Getting the message out 'Autism in our own words'

Thank you for the link Cassandro. I read the book, which is a major achievement in itself for me right now, and I found it very helpful. One story in particular resonated with me and gave me a message I needed to hear just now. All the story's made me realise that my current situation is a result of all the masking etc and not necessarily part of who I am. Meaning, I'm still in recovery mode to a great extent and I'm certainly in discovery mode. What gets me are the days when I literally do nothing, after planning what I was going to do. My first reaction is to give myself a hard time, then I work through all that and come to the place where I realise I simply need the rest right now. I don't deal with change easily and my life is changing every day right now so it makes sense that I need lots of rest. Thank you. It was very helpful. 

This is a good idea, though obviously not the first book of its kind. Would it be just people from this site contributing?

I am in the middle of reading Melanie Yergeau's book "Authoring Autism" which contains a lot of jargon and big words so is a bit difficult to read at times but is a good book (not to mention written by someone on the spectrum). It is very interesting and relevant that the main topic of that book is the rhetoricity or non-rhetoricity of autistic people (i.e. whether we are capable of telling our own story or communicating in any meaningful way that isn't just a pale imitation of how neurotypicals communicate). Of course, any visit to a forum populated by neurotypicals, with the poor grammar and spelling and basically terrible writing, easily makes it clear which group is actually better at communicating.....

Oh, I’ll type mine up then (I wrote it in actual writing, the old fashioned way ;)), and put it on here if you’re interested in reading it although it’s not the same as the accounts I read in that book. Actually, I’m not even sure what it says at all, thinking about it, lol, when that spontaneous writing thing comes on me it’s like I have no idea what I’m writing so I might actually go and have a read of it myself! Lol’ and find out what autism means to me! 

Thanks for the link Cassandro. I started to read it but got bored and inpatient very quickly but I was also very tired so I have downloaded the book and will have another read at some point soon. I did skim read a couple of people’s accounts and got lots of identification so I think it would be very useful to have when you’re in the beginning stages of wondering, am I or aren’t I! :) 

Yes, I think this is a good idea. I'd be interested to read it, and think there might even be contributors here. If not including celebrities, could maybe just get endorsements from them to help sales.

Here's something similar that has been done, although it's short: Being Autistic. (Wasn't free originally, but is now.)

I am posting here just to rehighlight this Thread. 

Do not reply to this post, please, and then I can delete it. Please reply to the starter (click upon the title.)

I can't really do group calls but after January I'll have enough money to travel anywhere to meet up if people are up for something like that.

I'm for sure up for it though. I might not feel like working on it every day but I'm sure most days I will!

The world indeed is our mushroom ;)

It is great that there are others wanting to get involved in this.  Yes, it will take time, and there are always things that come along and we may not feel like it (part of being autistic) but I'm sure the result will be well worth waiting for.

A website going fungal --- or a million-seller book?  The world is our lobster!

That's great NAS35206. After christmas, we could maybe set up a google hang out call or something where we all get together. We might have some material by then as well.

I'm for sure interested in this but am too busy and stressed at the moment to get anything down/done. For sure after christmas I'd like to.

Also I've made a freestanding website before (not on wordpress or anything) and I'd perhaps suggest doing that as you then have the freedom to do as you please with it and the rules are your own. I would be more than happy to create a website to do so and I also have two autistic friends who are much better at it than me. It would cost a bit to host but if I formatted it simple like my other site it shouldn't cost more than £10 a year and that's if a TON of people visited the site. 

I'm also in the process of writing a couple of books so if the chosen format is a book I'd be happy to help getting it published either in a physical copy or an ebook sold via amazon or freestanding, downloadable asking for donations only that way people don't have to pay if they don't want to. 

Anyway if you want any help with any of what I offered then let me know and we could connect in a better way than this forum to discuss stuff..

