Somewhere on the Rainbow (Living with Asperger’s Syndrome)
by James WF Roberts
To start off with I should make this clear, I am not an advocate, I speak for no organizations, I speak for no groups, no special interests and no funding or charity organizations. This article is 100 per cent about my struggles with depression, mental illness and coping with Asperger’s Syndrome. I am not speaking for every person with this condition because everyone is different, there is no clear definition, no clear distinction across the board. We all deal with things differently and we all have our own needs and treatments.
Before I reveal my story maybe we should throw open the doors to what it is we are talking about here. AS is a developmental disorder that affects how the brain processes information. It shapes a person’s social, emotional and communication skills, and behaviours. Asperger syndrome usually becomes obvious during childhood and remains throughout life, with varying degrees of disability. There is no cure. However, the skills of a person with Asperger syndrome may be aided by a combination of support, regular routine and therapeutic intervention.
The following behaviours are often associated with Asperger’s syndrome. However, they are seldom all present in any one individual and vary widely in degree:
- limited or inappropriate social interactions
• “robotic” or repetitive speech
• challenges with non-verbal communication (gestures, facial expression, etc.) coupled with average to above average verbal skills
• tendency to discuss self rather than others
• inability to understand social/emotional issues or non-literal phrases
• lack of eye contact or reciprocal conversation
• obsession with specific, often unusual, topics
• one-sided conversations
• awkward movements and/or mannerisms.
What is the cause of Autism?
In the 1950’s and 1960’s, there was a widely held belief that autism was caused by parental coldness towards the child. The term “refrigerator mother” was often directed towards the mothers of these children—but that is a very Freudian and outdated idea—blame everything on the mother.
Isn’t it Caused by Vaccinations?
The myth of vaccinations causing autism, really comes to the fore from a research group in the UK, led by Andrew Wakefield in 1998, suggested that some children who had received measles-mumps- -rubella (MMR) vaccine went on to develop bowel disease and developmental disorders such as autism.
The limited control group of this test was only twelve children—the results were published in a medical journal and history and hysteria was made. However, in 2004, the authors retracted their claim that there was any association between vaccination and autism—tell that to the anti-vax movement.
In 2010, the paper was withdrawn from the journal after the General Medical Council found that the results in the paper had “proven to be false”; an apology was in printed in the journal.
A large number of high quality studies have compared the health of large numbers of vaccinated and un-vaccinated children over many years. The largest study, was conducted in Denmark, which included over 537,303 children, concluded that that un-vaccinated children were just as likely to develop autism as vaccinated children were. The results of this study were combined with the results of nine other studies and research groups, that included medical information from nearly 1.5 million children, from all over the world, the researchers were able to confirm that vaccinations are not the cause of autism.
Science has proven what Hollywood conspiracy theorists like Jenny McCarthy and the Anti-Vaccination movement still won’t believe. I am not here to dissuade people of their opinions, we all have a right to them. No, matter how dangerous or erroneous they are.
Now, I want you to imagine, living everyday of your life as if you were plugged into a server, into a mainframe—the national grid. Imagine every light, every sound, every smell that surrounded you, was almost too powerful for you to deal with. Basically imagine you were on LSD or Magic Mushrooms all day, everyday—every touch, every sensation, every emotional response, every embrace, every kiss you’ve ever had, be it a tender peck on the cheek of a relative, or a long absent friend, or the first trembling, bumbling kiss of a first date, or the long passionate electric ‘pash’; the prelude before the main event, was like fireworks for you.
Imagine every sensation, spicy food, that lingering jumping smell of B.O. in an over crowded lift or on a crowded Loop train at peak hour—was over powering you’re almost walking in a daze—almost permanently tweaking, tripping off ya chops—that is my world. My eyes are not eyes—they’re cameras filming, dissecting, capturing, remembering everything that I encounter. This is not just my world, these encounters, these experiences are shared, echoed, played out day by day, minute by minute, by many people who classed under the tag—the label of being ‘an aspie;’ don’t worry he’s just an aspie’; ‘he’s just a bit eccentric’. “Can he count cards like Rain man?” “He’s not violent and volatile is he?” “How come you’re crap at math? Aren’t you all obsessed with numbers and dinosaurs?”
“He’s not gonna shoot up a cinema is he?” “How could you have these learning problems if you have two degrees? If you have honours? How come you can’t kick a ball? Or drive a car?”
“Aren’t we all a bit aspie anyway?”
I have heard every single one of these patronising sentences, and many others like them, time and time again. Especially, that last one—that cuts to the quick a little too much.
Yes, I have what used to be called Asperger’s Syndrome, but has now been designated as part of the Autism Spectrum Disorder, collective.
Common Misconceptions About Asperger’s Syndrome:
Yet, the hardest thing in the world for me is to be a friend, is to be in any form of social, or physical, emotional relationship. Cold and aloof one minute, angry and having a temper tantrum the next; being possessive and almost controlling to not giving a Flying F, all within a manner of minutes; and this is just being around of my closest friends—I can’t help but think what sort of nightmare it must be for people who have been in relationships with me in the past or relationships I am currently in. I get so overwhelmed even when seeing family members that I shake and tremble, I stammer and stutter; yet give me a few drinks and other things, that I cannot publicly condone and I appear to be a normal person, whatever that even means.
I swear, it must be like dating several people at once, dating me. Even at my age, my emotional immaturity and nativity, must be one of the most surprizing things for people I encounter.
