsessive side.  Speaking for myself, my fascination with mermaids is a good example of this.  I also have a razor sharp knowledge and a fiery passionate interest in subject areas like reproductive justice and feminism.  I’m actually the Go-To person people come to when they need tips on how to engage in a debate with someone on the subjects of abortion and birth control because I’m well known in my circles for being an “expert” on this subject.  Other people with Asperger’s might be obsessed with subjects such as Medieval weapons of war and torture, Greek or Roman mythology, or electronics.  I’m sure all of us know or have heard of at least one person who is a little on the geeky side and completely obsessed with Star Wars or Dungeons and Dragons…..you know the stereotype I’m getting at.  Well those people almost certainly have Asperger’s.

My near lifelong obsession with the music of Sting, Phil Collins, and Peter Gabriel likely stems from having Asperger’s.  I started heavily listening to their music when I was 12 or 13 years old at an age when most kids have no interest at all in listening to “old people’s music”.  But despite my young age and knowing that it was “uncool”, I just loved these guys’ music and could not deny it.

Unusual sense of humor is another trait of Asperger’s.  Although I’m a 36 year old woman, I still have a great appreciation for toilet humor and fart jokes.  I love to watch obnoxious comedy shows like Beavis & Butthead, Ren & Stimpy, and The Three Stooges.  I can do funny impersonations and recite funny passages from movies and TV shows on a dime.  I find humor in weird, silly, or outdated jokes and sayings that “normal” people don’t.  And this is definitely one reason why people with Asperger’s usually appear as “weird” to other people who don’t have it, which can cause problems with social interactions and making friends.

A negative aspect of having having a developmental disorder like Asperger’s/Autism that I’ve been forced to struggle with for the last year and a half is the tendency to hold on too tightly to familiar objects, people, and memories and a strong need for stability, predictability, security, and familiarity.  When Grandma died and then our home was sold to people outside of the family, it was understandably hard for everyone in our family, but it completely DEVASTATED me.  Everyone else in my family has somehow seemed to accept this and move on from it, but I simply CANNOT.  I cannot accept life without my home anymore; I am still tightly clinging onto every memory and physical token I have from it.  My family doesn’t seem to understand why this is still upsetting me so much.  Well it’s because as someone with Asperger’s, I get more strongly attached to things and people than they do.  That house was my home, my sanctuary, the one place in the world where I felt safe and secure and loved.  It’s been a year and a half and I’m STILL grieving over the loss of Grandma and our home, and I’m sure I will continue to do so for the rest of my life.  Disruptive changes like death of a loved one or a sudden move to a new home create a lot of stress, anxiety, and chaos for someone with a developmental disorder like Autism, Asperger’s, or Down’s Syndrome.  We just don’t handle it as well as normal people do.

As I’ve grown older and more aware of my weird quirks associated with having Asperger’s, I’ve begun to really resent being afflicted with it and beat myself up over it.  I sometimes call myself “abormal”, “weird”, or a “freak” because I’m not completely normal like most other people and it seems to often hamper my ability to socialize and form lasting friendships and relationships with others.  But after talking with trained experts who work with developmentally disabled people everyday and joining support groups for people with Autism/Asperger’s and meeting others who have this same disorder, I’m starting think that maybe I’m not so bad after all.  Many of the fellow people I’ve met in these groups who have Asperger’s have a noticeably worse case of it than I do.  I look at them and think to myself, “Well compared to them I’m practically normal, so I can’t be THAT bad!”  After reflecting and talking with others about this, I’m starting to see that the problem doesn’t really lie with me….it’s other people who are the problem.

Although I’ve always had symptoms and quirks associated with Asperger’s and always will, I’ve recently realized other people–particularly people who are willfully stupid and just don’t know how to act right–aggravate my Asperger’s symptoms and make them seem to be more of a problem than they really are.  I likely wouldn’t have such visceral reactions to being touched if people would just respect my personal space and not stand right on top of me or touch me for no good reason.  And when complete strangers (again, usually men) walk up to me and just start jabbering my ear off without me having given them any sort of indication that I wanted them to come up and talk to me, then of course that’s going to make me act jittery and uncomfortable and anti-social.

I’ve had many experiences where I would meet new people, hang out with them and share some good times and laughs together (or so I thought), and then they suddenly refused to speak to me or see me ever again.  I always blamed myself for this and told myself that it was because I was weird and abnormal, but now I’m starting to see that it’s not entirely my fault, if at all.  It’s because our society and culture has devolved into a bunch of Narcissistic, self-centered, emotionally closed-off, insecure people.  As long as I make every effort to treat those I socialize with with kindness, respect, and courtesy, then I’ve done as much as anyone could ask for.  After I recently agreed to let a guy take me out on a date and then later invited him as a guest into my home only to have him suddenly and rudely tell me that we would not be speaking or seeing each other ever again because “we were on different pages and he had other more important things to do”, I started to beat myself up again and wonder to myself which one of my little Asperger’s quirks might have possibly irritated him so badly.  But after thinking rationally and objectively about it and talking with others about it, I was able to see that it really wasn’t my fault at all.  The guy merely expected to get laid in a hurry, and when that didn’t happen he didn’t waste any time dropping me like a hot potato.  And that’s just fine with me…..good riddance!!  I’ve also learned to step back and understand that my failures with maintaining good relations with other people I have become acquainted with since moving to Florida aren’t really due to my Asperger’s, it’s because many of these people are just simply messed up.  A lot of them have issues with drug abuse, they have their own internal psychological issues going on that prevent them from being able to interact with others in healthy ways, or they are just looking for people to take advantage of and quickly disappear when they realize I won’t be taken advantage of.  I have to keep repeating to myself what the others in my support circles have told me:  “Normal people don’t act like that.  As long as you treat people with kindness, respect, and common courtesy, then you have done your part.  They are the ones with the problem, not you.  You are more ‘normal’ than they are.”  And as hard as it may be to keep this in mind at all times, I can see that it is true.  I have many “normal” friends and former lovers who are well aware of my Asperger’s, and yet they don’t treat me with disrespect.  They accept me for who I am, weird quirks and all.  They don’t mind my disjointed speech, my lack of eye contact, or my weird sense of humor.  In fact, they LIKE it!  So if someone suddenly shuns me or disappears from my life because I had trouble vocalizing a sentence smoothly or because I didn’t make enough eye contact with them or because they didn’t like a goofy story I told, that’s THEIR problem, not mine.

At the risk of rambling on any further like a typical Aspie, that is all in a nutshell what it’s like to live with Asperger’s Syndrome.  I have a few physical and mental difficulties, yet I also possess many special qualities that are very cool and unique.  There is no cure and not really any treatment for Asperger’s, so the only thing I can do is learn to  manage it and live with it the best I can.  Surrounding myself with understanding, emotionally healthy, accepting people is key to this.  People like that make it a lot easier.  I’ve often thought of myself as “disabled” or “defective” because I have Asperger’s, but many trained people who work with those who have it tell me that people with certain levels of Autism and Asperger’s are actually more “normal” and evolved than ordinary people.  Fancy that!

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Do you have a form of Autism or know anyone who does?  What are your experiences with having Autism, caring for someone with Autism, or working with people on the Autism spectrum?  Share your thoughts and experiences in the comment section!

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