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Autism

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It's been a while since I last posted here. By chance I logged on and found this thread.

I'm autistic, albeit with the mildest possible diagnosis (PDD-NOS). I've started writing down a lot of the feelings I endured as a kid with my novel project about a young train enthusiast with similar problems. I won't post that here, but if anyone is interested in checking that out, feel free to message me.

I became fascinated with almost everything about trains as a toddler in eastern Hertfordshire, especially level crossings. This wasn't really a problem until I started attending school in the middle of Norfolk with no railways around, so I turned to my imagination. I pretended to be a train driver, everything from steam trains to HSTs, it was everything my world revolved around. Other kids just didn't understand. Furthermore the one friend I did have actually said he couldn't play with me at school, or he'd be bullied too. This went on until I moved to Canada as a preteen, which had its own downfalls, but at least I wasn't being picked on. I became popular because of my accent, talk about a complete change of circumstances! Anyway, where I'm going with this, is that although the possibilities of me being autistic was discussed when I lived in Norfolk, nothing ever came of it. I didn't get an official diagnosis until I was eighteen, since in Canada they had to start any form of diagnosis from the beginning.

Cancelled plans are always a pain, but they've never bothered me in a sensory way, it's always an almost neurotypical "oh great, brilliant. What the f*** do I do now?"
The sensory stuff I do experience is when I'm shouted at. It feels like pins and needles in my head with a tingling up my spine, sometimes accompanied by a brief feeling of being too hot. As a kid it normally made me shut down, it took any sense of safety or my freedom to explain what I was feeling, away from me.

Wow, sorry for the long reply.
 
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Sad Sprinter

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It's been a while since I last posted here. By chance I logged on and found this thread.

I'm autistic, albeit with the mildest possible diagnosis (PDD-NOS). I've started writing down a lot of the feelings I endured as a kid with my novel project about a young train enthusiast with similar problems. I won't post that here, but if anyone is interested in checking that out, feel free to message me.

I became fascinated with almost everything about trains as a toddler in eastern Hertfordshire, especially level crossings. This wasn't really a problem until I started attending school in the middle of Norfolk with no railways around, so I turned to my imagination. I pretended to be a train driver, everything from steam trains to HSTs, it was everything my world revolved around. Other kids just didn't understand. Furthermore the one friend I did have actually said he couldn't play with me at school, or he'd be bullied too. This went on until I moved to Canada as a preteen, which had its own downfalls, but at least I wasn't being picked on. I became popular because of my accent, talk about a complete change of circumstances! Anyway, where I'm going with this, is that although the possibilities of me being autistic was discussed when I lived in Norfolk, nothing ever came of it. I didn't get an official diagnosis until I was eighteen, since in Canada they had to start any form of diagnosis from the beginning.

Cancelled plans are always a pain, but they've never bothered me in a sensory way, it's always an almost neurotypical "oh great, brilliant. What the f*** do I do now?"
The sensory stuff I do experience is when I'm shouted at. It feels like pins and needles in my head with a tingling up my spine, sometimes accompanied by a brief feeling of being too hot. As a kid it normally made me shut down, it took any sense of safety or my freedom to explain what I was feeling, away from me.

Wow, sorry for the long reply.

I got diagnosed as autistic just under two weeks ago and honestly I could have written what you wrote. Got the most mildest diagnosis of autism, and yes, my imagination in school and developed a fascination with trains from the moment I was born it seemed. My childhood special interest was the Eurostar, I loved that thing from here to the moon and back. Still do, can't explain why. I heavily invested in my imagination as a child. Building imaginary railway lines and pretending I'm watching a Video 125 drivers eye view of the entirely fictional route. Years of school passed by without me learning anything because I loved my imagination so much. When I couldn't be with my trains at home, I just truned to my trains in my head. Even ta work today I have to fight myself to not deep-dive into my train fantasies when I'm bored to keep focused.

