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.
© This work is covered under Creative Commons License
Use this article at your own risk. This article does not give legal opinions or advice. Any action or outcome that may result from this article is the sole responsibility of the reader. This article is assumes no responsibility or legal claim against it.
© 2010 shazwellyn
shazwellyn (author) from Great Britain on February 22, 2017:
Well.. 10 percent of the population have ASD, so in the grand scheme of things, we are not alone!
Jill Mollard Toth on April 03, 2016:
Well, today I have thoroughly been smacked in the face with reality...( as if I needed more) my daughter is autistic. My son has ADHD. I was labeled as possibly mentally retarded at age eight because I couldn't read or write. It was a terrifying experience, the testing proved contrary to the initial thoughts... In fact once everything " clicked " my reading and comprehension levels were college level.
I acted. Literally dived into theatre to survive High School, to fit in, to hide.
I chose photography as major in college, at the time it was highly technical and beautifully isolating.
At 41, I'm depressive. I coped by being an addict.
Romance? Oh, god. Divorced. Often described as " intense" " intimidating " my personal favorite " too intelligent"!!!!
I have no less than four cousins on the Spectrum with the family nos possibly understanding ancestors' stints in mid nineteenth century Psychiatric facilities... ( can you imagine how barbaric that was???
But, overall, life is good. I'm pursuing a second degree aimed at counseling addicts.
I have a partner who just loves the hell out of my brain, my children, and he's not intimidated one bit
shazwellyn (author) from Great Britain on August 25, 2012:
It is just a label emmy, but now you know more about yourself, you can progress and develop into be the best you can be. I am glad to have helped you with your progression :)
emmy1980 from North Carolina on August 23, 2012:
Great hub! Thanks. I'm going to follow you. I have two children with autism (2 boys) and a girl that has a lot of aspergers traits. It was through raising my kids than I discovered myself and why I have had so many social difficulties all my life. I feel I have aspergers but have never been formally diagnosed. I identify with so much of what you said. Thanks again.
Mary Kelly Godley from Ireland on July 24, 2012:
Thanks yeah I have copped that now!
shazwellyn (author) from Great Britain on July 24, 2012:
thewritingowl... ditto my friend x
Mary Kelly Godley from Ireland on July 23, 2012:
Very well said there is another party going on inside my head. Like your story I only found out it was AS last year after my son was diagnosed with Autism and I thought could that be it? My difference, my depression, anxiety, as my husband says often my problem with thinking too much about things, over analyzing situations and being rather paranoid at times. Eight years ago I developed a very intense interest in psychology after I was diagnosed with depression and there started my journey to trying to figure out my head. Never would have dreamed it was AS though (knew nothing about ASD until after I had my son four years ago). For me a diagnosis was something I needed so that I could finally understand myself and I believe it has helped me to know it explains a hell of a lot and makes me more accepting of my mistakes i.e. I didn't know how I was supposed to handle my brain. I will check out more of your hubs and follow you. Please check out mine sometime too.
Claire from Lincolnshire, UK on May 14, 2012:
I was diagnosed at 31 when I realized through my own studies and research I has aspergers syndrome
breete01 from Huntington, IN on August 27, 2011:
Yes it sure does. Have a fabulous weekend.
shazwellyn (author) from Great Britain on August 27, 2011:
Thank you breete... it takes one to know one!
breete01 from Huntington, IN on August 26, 2011:
Great article. You have amazing insight. Thanks for sharing this hub.
shazwellyn (author) from Great Britain on November 07, 2010:
Tarin... I always say celebrate who you are, whatever the label and particularly when ASD.
As regards to Aspie women, I think they are drawn to psychology because they don't 'get it' when they are children. I know this through personal experience.
Thanks for calling by and glad that you are happy just to be you!
Tarin from San Diego on November 07, 2010:
I don't think Asperger's is a disorder at all I think it's a benefit! I am a male who was diagnosed with asperger's. I love the fact that I stim and love objects more than people. What's curious is that Aspy women are drawn to psychology...
shazwellyn (author) from Great Britain on August 31, 2010:
Lonicera - With the new information about undiagnosed women and girls, your son and your generation, will be found. It is good that you have identified that you have this condition. Now you know that it is just the way your brain is wired. This is a new found hope for you , and even better, your son can reap some silver from the lining of the cloud that you have had to shoulder. Keep strong and know that you are one of the many in this world that has this condition. It is not an easy life, but you now know that you are far from being lost... now you are found. It is a shame that for your mother, it is too late :( God rest her soul x
Lonicera on August 31, 2010:
My son has Asperger's. I think I have Asperger's. I also think my mother had Asperger's. She committed suicide.
shazwellyn (author) from Great Britain on June 15, 2010:
Computers give us time to think and react appropriately. They are also a great tool for sequencing problems. They help us with organisation and you can always escape social relationships if they get too difficult for us. We dont have to worry too much about eye contact, verbalising and body language which can be a stressful in social situations.
The 'normals' seem to cope well in these situations whereas the 'specials' just dont 'get it'. We have to study social situations logically and simulate what we have learned. But we never quite seem 'natural' however hard we might try.
