My journey with Aspergers.....

[templek]

I just came across this forum and glad i found it. This was how i led to it

 

My cousin (whose mother is a retired nurse) said this sums me up. This is from a text/email discussion:

 

 

Go out wanting to be centre of attention is all part of it

Running away when someone approaches you it's all there

How can you dance I the middle of a circle But Runaway as someone come to say hello

So now do you see when I said that they were laughing at you at the end of the night . Your reply was you don't care cause you never makes eye contact ...

we were at a music weekender and described it to his mother and straight away says thats

how people with Aspergers act

He kept saying i act a bit weird around people, always with a screw face without even realise and

not being sociable but i can rattle on non stop like a computer, about something i know about! He googled

the symptons and texted them to me and i was suprised to find that was how I behave at times!

I always had a problem going back to my school days for acting a bit silly in a group, shouting things out, making a scene, or rather making myself look a fool. I still act like this now at work and through out my adult life. I thought it was me being silly and childish seeking attention because i was a loner and not part of the 'in crowd'. I always had interests, studied, keep fit but was a bit of a loner and very shy. I always had a screw face, often not making eye contact without realising it and how it can be rude. And sometimes say something silly in front of people , trying to be funny again not realising I made myself look a fool. Sometimes i would shout out things that i am thinking without realising others can hear and would assume i was a bit weird or mad or eccentric. Or be centre of attention by dressing loud dancing wild etc. I thought it was low self esteem, because my dad was a bit if a bully and over strict.

I always had problems getting relationships and usually go at least five years between relationships. And usually at a loss as to how to approach women without boring them or making myself look a fool, when my freinds always find dates easy wether socially in clubs or dating sites. People would often say why would a good looking guy who dresses well cant get dates? That always made be feel like a loser! Well I was suprised to find out guys with Aspergers tend to have this problem!

Well it is a bit of a relief and some comfort when i realised this could be the answer to my personality problems. I thought i was

manic depressive with low self esteem issues and underwent counselling, that was a few years ago and stopped it.

Well I live in east London in my mid 40s and had an identical twin brother, who sadly passed away in 1993. We both acted similar I have an older brother who is Autistic and has learning difficulties. My sister is a psychologist/counsellor and said autism could be a family trait but its not a mental illness but behaviour condition. She advised me to speak to my GP and asked to get referred to a specialist for diagnosis. I am going through this at present, but it was delayed because i have moved and my previous GP say i am too far and have to re register with a local GP.

Whilst waiting for the diagnosis i have watched youtube and read stuff on the internet about it and treatment. I have started my own 'behaviour therapy'. I have decided to dress a bit more loud and flamboyant in formal dress top hat tails, cane, gloves etc when i go out. What i have found people especially women come up to me and asked to be photographed with me! /i even found i was getting free drinks and big ups by the promoters and djs! When i am dressed like that i seem to have apermanent grin on my face and have an effort to prevent myself from bursting out laughing! People tend to be happy and jolly to me now and i have noticed this. I usually have a miserable screw face! Maybe the reason was i keep thinking, women will find me too weird or boring, I will make myself look a fool, or people think i am a clown who dances wild because he is on drugs etc

Well if you all have not fallen asleep by now this is my introduction. Its good to meet others in a similar situation with the condition

[Mihaela]

Welcome, Templek!

 

Go out wanting to be centre of attention is all part of it

I wouldn't see this as typical aspie behaviour, but I do know a couple of aspies like this.

I thought i was manic depressive with low self esteem issues and underwent counselling, that was a few years ago and stopped it.

AS is quite often misdiagnosed as manic depression. Low self-esteem is typically AS.

I had an identical twin brother, who sadly passed away in 1993. We both acted similar I have an older brother who is Autistic and has learning difficulties.

These facts alone strongly suggest you're an aspie. Could either of your parents have AS?

My sister is a psychologist/counsellor and said autism could be a family trait but its not a mental illness but behaviour condition.

No, it's not a mental illness (although it may be accompanied by mental illness), but nor is it simply a behaviour condition (which would include OCD, phobias, personality disorders, etc.) but a pervasive developmental condition that affects behaviour in many ways. Being pervasive it's hard-wired, it can't be changed - or least it can only be changed in small ways, and we can learn to live with it better..

