First of all I will state this is not a survey just to reassure moderators.
Inspired by the Chris Packham Programme, and by some answered to that thread about non celebrity autistic people plus some things in another thread about life histories, I think this could be very useful for both neurotypical and autistic people.
What I am thinking of is if a book could be published with each chapter being someone's life story. It would incorporate earliest memories, our background, experiences at school, academic achievements and failures, misunderstandings, the realisation that neurotypical were a bit strange, experiences in the workplace or of being out of work, the skills possessed and our interests, how others try to change us, the disrespect we often get - I'm sure you get the idea.
Am I the only one who would find this very interesting? I have no idea how this could be brought to the attention of a publisher, or what forums would be available to tell our extended stories. Even an online publication could prove interesting.
We all have a different story to tell, linked by our common condition so there would be differences but also some similarities. Psychologists who diagnose probably are aware of all this but as a means of comparing notes and informing others this could be as valuable as any number of academic papers
I've meaning to write something similar, but I've never got round to it. And my life has been so embarrassing at times. I dare not tell the whole truth. And I have skeletons in my cupboard.
Hi the idea needs taking further in my view, so much misunderstanding is not good.
It would also give those just finding out about autism something to consider.
I would not be offended if a researcher looking to do such as you suggested took all my posts and made them available for those looking for an insight into the journey I took.
I Tried to keep this short and to the point but as usual rambled on to get across a point.(see below!)
Like most members on here I joined looking for answers, I had to idea what I was after specifically, I just poked my head in the door looking to see if it was a group I would fit into and belong.
I never have fitted into any other group apart from single specific types, liking one specific car marque was reassuring as attending a group means everyone has a shared interest, it got tricky when everyday life started creeping in, complete differences in perspective on religion,politics etc, The forum I belonged to had a “ lounge section” basically non car related discussion, Always trouble wether it be a joke that upset some one or constant bickering over opinion.
I am still travelling a journey,still seeking answers, trying to find me, The longer I spend the more I see I am so much like many who did the same.
Starting with no understanding, lots of ups and downs, fear,happiness,it’s as though the journey has to be gone through until such time an acceptance is found,
I have a long route ahead of me still! Maybe still difficult areas to get through, I know that despite how low I get(quite often) I will rise again once I have dealt with it,
The support from fellow members who have travelled the road before is so reassuring and kind,
I hope to try and do the same one day.
I am at a stage I feel I should stop beating myself up and start dealing with the future, it will mean slipping back to the character I was,not me! The new me is causing issues all around and doesn’t seem to be wanted or understood,
At least I can carry on life with the knowledge I have reasons for my life and maybe how I coped.
Each of us has a unique story and fragments constantly appear on here,
sorry for the long reply but just another part of the real me.
Thank you for your reply.
Like you, I have ghosts from the past haunting me. A lot of which I have not told anyone about. If such a thing came to fruition, I would obviously have to think about what to include, whether some things were too personal. But a lot of books are written under nom de plumes, and I see no reason why the real identity of anyone would need to be included.
What would matter is that the stories were genuine, they were written from the perspective of the autistic person, they would include events from the past which the writer thought helped explain how he or she felt. I would not think it had to be a dull read, even in my darkest times there are elements of joy and genuine humour which;I hope would shine through. Perhaps this could be started by writing our own potted histories for our own use and seeing if it would look interesting. I know I wrote one for my diagnosis which would make the basis of my contribution.
Read any autobiography (and they are mostly written by a ghost writer) and they take a certain form ... where the person was born, what the parents were like, early memories, friends, ..... and what I envisage would not be much different. It would be a lot snappier, since I would only envisage 5000 to 10000 words on each account as a maximum and less if the person could fit in their relevant points. And obviously it would need editing, but all books are edited anyway.