Me? I am just over the top with social relationships... a bit overbearing, wanting to impress. It is just a way of saying 'please like me' which can be a real turn off.
The computer enables me to express what is in my head in a non threatening, rejection way.
Baileybear on June 14, 2010:
My husband complains that I'm always on the computer!
shazwellyn (author) from Great Britain on June 14, 2010:
Baileybear - there is a lot of 'us' here - we seem to be concentrated on the internet. It is how our minds are wired! *wink*
Thanks for reading x
Baileybear on June 14, 2010:
Nice hub. I grew up with undiagnosed AS too
shazwellyn (author) from Great Britain on May 13, 2010:
Hi Susana S... I recon hubpages must have quite a concentration of Aspies. Apparently, it effects 10% of the population. Where would the world be without diversity? We might be 'stupid' in one way, but genius in others. Every positive always has a negative! That is the payoff.
If you read my aspergers and jewish ostrasiation hub, you will see some of the great people of our history who were aspies. They inspire change and a different way of looking at things.
I am honoured you visited Susana. Thanks:)
Susana Smith from UK on May 13, 2010:
This was a great read Shaz - I was gripped! I'm also kinda weird and when I recently took an online autism test (on the advice of my 17 year old daughter!) I scored incredibly high. I have also studied psychology and have done social work so maybe I fit the bill in more than one way. Nearing 40 myself I don't think I'll ever have a diagnosis, but then again I'm not sure I want one! I appreciate my ability to think creatively and concentrate so hard that everything else is blocked out - not sure anyone else does, but hey we can't all be the same can we? Thanks for your honesty and well written article :)
shazwellyn (author) from Great Britain on May 12, 2010:
xgear - the sequencing is a bit awol! Glad you came to read, it is great to have diversity in autism. Welcome to my head! :)
Xgear from Chile. on May 11, 2010:
Hey there shaz,
Creepy a full family of Aspies, in my case its rather different, Brother with ADHD and a Bipolar mom.
Anyways, the world is a vast place forr differences to grow, luckly we've been able to keep it together.
Nice article =) Although your writing seems kind of, weirdly structured, its fun to read :P I can imagine your head sort of like a Magician's box with stuff floating everywhere :P
Fun to read this was =)
shazwellyn (author) from Great Britain on May 10, 2010:
Vanessa.. thanks for stopping by. It might be that your father may appear to have it worse than you because, being male, they only use one half of the brain in communication skills, whereas women use both sides. This results in it appearing more profound in men - that is why it is easier to diagnose males than females. We can cover it better or 'fake it' more.
Bad head days seem to be more prevailant when under stress. It might appear to others that we are neurotic or depressive, but it really is the aspergers. This for me is a time of retreat.
Thanks for your valueable comments and good luck:)
vanessak69 on May 09, 2010:
Hello all. Thank you Shaz for this wonderful page. I just learned I had Asperger's this week so it's all rather new for me. But hearing that I had it made my whole life suddenly click into place.
I too have bad head days (I will have to borrow that line from you Shaz) and become overwhelmed with whether I navigated iteractions appropriately. Did I talk to much? Why did I interrupt that person? Why did I act weird in that meeting when they asked me what I thought? What I thought was I was in ill-defined trouble with the adults (I'm 41, btw) and that I shouldn't speak.
Since I didn't know I had it, the diagnosis made a world of difference to me. I no longer was different from the rest of the planet (having long since stopped trying to tell people something felt different and being told in return "Oh, everybody feels that way sometimes.") I long suspected my Father has it and my therapist confirmed that it sounds like he does, although much worse than me.
shazwellyn (author) from Great Britain on May 06, 2010:
embee - thank you for your words of support and encouragement. It is good to know another 'head' person x
embee77 on May 05, 2010:
Shaz - THANK YOU for your "intense" response. I LOVE the way you describe your difficulty getting out in words what you are thinking in your head. And the dead-on accurate way you explain why we ask for summarizies and deeply rely on people to follow through on verbal commitments. You've helped me a LOT with your feedback. My thought for you is: Even if you don't have an Official Diagnosis, it's OK to ask for what you need. Good luck.
shazwellyn (author) from Great Britain on May 05, 2010:
embee - I am glad that people like Attwood is spreading awareness. He, as well as my son, has helped me understand myself more. I now understand why I feel the need to do what I can on good head days. It is like, 'well tomorrow I might have a bad head day, so best to get things done whilst the going is good'.
Lately, I have had a period of severe aspie episodes. I think this is because I am under pressure with my son's problems. High levels of stress can make for more bad head days. It is frustrating when your cognitive abilities go awol when you need them more than any other in your life.
For example, I had to talk to the Doctor about my son and the impact 'the system' was having on the family. Again, jumbled words and red rashes appeared on my chest. There was so much in my head, but not enough time to get it out. The head runs fast, but the words are slow. A plan was made during the discussion, but it was all underlying - context. I needed a summary at the end - something black and white. I said 'so what is next?' she looked confused - what had we been talking about for the last 10 minutes? So I said 'Shall I wait for you to contact me or do I need to make another appointment?'.. well she is going to contact me after talking to my regular Doctor. So, as far as I am concerned, that is set in stone. Now I know that if she doesn't, I shall find this difficult because we have made a plan.
