Biographies
'Jake's Story'
Hi, not sure why I'm doing this . I don't usually have anything to do with AS stuff but my mum sent me this. I don't know how it got onto her radar and why I let it under mine .. I usually bin such stuff quick but...
I got hooked in by the stuff on suicide and depression then moved onto Finn's story and thought geez that's sad. But it was the letter he wrote that got me. I thought I could have written that and he wrote it weeks before his death. That got me thinking about As and I don't do that often . It pulled up lots of memories and made me aware of how good life is now but maybe also how precarious that is.
To start at the beginning...
Well I'm a one off, the only child. Don't know why. I think it might have something to do with my Dad. He's not a child person but then he's not a people person either.
All I know is that we seemed to roll along quite well for a while when I was a little kid. My earliest memories are beside him at the computer..games, just messing . Not a lot of talking but I was so good with computers by five they didn't know what had hit them when I started school. Starting school was the high point of my educational career. Within a day or two I was bored. Everything was moving so slow but then when you did get into something some bell would go or another kid would muscle in. Somehow I seemed to be getting grief all the time either off the other kids or teachers.
Don was good, when I found him we paired off and went into our own world. Without him school would have been hell. But then school did became hell when his family moved and at 10 I was on my own again. The next two years were truly grim. I learnt to be a good runner, it was the only way to survive beyond the school gates. That didn't stop me getting pasted a few times. An arrogant sod they called me but then the teachers had their own word for it. Attitude, didn't like my attitude. Why didn't I look at them when they spoke ? At twelve it hit me that I didn't have to put up with the aggravation any longer. I just simply stopped going. Stashed some day clothes in a hideaway, changed and told any one who took too much interest in me that I was home schooled and out working on a project. It didn't last long. That's when the rows started , my mum crying, saying I would end up in care. The endless trail through pyschiatrists. They came and went. All I needed to do was clam up and stay silent ..that wasn't hard. About fourteen I hit one who was different. He fought back with silence. We would sit together in silence, it felt quite companionable after a while. I started to talk to him a bit , not much. He suggested I might like to write about what made me angry. I told him I wasn't angry, just tired of people and aggravation. Writing was fine, seemed to make things easier. Mum lightened up. She seemed more relaxed. Then a few months down the road she started talking about Aspergers Syndrome. It made no sense to me. I wasn't the problem, the rest of the world was the problem. I still feel that way.
There's just so much madness, people are inconsistent and false. I looked at the stuff she gave me and then on the net and yes I suppose others saw me as a loner but I wasn't alone. I shared a virtual world, I had plenty of contacts they were just all on line.
Sixteen came and I couldn't move fast enough out of those school gates.
Mum didn't put up a fight, I think she was as relieved as me. Then my nocturnal life started, just crept up on me. As the questions and arguments about my future raged on I slipped into an existence whereby I could escape by sleeping the days through. My Dad works in IT and seemed to be spending longer and longer at his office. My mum only had the stamina for a few hours wrangling after work. I walked at night,listened to music, started to watch films. Slept with the dawn. Saw no one, talked to no one.
Things started to go badly, kept getting ill then depression started to take grip. Couldn't see a future, everything felt black. There just seemed to be pain everywhere and I was the cause of it.
Things came to a head when I went looking for food one night and found my mum crying fit to bust in the kitchen.
I'd never seen that before. I never realised how much I was hurting her. I didn't know what to do about it, didn't know how to help her or myself but something must have broken through a bit cause when two days later she started to talk to me about a job advertised in a local bike shop I didn't close off.
I let her talk me into going along. I wouldn't let her come in with me but she waited round the corner.
I wouldn't say my interview was a great success, I mumbled, shuffled, probably looked at my feet a lot. John must have been desperate but he took me on trial. I owe him one and lots more.
Four years on, the business has grown to four of us and I'm the best bike technician in the shop, better than John. What he doesn't know is that I've started designing in my free time. As it is I do lots of customizing and adaptions for customers. I don't really do the customer bit but I deal with anyone who wants the technical info. Through that I got in with a group who ride at weekends, they accept me as I am and value my technical skills. We speak a language of bikes ,that's fine. I've got my own place. I'm on my second girlfriend. The first I met at the Film club I started going to I didn't ask her out , we just got talking about films but it didn't go far. She liked to hangout with a crowd and I don't do well with lots of people around me.
Lou turned up on one of the rides. She's good, she lets me be and makes me laugh. She's the only one I've ever talked to about Aspergers. I think she's maybe read up on it . That's okay. She gives me grief if I neglect her . She just generally keeps me on message around other people. I don't want her to move in but I do want her to stay around . I have plans to stick at the shop for a few more years, save more, then look for some finance and either open my own shop or start building bikes.