Shouting. Hated, hated that as a child. Still do. Can't stand a raised voice at me, or any loud noises. Motorbikes revving, ambulance sirens, its like your body goes into mild shock.
 

telstarbox

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I'll certainly try to remember that when I do get around to booking flights. I actually started looking at flights a few minutes ago now easyJet have released their winter schedule, though I'm not booking anything yet until I know what's going on and I've sorted one or two things out with work.
In my experience airports and airlines are good at providing extra support to passengers - more so than some parts of the railway. For example on a flight you'll get quite detailed announcements at each stage and they'll tell you what you need to do in terms of seat belts and other safety measures.
 

S&CLER

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I've had Asperger's for ages (I'm now 75), and the main problem is that it's very hard to understand what other people expect of me, so relationships are out; I've spent 60 years avoiding them, though I can form ordinary friendships up to a point. Very loud noise also makes me nervous and distressed, and I have had to leave restaurants and social gatherings because I couldn't stand it. I've been mildly depressed about it for decades, but the depression has become much worse since I was put on triptorelin as part of my prostate cancer treatment; it's a notorious depressant which can turn a browned-off feeling into sheer despair. Asperger's only compounds it.
 

miklcct

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I've had Asperger's for ages (I'm now 75), and the main problem is that it's very hard to understand what other people expect of me, so relationships are out; I've spent 60 years avoiding them, though I can form ordinary friendships up to a point.
I had only found out that I am one in 2020 when I was suggested by my swimming goddess, as I couldn't understand what people meant and couldn't get well with swimming groups (I didn't have such problems when training in orienteering clubs). Moreover I couldn't even understand why people were offended when I said some impersonal statements backed up by facts, for example, mentioning that I don't like a certain place (a feeling) because the transport is worse than London (a fact), and I couldn't understand why people said that my goal was unrealistic when my idols are doing that, and I couldn't understand why people said congratulations even when I failed my Channel swim attempt 2 years ago.

I have travelled alone to 20+ countries in the world. I can manage any journeys as long as I am on a fixed route, but if a line is blocked it will be a very difficult situation for me as, apart from very rare circumstances where there exists multiple routes with comparable cost (i.e. in terms of time or fare), I only know to stay on the route, especially in places I am not familiar geographically and I dare not going off-route unless I have a map and, in case of public transport, with access to the first and last departure times. And working out alternative routes under the stress of the next bus / train departing soon can send me into sensory overload as I am trying to catch up my delay to arrive my destination at my planned time and my planned cost.

Also taking a taxi is very stressful for me because a taxi doesn't have a fixed route, and I have to make sure that the driver runs on the route I want, generally the shortest route by distance, without deviation. I am more comfortable using trains and buses because they run on a fixed route. Notwithstanding the above, in the very first year, on a journey from Waterloo to Bournemouth at night, the train ran much slower than usual so I felt strange, then I checked the GPS and it showed that we were heading towards Reading!!! It sent me into distress immediately and I had to find the guard onboard, as I didn't know trains can be diverted in the UK, and there was nothing strange in the calling pattern (Woking, Basingstoke, Winchester, ...). (In Hong Kong, it is impossible to run a heavy rail train on different routes between the same places, with the exception of the Racecourse loop, and all trains call at all stations so any change would be noticed immediately)

If I knew that beforehand I would have a more informed decision whether to take a train or not, and this eventually inspired me to add a map into gbtt.uk service details such that I can know if a train is scheduled to run on its normal route or not.
 

jb108822

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In my experience airports and airlines are good at providing extra support to passengers - more so than some parts of the railway. For example on a flight you'll get quite detailed announcements at each stage and they'll tell you what you need to do in terms of seat belts and other safety measures.
Yeah, this is very true. I did take a flight on my own back in January (was only Edinburgh to Birmingham, and I did have a friend with me up until my gate was called, but it still counts), and it went pretty well. Only issue I had was that I ended up in an exit row and didn't quite realise I couldn't have anything on the floor under my seat until one of the flight attendants said - my own fault for not checking. :p I'm flying to NYC in September after multiple delays (for reference, we were first due to go in June 2019, and I think this is the fifth or sixth date we've set), so this'll be a new experience. Quite looking forward to my first long-haul flight, though!
 

jb108822

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Nice, which airline did you go with?
easyJet from EDI-BHX. Got BA from LHR-JFK in September, which should be good. Haven't flown with them since October 2006 when I went to Barcelona with school on board a 767-300ER, and I should get a 777 of some description to JFK.
 

