A few questions about Asperger/Autism (ASM).

[Cowley]

Hi everyone.

Over the years of being on here I’ve noted quite a few people who’ve said that they have an Autism/Aspergers diagnosis.
I spent quite a bit of my working life at Social Services in various roles - running groups doing outside work, working in home as well as day centre settings, and to be honest I found it extremely interesting, but I suppose 90% of it was spent working with people that would always need some kind of support from us and they generally had someone with them, even if they didn’t need much help, pretty much around the clock at all times.

What I’m interested in though (and this is because I have some gaps in my knowledge here) are those on this forum that are currently working in decent jobs/bringing up families/studying,doing degrees etc.

Some of the questions I have are here, although I might think of a few more as we go along:

1) What have you found difficult over the years, and how have you found ways to work around those problems?

2) How do you see your future, and what goals have you set yourself?
And following on from that - Have you set yourself a timeframe for achieving those goals, or does it not work like that?

3) What, or who motivated or helped you in your development as you were growing up?
Were you pushed or did you find the motivation in yourself?

4) What traits (maybe as you were growing up) caused you (or your parents) to look into getting a diagnosis?
And again following on from that - What did you feel when you were diagnosed?

I’ll stop with those four questions for the moment.
Now obviously I’m asking some quite personal questions here so please don’t feel that you have to contribute anything if you don’t feel comfortable. One of the reasons I’ve asked though is because some of you have been extremely honest and open in the past, and I’ve been meaning to ask more about the subject for quite a while.

I hope I’ve asked all of this in a respectful way, and if anyone has the time to answer any of the above questions please know that I do really appreciate it.
Some of these questions might hopefully help a very close friend of mine who has a teenage son who has Aspergers. I don’t know that it will but you don’t know unless you ask.

Thanks all.

 

[Peregrine 4903]

I would say over the years, the things that I have found the most difficult are noise, particularly people shouting which used to cause me to have a sensory overload, but I've managed to stop that from occuring, changes - particularly sudden changes in routine or a change in plan to your day which caused me to get very stressed when I was younger and be unable to do anything. One example being when I came from school mum told me she had booked me a haircut, without warning em previously and I became immensley stressed as my brain struggled to process the idea of this change to a routine so I refused to go. I've massively worked on improving my ability to adapt to change and now a big part of relishes change and is excited when a new opportunity comes up all of a sudden. Focusing can be quite challenging for me and I didn't have the best social skills when I was younger and struggled to read emtions, but at school practiced watching people, looking at their faces, trying to work out how they are feeling and that helped me learn to read emotions.

However too be honest, the hardest part of having autism, isn't anything that having autism brings you, its the whole stigma of having autism. At school I had a thoroughly miserable time and had no proper friends, because from year 7 I had a giant label on my head that said I had autism and as a result no one wanted to be my friend, in the end I was used for certain priveleges and was basically treated as a charity case, not as an equal. It was a horrible experience being de-humanised like that. I've been fortunate in the workplase so far but only 16% of autistic adults are in full time employment, which also shows that the problems do continue into the workplace. Also autistic people are 7 times more likely to commit suicide than neurotypicals.

I'm lucky in that ever since I left school last year, life has been utterly brilliant. Going from leaving school with 1 A level due to the stress of school, and the thinking I had no job prospects and would be doomed to live alone in my room my whole life, I instead managed to turn completely around. My few closer friends out of school I became ever closer with, I joined a theatre company, something which I never thought I would do and made another really close friend. And then workwise I did an internship at the dft for 3 weeks which was honestly some of the best weeks of my life. I realised that there were actually lots of options open for me and I could go the apprenticeship route. I applied for a Apprenticeship at a local council, got it have been doing that for the last year and then literally just last week, I got a job at Network Rail as an Operational Planner, I'd say my dream job and am currently in the process of transferring over to that. In the future, I want to continue in Train Planning for a few years and then eventually go the Department for Transport and become a Civil Servant in the Rail Group there. Or maybe I'll continue in Train Planning for the rest of my career. I'm not exactly sure yet. And then other goals I've set myself are to try and continue to make more friends and maybe even try my luck at getting a girlfriend, never had a chance at school.

In terms of development, my teachers at the beginning of secondary school pushed me a bit, my parents did too, but I would say it was mostly me who pushed myself, I had to as otherwise I'm not sure I would have made it.

In terms of diagnosis, my parents got one for me when I was in Primary School, but I at that age suspected something was up as I always used to say I think differently to everyone else.

I hope you find this answer helpful. I t was quite difficult to write, but I think its important to share my experiences to make sure they never happen again.

 

[Cowley]

I would say over the years, the things that I have found the most difficult are noise, particularly people shouting which used to cause me to have a sensory overload, but I've managed to stop that from occuring, changes - particularly sudden changes in routine or a change in plan to your day which caused me to get very stressed when I was younger and be unable to do anything. One example being when I came from school mum told me she had booked me a haircut, without warning em previously and I became immensley stressed as my brain struggled to process the idea of this change to a routine so I refused to go. I've massively worked on improving my ability to adapt to change and now a big part of relishes change and is excited when a new opportunity comes up all of a sudden. Focusing can be quite challenging for me and I didn't have the best social skills when I was younger and struggled to read emtions, but at school practiced watching people, looking at their faces, trying to work out how they are feeling and that helped me learn to read emotions.