' Melissa's 'Story
Hi, I'm going to write this anonymously . I don't want to say a lot about myself but i know two Aspie people who have committed suicide through AS related depression and i too would like something to happen so if this site helps well great.
I've always known i have Aspergers, or so it seems. I must have been an unusual child , but then what is usual? Me and my sister have always got along fine.
Anyway something must have made alarm bells ring with my mum and dad who are very cool people. Maybe the fact that my cousin has autism and is now living in supported care made them a bit more aware .
I do remember meeting up with other Autistic kids for activities and stuff. We weren't many even though we lived in a big city. School was fine. It was obvious pretty early on that i had strong artistic talent , that went down well with the teachers and the other kids seemed to admire that . I had a few 'encounters' over the years but I just put my head down and blot out people I don't want around.
I pulled out of the AS group when i was about 13. By then i had some on line AS friends and i didn't want to hang about with the little kids and my mum any more.
An Arts degree was a fairly obvious line to take. That was a good move too as , same with work, there's some strange characters[genuine and otherwise] in the Arts world so being seen as a touch eccentric was and is an advantage!
I didn't want the college to know i had an AS diagnosis but my folks snuk in behind my back and informed them. Maybe that was good as they [college]were fairly cool about the times i got stressed through work deadlines and perfection issues.
So here i am, 1st class degree, straight into a job as a graphic designer in a small outfit and living quite independently and happily thank you.
Positive suggestions?
Not sure about these. I think i have had it easy when i look over the people i was talking to on line in my teens. It helps a lot having a strong talent and being employable as i am. Also i don't seem to suffer as much as the guys with the social stuff.I have a good friend from College that i keep in touch with and we support each other. Likewise my sister.
I don't tell other people i have Aspergers. I made the mistake of doing that a few times and got sick of the homilies ..aren't we all on the Autistic spectrum ? and.. I feel like that some days ,what makes you different. ?
Well yes we are all on the autistic spectrum but believe me if you have strong As characteristics you know it.
The way I look at it is most people go into training when they're young kids. Years of playing, pretending, observing and with the occasional slap learning the hard way about how the world works , how being around people works. What to do, how to say it.
It doesn't take too long before its second nature, thoroughly ingrained and you can roll along with others without too much thought.
But how about if... for all the play and teaching you never learned to recognise the social patterns and behaviour. Every day was confusing and every day you seemed to be saying or doing the wrong things. Believe me you too would clam up or get angry and then when you hit teens and no one wants to know you then its easy to become the loner , the wierdo.
That brings its own pain and I can understand depression following on. Believe me there's a deal of pain involved in feeling uncomfortable in social situations , getting stressed about perfection and having to pretend not to mind when people stuff up your routine. Wondering if you have blown it again with something you have blurted out.
I heard a radio programme this year. They were exploring ,through brain scans, the level and source of the pain of social rejection and it was in the same area of the brain as physical pain. Which kinda makes sense because if you are not going to get along in social groups life is going to be pretty isolated and downright dangerous for your health and survival.
This is sounding grim, lets get back to the point
Positives
1] Walking ..Although I'm in a fairly large city getting out is easy so i like to head for the hills, often alone, just for the peace and quiet, at weekends.
2] Jazz, my passion and great lots of other people's passion.
I go every week , and more, to local clubs and sessions. There are familiar faces and a few i rate as friends now and the bonus is..you get to sit back and listen to the music and not have to keep on talking.
I've tried festivals but the sheer number of bodies freaks me out so sessions is good.
3] People, Just because you don't always communicate too well or seem to get it wrong doesn't mean that you want to be a loner. I know that's a big part of the pain that can lead to depression. I didn't know the two guys who died too well but from what others said they had become very cut off . One was on the streets and involved with drugs when he died. That's sad, no family backup. My mum and dad have always been there for me.
So i suppose that brings me to drugs and alchohol. Don't go there . I tried it in the first year , mostly to fit in .I just became and felt wierd.It did horrible things to my head. Sometimes i do a slow glass of wine to be sociable but that's it .Its a cheap night ! i turn down the rounds and don't offer to buy them.
4] Partners. i've had two significant ones. One at College, one since.
Even moved in with the last one but now i'm single and aiming to stay that way for a while, well maybe!
I think i've figured out what went wrong .I'm a sponge, given the chance. I might make it look like life's rolling along easy but meeting new people, new situations is all at a price. I can do it but its a strain, i often get stewed up inside. If i can get others to do the talking, the organising, the relating then fine i will just sit back and go along with the ride. I now appreciate that i cann't let the men [or anyone else!]in my life do that . I have to get out there and just meet the challenges. Aspergers is a hidden disability but then lots of other people have areas of weakness and problems. Life's a bitch in many different ways ,As is just another. The only plea i would make is more tolerance for the 'loner'.
5] Find out what suits you.
