Life in a Confusing World Without a Diagnosis of Asperger's Syndrome. It's Tough for Women and Girls!
It has been a lifetime of confused, mixed messages when you don't have a diagnosis of Asperger's Syndrome. It causes all sorts of difficulties - you feel that there is something not quite right and you just can't seem to grasp why people don't 'get you'. It is upsetting, depressing, lonely and devastating when you think you have a strong bond with someone, only to discover, that they don't feel the same. Somehow, you didn't take on board that that subtle piece of body language they had demonstrated was a signal telling you something. You pray that people can just be straight, honest and true with you - say it as it is, as you do for them, because you don't take offence. But, alas, 'the normal's' do!
This is precisely why there is such a diversity between the average person and someone who is on the autistic spectrum - one problem leads to the other for which becomes further exasperated and, frankly, exhausting. Decoding every piece of body language is fraught with paranoia because you keep analyzing what they mean and whether your assumption is right. Then comes the self doubt... 'Did I behaviour appropriately?... I am so embarrassed at how I reacted over such an such...I wish I could keep my nerves in order - I'm gushing again!...Keep the eye contact...Keep friendly...Am I giving the right body language? Oh God, I'm being over friendly and inviting unwanted sexual attention!' These are just a few thoughts that run through me daily, when dealing with social interactions and, of course, there is always the issue of vulnerability. Yes, I have been raped, victimized and taken advantage of over the years, but of late, found peace in my solitude. Being alone is far less exhausting than trying to control the variables of outcomes. Somehow, in predicting how other's will respond to my behaviour from my stock pile of past experiences, the normal's always seem to respond differently to my predictions. Another lesson learned - no one can control ALL the variables because there is an inexhaustible supply of unknown outcomes.
With a diagnosis, come coping mechanisms, understanding and support. However, more women and girls are being diagnosed but for a sub-culture of aged 40 plus women – they are lost. I am lost!
They have Asperger’s syndrome and many don't know it. They can’t make up for a lifetime. Here, in this article, you will find one of their accounts. This generation and the generations that preceeded them were the lost generation - the misunderstood.
Where's The Party? In My Head! Asperger's Bad Head Day??
I always said the party was in my head. There’s lots going on in there – you should join me. This is my magic box of tricks that I can open whenever I want to. Within my mind there is joy, sorrow, pain, love and anger. Many thoughts and many memories that can be revisited and viewed – yes I can relive them and feel the feelings just as if I go back in time. I can spend hours' just dreaming and allowing free thought. It is my safe haven but sometimes it is my nightmare. I can be kept awake thinking about my stupidity and what others might think of me. I guess I am a little paranoid and fearful.
I am compulsive, highly intelligent, depressive, incredibly immature and really quite weird in social situations.
Obsessional Behaviour and Projects
I love projects. I get fully immersed in these short term pursuits but they must have a start and an end. Once I have achieved what I wanted to, or that I find out my efforts are fruitless, the objective has concluded and I am bored. Then onto the next big thing.
An example of this is working at a call centre. I suffered the usual tears as I found learning a new job, capped with dealing with new surroundings and coping with new relationships, particularly overwhelming. I spent 10 months mastering my new skills and finding my own individual way of doing my job until one day I thought ..'I'm done with this, I make the same money on my own and can be in control of my own rules'. So, I left, cleverly manipulating my exit to my advantage. Yes, seems to be some sociopathic tendencies within my Aspie make-up! Well, I have to look after myself, no one else will!
It seems to me that obsessional behaviour goes hand in hand with projects. You have to be a bit obsessive to ensure that the new project goes without too many hitches - controlling the variables again! At the same time, I believe that I have to be true, genuine and honest, which is a lot to contend with when the normal's say one thing, but do another. Being an honest egg doesn't endear the normal's, but does give them the upper hand when you show your cards in this way.
So, in moments of reflection, I super anaylise what others are doing, seek out their ulterior motives and confront them with the truth. They might deny it, but one thing is for sure, they know that I know, if you know what I mean! So, no love lost, in the words of Ian Curtis of Joy Division, 'in the house of dolls'.
Yes, again another obsession...dark indie music! Probably a language that only people with Asperger's Syndrome of my generation understand... isolation, confusion, depression and everything introspective. In my experience, going to gigs that involve the likes of Joy Division, The Cure, Radiohead, Sigur Ros and The National, et al, seems to draw us out of the closet. Maybe we just all get it, because we are it?
Half Price, But Can't See The Wood for the Trees!
Shopping today was a nightmare. Although the supermarket wasn’t crowded, I somehow, managed to find other shoppers. Or did they find me? Confused? You and me both! All supermarkets are evil. They just want to hood-wink you into a false sense of security by encouraging you to buy what you don't need, want or is good for you!
The fish counter advertised ‘Two offers per week – half price’. I couldn’t find the two offers or the words to express this. My semantics were awful – I was having one of those ‘hard work’ days – again! After jumbling my words, I noticed a massive sign with the special offers splashed on a 3-metered board – what a fool! I stumbled my words and embarrassingly apologised – it wasn’t the smoked salmon this week then! How incredibly stupid of me not to notice the obvious! Sometimes, I can't see the wood for the trees.
Over the Top!
