By: JD Author, Reporter-Journalist
“Don’t worry about trying to walk in my shoes, just try a day in my head and attempt to sort my thoughts.”
Over the last several months I have undergone a multitude of invasive and irritating testing and evaluations by Psychiatrists, Neuropsychologists and clinical social workers about my mental wellbeing at the behest of my physician. He felt it necessary to address the many questions I have had over the years about my past diagnosis and why no matter how hard I try to follow past therapist’s instructions, and aftercare for a multitude of previous diagnosis’s such as Avoidant Personality Disorder, Aggressive Conduct Disorder and anxiety, to name a few.
Last week I had a meeting with my neuropsychologist to review all their findings and understand why the diagnosis of Asperger’s and a Spectrum Disorder was being used to identify me. Although there is a fancy medical label for my way of thinking, reacting and handling life as I see it, I still am unsure as how I should feel.
As I sit here at my desk to write this, I realize that I am not only trying to explain this to you, my followers, but I am trying to explain my thoughts and feelings to myself as well. Most of the time when I write and share my thoughts and opinions, writing comes easy. Then there are times like these when I write on a more personal note and tend to wander off track because explaining my innermost battles mentally and emotionally confuses me, just as much as I confuse those around me on a daily basis. It’s rough enough understanding myself and explaining my Multiple sclerosis and having others always tell me “but you don’t look sick”, and me replying “well you don’t look stupid either”, now try explaining or saying “I have Asperger’s, and no I am not a freak, I just don’t do well in many circumstances you find comfortable and part of being normal”.
I am starting to read more about other adults with ASD (Autism Spectrum Disorder) and have learned that I am just as uniquely individual as others with the same diagnosis. ASD encompasses a very broad array of circumstances and reactions, no two cases or people are exactly the same.
That being said, I will try to explain my world as I see it, and the world of many of my fellow Aspie’s. As I attempt to share with you my feelings, in the hope that it may in turn help you to understand the feelings of another who may be close to you, I am also making mental notes to help me understand myself. By doing this I hope I can finally work on better coping skills in my everyday life. Relying on medication and repeat avoidance I am depriving myself of so much. Please understand that I am not trying to offer any solutions or to appear as to be offering either a positive or negative perspective here. I am simply trying to explain how I feel, how I have always felt and never really shared with others. I wouldn’t dare share it with most my family, because they are for the most part, unaccepting of any diagnosis medically or psychologically that would draw any negativity in the family gene pool and that isn’t visibly noticeable or able to prove in a blood test result. God forbid anyone find out someone is a flawed freak in their blood-line!
Ever since I was in elementary school I have felt myself to be totally alone, different and somehow uniquely different from everyone else. Not in an egotistical way but just unusual. As far back as I can remember, I felt very strongly that I didn’t belong here in this world. I was a very quirky and loner child most of the time. When put in circumstances or environments where I was required to be social, I acted out inappropriately and would up in trouble. I found it hard to make friends because usually they felt uneasy around my odd quirks and dispositions. By the time I hit middle school I had realized that I was somewhat “emotionally retarded” and would at times respond poorly or inappropriately to a situation and regret but still fail to understand my actions upon later reflection. My social skills were and still are, reasonably poor. I have never been able to like myself no matter how hard I tried to.
I have never cared about my appearance in the eyes of others, having long ago decided that I was ugly and unattractive anyway and no matter what I wore or did to change my appearance, it was as irrelevant as I felt I was to others. The feel and texture and constraints of many materials clothes are made of seem to bother me in a strange way and I am starting to discover those feelings are related to sensory issues that are part of ASD, and really, I am not an odd duck.
Over the years, I have established relationships and friendships with people who have loved and still proclaim to love me deeply and many have assured me that I look fine, even beautiful in their eyes yet inside I have always felt it to be the untrue. I find putting on nice clothes pretentious and embarrassing because the feel of them or their texture is so irritating, that I would much rather just be naked. I however do know the importance of being clothed and cannot afford bail money if I were arrested for being unclothed should I have to venture out in public.
I cannot remember any time in my life that I have ever felt truly happy and carefree, but am good at being the master of disguise, hiding this from everyone. I have always felt that people regard me as strange or eccentric and thus I usually prefer to be alone and keep everyone at a distance.