However too be honest, the hardest part of having autism, isn't anything that having autism brings you, its the whole stigma of having autism. At school I had a thoroughly miserable time and had no proper friends, because from year 7 I had a giant label on my head that said I had autism and as a result no one wanted to be my friend, in the end I was used for certain priveleges and was basically treated as a charity case, not as an equal. It was a horrible experience being de-humanised like that. I've been fortunate in the workplase so far but only 16% of autistic adults are in full time employment, which also shows that the problems do continue into the workplace. Also autistic people are 7 times more likely to commit suicide than neurotypicals.

I'm lucky in that ever since I left school last year, life has been utterly brilliant. Going from leaving school with 1 A level due to the stress of school, and the thinking I had no job prospects and would be doomed to live alone in my room my whole life, I instead managed to turn completely around. My few closer friends out of school I became ever closer with, I joined a theatre company, something which I never thought I would do and made another really close friend. And then workwise I did an internship at the dft for 3 weeks which was honestly some of the best weeks of my life. I realised that there were actually lots of options open for me and I could go the apprenticeship route. I applied for a Apprenticeship at a local council, got it have been doing that for the last year and then literally just last week, I got a job at Network Rail as an Operational Planner, I'd say my dream job and am currently in the process of transferring over to that. In the future, I want to continue in Train Planning for a few years and then eventually go the Department for Transport and become a Civil Servant in the Rail Group there. Or maybe I'll continue in Train Planning for the rest of my career. I'm not exactly sure yet. And then other goals I've set myself are to try and continue to make more friends and maybe even try my luck at getting a girlfriend, never had a chance at school.

In terms of development, my teachers at the beginning of secondary school pushed me a bit, my parents did too, but I would say it was mostly me who pushed myself, I had to as otherwise I'm not sure I would have made it.

In terms of diagnosis, my parents got one for me when I was in Primary School, but I at that age suspected something was up as I always used to say I think differently to everyone else.

I hope you find this answer helpful. I t was quite difficult to write, but I think its important to share my experiences to make sure they never happen again.

@Peregrine 4903 - That was so good of you to take the time to write that out because it can’t have been easy.
Thank you very much as it’s been incredibly helpful to me.

 

[Peregrine 4903]

@Peregrine 4903 - That was so good of you to take the time to write that out because it can’t have been easy.
Thank you very much as it’s been incredibly helpful to me.

Your welcome @Cowley. If you need any further info or more about my situation I'm always happy to talk about it.

 

[alxndr]

For context, I’m 24 and was diagnosed with Aspergers/ASD on Friday so although I’ve been wondering about it for years it’s still something that I’m still trying to process. I started an apprenticeship on the railway at 17 and have progressed from there and also started studying with the Open University last year.

1) What have you found difficult over the years, and how have you found ways to work around those problems?
To some extent I’m still trying to figure out what was difficult because of ASD and what was difficult because of some of the other things which I had going on. Some things are quite difficult to separate out.

Overall, I’d say that one of the hardest things for me has been the feeling of inadequacy. Perhaps that would have been different had I been diagnosed earlier and not spent years wondering why I struggled so much with things that other people find come naturally to them, or aren’t an issue for them at all. When you can’t explain why a brief trip into town leaves you shutting yourself away for the remainder of the weekend, or neighbours complain that you don’t make small talk when passing, then it’s hard not to wonder what’s going wrong.

To be more specific, large social gatherings have been a problem with the noise, everything going on, and social expectations that don’t come naturally. I’ve tended to learn to avoid them, or where they are necessary, take breaks and ensure that I give myself time to recover before and after. For example, I had a meltdown following a conference a couple of years ago, the following year I attended in the daytime but avoided any social aspects, and was able to return to the conference the following day.

Knowing what to say and getting the hang of “small talk” has been a problem. When I worked in my parents’ pub I learned that it was only really necessary to have four or five stock phrases that I needed. It was only when the conversation went off script that I struggled after that.

New situations or unknowns are a big issue. Fortunately, the internet has made it easier to research and know what to expect. I can visit places on Streetview before getting there, read other people’s experiences of a place or thing, and generally just prepare myself for what will happen before it does.

Noise is also an issue. I finally got a pair of noise cancelling headphones a few months ago, and that’s made a big difference. Household chores like cooking, or hoover, are much easier now that I don’t have to deal with all the sounds that are involved. Relaxing is easier now that I don’t have to deal with being able to hear the electricity in the walls.

2) How do you see your future, and what goals have you set yourself?
And following on from that - Have you set yourself a timeframe for achieving those goals, or does it not work like that?
I’m more or less content where I am at the moment. I’d like to move back to the countryside at some point as the quieter environment was far easier for me. I may stay around here, move to Scotland to be nearer a good friend, or be required to return back to home to look after my parents as they get older. I’m happy in my work at the moment but know that it’s slowly changing in a direction that is less enjoyable for me, hence studying a degree to give me options for when I no longer find it enjoyable. I quite like the idea of being a RAIB inspector one day.