Like, I previously stated, I was not formally diagnosed with having ASD, until I was in the Australian Army; yes I was an AJ training to be an infantry soldier, though most people who have ever met, never believe me; I am not the Army type, whatever that means.
I went mis-diagnosed for years because of an awful education system in the 1990’s. But, there were other factors too; growing up in a regional centre, a big country town like Bendigo where there are still limited resources in mental health and well-being; the stigma of learning disorders, that are still prevalent to this day. And, the biggest one of all; my father dying when I was six years old. My father was a prominent figure in my home town, a musician and music teacher and radio-presenter. Everyone knew his name, many people still do; and his death, was often blamed by teachers, childhood therapists and social workers alike on being the reason, I am the way I am.
This article is not about being preachy, nor is it about telling the reader about everything us “aspies” go through, I could never speak for everyone who has Asperger’s—we are all different—with different symptoms, different shades, colours of the spectrum. I have not really had that much contact with a lot of Asperger’s support groups, ashamedly I try not to be signalled out for it, I try to show I am normal all the time. When you have been through remedial classes all of your educational life—until University, you tend to get a bit of a chip on your shoulder about being put into a group where many people will look at you differently, where so many people talk down to you and are condescending to you, after a while you just can’t do it any more.
Primary school was an absolute hell for me. Picked on every day, by students and staff alike; there was quite an interesting little game that was developed called ‘rampaging Robbo’ which was essentially bear-baiting, me being the bear; was put in the middle of a circle of school mates (mates—that is an interesting term); who would all chant and taunt me, ‘you’re dad died because you’re so dumb Jamie ( I hate Jamie); have they found a cure for being a carrot-top yet—your freckles make you look like you have measles…etc… by the way if you are a ginger, and someone calls you a carrot top, never actually say that carrot tops are green, all you get is fire-crotch or carrot arse for the next two years; I would eventually lose my cool and everyone would run and I would chase down whoever the slowest person was and attack—I didn’t know how to throw a punch or even how to position my fingers so I would scratch and choke and go for people’s throats…so there was always blood.
Many of the teachers were just as bad. I was too loud and too disruptive, I was actually made to sit facing the far wall in the middle of a double joined classroom, masking tape was on the floor in a square shape, like a cage. “you like star wars and star trek, James…this is like a force-field..” (how patronising was that, eh?).
Despite my protests and anger I was told my mother was aware of it and agreed to it, and throughout the remainder of that year I had to face the wall and not speak to anyone during class—great way to make friends ay! You have red hair and freckles, no father, all your siblings are 7, 9 and 10 years older than you, you are lousy at sport so you are not really good at making friends in a country town—to top it all off, you are virtually a freak in a cage for all the other kids to point and snigger and giggle at.
It wasn’t until I was in my twenties when I had the discussion with my mother about that incident, we were both horrified for two totally different reasons, my mother was horrified that it happened to me, and I was horrified that she was never made aware of it. Don’t you just love the good old days when teachers and staff made decisions about the mental, social and emotional welfare of students, without consulting with the troublesome single parent. I could keep on going down this track even further, many, many times over.
Following in the family business was not that pleasant either, as every time I tried to play an instrument or sing a song at primary school or in the high school ensembles and youth string orchestra I was in, all I ever got was “you’re not as good as your father” or “brother” or “sister” etc…yeah that helps you improve.
These are some of the reasons why many people, like myself with ASD conditions, eventually learn to hide our emotions, we feel so much but have no cognitive way of displaying or showing them without the flood gates opening up; so we become ‘robots’ we become ‘little professors’.
We learn to adapt to our surroundings by switching everything off—the only problem with that is, that when we connect with someone, or when, and I loathe using this term, ‘fall in love’ or develop feelings for someone, we cannot control, and we become controlling, manipulating, possessive etc.
Although, it has to be said living with a condition like ASD is not all bad. Because you have trouble making friends and you are never really apart of cliques or groups, growing up you tend not to get into too much trouble or do highly risk-orientated things like many young people, young men and boys, especially, get up to.
As a writer it does give me very interesting powers of observation, I can walk into most rooms or events and tell you what everyone is wearing or what they are doing, even a few months later if it was a particularly interesting night you can remember it so well you can write about it. in a lot of ways it gives you discipline and a very narrow focus which is useful for academic research and for journalism and writing—I am quite proudly a high school drop out, I had a year ten co-ordinator who was friends with the year 11 co-ordinator at the time at Bendigo Senior, and they both said was too dumb to do advanced English or Literature, or Philosophy or film studies—oh yeah my Under-Grad is Bachelor of Arts in: philosophy and religious studies; literature, art and film, recently completed a masters of Communications and Media studies, almost completed a masters of journalism and am in the process of applying for Doctoral (PhD) studies—so being an Aspie is not all bad, don’t get me wrong.
There are quite a lot of very famous people who have Asperger’s Syndrome or are on the Spectrum:https://www.ranker.com/list/famous-people-with-aspergers-syndrome/celebrity-lists
- This is part one of a series on mental health and disabilities that I plan to do through the next few weeks. We also be looking at Anxiety and Behavourial conditions that inflict people on the spectrum, particularly bi-polar personality disorder. and relationships and sexuality of people on the ASD spectrum.
Sources: AUTISM AWARENESS AUSTRALIA. DSM-IV. Youtube. http://www.immunise.health.gov.au/’