As I said, I would have no idea at all about how to set about getting such a work published ... I am not the sort of person to tout stuff around from publsher to publisher in the hope that someone would take it on. There would be a lot of work in getting a sufficient number of people to contribute - just my potted history on its own would not provide sufficient usefulness although I'm sure somone may find it interesting. But as part of a work... well it would be interesting to compare parallels and contrast the differences. In the journey of life, I am still travelling down blind alleys, finding new destinations, and taking new turns, not always to places I want to go.
Fragments of my story have appeared on the forums here. But they are fragments with no real cohesion with the me that I know - the me that is hidden behind the mask. The me that is a real problem to the neurotypical brain (they do not like something different). And I don't; think of being autistic as a puzzle - it is not something to be 'solved' but something to be accepted and understood.
Which is the reason for my musings about this .....
Hi everyone. I think this is a very interesting proposal. I have certainly benefited from reading the autistic biography of others. Like Trainspotter I wrote down my experiences and handed (14,511 words) to my psychiatrist. Of course, I doubt she read it through but I think some of it was a basis for my diagnosis. It poured out of me in only a few weeks. And as you could imagine, I feel I only scratched the surface.
A book may be too limiting. Perhaps a website like Kim's musings of an aspie? It would be a collection of short stories, written by people on the spectrum for those looking for answers.
Maybe the stories there could eventually lead to a book?
Yes, a website 'multiblog' would also be a possibility.
I am of the old school who likes something in my hands ... find it a bit difficult to read web articles or e-books I like the printed word. But the most important thing would be to get the stories told.
A web blog would need a bit of setting up and moderating to ensure that the spirit of the idea was complied with ... I do not envisage it to be some sort of forum like this one, it would be stories from the heart, and preferably with a lot of snippets, humour, and personal experience that we have of being autistic, from earliest memories to the present and also perhaps looking forward to what we would expect or hope for in the future.
Some sort of 'Format Sheet' might also be useful to give ideas as to what to include. And with a web blog, each person could have their own 10000 words: eg 'Trainspotters Story' ...etc.
I don't particularly want to 'take over' the idea, but would be willing to have a go. But I don't have any experience of putting together such a blog so if someone else did it I certainly would not object. I would just like to see something get off the ground, knowing that it could be a few months before the first stories started arriving ... provided there is the interest of course!
Hi, I'm new here, I only just found you today. I only recently got diagnosed with asperger's syndrome, but I prefer to refer to it as autism and I would love to get our stories out there. It's so frustrating to me that even my family don't want to know about me. My sister said it's just a label, don't identify with it, other friends have said the same. I have devoured as much information as I can about autism, so I can learn more, so having a book with different people's experiences would have been so good for me.
I think it’s a great idea, as a parent of a youngster i am desperate to know more from people that have been through early life, to know what is / was hard, what helped them, what they loved, found hard and why.
Worried parents read a lot (well I do) I want to understand and help my son through life, we are the ones that can learn through your experiences.
The more we know the more we can help the little ones just starting out.
Absolutely, I couldn't agree more with that and I tend to gain more benefit from the personal experience of others and not only that, I feel that it links us up, it gives us a community and even if we are just reading their stories through pages I feel connected and it doesn't matter what 'age' we are, we can all still learn from each other. For example, my friend taught me a little tip that she taught her 8 year old daughter and it works a treat for me and oh yes, if I can do something to help the little ones just starting out, then I will. Being autistic can be a wonderful experience, if we are aware of it and how to manage it in this crazy world and we definitely need the support of each other as we are in the minority.
I'll start on my account and intend to make it around 10000 words as suggested. We can have a blog which is really easy to set up on wordpress, it's also free, and we can easily turn our stories into an ebook that we can sell for a few quid which will help to support any future projects that we come up with. I haven't got loads of experience in this but I have set up a few blogs and websites and I'm about to set one up now and I have friends who have produced ebooks so I know I can get advice and support from them around putting the book together.
@Trainspotter, have you started working on the format sheet? ;)
I have made a few notes so far.