I don’t have any timescales for any of the above. I don’t expect anything to change for the next five years while I’m finishing my degree and tied into my mortgage and I’m not planning on making any immediate changes. At the moment all the variables when thinking about the future make my head feel fuzzy and I tend not to consider it too much. Perhaps in four or five years’ time I might have a better idea what I want to do and where I want to be.

3) What, or who motivated or helped you in your development as you were growing up?
Were you pushed or did you find the motivation in yourself?
I had depression for much of my teenage years, with a variety of contributing factors, so a great deal of it I spent surviving rather than actively working towards anything or even envisioning existing in the future. In a way the fact that I'm quite rule-bound probably helped with that, even when I was very much struggling going against things that I had to do didn't feel like an option. And the things which I did had to be right, which probably helped in school, which set me up well for the future.

I suppose I learned to hide the fact that I wasn’t neurotypical on my own, copying and emulating those around me. If it’s not obvious on the face of things then that’s because of how I’ve learned to avoid anything which has been commented on as being unusual, and doing my best to play the role that people have told is expected of me, rather than knowing it intuitively. Where people have confronted me about not asking them how they are, I make a point to remember to do this as it's expected of me. (I don't recommend giving people a telling off for not realising something that's not obvious to them as a good method of helping someone though.)

4) What traits (maybe as you were growing up) caused you (or your parents) to look into getting a diagnosis?
People seemed to be able to identify that there was something unusual about me, but not pinpoint what it was. Then again, being on the spectrum wouldn’t have been the most obvious thing about me growing up. That said, ten people have independently mentioned it to me, without prompting, so maybe there is something which they can pick up.

As far as I know, my parents never considered autism. My mother did ask me a couple of years ago if anyone had ever suggested it as a possibility to me after working with someone on the spectrum and noticing a lot of similarities between us. I requested a copy of my mental health notes from childhood after that and found one mention of it, but to my knowledge it was never fully explored as a possibility.

I started wondering if it could explain my difficulties a couple of years ago after reading about someone else’s experiences and started to recognise an awful lot of myself in what they were saying. I spent the following few years alternating between being almost certain that I was probably autistic to thinking that I was being ridiculous and just looking for excuses. There were many sleepless nights spent trying to figure it out. Eventually the factor which pushed me to getting a diagnosis was finding that I was unable to get myself to go shopping despite becoming underweight, having no food in the house, and waking up from hunger, simply because the coronavirus precautions had changed the world enough that I no longer knew what to expect. It wasn’t until I reached that point that I was sure that there had to be something going on.

And again following on from that - What did you feel when you were diagnosed?
As it stands, a mixture of relief and fear.

Relief in knowing that I’m not going to be told that there’s no reason for me to feel the way I do. Relief that I’m not just bad at life and being a human. Relief that I finally know what the issue is. Relief that I might be able to be kinder to myself and not judge myself by neurotypical standards.

I feel fear, or worry, knowing that this is my life. Before my diagnosis I tried to put it down to being brought up in slightly different circumstances to other people, and thought it that it might just be that I had a different frame of reference (I suppose similar to having a cultural difference). I tried to put the fact that the noise and busy-ness of a town distressed me down to having not acclimatised from living in the countryside yet, even though I’ve not lived there since 2013. Now I know that’s not the case, and no matter how many coping techniques I might someday learn, I will ultimately never not be autistic.

I’m also a touch angry at the fact that it’s taken this long to get diagnosed. If someone had noticed when I was younger, perhaps if the psychiatrist had explored that avenue, then I might have been able to be kinder to myself earlier. I might have been able to do things that help me, like getting noise cancelling headphones or an online supermarket delivery, without feeling a fraud or failure.

I’m also wondering what I will do with this information about myself. Whether I will be open about it, or whether I will keep it to myself. So far I’ve only told one person (although of course it is now here for anyone to see). I never intended to tell anyone when seeking a diagnosis, but do wonder whether it would be beneficial in any circumstances.

 

[507021]

1) What have you found difficult over the years, and how have you found ways to work around those problems?

Socalising: I really struggle with this, but I find it easier if it's with someone who shares a common interest.
Eye contact: I can only really look at people during a conversation if I know them, otherwise I find it really difficult.
Loud noises: Not all loud noises bother me, but things like dropping coins on solid floors and two or more loud noises at once (e.g. music and TV) give me sensory overloads. If it's just one loud noise, such as loud music, then it's usually alright.
Texture: I struggle with certain textures, but I just avoid food or objects which have these. Polystyrene is the worst.
Understanding context: Unless something is explained to me very clearly, I find it very difficult to understand context, especially in text form.

2) How do you see your future, and what goals have you set yourself?
And following on from that - Have you set yourself a timeframe for achieving those goals, or does it not work like that?

I've just tried to live with having ASD as best as I can, like finding a job which I can manage, which I have done so and really enjoy. I would also like to get married, but as my relationship is still in the fairly early stages, I don't really see this as something that's going to happen until at least 2022 or 2023.

Personally, I don't set time frames to do things unless they're important.

3) What, or who motivated or helped you in your development as you were growing up?
Were you pushed or did you find the motivation in yourself?

As I was growing up, it was my Mum who pushed me to socialise even though I didn't really want to. Throughout my high school years, I was usually depressed so I didn't really feel able to motivate myself to do anything other than go to school and then return home and go on my computer or play on my PS2 until it was bedtime. During the weekend and holidays, the latter was pretty much all I did, and my Dad let me get on with it because he accepted that was what I wanted to do with my free time. I didn't really socialise outside of school until I made a really good friend in Year 10, going to his house at least once a week.

