“I’m 45 and I think I have Asperger Syndrome.”

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Imagine if no one told you you had Asperger's as a child. Imagine you are only finding out now.
Imagine finding out at 45 that you’ve had Asperger your whole life.

 

 

 

By ANONYMOUS

For as long as I can remember, my life has been filled with anxiety, social stress, sensory overload and severe battles with depression. I am 45 years old, a woman and I am realising that I may possibly have Asperger Syndrome.

I am extremely intelligent. This is a fact, not a boast.

I routinely test as belonging in the top 5% of the population. Yet, my work history is characterized by lower than capacity level jobs, and peppered with embarrassing ‘blow ups’ or ‘break-downs’ in the workplace or bouts of stress-related/stress-worsened illness.

I have heard previous work colleagues and employers describe me with words such as “She was great, always so smart, always so hard-working, but then things seemed to go bad, and she just couldn’t cope anymore.”

Right now I feel like such a failure. I can’t get a job. I have half a PhD (about as useful in an employment market as a lead weight to a drowning man). Despite this, I look quite good on paper. I usually get invited to interview, but there is always something that makes the other candidate the preferred option.

Apparently, I am too over-qualified (I think this means that they don’t think I will stay or they fear I will take over the place). I am also “not quite the fit” that they are looking for (usually when I have lost focus and said something socially inappropriate at interview or got too excited or off track or got a bit obsessive about some topic). I am despairing that I will never work again!

Tania Marshall, an autism specialist blogging about Asperger's.
Tania Marshall, an autism specialist blogging about Asperger’s.

A link posted via an online group led me to Tania Marshall’s blog. She details a list of early traits in young girls. I recognised all 17.

I was an ‘awkward child’ and so anxious to belong. I was obsessed with copying the behaviour of my older sisters. I remember on my first day at kindergarten demanding to be allowed to draw a picture book called “If I were magic” which had won so much praise for my sister from my parents.

They said it was so lovely that she had seen just the right things that would make everyone in the family so happy and written a page and drawn a picture for each one of us. It had become a treasured family document, and I’ll bet my 80 year old mother still has it. (On my page my sister wished for me to have eyes that could see properly. At the earliest age I was characterised by deficit and I knew it!).

The kindy teacher assured me that I would produce many lovely things of my own while at the school. She didn’t get it. I had seen that producing this series of words and pictures was how to ‘get it right’ and be ‘a good girl’. I remained hugely, bitterly, disappointed that none of the teachers ever let me make such a book all through primary school. They always wanted their own projects done, none of which had quite the same positive effect on my parents.

I was such a gifted early reader that academic work was a breeze. In fact I used to upset the other kids because I would be promoted to advanced level readers while they were forced to struggle through each volume. Yet, I was very socially and physically deficient. I couldn’t tie my shoe laces and struggled with incontinence way past any of my peer group.

I was happiest when immersed in fantasy stories, to the point where these worlds were real and I struggled to differentiate it from ‘reality’. I had odd or ‘old-fashioned’ ways of speaking, often picked up from the book I was reading at the time. I strongly preferred animals to people. I could play with some other children, but it only really worked if I could be in charge using them as ‘props’ in my imaginary games otherwise I felt lost and confused. I was prone to tantrums and physical outbursts when things didn’t go right.

It is a common symptom of Asperger's Syndrome to be hypersensitive to noise, light, and even smells.
It is a common symptom of Asperger’s Syndrome to be hypersensitive to noise, light, and even smells.

I was hyper-aware of my sensory world, often overcome and terrified by too many sounds, disturbed vision and smells. I hated ‘scratchy’ clothing and freaked out if my hands were sticky or something got in my hair. I loved hooded coats, clear view ‘mushroom’ umbrellas, scarves, gloves and layers to reduce outside sensations.

My mother remembers having to drag me to medical appointments for my dodgy eyesight up a busy city road and across a pedestrian footbridge. I remember the roar of the trucks and buses as they snuck up from behind and blasted me with air and fumes and NOISE.

