Autism Novel Writing Research

[Novachels]

Hello, I am writing a novel primarily on autism and have reached a few parts in my book where I require the personal experiences of those with autism, which I will detail a little more down below. For context, I live in the UK, and after receiving my diagnosis of autism as a teenager, I had no help. I got my diagnosis, and then that was it; however, over the years, through experience and trial and error, I have learned a few things about myself and others who also have autism that I thought would be really beneficial in a book. So, I decided to write one.

If you decide to contribute, I will keep your name anonymous unless you state otherwise.

What I need:
- A personal summary of experiences surrounding how your autism presents about 2-3 sentences long from boys who are autistic.
- A personal summary of experiences surrounding how your autism presents about 2-3 sentences long from girls who are autistic.

- A summary of parents' experiences with children with autism.
- A summary of siblings' experiences with brothers/sisters with autism.

If you have any questions regarding this book, please do not hesitate to get in contact with me: [email protected]

 

[Crossbreed]

It requires a paradigm shift.
If you want to understand ASD1s, it is very similar to how gifted children are (even if the autistic person is not gifted).

ASD2 & 3 is the same, but with (one or more) debilitating encephalopathy on top of it.
https://autlanders.blogspot.com/2019/07/autism-subtypes.html

 

[Tom]

I'll do it for 1-2 presents from everybody.

 

[Outdated]

Hi and welcome to the forums. I'm glad to see more autistic people getting their voices out there, the world is a lot more understanding today than it was just a decade ago.

I'm not sure it's possible to summarise our experiences in to two or three sentences. Some of us are quite verbose and struggle to say hello in less than a paragraph.

It's certainly not possible to give a brief summary of autism itself in two or three sentences. It presents in so many different ways that there is no broad outline that covers all of us. This is what has confounded the neurotypical world for so long in trying to understand us and why they now refer to it as a spectrum of conditions. It's not possible to put us all in one box.

I would recommend reading through many of the different stories in this forum to get a better understanding, and a lot of the people here write very well. There's some good stories. To try and summarise my personal experience as simply as possible:

To never be able to truly connect with anyone. To always be on the outside looking in. Surrounded by people yet completely alone.

 

[Angular Chap]

Hello, welcome, and thank you for stepping up and putting in all the effort of writing a book.

To sum up my issues in 2-3 sentences, I'll use my go to phrase to describe my strongest trait:

One word: Lost. Whenever I have to go somewhere I just can't figure out where to go, what to do, what to say, or who to say it to. Getting things right is like tossing a coin or rolling a dice, it is mostly just luck. It leads to me being embarrassed and humiliated and people just invalidate me and don't believe me on how bad it can be.

In the words of Father Ted: "Good luck with the book!"

 

[Au Naturel]

Hello, I am writing a novel primarily on autism and have reached a few parts in my book where I require the personal experiences of those with autism, which I will detail a little more down below. For context, I live in the UK, and after receiving my diagnosis of autism as a teenager, I had no help. I got my diagnosis, and then that was it; however, over the years, through experience and trial and error, I have learned a few things about myself and others who also have autism that I thought would be really beneficial in a book. So, I decided to write one.

If you decide to contribute, I will keep your name anonymous unless you state otherwise.

What I need:
- A personal summary of experiences surrounding how your autism presents about 2-3 sentences long from boys who are autistic.
- A personal summary of experiences surrounding how your autism presents about 2-3 sentences long from girls who are autistic.

- A summary of parents' experiences with children with autism.
- A summary of siblings' experiences with brothers/sisters with autism.

If you have any questions regarding this book, please do not hesitate to get in contact with me: [email protected]

Sensory overload. I do not do well in loud and crowded environments. I need some space and enough quiet to be able to think. I can deal with some chaos as long as I can keep my own thoughts ordered.

Also a picky eater. Certain tastes and textures that most people love are revolting to me.- like avocadoes, and mayonnaise. Most legumes other than peanuts. Slimy stuff in particular. Give my crunch in my veggies! This led to food wars as a child.

Social disability. I mask in social settings. There is a social code that I don't get. If I don't mask, I get laughed at, or I am found annoying. Masking for long periods is exhausting. I have to use algorithms instead of instinct.

I dislike clothing. I love to be deep in the wild, naked, and alone. Hiking is my meditation. I wear loose-fitting clothing and prefer nudity. I have no body shame at all, so I'm a nudist. I have no fashion sense and use rules to coordinate clothing instead of what is popular.

OTOH I am really smart about special interests, usually very techy stuff. Most people consider it boring. My social disability made translating that intelligence and interest into a career path very difficult.

 

[Darkkin]

Look up autistic biographies. Read up on published primary sources. There are dozens available. Browse the forums. The resources tab is a good place to start. Write from your lived experiences.

But frankly, asking others to sum up their experience in 2 - 3 sentence summaries for someone's writing project comes across as saying, 'Hey, can you do my homework.'

These are the requirements...

Read what you want to write. Get to know what is on the shelves, but doing your own research is essential.