It wasn't really until I got to my early twenties that I was able to motivate myself, as I started to make friends and socialise more often. Now, I find it quite easy to motivate myself unless I'm going through a spell of depression.

4) What traits (maybe as you were growing up) caused you (or your parents) to look into getting a diagnosis?
And again following on from that - What did you feel when you were diagnosed?

Attachment: I found it very difficult to let go of out of date newspapers, magazines etc. I was also attached to my Dad's cars, and found it difficult to adjust to the new car when he traded in his previous one. After 2001, they were all of the same manufacturer, so I think that's one of the reasons why I'm loyal to that make myself.
Socialising: I just didn't want to socialise, at all.
Eye contact: I never looked at anyone I was talking to, or was talking to me.
Loud noises: I found these really distressing.

It was actually my Dad's youngest daughter who first suggested it, and when I was finally diagnosed, I felt I finally had an answer as to why I was "different".

My three year old daughter has similar traits to the above, in addition to fairly regular meltdowns, struggling with changes to her routine, poor coordination and certain materials. She's currently on the waiting list for an assessment after being referred by her GP, but they said the waiting list is very long and it could be 18-24 months before she gets one.

 

[jb108822]

Ah, now this is a topic I can really get my teeth into! This may be a bit lengthy, so I apologise in advance. I've also put some parts into labelled points for easier reading, and also cross-referencing.

1. What have you found difficult over the years, and how have you found ways to work around those problems?
a) Noise. Specifically random, unexpected noises. It agitates me and gets me really anxious. I'm used to the coffee machine at work randomly bleeping every so often when it's cleaning itself out, but it still makes me jump. What's worse is when the milk's low and the alarm WILL NOT shut up until you put more milk in - that drives me insane! I got some noise-cancelling headphones last year, and they've been an absolutely wonderful game-changer, making life so much easier for me when I'm travelling, or just out & about.
b) Changes in routine, especially short-notice. If I'm in the middle of something and get called away to do something else, I just get really annoyed. Strangely, I'm not as affected by this when I'm at work and I know things are prone to changing at short notice. I've often gone into my store at short notice to cover shifts, and have even gone to other stores at very short notice. I've also had to move around the country a lot due to the nature of my dad's job in the Methodist Church, and adjusting to so many new things (new house, new church, new area, new schools) is exhausting. The pandemic has caused me a lot of stress with regard to everything changing at short notice, and also lack of clarity on information.
c) Food. When I say this has been a battle my whole life, I'm not even joking. When I was a baby, I'd only eat one kind of baby food, which caused Mum a lot of issues when it had been discontinued. It took a year for me to eat potato, and it was accomplished by combining my love of Countdown (which I used to watch standing on my head - don't even ask ) with Alphabet Letters. I'm much better than I used to be, though there are a few foods I refuse to touch - mushrooms being the main one. It's not so much the flavour that's the problem for me - it's more the texture of certain foods. It's why I struggle with things like mango and egg. For years, the only vegetable I'd eat was carrots, though I was OK with other veg if it were in something like a pasta sauce. I'm able to eat a much wider variety of veg now, which makes things easier for my parents!
d) Social interaction. I struggle in large group convos, as there are often so many people talking at once it's hard to understand what's being said. Furthermore, I often feel like my brain's coming up with words at a million miles an hour, and I just can't get them out at anything resembling that speed. It's part of the reason why I don't really enjoy debates and conflict, as I simply can't come up with a decent answer at the best speed. I'm much better in smaller groups and one-on-one situations, as it's so much easier for me to focus on what's going on.

2) How do you see your future, and what goals have you set yourself? And following on from that - Have you set yourself a timeframe for achieving those goals, or does it not work like that?
a) This is a tricky one. I originally went to university to study Law, but couldn't cope with it, and basically had a breakdown at the start of my second year from which I never recovered. Failed my second year, dropped out, and moved back in with my parents. We moved up to Staffordshire, and they really pushed me to apply for a job, which was completely fair. Nine days after we moved house, I got a job offer, which I was incredibly thrilled about. It was in the clothing department of my local supermarket, which wasn't my first choice of department, but I just had to take what I could. It took a while, but I really enjoyed the role, and I'm now based in the petrol station of that store. I've also done shifts on other departments, and in a number of other stores. Working in retail has helped me cope with my Aspergers massively. Short-notice changes in routine, having to make phone calls to get problems sorted, taking phone calls from customers & contractors, having to come up with solutions to problems...It's stressful at times, I'm not going to lie, but I do generally enjoy it.
b) I was suffering from a lack of direction for years until I decided to start a Maths degree with the Open University. I started that back in January, and I've actually got the last exam for this first year tomorrow. Then I just need to decide on next year's modules! The reason I chose to study Maths is because I always enjoyed it when I was at school and college, and I do kinda regret not taking it any further than I did. Also, it's generally way more black-and-white in its application than law could ever be, though I do still have a lot of love & interest in law & justice. I'm not 100% sure what I want to do when I finish, but there's so much uncertainty surrounding the world at the moment thanks to coronavirus that it seems almost pointless to put too many fixed timeframes and goals into place. Just getting a full-time job would be a start so I can move out of my parents' place. There's a whole load of reasons as to why I need to do that sooner rather than later, but I don't want to go into too much detail on here as to what those reasons are.