I remember the swirl and vertigo of the rails on that bridge, the flickering of my peripheral vision caused by the traffic rushing below, the wind buffeting me. The feel of Mum dragging me off-balance because I wanted to stop and go super-slow (my preferred speed in unfamiliar or difficult environments) and she needed to hurry because we would be late. Forty years later, I still have a total phobia of pedestrian bridges over freeways and get hugely anxious when big trucks go roaring by.

The overwhelming sense of my childhood was an intense and consuming desire not to be exposed as the problem I knew I was on the inside. I felt like a fake, an alien, a freak, an embarrassment and a burden. Yet, I so wanted to belong, to be loved, to be told when I was doing it right (whatever the hell the right thing was – I really didn’t have a clue). The time I grew up in was before the advent of positive parenting. I was always told when I did something wrong just like every other kid, but these small social corrections by parents, teachers and older siblings took on catastrophic dimensions inside my mind. They were added to the inner pile of proof that I was an utter disaster and always accompanied by intense, life-long feelings of shame.

Learning how to be a teenage girl straight from magazines.
Learning how to be a teenage girl straight from magazines.

I was lucky that I had three older sisters to model my behaviour off. From an early age I also had access to their Cleo and Cosmopolitan magazines, my Dad’s Wilbur Smith novels and to a range of condensed classics and novels on the bookshelf courtesy of my mum’s Reader’s Digest subscription. I learnt to spell orgasm before I ever understood what it actually was!

I was hugely advanced in my reading, but I didn’t have a clue about practical applications of social behaviour. I was often confused by teasing, bitchiness, bullying behaviours within school and outside of it. I was clumsy in my own attempts to be like others. I looked and dressed like a boy in my younger teen years, and dressed like a middle-aged woman in my later teen years. Luckily, it was the 80s so everyone still hides their past bad-fashion photos!

I was in a rush to grow up because my older sisters seemed to ‘get it’ and everybody liked them, but I was the inevitable ‘late bloomer’ and a bit of an embarrassment to them so was rarely included. It was the same with my school peer group. I was very much a follower than a leader when in groups of teenage girls.

I loitered on the outside of established circles mainly wondering what to say next. I had one or two close friendships which were quite intense, but these petered out as I lacked the skills to maintain any type of meaningful reciprocity in the longer term. I would often ‘dump’ past connections when in a new social domain as learning the new social rules were all-consuming.

School was a love-hate relationship – I loved the learning, but was usually bored by the mundane content. I used to blitz tests but fail miserably on anything that required team work. I used to frequently skip school through feigning or inflating minor illnesses. I was naturally clumsy and accident prone, which really helped in school avoidance. I cringe at the sheer desperation and lengths I would go to in pretending I was coping. Acting classes helped. I learned it was okay to be feeling one thing and showing another on your face. I learnt better skills to mask the confusion, the dislocation, the fear and the pain of not belonging.

I quit school in Year 11 because I wasn’t coping socially and got a series of clerical jobs which gave me access to older people to model off and a pay-check to dress like them. I remember over-hearing one employer asking another staff member if I was ‘not quite normal’ after I spent the afternoon in continuous tears because a kitten had been run over in the car-park outside the office. Another told me that I was ‘too slow’ in doing my work or understanding what was expected of me which he couldn’t understand because I was obviously intelligent. Sometimes I was fired, sometimes I realised I was about to be fired and quit first.

Looking back, I think I had my first prolonged episode of depression around the age of ten, but it was during a period of recovery from physical illness so I don’t think anyone noticed. The utter exhaustion of maintaining these masks of social competence continued to accumulate throughout my teen years. I was plagued by screaming nightmares, occasional night-time incontinence, depression, anxiety, phobias and obsessions.

Normal growing up issues? Not likely.
Normal growing up issues? Not likely.

I remember seeking the help of a psychologist at age 13 or 14, only to be told I had no ‘real’ problems after a single 50 minute session. I struggled to articulate just what was wrong with me, but I that I knew something was.

I was so good at putting on the ‘happy face’ and being ‘the good girl’ that I couldn’t talk about the fear and anxiety and self-hate that consumed me below the surface.