Life in a Different Key
Born on a Blue Day
May Tomorrow be Awake
The Autistic Brain
Unmasking Autism
Divergent Mind
Neurotribes
The Power of Different
The Rosie Project
Thirteen Reasons Why I Jump
Uniquely Human
Life Animated

Start where you are with your lived experiences. That is one of the single best sources of information. Consider how your experience differs from other autistics, consider what commonalities also occur...a two to three sentence summary will backfire, limiting a breathing spectrum of people to something less than a footnote.

 

[HenleyMae]

Hello, I am writing a novel primarily on autism and have reached a few parts in my book where I require the personal experiences of those with autism, which I will detail a little more down below. For context, I live in the UK, and after receiving my diagnosis of autism as a teenager, I had no help. I got my diagnosis, and then that was it; however, over the years, through experience and trial and error, I have learned a few things about myself and others who also have autism that I thought would be really beneficial in a book. So, I decided to write one.

If you decide to contribute, I will keep your name anonymous unless you state otherwise.

What I need:
- A personal summary of experiences surrounding how your autism presents about 2-3 sentences long from boys who are autistic.
- A personal summary of experiences surrounding how your autism presents about 2-3 sentences long from girls who are autistic.

- A summary of parents' experiences with children with autism.
- A summary of siblings' experiences with brothers/sisters with autism.

If you have any questions regarding this book, please do not hesitate to get in contact with me: [email protected]

I didn't know I had autism until I was 22. As a child, I wasn't aware there was something different about me, though anyone looking at me could probably see it very easily. I had different priorities than many of my peers: I didn't have a concept of being cool or popular. I pursued what interested me regardless of what was "in style".

 

[Shevek]

I got AS from my mother, and she was not interested in babies. I thought that our family was normal, and that we all felt like fish out of water because we had evolved for tribal life, and now had to cope with big, agricultural populations. For most of my life, I assumed that IQ and EQ were linked, overestimating the intelligence of the socially active, and unaware that my abilities were hard to teach.

I see that educators now think that because boys mature emotionally slower than girls, they should start school a year later. My ability on tests got me into high school as the youngest student, which didn't help at all. I flunked out, left home, went to the library, and then lectured to graduating engineers.

In intimate relationships, my main talent was in not spoiling a woman's particular imaginings about who I might be for months or years. I avoided all conflict and only learned to assert myself in my 50s.

 

[Hypnalis]

@Novachels

I guess it's tedious getting posts with mild pushback, but here's another one anyway

I suggest that, if you're writing about HFA's, you re-think your questions.

Autism doesn't "present" to people on the spectrum, it presents to other people.
With ASD2's and ASD3's (defined as requiring external support) you'll probably get good information ... but some of that information is probably sourced from care-givers.

HFA is defined as not requiring external support (which IMO is a terrible classification system).

It includes people who "present" in easily identified ways (for example "late launch"), just as some ASD2's and perhaps ASD3's, will know some/all of their symptoms directly.

But it also includes people who have never been diagnosed (seems quite common among older HFA's), diagnosed late (well into adulthood), or have never received any useful support with their lives because they accommodate well to "the real world".

Within that group, to a large extent we are who we are - just another group of humans with something in common, but largely ignored by everyone else.
Until, perhaps, we start organizing "in your face" awareness campaigns that outrage either the political left or the political right enough to get us on TV /lol.

Back to "invisible HFA" presentation:
We learn we're different gradually, over quite a long time, by noticing that most other people are mentally different in ways that are initially puzzling. In the terms you use - we see differences between us and how others "present".

Most learn to fit in a little better by masking. This is also a gradual process, and it starts before we have any meaningful mental model of how people think (mostly others, but also ourselves). So since the mask is "constructed" in parallel with our late childhood to early adulthood development period, i.e. while we and most of our personal contacts are changing quite fast, our initial mask(s) cannot work perfectly.

I can't judge others here (as far as I can make out I don't mask in an "ND-typical way" (if that's a thing /lol)).
But from what I've seen/heard, most masking is "semi-autonomic" - i.e. it's not fully consciously controlled, which IMO implies it's not (fully) consciously understood.

So what do we present? Do we know what we present? Is what we do know enough to construct a fictional character's behavior around?

It may be possible to get relevant information about this, but I doubt it can be done with a few simple questions, and brief responses.

 

[Darkkin]

A different approach might be, rather than saying shove your life into this box so its convenient for my purposes, consider approaching it like an interview or an interesting conversation.

In short ask specific questions based on your experiences. Note differences like living situations, family dynamics, cognitive abilities, the gradient of ASD 1 - 3.

Look at areas where you struggle. Maybe use that as a segue into a conversation with other autistics.

I struggle with A because...

Consider what areas have improved. What areas have always been efficient (e.g. language in the hyperlexic).

OR

Do a research exercise and summarize what you read into two or three sentences that fit into your 'research criteria'. See if you can effectively write the assignment presented in the opening post...using available media.

Summarize Person A. Summarize Person Q. (No more than three lines).

