Getting the message out 'Autism in our own words'

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

Parents
  • 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.

Reply
  • 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.

Children
  • Hi Lonewarrior

    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 .....