My family has always been by all appearances accepting of me, but I do see that they distance themselves for the most part outside of the casual appearance of caring. I have always been prone to mood swings and irritability that is controlled by medication. Some days the meds work and some days they do not. My moods fluctuate between severe depression, resulting in up to 3 to 4 days of uncontrollable crying and sobbing, to short bursts of absolute and quite irrational anger. Not anger in a violent sense, I don’t have a violent bone in my body, and have never broken anything, hurt myself or attacked anyone since I became an adult but I can become very verbally aggressive if I am not aware, or made aware that my mood is changing.
When within my comfort zone, like behind the protection of my computer screen or via phone, my peers consider me to be articulate and intelligent and often seek my advice on a wide range of topics, and I enjoy being able to help them. But when physically around them, coping and “playing the same role”, requires a lot of medication and effort, that can be mentally exhausting.
I never knew I had ASD or really understood how an adult could suffer for years with such a condition undiagnosed. I recall the many times growing up and being forced to see psychiatrists and told I had possibly psychosis or bi-polar disorder, or many other different labels over the years, no testing they did drew the same conclusions. I believe I had them as baffled as I was myself. Thanks to the help of new physicians and psychiatrists over the last few years, I have learned that I am not alone in my unique little world inside the universe, but there are so many other adults with the same quirkiness. When I was first diagnosed three years ago, I was in denial and told the therapist he was full of shit and walked out of his office, calling him a quack as I left.
At the behest of my neurologist, who has been helping me cope with medical issues and noticing some of my behaviors each visit to his office, he connected me with a great psychiatrist and counseling team that confirmed that diagnosis from the past, and have helped me come to terms with accepting it. To make me feel more comfortable and accepting this, they gave me reading materials about adults with ASD, and upon subsequent investigation and testing proved my neurologist’s suspicions to be well founded. I have Asperger’s/Autism Spectrum Disorder and I need to learn to cope better.
At first my reaction in regards to myself was one of relief at finally having tangible definition for what I had been feeling all these years. The relief was soon replaced by mixed feelings of remorse, frustration and helplessness. For a while I felt “ripped off”. I felt that 40 years of my life had been stolen from me and that, had I known about ASD from the beginning, my life could have been vastly different. Maybe I could have understood myself a little before now and maybe others could have too
I am a computer technician and crating artist, in fact many of my peers consider me to be quite a talented one, though I do not particularly share their opinion and have always been my own worst critic. I find hand crafting and my artistic pursuits to be easy and obvious. Computer skills were a breeze to pick up, requiring virtually no effort. I feel quite relaxed and comfortable working on computers or speaking to groups of hundreds of people that are not required to reciprocate any input easy, if they do not require personal interaction with me. Yet I find it difficult to sit in a room with more than 3 or 4 other people, and even then, unless I know those 3 or 4 quite well, I feel tense and nervous. I find it hard to make eye contact with other people, even those I know well and love, when I am face to face with them.
Filling out a form or talking to a stranger can be fine or it can reduce me to tears. I notice that attempts to have general conversation with people nearly impossible. Working with or around other people makes me feel self‐conscious and inadequate, yet I excel working on my own at the same task. I often put on my “brave” mask when I must, but going to parties, shopping for groceries or personal necessities, and laundromats are like a recurring nightmare, that makes me want to scream, then crawl in a corner, pull my knees to my chest and cry like a toddler. I know I can’t do that or someone will call the men in white coats to come drag me off in a hug-myself-coat (straight jacket). On a few occasions, I have actually gone to a bathroom and locked the door and just sat in the stall trying to catch my breath and get a grip on myself, then hurry and make my way out of the situation, so I can retreat to the safety of my car, alone. Then I cry.
When I try to explain the diagnosis I was given to people, I feel like they either think I’m making up excuses for myself or look on me as a freak or as some kind of nut case. That’s how I was treated by most of my family growing up, so what should my friends be any different? I feel that by telling them I have ASD I would be alienating myself, but then, if I don’t tell them, and I fail at hiding my true self, un-medicated and deeply controlled, I will probably mess up at some stage and they will think I have completely lost my mind.
But then at times I feel quite fine about myself, I feel like it’s the rest of humanity that has the problem, not me. Sometimes I too, look on myself as a freak and a nut case. But then, I’m sure I’m not, because they always say that if your nuts you don’t know it, and I’m sure I am, so I guess I’m not. Does that make sense to you? It does to me.