3) What, or who motivated or helped you in your development as you were growing up? Were you pushed or did you find the motivation in yourself?
When I was younger, I think a lot of my development had to be pushed by my parents and teachers, though I was quite good at doing some things if I were really interested in it - such as putting a whole load of effort into a couple of Tube Challenge attempts in 2017 and 2018. I'm a bit better at motivating myself to do things now, though I do still need a push in the right direction sometimes! Doing my OU degree has made me better in prioritising my workload, though coronavirus has had a hit on that, and I've needed to keep reminding myself of deadlines. Still not missed a single one.

4) What traits (maybe as you were growing up) caused you (or your parents) to look into getting a diagnosis? And again following on from that - What did you feel when you were diagnosed?
As mentioned in 1c, food issues were one of the main indicators for my parents seeking a diagnosis, though it took a very long time. There was also the difficulties I faced with social interaction and my poor hand-eye co-ordination. I was born in November 1992, and my parents knew there was something different about me from a very young age. It took until December 2003 for me to finally receive my diagnosis. I don't really remember feeling any different when I got it, though as the years have gone on, I've become aware of a lot more of my autistic traits, and have found a number of ways to deal with any issues that come up.

I was bullied as a child, though I think it was partly down to my autism and partly because of my dad's job. The second place in Cornwall that we lived in saw the worst of it, which seemed to coincide with the move to secondary school. Moving house and starting in Year 7 at a new school was a really bad combination, and it took me ages to settle in. I'm only in touch now with a few people from then, but I think that's part of life - you can't stay in touch with everyone you've met forever. Issues were so bad after one incident when I was in Year 11 that we had to contact the police because I was in that much fear for my safety. Long story short is I'd been accused of doing something on the school bus that I hadn't done (what I was accused of had been blown wildly out of proportion from what had actually happened), and I'd been threatened with violence if I did anything like that ever again. It was a really rough time for me. That bus was notorious for being the one with the worst behaviour at my school, and no matter what the teachers tried, nothing worked. I ended up changing to a different school bus for the rest of my time at that school, and I still wonder why I didn't make that change any sooner. The atmosphere was much nicer, and there was a much greater level of respect for everyone.

I'm often commended on my great long-term memory, which comes in useful on a number of occasions, and my breadth & depth of knowledge is key in quizzes. On that note, in the summer of 2004, I appeared on the first-ever series of Junior Mastermind, with my specialist subject being 'Formula 1 from 1990 to 2004'. I didn't win - I came last in my heat - but it was such a close heat that they put ours on first when it was the second to be recorded. I managed to work out that of the 20 contestants in the heats, I was 7th overall, and my score would've won one of the heats. I was also the only contestant from the South West! One downside was that for my audition, I had to go from St Ives in Cornwall to Pebble Mill Studios in Birmingham...for an audition that lasted not much more than 30 minutes. Boy, that was a long day. A couple of weeks later, Mum got a call when we were staying at my grandparents' farm to say that I'd got on the show, and to say I was thrilled was an understatement. We drove up to London for the weekend of the recording, and got two free nights in a Hilton Hotel near Shepherd's Bush. It was actually a great lesson for me in dealing with failure. I didn't get upset that I hadn't won - just getting to that stage was a huge achievement in of itself!

That's all I can think of for now.

 

[Cowley]

@Peregrine 4903 - Thanks very much for the offer, I may well take you up on that at some point.
@alxndr and @507021 - Again I really appreciate the effort that you put into your replies, it was exactly the sort of knowledge I was hoping for when I started this thread. Really interesting insights into all of this.
@jb108822 - Your post came through just as I was replying to the thread and I got completely absorbed reading what you’d written.

One thing I’ve been struck by is how much of a struggle people’s teenage years seem to have been.
I found that time of my life difficult, and so did our children, but we didn’t (as far as I’m aware) have these extra issues to deal with.
Would it be fair to say that the fog sort of cleared once you weren’t forced into the school/college/university (dog eat dog) environment?
What you’ve all said reads to me like hitting your 20s made things a bit easier as you were able to follow your own routes in life without the pressure of conforming in large groups?

You’ve all mentioned loud/sharp noises as being an issue too. The noise cancelling headphones have obviously been a big help in some cases and that’s been useful to learn. I had heard that before but I don’t think I’d really appreciated how much of an issue it was.

 

[alxndr]

One thing I’ve been struck by is how much of a struggle people’s teenage years seem to have been.
I found that time of my life difficult, and so did our children, but we didn’t (as far as I’m aware) have these extra issues to deal with.
Would it be fair to say that the fog sort of cleared once you weren’t forced into the school (dog eat dog) environment?
What you’ve all said reads to me like hitting your 20s made things a easier as you were able to follow your own routes in life without the pressure of conforming in large groups?

For me personally I don't think it was, or perhaps it was just overshadowed by all the other things which were causing distress at the time. Or perhaps I've blocked it out from my memory. Either way, the fact that school wasn't worse for me was one of the reasons I was so unsure if I had ASD or not for so long. I suppose that shows how everyone is different, even if the have the same diagnoses.