PsychoMouse

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I'm fairly certain I'm on the spectrum somewhere, my psychologist step-mother also agrees with me.

Not entirely sure it's worth pursuing a formal diagnosis given the current strain on the NHS (especially mental health services), how long it takes, and to what benefit it could even bring to somebody in their mid thirties?
 

Russel

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Very interesting thread, I'm glad I've read it.

My partner and I are currently trying to get an Autism diagnosis for our 7 year old son, he's displayed some of the traits from a young age, we believe if he's on the spectrum it'll be at the lower end but we would rather have a diagnosis now before he goes to high school, however, 12 months in and all we seem to get is passed from one department to another, frustrating is an understatement...
 

Ashley Hill

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As an aside my TOC requires frontline staff to sit an on-line Autism awareness course one a year. Its provided by an Autism support organisation and is very good.
 

Class800

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As an aside my TOC requires frontline staff to sit an on-line Autism awareness course one a year. Its provided by an Autism support organisation and is very good.
Thank you Ashley Hill. I do worry greatly though about the experience people with autism may encounter on the railway and how it could be much better. At the root of the matter is our railway system's approach that intent does not need to be proved to prosecute. People with autism may be particularly prone to accidentally misunderstand ticketing rules or misplace tickets. The equality act does say there should be reasonable adjustments but I've never found any. I do prefer someone else to check my booking before I press go to ensure I've got the right date as it can be really complex for people with autism how months don't always start on same day and so the relationship between the day and the date can be easily confused. I'm glad my family help me.
 

Class800

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What's the difference between these two? The day is a component of the date, which is composed of year, month and day, isn't it?
I mean which day of the week matches which number in the month - e.g. I thought I had 2 events on 6 September, one on a Saturday and one on a Wednesday. After some help and soul searching and diary scratching, it was found that one was on the 9th. Note it's the same number shape the other way up!
 

duncanp

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What's the difference between these two? The day is a component of the date, which is composed of year, month and day, isn't it?

The full form of the date consists of four components

Day of the week
Day of the month
Month
Year

For example, today's date is Tuesday 11th July 2023.

People don't always use the full form of the date, eg.

Q : What's the date today?
A : "the 11th" or "the 11th of July"
 

miklcct

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The full form of the date consists of four components

Day of the week
Day of the month
Month
Year

For example, today's date is Tuesday 11th July 2023.

People don't always use the full form of the date, eg.

Q : What's the date today?
A : "the 11th" or "the 11th of July"
Isn't "day of the week" not part of the date, as it isn't needed to uniquely identify a particular day on the calendar?
 

Economist

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I was diagnosed in early childhood and was lucky enough to get extra support in my education.

I've been a qualified train driver for around five years, including some time as a driver instructor at my previous employer.

I was quite fortunate at my initial train driving medical in that the doctor who signed me off as fit was very enlightened. He asked me a bit about my life and career to date and the discussion ended up being about a hobby we had in common. I was told that having high-functioning autism would, in his view, likely make me better at the job.
 

island

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As an aside my TOC requires frontline staff to sit an on-line Autism awareness course one a year. Its provided by an Autism support organisation and is very good.
That should be rolled out much more widely than the rail industry.
 

duncanp

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Isn't "day of the week" not part of the date, as it isn't needed to uniquely identify a particular day on the calendar?

I think "the date", has short and long forms.

You can have "the 11th", "July 11th", "July 11th 2023", "Tuesday July 11th" or "Tuesday July 11th 2023".

I think it depends on context really, and whether you need to identify the day of the week or the year.
 

Class800

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I'm just meaning I get mixed up between 6 and 9th, and sometimes 13th and 30th - or sometimes remember Saturday 6th when it isn't and it gets hooked in my mind
 

PTR 444

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Before you read this, I would just like to say that it took me a lot of courage to write this up. I have worried that I will get judged on some lifestyle choices I made in the past, but I feel that now is the time to disclose and get this off my chest.