She advised me to speak to my GP and asked to get referred to a specialist for diagnosis. I am going through this at present, but it was delayed because i have moved and my previous GP say i am too far and have to re register with a local GP.

That's a nuisance. I'd recommend the same. You need to be referred to a specialist on autism spectrum conditions, and don't let your new GP fob you off. There seems to be a reluctance to refer adults for diagnosis due to NHS cost-cutting,

I have decided to dress a bit more loud and flamboyant in formal dress top hat tails, cane, gloves etc when i go out.

Oh, just a bit more. That's a relief. You'll certainly get noticed!

What i have found people especially women come up to me and asked to be photographed with me!

I bet! You should post a photo of yourself in your full costume.

People tend to be happy and jolly to me now and i have noticed this.

Brilliant! This is one way for Aspies to cope with the NT world. Many clowns are/were probably aspies. Most eccentrics are too.

Well if you all have not fallen asleep by now this is my introduction.

I don't think anyone would fall asleep with you around!

[templek]

Re my parents. As stated my Dad was over strict and a bit of abully.

He was a bully and we could not talk to him or get advice from HiIm it was like living with a stranger or headmaster. It also hurt him that his own children were too scared to talk to him and that made him bully and beat us more, always cuss us in front if people, or believe other side first if we were in trouble or in a dispute , to get back at us. We could not speak or make noise if he was around. ThaT alone causes low self esteem Plus I always thought he was a bully to tough us up because he saw me and my two brothers as wimps the opposite of him. My older brother has learning difficulues and autistic and needs to be looked after That didn't work or help either growing up knowing we were not like him. I have three sisters who were more respected among their peers when growing up and perhaps were not impressed by us!

 

My mother did not have any mental issues untill a few months before she died of cancer when i was 18. The cancer had spread to her brain and she was acting the total opposite. She was a very quiet private person and i never remembered her raising her voice to my father till then, no doubt responding to his bullying ways. After her death the family left home but i stayed with my father, he nearly went off the rails, remarried a woman from overseas which went wrong, I tried to build some kind of father son relationship and no doubt prevented him from going off the rails. He died in 1995

 

It was not always nice being an identical twin. Being constantly compared with each other had its pitfalls. Also it led to self esteem issues. Some people who did not know I had a twin would see my brother and he did not know them would think he was rude and blanked them. The next time they saw me they would not speak to me. Or if they saw my brother acting silly they would think it was me and would not want to associate with me. The same thing happended to my brother. This made me more withdrawn and paronoid.

 

My twin brother got involved in a religious cult, David Koresh's Branch Davidians. I tried talking him out of it but he was brainwashed. N No doubt, People with low self esteem issues often get drawn into religious cults because they dont believe in themselves. He was unfortunately one of the 70 Britons who lost their lives at Waco in 1993.

[Lessa]

Re my parents. As stated my Dad was over strict and a bit of abully.

He was a bully and we could not talk to him or get advice from HiIm it was like living with a stranger or headmaster. It also hurt him that his own children were too scared to talk to him and that made him bully and beat us more, always cuss us in front if people, or believe other side first if we were in trouble or in a dispute , to get back at us. We could not speak or make noise if he was around. ThaT alone causes low self esteem Plus I always thought he was a bully to tough us up because he saw me and my two brothers as wimps the opposite of him. My older brother has learning difficulues and autistic and needs to be looked after That didn't work or help either growing up knowing we were not like him. I have three sisters who were more respected among their peers when growing up and perhaps were not impressed by us!

 

You must have suffered very much, I'm really sorry to hear that!

 

My mother did not have any mental issues untill a few months before she died of cancer when i was 18. The cancer had spread to her brain and she was acting the total opposite. She was a very quiet private person and i never remembered her raising her voice to my father till then, no doubt responding to his bullying ways. After her death the family left home but i stayed with my father, he nearly went off the rails, remarried a woman from overseas which went wrong, I tried to build some kind of father son relationship and no doubt prevented him from going off the rails. He died in 1995

 

Again this is very tragic... my condolences!