There were several aspects of life when I was at school which were much easier than they are now. There was a regular routine (and although we didn't know it at the time, loss of that routine towards holidays was most likely why there would consistently be incidents at the very end of term). It was clear what was expected of me. The teachers knew me and although they didn't know what was going on, they knew I wasn't doing well mentally, and took that into account.

That said though, I was in a small school, it was rural, and bullying wasn't particularly rife. When there was bullying there were easier targets too. I'd imagine I'd have found it much harder had it been a larger school or I'd grown up in a more urban area. It would certainly be interesting to know what it would have been like if I hadn't had the other issues that I was facing.

Being an adult is tougher in a lot of ways. I left home and moved across the country at age 17 and lost the majority of contact with my family at that time, although we have gradually improved relations a little over time. Having to figure out, and carry out, the tasks involved in living independently is difficult. I was fortunate that my partner at the time moved with me when I got my own flat. I don't know if I'd have managed it on my own, it's certainly difficult now, even with years of practice.

You're right that it is easier that you can do your own thing in your own way as an adult. That doesn't make it any easier when you're thoroughly exhausted and drained, and you have to say, make a phonecall, or do household chores. It's very rare that I would be able to book a doctors' appointment on the same day that I'd also go to work, for example. It's also a little tricky if there's no one to remind you of the time, far too often I've got focused on something of interest and only realised several hours later that I've not eaten/slept/drank.

 

[Cowley]

For me personally I don't think it was, or perhaps it was just overshadowed by all the other things which were causing distress at the time. Or perhaps I've blocked it out from my memory. Either way, the fact that school wasn't worse for me was one of the reasons I was so unsure if I had ASD or not for so long. I suppose that shows how everyone is different, even if the have the same diagnoses.

There were several aspects of life when I was at school which were much easier than they are now. There was a regular routine (and although we didn't know it at the time, loss of that routine towards holidays was most likely why there would consistently be incidents at the very end of term). It was clear what was expected of me. The teachers knew me and although they didn't know what was going on, they knew I wasn't doing well mentally, and took that into account.

That said though, I was in a small school, it was rural, and bullying wasn't particularly rife. When there was bullying there were easier targets too. I'd imagine I'd have found it much harder had it been a larger school or I'd grown up in a more urban area. It would certainly be interesting to know what it would have been like if I hadn't had the other issues that I was facing.

Being an adult is tougher in a lot of ways. I left home and moved across the country at age 17 and lost the majority of contact with my family at that time, although we have gradually improved relations a little over time. Having to figure out, and carry out, the tasks involved in living independently is difficult. I was fortunate that my partner at the time moved with me when I got my own flat. I don't know if I'd have managed it on my own, it's certainly difficult now, even with years of practice.

You're right that it is easier that you can do your own thing in your own way as an adult. That doesn't make it any easier when you're thoroughly exhausted and drained, and you have to say, make a phonecall, or do household chores. It's very rare that I would be able to book a doctors' appointment on the same day that I'd also go to work, for example. It's also a little tricky if there's no one to remind you of the time, far too often I've got focused on something of interest and only realised several hours later that I've not eaten/slept/drank.

Ok I think I understand a bit better now thanks for that. Some of these things don’t always appear obvious from the outside looking in.

I meant to say yesterday that if anyone wants to chat about any of this but doesn’t feel comfortable posting it publicly on here then please feel free to send me a pm and I’ll keep it completely confidential.

 

[Peregrine 4903]

@Peregrine 4903 - Thanks very much for the offer, I may well take you up on that at some point.
@alxndr and @507021 - Again I really appreciate the effort that you put into your replies, it was exactly the sort of knowledge I was hoping for when I started this thread. Really interesting insights into all of this.
@jb108822 - Your post came through just as I was replying to the thread and I got completely absorbed reading what you’d written.

One thing I’ve been struck by is how much of a struggle people’s teenage years seem to have been.
I found that time of my life difficult, and so did our children, but we didn’t (as far as I’m aware) have these extra issues to deal with.
Would it be fair to say that the fog sort of cleared once you weren’t forced into the school (dog eat dog) environment?
What you’ve all said reads to me like hitting your 20s made things a easier as you were able to follow your own routes in life without the pressure of conforming in large groups?

You’ve all mentioned loud/sharp noises as being an issue too. The noise cancelling headphones have obviously been a big help in some cases and that’s been useful to learn. I had heard that before but I don’t think I’d really appreciated how much of an issue it was.

Yeah, most other fellow autistic people I've met and have told me their stories have all had terrible times at secondary school. There is only one person I know who didn't but he instead had a terrible time at university. I was lucky at school that I was never bullied in the traditional sense, but I was completely ignored, used and not treated like a fellow human being instead. Secondary School seems to be such a horrible environment. I only left school a year ago as I'm only 19 but in that year things have drastically improved and think a lot of that is that I no longer have to conform to large groups, try and adapt to fit in with them amongst other things. I really like the workplace as its the first place where I feel like I'm actually valued, no one cares that I have autism and that I'm viewed as part of the team, which is all I've ever really wanted, to be viewed as being part of the team and to feel like I belong somewhere. And also as I feel like I'm now following my own path, I feel like I'm in control of my life again, for example I can now go and try to make more friends, and I feel that is something I can go and do whereas school I felt like I was set on a path to misery and depression.