Everything I do is oh so over the top! Immersed in projects, gushing to be liked, explanations to important issues - or what I think are important issues - just so OTT! I wish I could just tone it down, but no, I always end up 'going on one'. Someone once said at the insurance call centre I worked for 'I can't make up my mind. You are either stupid or a genius!' I replied: 'I am probably both'. Well, that says it all about being someone who has not been diagnosed, but has, Asperger's Syndrome.
It sickens me. I have the intelligence to know this but the inability to actually change who I am. Don't get me wrong, but if only I could just keep the genus side and eradicate the stupid, or normalise, I would be a better person. Oh, the frustration and dichotomy of it all... it is all too exhausting, not to mention the short term learning difficulties I have endure which, none the less, increases the obsessional behaviour.
Why, I hear you ask? Because I have to work harder at simple things just to get it right. Again, reinforcing the over the top, obsessional behaviour.
Asperger Women Are Drawn to Psychology, Teaching and Social Working Professions
Research suggests that Asperger women are drawn to psychology, teaching and social work. This seems to be true for me, probably because I am trying to make sense of people. My attitude, however, can be very child-like and immature. And yet I am very academic. Confused? Well, that is you and me both!
I obtained an Honours Degree in Psychology, a Diploma in Health and Social Welfare – both from the Open University (distance learning is great for social isolates and it is through this that I thrived!) - and a Certificate in Further Education. I found the class room environment quite hard – the social stuff made me quite, err… Aspie! What do I mean by this? Well, I get a fuzzy head, become clumsy and dominate the classroom with ‘know it all’ answers. These are nerves, you see. I am trying too hard to please. I am desperate to be liked, but you know, no one likes a ‘know all’, do they? However, I know this, but I just can’t stop myself!
What typically happens in these relationships, are that people latch onto me, initially but quickly drop me as they establish relationships with others. It is like I am a link until someone better comes along. Then I become the butt of ridicule.
It is funny how Dr Attwood in his book 'Aspergirls' suggests that many Asperger women become psychologists, teachers and social workers… I seem to fit in all these brackets 100%. It is also odd that both Ruby Simone in her book 'Aspiegirls' and the Doctor highlight a lack of self-esteem and being vulnerable to sexual predators when young. In both cases, I tick the boxes. In some of my stories, for example my Fox series of stories, these dialogue true events (not that I advertise this). Well, these aren’t about someone else – they are my stories (but don’t tell anyone, will you?).
Learning Psychology Helped Me Understand People!
My interest in psychology stems back from childhood. I was always in a perpetual dream state. As I wondered home, I can remember always asking myself why… why didn’t I have any friends and why didn’t anyone like me? So through psychology, I learned about human behaviour – an answer that I sought for ‘why’? I have worked with people with severe learning difficulties and challenging behaviour, nursing and presently volunteer to drive patients to their radiotherapy appointments for their cancer treatments. I, therefore, help people to live and support them through a difficult time. I am told that I should be a Councillor – I use the ideas of client centred therapy, which I learned during my studies.
Learning Difficulties from an Early Age
I couldn’t read and write until I was 10 years old and no one could teach me the time. I learned that by working it out myself from simple subtraction on a digital clock face. In fact, I failed my 11+ at 11 but by the time I was 12 passed with distinction! Work that one out, eh?! When I was being taught to read, for example, I was told that the ‘e’ at the end of the word made it longer. On observing, I could see that an additional ‘e’ would change a four-letter word into a 5-letter word, so yes, it did make it longer.
People with Asperger’s syndrome take things literally – I should know that, I have a son that was diagnosed in 2004 with Asperger’s – it seems to run in the family! Autistic spectrum disorders was something that came up in my course work when I was reading psychology. I knew from that moment on what was wrong (or right?) with my son and I. However, it is too late for me, but not for Daniel.
Asperger's Syndrome - A Family Epidemic
Interestingly, my husband is an undiagnosed Asperger's
syndrome nurse – through knowing about our son, he has identified his oddness
too. My father is another and my
husband’s father is one too (although, I would never tell him – he deals with
things in his own way and I don’t think he would be accepting of it), so we are
all rather odd! They say it can be
genetic and my grandmother used to tell my mother how, as a child, she just
used to stand in the playground and watch the children play – she never
participated! Maybe she was one
too? She certainly was an isolate. It certainly is a family epidemic with us!
So, how do I manage to ‘fake’ social interaction, as Simone says? I learned to act from an early age. I pretended to be someone else and this helped me. However, you get found out in the end. It is impossible to act all of the time.
Typical Asperger's Syndrome - Lost Women
So I am a square block in a round hole. I think literally and have an amazing imagination – the party is in my head! I am truthful (which doesn’t always go down well in society), genuine and love the deepest love. I can lack empathy and come over as cold sometimes which contradicts the intense feelings of love I have for others – but can play the part well enough to hide this coldness from others when needed. I am one of those undiagnosed women - one of the lost women that Rudy Simone and Dr Tony Attwood’s talks about. Simone says that diagnosis and support makes a difference between living a fuller life as opposed to one that is a struggle. Life has always been a struggle for me, so what use is an Asperger’s syndrome diagnosis? I can’t think of what support will help me further but only to substantiate what I already know to be true.
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© 2010 shazwellyn