Getting the message out 'Autism in our own words'

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? ;)

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 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.

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.

Hi Abigail

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 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?

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 .....

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.

Interested. 

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.