In loud/sharp noises are a huge issue, particularly when I was younger. When going through school, I tried to expose myself to these loud noises such as loud music to try and het used to these noises which has worked very well as I don't find loud music as problem anymore. However like someone mentioned in the thread already, the one thing I cannot stand is Polystyrene. Even thinking about it makes me squirm and squeale and if I see any Polystyrene I have to leave the room immediateley.

 

[gg1]

I’ll offer a slightly different perspective in that I have never been formally diagnosed with ASD but I’m convinced I’m on the milder and of the spectrum. Most of the 13 common signs of autism listed at the link below apply to me to varying degrees: https://www.nhs.uk/conditions/autism/signs/adults/

I’m 45 so a combination of a lower awareness of ASD in the 80s compared to now and the fact my symptoms are milder are probably the main factors behind why I was never assessed as a child. In addition my parent were both in the 40s when I was born so it’s very possible they didn’t have the vaguest idea what autism was themselves.

1) What have you found difficult over the years, and how have you found ways to work around those problems?
Socialising – I’ve always hated social gatherings and they make me feel very uncomfortable, the small talk aspect is the worse part. If I can get out of them somehow I will, usually by making up a reason not to attend, although obviously not something I can do regularly in the case of work or extended family dos. Oddly I never found going to pubs and clubs with friends to be a problem, I think because there’s not the expectation you need to speak to anyone other than the small group of people you go with. Maintaining eye contact is something I’m uncomfortable with but I force myself to do so as I know it’s expected.

Noise – A little different to other people who have mentioned noise, in my case there are lot of random noises I find extremely annoying which either don’t bother most people at all or do to much lesser degrees. Examples are squeaks and rattles in cars or on public transport (even ones which a barely audible, volume isn’t really a factor), other people’s headphones, snoring, sniffing, noisy breathing, noisy eating etc. Most people seem to be able to zone a lot of this out but when I hear them I can think of nothing else and in the case of noise emanating from a person as opposed to an inanimate object I feel an irrational simmering anger towards them.


2) How do you see your future, and what goals have you set yourself?
And following on from that - Have you set yourself a timeframe for achieving those goals, or does it not work like that?
Hopefully much the same as now. I’ve been with my partner 15 years who like me thinks she has undiagnosed autism so we fully understand each other little quirks. In her case changes to her routine, even very minor ones are extremely stressful. Also after a long succession of unfulfilling and not especially well paid jobs I (by accident/luck) fell into a career I actually enjoy and is relatively well paid in my late 30s so that aspect of my life is much better now.

3) What, or who motivated or helped you in your development as you were growing up?
Were you pushed or did you find the motivation in yourself?
The realisation that I was different and that certain behaviours were expected. Over time I gradually learned to put on a front, forcing myself to make eye contact as mentioned earlier, feigning interest in office chat (including pre-planning in my head a few stock questions and answers) and trying to limit myself from talking on one subject at length.


4) What traits (maybe as you were growing up) caused you (or your parents) to look into getting a diagnosis?
And again following on from that - What did you feel when you were diagnosed?
Not applicable in my case.

 

[jb108822]

@jb108822 - Your post came through just as I was replying to the thread and I got completely absorbed reading what you’d written.

You're not the first person to have said that about something I've written, believe me!

 

[Crossover]

Noise – A little different to other people who have mentioned noise, in my case there are lot of random noises I find extremely annoying which either don’t bother most people at all or do to much lesser degrees. Examples are squeaks and rattles in cars or on public transport (even ones which a barely audible, volume isn’t really a factor), other people’s headphones, snoring, sniffing, noisy breathing, noisy eating etc. Most people seem to be able to zone a lot of this out but when I hear them I can think of nothing else and in the case of noise emanating from a person as opposed to an inanimate object I feel an irrational simmering anger towards them.

This sounds a little like misophonia too - a former colleague used to give me evils for a whole range of noises (tapping, crunching apples, clicking pens etc)!

 

[Cowley]

This sounds a little like misophonia too - a former colleague used to give me evils for a whole range of noises (tapping, crunching apples, clicking pens etc)!

Oh god. Please don’t tap the pen. That’d drive me up the wall!
I’d hide them all from you Crossover...

== Doublepost prevention - post automatically merged: 15 Sep 2020 ==

I’ll offer a slightly different perspective in that I have never been formally diagnosed with ASD but I’m convinced I’m on the milder and of the spectrum. Most of the 13 common signs of autism listed at the link below apply to me to varying degrees: https://www.nhs.uk/conditions/autism/signs/adults/

I’m 45 so a combination of a lower awareness of ASD in the 80s compared to now and the fact my symptoms are milder are probably the main factors behind why I was never assessed as a child. In addition my parent were both in the 40s when I was born so it’s very possible they didn’t have the vaguest idea what autism was themselves.

1) What have you found difficult over the years, and how have you found ways to work around those problems?
Socialising – I’ve always hated social gatherings and they make me feel very uncomfortable, the small talk aspect is the worse part. If I can get out of them somehow I will, usually by making up a reason not to attend, although obviously not something I can do regularly in the case of work or extended family dos. Oddly I never found going to pubs and clubs with friends to be a problem, I think because there’s not the expectation you need to speak to anyone other than the small group of people you go with. Maintaining eye contact is something I’m uncomfortable with but I force myself to do so as I know it’s expected.