After calling my mother to check the facts of what I had disclosed (in a supposedly confidential session) the psychologist said that the clinic provided services “for teens with real problems like schizophrenia” not teens like me who just had “normal growing up issues” and that she could assign me to a student if I really wanted (inferring that I was wasting everyone’s time but they were being ‘kind’ to me). I thanked her so much for her ‘help’ and never went back again.

At the age of 22, I attempted suicide for the first time and landed in hospital. This time I had 18 months of intense psychiatric treatment from the head of the hospital psych department. It helped. It really helped. Otherwise, I wouldn’t be alive today. The psychiatrist never mentioned anything about Asperger Syndrome. He thought I had post-traumatic stress disorder because of an incident where a gun had been held to my head when I was home at night and going to the kitchen to get a glass of water. (A ‘practical joke’ gone wrong, so I was told at the time, and then told to stop making a ‘drama’ of it.) Sometimes, I wonder if more of my family members are socially deficient.

Over the years I have learned lots about psychology and have seen many counsellors; some more helpful than others. I like mindfulness. I like cognitive-behavioural therapy – working out what is driving my fear and putting in place strategies to regain self-control. They feel ‘right’ on an instinctive level.

In adult years, I have married three times and divorced twice. I had two children, one of whom is diagnosed with Autism. My second husband was diagnosed with Asperger Syndrome as an adult. I think he is braver than me, as I recognised the behaviours in me too, but lived in denial and clung desperately on to my self-construction as a ‘super-coping, positive parent of a child with disability’. It’s just another social mask.

Today, I live a mostly solitary life. I often feel lonely and isolated, but find it so tiring to be around people too much. I have a few trusted people who I can really be myself with – my husband, my children, my ex-husband. I actively avoid group social activities, especially at work. I haven’t been to a Christmas party in decades and prefer not to do farewells if I can discretely avoid them.

I can do one-to-one social interactions or flit through a crowded room with the social mask on tight, but I spend the next day mentally exhausted. Conferences are great – multiple shallow connections, an exchange of business cards, a high of enthusiasm and learning, followed by a bell calling time where you can sit in a darkened hall and focus on a single speaker.

I have patterns of partially completed tasks and projects left unfinished. I love the internet. I tend to get caught in the occasional intense email or online debate, but then I lose interest and am over it. I am a natural researcher, planner and organizer. Did I mention that I love the internet? With the advent of online shopping, I realized that I may never need to leave home again.

That thought was not as disturbing to me as it should have been. Only the need to earn an income drives me out of my comfort zone these days – and the occasional trip to a cinema, an exhibition, a rugby game, a market or agricultural field day (I do really like animals). Hmmm, I just noticed that none of these require complex or prolonged social interaction.

Living in clutter but with certain things neatly arranged. Sound familiar? Image from thingsorganizedneatly.tumblr.com.
Living in clutter but with certain things neatly arranged. Sound familiar? Image from thingsorganizedneatly.tumblr.com.

At a personal level, I live in clutter, but have really strict rules about process and places where things belong. I hate change; unless I am in control of the change process.

I am a fussy eater, especially about texture. I still hate having sticky hands and people touching my head. I am quite particular about how and when I can be touched.

I do still get depressed a lot, but sometimes sitting in the dark just feels so safe. I am getting better at monitoring my anxiety and giving myself permission for a quiet day or using cognitive-behavioural techniques to reduce stress. I am learning to let my husband know if I am panicking.

I love animals better than people. I love nature and the outdoors (but don’t like it being too windy). I notice things that many people don’t see – patterns, tracks, small flowers or patterns on insects. I love babies and small children; they are so much more honest about their feelings. I think I may become more of a hermit, but do like people so will keep trying to get things right socially.

I worry when I see Asperger traits in my daughter and think I am a bad mother for not doing more. I think I do better with my son because Autism is easier; he’s a bit more black and white.

I still get days where I am really, really tired and over it all. I know I really will never, ever get things right, but I will keep trying. I occasionally still get strong urges to self-harm, but I use the tools psychology has taught me to get past it.

I really do think I have Asperger Syndrome, but the thought of having to deal with a real person to get a diagnosis is really just too overwhelming to contemplate.

The author of this post is known to Mamamia but has chosen to remain anonymous.

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