I have had four beautiful children who have grown up with the strange me as their mom. They have always been non-judgmental and loving, but I have not dared share this diagnosis with them, it’s much easier for now to let them just accept they have a mom who just is an asshole in public and prefers to be alone. I had my ups and downs and sure wasn’t the perfect parent by any means, never claimed to be a June Cleaver, but I did my best. They have all turned out to be wonderful and successful adults.
I don’t know if I will ever come to terms with myself or with Asperger Syndrome. I try, but it gets very difficult on your own at times without the support of another. Just a shoulder or an ear or even a hug sometimes would do wonders. That is on the days I don’t mind being touched. Some days I feel like I wish I had a personal “bubble space” that no one could penetrate, because even a touch can sometimes feel invading. I do believe that everyone needs to feel loved or needed in some way. Yet, I still cry every day and must go to some lengths to convince myself I am a worthwhile member of this crazy human race. I just put on my mask and face the world each morning, as I have always done.
I think I am quite good at it. And, in the end, ultimately, I believe that I am worthwhile despite the fact I seem to mess up so much that I sometimes wonder whether it’s worth leaving the house any more than I absolutely must. I do prefer to stay home and be reclusive and may seem almost shy to some, and only leave if it is to spend time with my kids in the safety of their homes, because they are familiar to me and my craziness. They know I have Multiple Sclerosis, and sometimes with MS a person tends to lose their faculties slowly, and I assume they think my odd behaviors are related to that and disregard it as such.
I even must draw away from some people I interact with via computer, online or on social media, because I know if I say or type what I am thinking, I will piss off a lot of really nice people I love. I have such a low tolerance for people being judgmental of others because I am always judging myself and been judged by others that when communicate with them it is with gritted teeth and tethered tongue, because I have been there and felt it as a recipient and it hurts. My mind is wanting to scream and tell them they need to look in the mirror and see they are a pot calling a kettle black. A good example of an overweight person making sarcastic rude comments about someone else being overweight and me having to bite my tongue and not say, “Hey have you looked in the mirror? You’re not so skinny yourself”. I cringe at people who intentionally do things that are harmful to them physically by choice, because I am angry that I cannot control what happens to me due to my medical conditions, and they can prevent theirs and choose not to.
I come unglued at times mentally if I must go to a different doctor’s office I am unfamiliar with, or even any public place I must be in. When I go, it’s not that I hate people, or have a phobia, it is the noises in my head I can’t turn off. No, It is not a head full of strange voices telling me all kinds of strange things. It is my inability to filter sounds and process them. When I go to the store, I am super sensitive to the multitude of noises most people can ignore and I can’t. I hear everyone’s conversations at once, everywhere around me, then noises of the cashiers at all the registers clicking, the sounds of a squeaky shopping cart rolling, the sound of the air conditioning vents or heat kicking on or off. Every little sound and visual thing moving about hits me all at once, like a herd of elephants wanting to trample me! My heart rate increases and although there is no rational for my fear, I am frightened half to death because I cannot separate and turn off the noises and they just keep getting confusing in my brain. If I can’t get out fast, I just retreat to a bathroom and hum or sit and rock and tell myself over and over, it’s ok, until I can calm down enough to leave, get to my car and be alone with the sounds I am familiar with and have learned to filter.
I know there is no cure for Asperger Syndrome, no drugs than can be prescribed to make it go away, only drugs to make me stay less anxious and hide it as best I can. There is no meditation or voodoo remedy. I know that my life will always remain a struggle and that I will never be one who will be considered as being “Neurologically Typical”. I will always be an “Aspie”.
Some days I get sick and tired of feeling alone and isolated, even in a crowd, but I go on, and I try to find something positive to focus on. I try to dive into some way to be a help to others in need, because it is a lot easier to fix someone else’s small problems or help them find resources for assistance, since I cannot fix myself. I tell myself, what other choice do I have? Despite looking like a total medical and psychological screw up in the eyes of everyone else my life is good. But gee how I long for and painfully wish daily to be “normal” and just talk about the weather or something. But since I am not, I can only hope that society will one day better understand people like me. I hope that one day I will be able to learn to love myself enough to accept my strange world as not so strange but a uniquely wonderful Aspie ME.
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