 

It was not always nice being an identical twin. Being constantly compared with each other had its pitfalls. Also it led to self esteem issues. Some people who did not know I had a twin would see my brother and he did not know them would think he was rude and blanked them. The next time they saw me they would not speak to me. Or if they saw my brother acting silly they would think it was me and would not want to associate with me. The same thing happended to my brother. This made me more withdrawn and paronoid.

 

My twin brother got involved in a religious cult, David Koresh's Branch Davidians. I tried talking him out of it but he was brainwashed. N No doubt, People with low self esteem issues often get drawn into religious cults because they dont believe in themselves. He was unfortunately one of the 70 Britons who lost their lives at Waco in 1993.

 

I think the religious cult thing is a very typical path people with low self-esteem follow, unfortunately. But how much can a person endure in their life? A third time, I'm very sorry and well done you for getting so far!

 

Welcome to the forum!

[Mihaela]

He was a bully and we could not talk to him or get advice from HiIm it was like living with a stranger or headmaster. It also hurt him that his own children were too scared to talk to him and that made him bully and beat us more, always cuss us in front if people, or believe other side first if we were in trouble or in a dispute , to get back at us. We could not speak or make noise if he was around. ThaT alone causes low self esteem

What a horrifically vicious circle. Any child would do well to escape undamaged from that. He seems to have behaved like a typical authoritarian Victorian father - pathologically obsessed with control and his own imagined superiority. How did he manage at work? Was he a military type?

Plus I always thought he was a bully to tough us up because he saw me and my two brothers as wimps the opposite of him. My older brother has learning difficulues and autistic and needs to be looked after That didn't work or help either growing up knowing we were not like him. I have three sisters who were more respected among their peers when growing up and perhaps were not impressed by us!

 

He was the real wimp, using his bullying to mask his inadequacy. 'Toughening up' - a notion almost exclusively applied to boys - is very much a throwback to Victorian male-dominated values. You and your brothers have clearly inherited the autism, and no amount of 'toughening up' would be able to 'cure' it. In the past I suspect many children with autism (especially AS) were treated as wimps. Those forced to fight in war ended up either severely damaged or being shot as 'cowards' or deserters. It makes me so angry! I hope you get on with your sisters now.

 

My mother did not have any mental issues untill a few months before she died of cancer when i was 18. The cancer had spread to her brain and she was acting the total opposite.

How sad - a horrible illness. I had an online friend who had a brain tumour. His personality changed in a similar way - from a gentle, thoughtful person to aggressive and impulsive. (This and head trauma are causes of late-onset personality disorders). He'd tried everything to stop the tumour, and the last I heard from him was that he'd ordered snake venom. He probably died soon after that message.

She was a very quiet private person and i never remembered her raising her voice to my father till then, no doubt responding to his bullying ways.

The poor woman was probably too scared of his domineering ways. Is it possible she was an aspie?

After her death the family left home but i stayed with my father, he nearly went off the rails, remarried a woman from overseas which went wrong, I tried to build some kind of father son relationship and no doubt prevented him from going off the rails.

I admire you for helping him, despite the way he'd treated you as a child. Many would have abandoned him.

It was not always nice being an identical twin. Being constantly compared with each other had its pitfalls. Also it led to self esteem issues.

 

I have twin cousins who have all the classic aspie signs. If one twin is on the autistic spectrum, it's very likely that the other one is too.

 

Some people who did not know I had a twin would see my brother and he did not know them would think he was rude and blankedThe next time they saw me they would not speak to me. Or if they saw my brother acting silly they would think it was me and would not want to associate with me. The same thing happended to my brother. This made me more withdrawn and paronoid.

 

This never happened with my cousins for they were never apart. They still do everything together and share the same house.

 

My twin brother got involved in a religious cult, David Koresh's Branch Davidians. I tried talking him out of it but he was brainwashed. N No doubt, People with low self esteem issues often get drawn into religious cults because they dont believe in themselves. He was unfortunately one of the 70 Britons who lost their lives at Waco in 1993.