Really, it is just a few ideas - and the best rules are ones that can be broken if that gives better effect.
I also think that including details on how different the world was then - details which will make a more interesting read. For example (and this is that I am just putting down as I go so it is not my final version by any means:
The time I was born was a time of austerity. My parents had to struggle to put food on the table. It was a time when it was unusual for a married woman to have a job and a matter of pride for the man to provide for his wife. Houses were heated by coal fires, and few people had a television. And this was the world I entered in the early 1950's.
I was the middle of three children. My mother had a difficult time during my birth and I was born with the cord round my neck which my mother said prevented me from crying at my birth. It was soon noticed that I had a substantial squint and although I could walk very early my speech was delayed. But I seemed to develop with no problems for the first year of my life ...
I think if we planned to follow something like:
Background: Early life, what we were told about us by parents and our early memories. What were our parents like. Did our parents have any problems in bringing us up?
Difficulties - and did our parents notice something different about us and what was it and at what age did they notice- were we shy, outgoing, talkative or quiet? Did we have some habits that were socially unacceptable.
Learning: Did we learn to walk and/or talk early. How did we get on when we started school. Were we early or late starting to read and write? Did our parents 'cocoon' us or let us play on our own. Favourite television programmes, what bits of music did we like and has this changed over the years.
School: Did we excel or did we have difficulties. Were we 'difficult' at school or compliant. Were we always in trouble or obedient. Were we picked on and bullied or were we left alone. Did we 'take charge' or did we just sit in the corner. Did we have learning difficulties. What did we like or dislike. Did one or two subjects really capture our imagination. Were we ridiculed or bullied or were we the ones who had the respect of the rest of our peers. What respect did we have for authority. When punished did we realise what we had done wrong. Did we think we were misunderstood by teachers/our peer group?
Achievements: Did we do well academically or poorly. Were we good at sport. Was any special interest we had any use to us in school or later on in providing a basis for employment. Did we go on to further or higher education and was this a success
What were our leisure interests. How did these change over the years. If they changed, was this a sudden thing or did it happen gradually.
Employment: Did we manage to get a job or were we out of work for long periods or have we never got a job. What difficulties did we face getting a job. What was any feedback from an interview and was it useful.
Life: At what age did we realise we were autistic and/or were we diagnosed. How did we adapt and how do we fit in to the neurotypical world. In what way does autism affect us. What are our adult traits. If diagnosed late, how has the diagnosis affected us. Do people accept us for what we are or pity us or 'blame' us for our autistic traits. How in adult life do we interract with others. Are we quiet in company or can't others get a word in. Is our public persona really what we feel as 'us'. Do we stim, and if so how do we stim. Other calming strategies. Any other conditions we have in addition to autism. Are we nimble fingered or clumsy?
This is not to say this is a definitive list, it is just my idea of how to get a little coherence and cover some common ground. I don't think anyone should feel bound to follow it scrupulously and if anyone has their own ideas they should put them in. Basically, it is a potted life history with emphasis on how we think our autism has played a part in it. And hopefully some things would come across that we are 'normal' but 'different'. I certainly would not want everyone's story to look the same and really don't think that would happen. And I would also think that not necessarily following a chronological order may make it more interesting - reading a dozen stories like that may get a little bit repetitive.
Above all each person has a unique story to tell and their own unique way of telling it. Be yourself, take your time and add things that may not be autistic traits to make it interesting. And add humour by all means!
The final thing is I think anonymity should be respected. We can put our own personal details in if we like, but the chapters should just be by some nom-de-plume (such as we use already in here). There will be some quite personal details revealed and no one should feel embarrassed by someone else revealing their identity.
Our chapter should be our own and editing kept to a minimum, I think the 10000 word limit should apply in order to keep it snappy (it could of course be less) I would hope eventually we could get a dozen contributers or more and provide a very useful resource for everyone touched by autism. I know it would have been useful for me when I was just discovering the reasons for the way I was.