Work is fine. I like having other people around but, and this was a problem with my partners, after a day of fitting in with other people , i sometimes just cann't wait to get home , shut the door put some music on, cook and shut off from the world.!
That's me written out..no more ideas.
Take care, travel well.
Jane's Story
As I look back over the generations of our family on both sides I can now appreciate what was termed' eccentric ' as a description of various relatives may now have another explanation.
Coming as I do , and my husband did, from extended families heavily involved in academia there are various instances of highly intelligent but insular individuals . Certainly my father was very focused and communicative on his area of expertise but little else.
It was not a situation my mother was happy with but with two daughters gradually farmed out to boarding school her loneliness eventually found solace in alcohol . The gulf between my parents widened and remained unresolved up till their respective deaths.
To this day I remain ambivalent about single sex schools and boarding schools in particular. The warmth that was absent in my home was not to be found in my school.
I suppose I should be and am grateful for the emphasis that the school placed on academic achievement. My success in that area did bring approval at home and it gave me strong goals and interests to pursue .
What it didn't do is prepare for me for wide social exposure and the adult world. Consequently when I met my husband at University I was literally a sitting target.
We were both 'loners' but where I shied away from the social life my husband threw himself in with gusto. I suppose I admired that , his enthusiasm and the very obvious attentions he paid me. Failing to see what could have attracted him , flattered yet confused by his overwhelming protestations of love I , the unloved , was eventually worn down and agreed to marriage.
Only from the intimacy of married life could I appreciate that what I had took for confidence was a lonely arrogance. My husband had acquaintances but no friends. Understandable in a way as his approach was to reject and criticise others rather than have them hurt him.
And so family life began , very insular and even more so for me when our first child was born a year later. My husband had graduated well and threw himself into his work. It involved a lot of field work and trips away so having sole responsibility for a young and increasingly difficult child began to affect my health .
A second pregnancy didn't help nor did the arrival of the child , another son. Where my first child was a handful , the second was a nightmare. From the start the anguish, the continual crying , the unresponsiveness , the failure to clock up the developmental milestones caused me concern and confusion.
It took two years of reproach and misery before J was given a diagnosis of Autism. In the light of that D was assessed as his behaviour at school was problematic and giving concern . It was not a surprise to learn that he too demonstrated Autistic traits.
My husband was by now a troubled and morose man .The boy's diagnosis seemed to increase his growing depression. He would discuss neither with me and I was numb, distraught but not wholly surprised when a night visit from the police brought news of his death from a fall whilst away on a walking trip in the Lake District.
It seemed there was little lower to go at that point but somehow the realisation that now it was only myself who could determine the childrens future gave me new strength.
I poured my energies into them and every available treatment I could research. Some helped , others were worthless but just to be actively involved in improving their prospects and determined they should achieve the best quality of life possible drove me on. Through my activities I met other parents in similar situations and bonds of support and friendship developed.
After a time my health problems returned and reluctantly I conceded that J , by then nearly 10 , should go into a residential school situation. It took a long time to make the decision but now I look back on it as one of the best moves I could have made. He received such a breadth of care and education there. That was then followed by a move into a 'college' situation and now he lives a full life , in his terms , in a sheltered village community where he is able to be part of family life, has a close friend and work he takes pride in.
I visit him regularly, its a real pleasure. As for D he did struggle through his adolescent years but the pain he went through then seemed to strengthen him. His very obvious intelligence , focus and enthusiasm took him into IT work .
He made rapid progression in his studies and career but two years ago he suddenly announced he had finished with computers . After a year volunteering abroad he is now actively involved in development work and enjoying every moment.
When I consider what an unpromising start he had I can only marvel at and be so proud of his compassion, humour and intelligence.
We talk often and he makes me laugh. I sometimes reflect that , with diagnosis and understanding , his father could maybe have had a better life and lived to see his sons grow .
With both boys now independent I now work as a freelance fundraiser with a leading Charity.
I'm developing creative hobbies to balance my 'head' side and through my painting classes romance has come along so the future looks good for us all.
What to suggest:-
1] No matter how black life seems treat each day as a new and fresh experience. No matter how many times you fail , dust yourself down and try again. Though maybe with more wisdom and perhaps from a new or different direction!
Learn to accept and work with the personal issues , good and otherwise , that Aspergers brings for you.
2] After turning my back on religion I am cautiously opening the door to exploring spirituality. I have no doubt that there is a purpose to life and that what we have thrown at us , whilst often difficult, gives us opportunity for personal growth.
3] After seeing the huge changes in D when he moved away from academic work I would venture to suggest take a risk. Volunteer, challenge yourself through creativity. Look for challenges . I'm experiencing that growth and development can happen at any age.
Confidence arises from tackling challenges head on and surviving! Treat life as an adventure and you'll probably find others will be more willing to share it with you.