 

So sorry to hear that. Yes, you're right about the attraction of cults to people of low self-esteem. I feel that all organised religion causes more harm than good, e.g. wars. We can be highly principled without the need for religion. Religion attracts all kinds of vulnerable people, and I can see how easily it can draw us in. I'm sure many aspies join cults and religions simply because they desperately want a social life. With me, the total lack of logic common to all religions, their inflexible rules and dogmas, the idea of worshipping a man in the sky, etc. puts me right off. I question 'too much'. Yet, none of this means that I don't have a 'spiritual' side - I do.

[templek]

As a twin we did not like being together, because we hated the non stop comparing and quickly got bored of fooling others and dressing the same, we stopped doing that at school! probably self esteem issues at work if you are known as those stupid twins, always making a scene, and playing in up in front of people, you dont want to be reminded by seeing each other. But that was at school. However we were the closest to each ohter and only one who could help each other or understand ourselves. I, was deeply affected by his death, and at times it served to remind me of playing up causing a scene when we were young and endless bad memories. It was like we had not changed or moved on with age. His death just rubbed it in once more creating more esteem problems. I tried to avoid people i went to school with out of shame of what happened, but i was beating myself up, most were understanding and not being spiteful or rubbing it in as i thouight.

[templek]

my experiences of relatiionships

 

 

The father of my very good female freind asked why didn't I marry her. We became like friends good to share info but not suited to relationship a bit like how I got on with another close female freind of mine, whose chidren call me uncle and every father's day send me cards and presents! That is very touching. All that was Asperger's and I didn't realise it. Another thing my two women friend's say is that i dont like making physical contact like hugging, especially when i come back from a trip and they are happy to see me. Another thing in my last relationship i shared the same bed with the woman but never touched her sexually in over two years. She found that weird and said i was only guy who never pestered her for sex. and i kept saying how i preferred women with adifferent shape to hers. That was a bit weird, i thought it was me going through a self destructive reckless phase but could be aspergers?

I told my freind's dad that my big fear I would be one of those old men who always live by themselves and never gets married. That could be Asperger's again

I don't bother talking to women anymore. I could be a good tour guide cab driver etc who can rattle on endless info about the history of places but be very boring on a social level

She said: 'I like those chats. I never find them boring'

That is feature of Asperger's you have detailed info but weird or boring on social level. I simply don't know how to get dates even on dating sites. Women usually don't want to meet or after first meet stop contacting but my mates and cousin say he women keep pestering them to meet up for dates or sex! My mate was chatting to a woman all night in a club when she was leaving she went in toilets as stuffed something in his pocket . He showed us in the car, it was her panties! That never happened to me. they are still in a relationship by the way

Maybe I am reserting to how i when i was younger? If women approached me i simply assumed, especially if they were attractive that i was not 'cool' enough to get girls like that, again self esteem issues?

Would it work having a relationship with a fellow aspie? Someone suggested this. However My last relationship i was with a woman who was my mirror image in interests and personality. My cousin actually told people they both act the same that is why are together. Strange it was like having a twin again. ANd the same thing happened. We kept arguing, just like my and my twin brother. We were best suited as freinds/soul mates, or buiness partners but not in a relationship

[templek]

I had a visit to my local NHS hospital psychiatric unit in Waltham Forest for Asperger's diagnosis. The psychiatrist I saw said I have the symptoms and he is referring me to Dr Riordan a consultant psychologist who will arrange therapy and runs self help groups. Yes a weight has been lifted from my shoulders

[Mihaela]

Congratulations! I know just what you mean when you say a weight has been lifted off your shoulders.

I hadn't read your previous post until just now. So much of what you say reminds of my own experiences. I'm asexual (not unusual among Aspies), but the pressure to be 'normal' imposed upon me by others forced me to attempt the impossible. I soon discovered that I wasn't suited to 'normal' life in that way - I just couldn't enjoy intimate physical relationships, get married, have children, etc. In the way of conversation there's nothing I like better than discussing my special interests. Smalltalk soon bores me, and after a while the stress builds up and I have to escape. As for dating, I gave up on that game many years ago, and I'm glad that I did.