I was diagnosed with high functioning Autism at the age of 3. Like many people on the spectrum, I developed a fascination for trains, buses and public transport before I started school. Throughout my childhood, my main strength was being able to memorise timetables and maps off by heart. I would also spend much of my spare time drawing road layouts and transport maps, something that would adapt and evolve over time. One of my biggest claims to fame is that I designed the very first bus route map for the college I was attending at the time, which was published in its official travel brochure and has been updated ever since. I had not been set a brief or anything - I was just so obsessed with sketching lines in MS paint at the time that I would simply de-stress by creating a map of a particular place with no intention that it would ever be used for official publicity.

I'm not sure if this is a strength or weakness, or even related to my autism, but one trend I've observed throughout my life is that I never really had much ambition to live a hugely successful and materialistic lifestyle, preferring to forego having luxury items in favour of making friends and being there for other people. I was always a hard working and well-behaved kid at school but I think I was just like that because I had been brought up to respect others, and also because I hated the idea of being punished and having things taken away from me. Because I had attended a special needs school right from the age of 5 up to 16, I was in classes with pupils who weren't as academically capable as me and who would need round the clock support into adulthood. I was one of the brightest pupils in the entire school and at one point my parents were pushing really hard for me to gain a mainstream education, but at the time I felt that the risks would outweigh the benefits.

I left school in 2014 without any GCSEs since my school didn't offer them, but was able to progress straight to a mainstream level 1 course at college. This in turn enabled me to progress to level 2 and level 3 while also taking English and Maths, before finishing in 2018. Throughout this period I met a lot of fellow students but it was also becoming more apparent that I was different from most. While I enjoyed being in a more mature environment, I was also finding that I was struggling to keep up with my workload and would often have to catch up in my spare time. This was something of a culture shock to me having spent much of my educational life in a special needs setting, but I was driven to attend all my lessons, which helped me achieve the grades to go on to university.

Speaking of which, going to university was one of the highest points of my life to date. I never believed I would ever be capable of going until attending a transitions fair at my college, backed up by positive testimonials from my tutors. Despite not having an idea of what I wanted to do afterwards (or whether I even wanted a career over a job at all!), I really wanted to go for the independence and social opportunities university life would give me, which I had missed out on for much of my childhood. I chose to study Graphic Design as I wanted to improve my map-making skills, but I never had any intention of turning this into a career at the time. In fact I regrettably didn't really have much understanding of the world of work at the time, as I will explain in my next paragraph.

Preparing for the world of work has been a bumpy ride to say the least, not least because the job market is so competitive and you need to stand out from the crowd in order to be hired, which was a difficult concept for me to grasp considering I believed I was academically and socially behind the majority of my generation as a result of my autism. I was never really motivated to have a lot of money and possessions, hence would often forego work and the luxuries that come with it during my student years in favour of spending more time with loved ones and catching up with studies. Throughout my college years, I had several voluntary roles but didn't gain my first paid job until the summer before starting university in 2018. This was only a summer job however, and after that I wouldn't gain any further employment until the autumn of 2021. I had a mental breakdown after my first year when I burned myself out after studying too hard, then for the next two summers COVID came along and knocked my confidence again, not to mention that the summer job market was pretty much nonexistent during that time.

Weirdly however, I'd say that the period of COVID from September 2020 onwards was a silver lining for me. Despite never agreeing with the harsh restrictions such as the rule of 6 and limited opening hours of pubs, I found that the lockdowns were helping me to complete my studies to a much higher standard than ever before. With no social distractions, I felt more confident in myself and was driven to complete my final projects to the best of my ability, all despite the university library being closed throughout January and being alone in halls (mostly so I didn't have to be cooped up with my parents!). I finished with a 2:1 and went on to study a Master's in Visual Communication, mainly to diversify my skillset and make up for the fact that I had missed opportunities because of COVID and a lack of self-confidence.

Around this time, I also started working for a local hospitality agency, taking on shifts to fit around my postgraduate studies. This was where I began to develop a better understanding of the world of work, since I had more life experience from interacting with people at university and sharing experiences. With the flexibility these shifts offered, I was able to take on more shifts at a pace I was suited to, and while some venues I have worked at were better than others, I'd say I have had a positive experience with them overall. I continued to work for the agency after finishing my studies before eventually taking on an ongoing role at a local private school in March this year. The team there were really impressed with my work ethic, so much so that they encouraged me to apply to work directly for them, and as of June I secured the job and am now working there full time. The role is very structured and does not require much contact with people which is very compatible with my strengths, and I can safely say that I thoroughly enjoy being part of the team despite the role not being related to my area of study at all.

