Getting the message out 'Autism in our own words'

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. 

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

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

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