Absolutely Abigail, misconceptions need to change. I almost hate myself sometimes for my ability to 'pass' and for being articulate. Ha Ha I love that you wore your wellies to a night club. I wear mine all the time but don't go to nightclubs anymore, other wise  I would like to wear them there as well. People think I'm weird for wearing wellies all the time but I would rather put up with that than having to wear any other kind of foot wear!

I've got tons of writing on my autism over this past year as I write as a way of processing things but it's all on bits of paper or notes on the phone or ipad or lap top, it's all over the place but I too am trying to get myself back into some kind of shape so I can create an income again. One part of me wants to jump back into work that is well paid, so will get me out of debt and give me some good savings, but on the other hand, I really don't want to do it. It feels like a step back not a step forward and even if I did manage to do it for a few months, how long would it take me to recover? It's a risk and if I did do that, I wouldn't be able to concentrate on eating healthy or getting my fitness back. Oh the joys! lol. 

I'm going to let this week play out and maybe next week, I will do some writing. I think it will actually be good for me, it might clarify things in my mind and make things clearer so I know what support I need. I could do with more income but at the same time I don't want to push myself into anything that I don't think is ultimately going to add value to my life. I've earned good money in the past and I believe I will earn a lot more in the future but this time, it has to be on my terms.

I can so picture us all on the red carpet though, we would look awesome and seriously, this world has to change and it needs changing anyway because most nt's aren't that happy.

Trainspotter and BlueRay I couldn't agree more! Weirdness is awesome! I literally went to a night club in my wellies once. Was dragged there by a friend and refused to change in protest. Most people thought it was funny!

It's great if some of you feel ready to get started on some writing. Although like you BlueRay I'm not up to it just yet. I have written around 15000 words of reflective dribble leading up to my diagnosis that needs serious editing and re-writing. But as I'm focused on job applications I don't feel it's something I could achieve this side of Christmas.

For validation for ourselves and to help the youths out there. I also don't "look autistic" and to some may even appear NT.  This common and imensly frustrating  misconception needs to change!

Yes BlueRay, I take your point we are not 'ordinary' from the sense of a neurotypical.

But to me, I am ordinary.  Everything I do is 'normal' to the person who inhabits my body.  However, what I meant was that I am ordinary in that I am not a celebrity and not famous.

I remember a few years ago hearing a radio story, a traditional tale from Russia.  In this, there was some sort of prize for a competition of the hand in marriage to a princess.  And the person who won had been coming out with ideas that everyone in authority thought were strange, impractical and outrageous.  But when he won this competition (it was some sort of lottery) and got the hand of the princess, the people who had thought the ideas strange suddenly found that they made perfect sense.  And I think there is a lot of truth in this. 

Those in control will always have the monopoly of 'good ideas', not because their ideas are any better than anyone elses but because they are in control.  To me this also sums up people's attitude to autism. We are generally not the ones in control of other people.   It is only when the system collapses, or solutions need to be found to problems that are too complex for the neurotypical mind that the beauty of a solution offered by the autistic mind gets a look in.  Neurotypicals have used their power to bully us throughout time I am sure.

You have also hit the nail on the head regarding why it is important to get our stories heard.  We do need to show the way we have been treated, our needs ignored, that we have been the victims of bullying, that we may have achieved well academically but our skills underutilsed, the fact others haven't understood.  If the project succeeds it will make people think, show them the hell we sometimes go through, but also the sheer joy we can get from persuing our interests. They will show the difference amongst us but also the similarities that bind us together.

And most importantly show to other autistic people as well as their families how we may have pulled through despite all our difficulties. I certainly do not want a 'cure' for my condition!

I don't feel like doing anything just now, I'm feeling tired from a busy few days, but I would sincerely like to do whatever I can to help others in this situation, particularly those who haven't yet got a diagnosis. I was speaking to the nurse today and she said they think her brother is autistic and when she told me, I would say he definitely is but because of the stigma, he won't go and get tested but I know things won't get easier for him without help. 