Some people might say "Why did you waste your time studying for two degrees when you could have just got that job straight out of school?", but the point stands that there is so much more to university than just studying for increased career prospects. You gain a ton of social and life skills that help you in any job, not just a graduate one, and it at least gives you a diverse set of skills should you choose to change career. I sometimes wonder if I should have pushed myself to take a job during college, but if I had done that, I probably wouldn't have produced my coursework to as high a standard as I have. To this day, I am still working on freelance design projects during my spare time and while it might not be my main source of income, this kind of work is an incredibly valuable thing to do to give back to the community, and will definitely improve my CV.

Which brings me to my final point, I don't know whether it's just me or an autism thing in general, but I find another strength of mine is that I can pick skills back up where I have left off if I haven't been using them for a while. For example, I passed my driving test in 2016 but had no ambition of driving alone, let alone getting my own car - I think I simply did it to improve my social status. I stopped driving just before starting university and didn't pick it back up again until last month, but I feel I have grasped the car controls and Highway Code instantly from visual memory, and am more confident about driving alone and getting my own car than ever before. I am working up to achieving the former next month, and the latter around the end of the year.

So yes, autism can bring many challenges which make achieving life milestones much harder than normal, but overcoming these challenges make the hard work even more rewarding. I believe that there is no shame in not keeping up with the Joneses or having life goals that don't align with the status quo (such as not wanting a big house and kids for example), and I hope this will be recognised more widely in years to come.
 
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Kaliwax

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I'm autistic also have dyspraxia, ADHD, Anxiety and Depression. I struggle to communicate with people or understand people. People think I am rude, I am not, I'm scared of showing feelings and emotions to people, I am scared to say something in case it comes across as unsympathetic. Sometimes scared to go out of the house, hate crowded places, such as buses, i have let buses go in the past, knowing a quieter one will turn up 20 mins later, strange i know, but it worked for me. Have meltdowns fairly regularly, when something changes, I struggle to cope with it, sends me into panic mode and hurt myself physically and emotionally its difficult. Taking meds too looking for some counselling as well, which I should get soon. Life can be hard for me and can be difficult. I try and be honest and be positive where I can

Currently volunteering helping the elderly using the computers in a local library. Trying to get back into work eventually, with the right support and people to help me. Job centre have been very supportive and understanding with me.
 

Cdd89

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I was diagnosed with Asperger’s many years ago (although I understand this diagnosis is not used anymore, in favour of ASD), and also dyspraxia.

It had a fairly negative effect growing up, but I consider it a positive and it’s part of who I am. While not universal to autism, finding meaning in trivial nonsense, holding conversations with myself and being able to enjoy things repetitively are qualities I’ve valued even if they seem silly to others.

The main downsides are finding it hard to hold conversations if the other person isn’t accommodating (luckily most people are), and also my facial recognition is so comically bad that I get genuinely confused watching films (such as exposing a previously seen character as the villain). Even so, if someone offered me a “cure”, I don’t think I would take it.
 

Lucan

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Before you read this, I would just like to say that it took me a lot of courage to write this up. ...
... one trend I've observed throughout my life is that I never really had much ambition to live a hugely successful and materialistic lifestyle ...
... Because I had attended a special needs school right from the age of 5 up to 16, .... I was one of the brightest pupils in the entire school and at one point my parents were pushing really hard for me to gain a mainstream education, but at the time I felt that the risks would outweigh the benefits......
... I also started working for a local hospitality agency
You don't sound very autistic to me, most of what you said sounds fairly normal for an intelligent person with introspective leanings. If you enjoy working for a hospitality agency, you can't even be an introvert. Many of us who have not been officially declared as autistic are also not particularly interested in money and materialism for its own sake, and also have to deal with many of personal problems in life. You are not alone in this - we are not all alpha males although sometimes it seems as if everyone else is.
 
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