[templek]

Thanks for your kind words. Now does anyone know how they treat a middle aged adult near 50? is it group discussions to become more aware of negative triaits of AS you may have? ie lack of eye contact, apparent rudeness, liack of empathy, facial experessions etc etc or try to get sufferers to learn to live with and and accept? the aim is not to 'cure' but to 'treat' or come to terms with it?

[Livelife]

There are both positive and negative aspects to this.

Firstly there is no treatment it's about managing and learning to adapt to any given situation, personally I did not find that it made a great difference to how my life was but I did gain a lot of insights realised the strengths that could be developed and above all I didn't feel so isolated.

After diagnosis I was invited to a group session once a week for six weeks, there were six of us there plus two councillors, even though it wasn't large numbers talking about yourself with others I found a little intimidating and by the time I was getting more comfortable with attending the course was over.

The main obstacle isn't Aspergers the real reason we have so many difficulties is because of the lack of exceptance by others in any situation. When things are adapted to our personal needs then we can achieve but within work environments and society this isn't always the case so our concerns are equally generated from outside sources as well as ourselves.

Don't expect to find the answers to everything it helps in your understanding and there is a lot of information that you probably didn't know before but excepting the fact we have autism and trying not to resent it will be the greatest benefit.

Life will go on the same or it did for me how things improve if they do is due to just excepting the help offered take small steps don't believe there will be dramatic changes and people will somehow react to you better or you will suddenly dispel all your limitations.

Compared to children there is very little help for newly diagnosed older people because as I was told once you managed up to now why do you need a diagnosis just get on with things and forget it.

I feel I am being a little negative here but I think it's about reality than an ideal solution, don't expect too much or you will be disappointed. Have no preconceived ideals just go to the meeting with an open mind and the intent to get everything you can from it, it's my experience that there are no miracle answers so deal with things carefully and build on them one day at a time very slowly.

[Mihaela]

The main obstacle isn't Aspergers the real reason we have so many difficulties is because of the lack of exceptance by others in any situation.

Compared to children there is very little help for newly diagnosed older people because as I was told once you managed up to now why do you need a diagnosis just get on with things and forget it.

I agree with you, Livelife, but I must emphasise that at least as far as all my difficulties are concerned, they have always been made so much worse by insensitive and ignorant treatment by others - especially those who should know better, such as teachers and petty officials of all kinds. This awful lifelong experience has naturally made me very cynical of the NT world. Most neurotypical people are perfectly capable of understanding us and making the (very minor) adaptations necessary. What I can't understand is why so few of them even bother to try.

 

Whoever told you that was wrong! For many of us have been reliant upon decades of support from our parents, who rightly still saw us as children in many ways. When that support disappears - suddenly and tragically - we are left not only grieving, but also stranded in the same barely-capable state as those very children who get so much help, simply because of their age. This is flagrant age discrimination, and is so unfair!

[Livelife]

I agree with you, Livelife, but I must emphasise that at least as far as all my difficulties are concerned, they have always been made so much worse by insensitive and ignorant treatment by others - especially those who should know better, such as teachers and petty officials of all kinds. This awful lifelong experience has naturally made me very cynical of the NT world. Most neurotypical people are perfectly capable of understanding us and making the (very minor) adaptations necessary. What I can't understand is why so few of them even bother to try.

Whoever told you that was wrong! For many of us have been reliant upon decades of support from our parents, who rightly still saw us as children in many ways. When that support disappears - suddenly and tragically - we are left not only grieving, but also stranded in the same barely-capable state as those very children who get so much help, simply because of their age. This is flagrant age discrimination, and is so unfair!

I've developed a very unhealthy distrusts for people including those that are supposed to be able to support and help us with our diagnosis. If you begin to trust somebody they will try to always get you to do more or improve in areas that's it's impossible to do actually do. I think they believes it helps and somehow you will overcome and deal with whatever the issue is but they are forgetting one important point. How we are is directly related to how our brains function due to autism there is no cure we can't be healed or made better if that's the way to describe it I'm not sure it is.