And hey, why not us all on the red carpet in all our weirdness!!!! :-D We'd make a far more interesting line up than the celebs, especially if I wear my favourite outfit of wellies, pyjama bottoms and t-shirt! I would add as well that we're not ordinary people, we're not more or less but we're definitely not ordinary and we have to get our voices heard so the little ones don't have to go through what we've been through. I don't know what any of you lot have been through but I know I have been through a lot of **** that I can now see could have been avoided. I used to think everything happens for a reason and has a meaning blah blah blah and I don't think that anymore, I could have avoided a lot of situations and I don't know if things would have been any better for me had I known earlier but if I can help to make someone else's life easier, then that would make all my troubles worthwhile. I look, talk and 'pass' as a nt but I'm not, and it's about time people realised that and realised that just because we're not, it doesn't make us less than but the world is not set up in our favour so we need our voices heard.

I don't know what that 'connect' button on our details page actually does, but if anyone wants to 'connect' with me who is interested in this topic, please do so.  I don't think it is like facepack!

I am quite excited about this project - first the blog, then the book and film rights, the red carpet treatment, the fame and fortune, and who will play me in the film .... !  Or perhaps not!  It is just ordinary people telling their stories, and probably far more interesting than any 'celebrity' biographies. And something to keep me occupied for a few weeks!

ok Trainspotter, first things first, you've inspired me, I'll start by starting my story also and as I go, maybe some ideas will come about for the blog or what our next steps will be but yeah, we definitely can get something to come from this for sure. Let's do it

I am about to start my 'chapter'.  Give me about ten days to a fortnight to get it down and go through it a few times.... and then it will be ready to inflict on the world.

Many thanks to all those who have given their encouragement to this.  I know how difficult it can be to start something like this and get it started, so if anyone is preparing their story, don't worry about how long it will take you.  The main thing is to think what you want to put in, write it down and then go through it, read it to yourself and see what you think.  This is not a 'critic' exercise, it is stories from the heart.  It is our way of explaining to the world - I expect the stories will include a whole gamut of emotions - for that is what autism is about.  And please everyone continue to express your interest and give your feelings about this project.

Blue Ray - if you want to set up a web blog for this let me know and start it off.  I don't know how it works with putting different peoples work on - is there some sort of moderation for this?  And how to take other people's stories will be another thing to think of, but that is the easy bit - getting the material will be the most difficult.  But I'm sure we can get something to come of this.

Let's get started! 

I

This list is great! Thanks Trainspotter for doing that.  I think having a common structure is important to start with and you're right, it'll change naturally with each story. 

A word limit is a must. I have to say, it would be difficult for anyone to keep it relatively short.

This is exciting! 

WoW Trainspotter, this is amazing, I love every word of it and some of your pointers, really touched deep in me, they're really good pointers and I agree, they can be used as a kind of lose structure with pointers and reminders or not used at all, that's perfect, someone will have their own unique way of expressing their own unique experience and that's perfect, as you said, it will make for more interest as well. Reading blogs and listening to youtube has been like a life line for me over the last 12 months, I honestly don't know what I would have done without the experience of others. I got a bit too obsessed at one time, of course, but it was such a comfort to know that I could turn on youtube at any time and listen to someone else who is having a similar experience and when I needed that comfort, that's exactly what I did. So I am all in with this and what you have written is everything that I wanted to say but couldn't have said it any better. I'm newly diagnosed and its so important to me to tell people about autism, not just other autistic people, but nt's as well but I understand that not everyone wants to know, and that's fine, I accept that so wont waste my time but having it written is so good because people can read it if it will be of benefit to them and leave it alone if it's not. This is really good, and your pointers have certainly got me thinking. I might just write mine and then reflect and reflect in light of your pointers. Anyway, what you have written is great, really great. I don't think I could have said it nearly as well, I'm a prolific writer, but only in the area of my special interest, of course ;) I'm so grateful for all the people who have taken the time so far to write their stories or talk about them on youtube or wherever because without them, many of us would be left without a clue as to what to do etc, they've helped me so much.

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.