 

[AdamG]

There is no way I could give anywhere close to a 2-3 sentence long summary of my experiences, without sounding extremely trite and not of value to anyone. A sound bite does not a book make.
.
If you wanted to do some sort of in-depth study, I'm still not sure I'd be your person, but at least you'd get an idea of someone's experiences that way.

 

[Novachels]

Apologies, I have never been good at articulating myself, which is ironic, considering I'm writing a book.
All I am asking for is a personal experience from you about how you feel about your autism and how you've been able to navigate life with it. Apologies if I wasn't clear. Forget about being brief as I should have known better than to keep it short. It can be as long as you want as I've created a section in the back of the book specifically for people's experiences with Autism, so it is a free for all

 

[Shevek]

I am very glad to have the enhanced abilities, but very frustrated about sharing my work. There is mutual inability to imagine the other between AS and NT minds. The kind of help I wish I'd gotten is nothing like the kind of "help" usually imposed. We are being made into actors pretending to be normal but feeling isolated and phony. What we need is for NTs to learn to work with people who can focus on technical problems and do ground-breaking work, but can only explain the facts, not how to change minds that are almost exclusively emotional. I could have been a great asset for some business partners

 

[tazz]

A personal summary of experiences surrounding how your autism presents about 2-3 sentences long

First conscious awareness of any difference: when I started school at the age of 5 and thought that all the other kids must have already known each other before they got there, because how else would they know how to play together. So I devised ways to occupy myself on my own. I was comfortable with that. I only felt uncomfortable (read: crushing anxiety) when I tried to (or was forced to) join in.

During school years I noticed that being precise and organised got me laughed at or in trouble with the teachers. Apparently I had no clue what level of detail was "normal". And people don't like to be told they got something wrong. I resented being made to suffer just because I was being precise, thorough and organised.

When I started work, it was around the time that AIDS was at its peak, and it had taken hold in the straight community so whereas beforehand no-one cared, now everyone was worried about it and pissed at "the gays". I had figured out I was bisexual by then but it kinda felt so normal it wasn't even something that needed to be said. When the backlash against homosexuals arrived, and people said to my face that gay men deserved to die if they were going to "slum it like that" - I figured it wasn't just my inept socialising that was gonna get me in trouble. So I went into full-on masking mode. For much of my adult life autism has presented as depression, confusion, resentment and outbursts of anger - cause unknown, but I blamed it on pretty much all of society for being so damn mean and lacking any empathy (ironically).

I wasn't diagnosed until the age of 50.

Are you only after comments from boys and girls, no-one else?

 

[Novachels]

First conscious awareness of any difference: when I started school at the age of 5 and thought that all the other kids must have already known each other before they got there, because how else would they know how to play together. So I devised ways to occupy myself on my own. I was comfortable with that. I only felt uncomfortable (read: crushing anxiety) when I tried to (or was forced to) join in.

During school years I noticed that being precise and organised got me laughed at or in trouble with the teachers. Apparently I had no clue what level of detail was "normal". And people don't like to be told they got something wrong. I resented being made to suffer just because I was being precise, thorough and organised.

When I started work, it was around the time that AIDS was at its peak, and it had taken hold in the straight community so whereas beforehand no-one cared, now everyone was worried about it and pissed at "the gays". I had figured out I was bisexual by then but it kinda felt so normal it wasn't even something that needed to be said. When the backlash against homosexuals arrived, and people said to my face that gay men deserved to die if they were going to "slum it like that" - I figured it wasn't just my inept socialising that was gonna get me in trouble. So I went into full-on masking mode. For much of my adult life autism has presented as depression, confusion, resentment and outbursts of anger - cause unknown, but I blamed it on pretty much all of society for being so damn mean and lacking any empathy (ironically).

I wasn't diagnosed until the age of 50.

Are you only after comments from boys and girls, no-one else?

I am a little confused about your question. What do you mean?

 

[tazz]

Sorry, it was a bit of a vague question. I just meant these days it's common to acknowledge that there are people who don't fit the boy or girl category.

 

[Novachels]

Hello,

I am writing a novel surrounding autism and wanted to gather a few opinions of parents who have experienced successes or failures by the educational system regarding their autistic child(ren) and how they have managed to navigate the support given (or not). As someone who has autism herself, I never received any support in school simply because I did not have a formal diagnosis, which meant I was not able to receive the muchly-needed support to get me through my entire educational journey, and this resulted in exceptionally poor grades. I know that my mother fought the system for years from when I was in nursery, but it was only a little after I had completely finished my education that I was diagnosed, which was too late.

Therefore, I am writing this book to underline the importance of seeing autistic children in schools and why teaching staff not only need to be more aware of children in their classroom but also need to listen to parents to ensure their children are receiving the best educational experience and support that they can.

I would prefer responses to be in the UK, but I can take submissions from those in other countries too. As for submissions, it would be appropriate for the children to have recently left school or are still in school (primary or secondary). Please remember that I may use your submission in my book if granted permission. If you have any further queries on the book or would like to submit something, please do get in touch at [email protected]

Thank you, and I hope you have a lovely day.

(P.S. - I am not the best at articulating myself, so if there is anything that you do not understand, please feel free to comment or send me an email).