You see, lots of people make verbal commitments and when they don't follow through, it causes such a lot of heart ache to asperger's people and, as a result, these experiences can lead to a lot of mistrust in the individual's life.
I think, if I did have an official diagnosis, then it would give me license to say 'excuse me, but I am asperger's and I don't get certain things, can you explain?'. Whereas now, I am finding myself saying 'I am an undiagnosed Asperger's' - it just makes you 'odd'.
Sorry, I didn't expect to respond so intensively in this comment. Thanks for reading:)
embee77 on May 04, 2010:
Isn't Attwood wonderful? I've heard him speak in person: funny, and dead-on accurate. Thanks, Shaz, for your story. Why can't we all just accept each other for what we are? Either we "have" some "condition" or we are eccentric. I truly believe our personalities all originate from neurological settings we're born with. People have more similarities than differences - we just have to know how to interpret each other's behavior. I am working on some hubs addressing this very subject. Thanks to you and your readers for some helpful insight.
shazwellyn (author) from Great Britain on May 02, 2010:
This is a very interesting concept and I am not aware of it. However, Steven, we need to know about new research methods. Thank you for posting :)
Steven Michaelis on May 02, 2010:
There is more and more research that links many learning and developmental difficulties to poor communication and synchronisation between the two brain halves. An effective way of improving the processing functions in the brain is to listen to specially altered sound or music through headphones as pioneered by Dr. Alfred Tomatis (Tomatis method) and Dr. Guy Bérard (Auditory Integration Training - AIT).
Now there is a new Sound Therapy Programme which has been specifically developed with the aim to improve sensory processing, interhemispheric integration and cognitive functioning and it is entirely free to download and use at home. It has helped many children and adults with a wide range of learning and developmental difficulties, ranging from dyslexia, dyspraxia and attention deficit/hyperactivity disorder to sensory processing disorders and autism. It is not a cure or medical intervention, but a structured training programme that can help alleviate some of the debilitating effects that these conditions can have on speech and physical ability, daily behaviour, emotional well-being and educational or work performance.
Check out the Free Sound Therapy Home Programme from Sensory Activation Solutions. There is no catch, it's absolutely free and most importantly often effective. Find it at: http://www.uk.sascentre.com/uk_free.html.
shazwellyn (author) from Great Britain on May 02, 2010:
I am so glad you commented here Viking. People like you and your family should be proud of what you have achieved and who you are. Daily living is a struggle and a fight. I tend to avoid people, telephone etc on bad head days, and when I have a good head day, do what I can when the going is good. It is those days when I do my ringing around and prepare myself for the days when I have to socially interact. I, sort of, put myself in a different person - yes, I act a performance, but it gets me through.
Again, many thanks Viking :)
L M Reid from Ireland on May 01, 2010:
To have Aspergers Syndrome makes you different
To be different in this world we live in is hard and traumatic.
The hoards of so called normal people attack you, phyically and mentally, when you are a child in school. When you become an adult the same thing happens in the work enviroment.
I am different, I have Aspergers Syndrome. I am a 53 year old female. I knew I was different when I was 3 years old. I went through hell in schools and in jobs until I was 30 years old. Then I decided I was not 'playing the game' anymore. I am me and that's what they get, like it or not. It is their problem, not mine anymore.
I was blessed with parents who allowed me to be me from the age of 6. Why? Because we all know now that my father has AS too. I have one brother who is AS and 3 sisters who have AS too in a milder form. There is also 2 nieces and 2 nephews with the condition. Our family is different but we are together and we understand each other.
Thanks for the hub
shazwellyn (author) from Great Britain on May 01, 2010:
Vidita - empathy would be nice. Understanding an an allowance of the weirdo behaviour in social situations would help to relax her. Misinterpreting her as acting 'off', when she is just having a hard aspie day would be good. Thanks for reading :)
vidita shrotriya on May 01, 2010:
we should have sympathy for them & give them moral support to get out from their suffering.
shazwellyn (author) from Great Britain on April 30, 2010:
mega... I say now more! :)
shazwellyn (author) from Great Britain on April 30, 2010:
poetlorraine - it can make us fighters though :)
shazwellyn (author) from Great Britain on April 30, 2010:
Enlydia - I guess you are just individual! :)
mega1 on April 30, 2010:
I know. I know.
poetlorraine on April 30, 2010:
aw none of us are normal, some of us just don't get the help we nee need, nice one.
Enlydia Listener from trailer in the country on April 30, 2010:
I fall into some kind of category...I know I am not normal...or at least in the sense of the world. Thankyou for giving details...that helps to understand what Aspergers is.
shazwellyn (author) from Great Britain on April 30, 2010:
CassidyS - Thank you, you are too kind. Lets hope we can spread the looove and help others put the missing piece of the puzzle together. :)
CassidyS from OK on April 30, 2010:
Nice hub and very informative! I have social anxiety, but don't quite fit the profile for aspergers. It sounds like you're doing a great job not only with your family but helping others too.