When you can't manage it they seem to believe you should be able to do it and try to make you feel bad because you can't do it. If it's not intended then I feel bad anyway so the results the same it doesn't matter if it's intended or not.

When I was younger I trusted more and was a lot more gullible but that has improved a little because I don't trust anybody so the chances of being used are less than they used to be.

I would like to trust people but I can't there's nothing I can do about that years of being hurt and finding out how you have been used long after the event has made me into this distrusting person and I find it very difficult to try to change.

[Mihaela]

If anyone expects that of me, I'll remind them that I'm on the spectrum and that they need to understand the basics of what that means. If they can't, then they're in the wrong job. It's like expecting someone who's blind to learn how to see.

 

I've always been quite gullible when it comes to people, especially 'authority' figures, but in recent years experience has taught me to trust no-one, although it's against my nature and not easy. It also feels so wrong that so many people are out there to deceive and exploit me. Naturally, my opinion of the NT world is based upon how it has treated me, but also on how it treats all disadvantaged people and animals too. It has an appalling track record of inhumanity and selfishness, yet they have the cheek to see us as the ones who need to 'improve'!

[Livelife]

I'm afraid I can get very upset when this happens to me and sometimes very angry being treated in such a way then they claim I am in the wrong for reacting to them because of the treatment of myself.

I will remember that retort about expecting a blind person to see but I know a lot of people will say that's a disability this is in your own head get over it. That's why I get so angry they just don't understand.

[Mihaela]

My feelings exactly. I've had to suffer many occasions where that has happened, and it's horrible and so unfair!

Let's look for another analogy then. People with severe learning disability. NT's never tell them they'll "get over it", or even expect them to. What about people with Down's syndrome? Having a dismissive and judgmental attitude towards them would rightly be seen as discrimination. Ironically, autism is the only mental condition that has its own government Act - the Autism Act. Is it really worth the paper it's written on, when even public bodies flagrantly ignore it? It makes me so angry!

I feel the NAS should be far more vocal about the appalling way that adults on the spectrum are being treated. If not them, then maybe we should think about organising to fight for our interests. Instead of relying upon support from NT organisations we'd be much better off offering each other any support we're able to give. We all have our various talents and maybe they could be put to good use in helping one another.

 

I'll end with this quote from the Âutistic Ûnion:

"The dehumanisation of people through our disability and services system needs to change and it can start with this one simple step. We are often seen as a number. A file on a desk and a project but we are people; a people who often have to place our lives into the hands of complete strangers where trust and relationship is not considered important but for effective outcomes this should be the first priority not a second thought".

Edited June 8, 2015 by Mihaela

[Livelife]

That is another good way to look upon how Autism can be seen by some people, I don't believe that a lot of things that come from government are worth much in any case.

It doesn't matter what issue they are referring to it's only as good as the enforcement and from personal experience very little is done to ensure its enforcement especially in the workplace where the majority of my experiences were founded.

Company's and NT know a lot of the laws they have to but the very first word they use after any points have been discussed is BUT then they go into the reasons why certain things don't apply or can't be installed into our needs it's always the same.

It would be a good thing to be able to represent ourselves a little more but the very reasons I need support are in the area of communication and speaking in groups of people is certainly not within my area of compatancy so I do wonder how effective I would personally be in any such venture even though I would be fully supportive of this course of action.

[trekster]

Welcome templek and hope you get your diagnosis and some post diagnostic support soon.

 

I ended up with PTSD as a result of the abuse suffered at the hands of my 'father' only got recognition and a diagnosis last December so can empathise with your situation.

Edited June 11, 2015 by trekster

[templek]

I was officially diagnosed with having Asperger's Syndrome three days ago. The consultant psychologist said he will be putting it in writing, so i can notify any interested parties, and advice me on the next step, regarding further counselling/therapy etc. One thing, he did not refer to the condition as 'Asperger's Syndrome' but as me being in the 'Autistic Spectrum'. He said the latter is the way it is described now by those working in the field

 

Well a big weight seems to be off my shoulders.Well it would seem i can now see reasons/explanations to my life and growing up.

[trekster]

Congratulations you are officially on the autism spectrum. Hope your diagnosis helps.