Noise – A little different to other people who have mentioned noise, in my case there are lot of random noises I find extremely annoying which either don’t bother most people at all or do to much lesser degrees. Examples are squeaks and rattles in cars or on public transport (even ones which a barely audible, volume isn’t really a factor), other people’s headphones, snoring, sniffing, noisy breathing, noisy eating etc. Most people seem to be able to zone a lot of this out but when I hear them I can think of nothing else and in the case of noise emanating from a person as opposed to an inanimate object I feel an irrational simmering anger towards them.


2) How do you see your future, and what goals have you set yourself?
And following on from that - Have you set yourself a timeframe for achieving those goals, or does it not work like that?
Hopefully much the same as now. I’ve been with my partner 15 years who like me thinks she has undiagnosed autism so we fully understand each other little quirks. In her case changes to her routine, even very minor ones are extremely stressful. Also after a long succession of unfulfilling and not especially well paid jobs I (by accident/luck) fell into a career I actually enjoy and is relatively well paid in my late 30s so that aspect of my life is much better now.

3) What, or who motivated or helped you in your development as you were growing up?
Were you pushed or did you find the motivation in yourself?
The realisation that I was different and that certain behaviours were expected. Over time I gradually learned to put on a front, forcing myself to make eye contact as mentioned earlier, feigning interest in office chat (including pre-planning in my head a few stock questions and answers) and trying to limit myself from talking on one subject at length.


4) What traits (maybe as you were growing up) caused you (or your parents) to look into getting a diagnosis?
And again following on from that - What did you feel when you were diagnosed?
Not applicable in my case.

Really interesting reading this @gg1. It’s a bit of a different take on things and because we’re not far off the same age (I’m 47) I found it quite useful to picture what things would have been like for you with some of our shared experiences growing up through those times.
I suppose it’s also made me wonder if it’s been better coming of age more recently with there being a bit more awareness of this subject now? I assume it’s a yes, but everyone has their own lived experiences through all of this and not much more.

I picked up on this too because it’s something that only seems to get to me; rattles in vehicles - If it’s on public transport or in someone else’s car it doesn’t bother me although I always notice it even if no-one else seems to.
But if it’s my own car it drives me crazy and I’ll pull the car over and get my other half to drive for a bit while I work out what it is.
Invariably though if I ask someone else to look for a rattle they won’t do it properly (because of course it doesn’t bother them).
I also found myself wondering if as well as that (which gets to me probably a lot more than is rational) I then had quite a few other things on a similar level going as well, how well I’d cope in the day to day world...
Maybe in that there’s some slight glimpse into some of this.

 

[Crossover]

Oh god. Please don’t tap the pen. That’d drive me up the wall!
I’d hide them all from you Crossover...

Imagine an entire meeting room of it...

 

[Cowley]

Imagine an entire meeting room of it...

You’d be relegated to the Argos pencil.

 

[LOL The Irony]

Currently a Level 3 Creative Media student in College

1) What have you found difficult over the years, and how have you found ways to work around those problems?

Fitting in, anger issues and awkwardness. Fitting in can still be a minor issue due to my loud personality but I've calmed down over these past few years. The bigger problem is I'm quite the recluse and have a toxic world view.

2) How do you see your future, and what goals have you set yourself?

I have very little clue about my future but I've set my goal of being somebody.

And following on from that - Have you set yourself a timeframe for achieving those goals, or does it not work like that?

I plan on doing work in Japan approximately 10 years after finishing college. I may go to university for a few years after finishing my course, depending on if I feel like it later on in the year.

3) What, or who motivated or helped you in your development as you were growing up?
Were you pushed or did you find the motivation in yourself?

Ironically (pun unintended), the worst thing to happen to me so far turned out to be the best and that was going to a specialist school for Y10-13. Going there certainly helped me although it never went all the way.

4) What traits (maybe as you were growing up) caused you (or your parents) to look into getting a diagnosis?
And again following on from that - What did you feel when you were diagnosed?

I wasn't sociable and would keep myself to myself and this is going back to when I was about 3. Then the anger issues came in primary...
When I was diagnosed, I didn't really feel anything except that my primary school could take a massive hike, to put it lightly.

To end off, if you gave me the choice between being on the autism spectrum and not being on it, I'd be inclined to take the latter because it's caused me more harm than good so far and set my schooling back by at least 2 years. Maybe my view will change in the years to come, but for now, it's stuck at that.

 

[Cowley]

Currently a Level 3 Creative Media student in College

Fitting in, anger issues and awkwardness. Fitting in can still be a minor issue due to my loud personality but I've calmed down over these past few years. The bigger problem is I'm quite the recluse and have a toxic world view.

I have very little clue about my future but I've set my goal of being somebody.

I plan on doing work in Japan approximately 10 years after finishing college. I may go to university for a few years after finishing my course, depending on if I feel like it later on in the year.

Ironically (pun unintended), the worst thing to happen to me so far turned out to be the best and that was going to a specialist school for Y10-13. Going there certainly helped me although it never went all the way.

I wasn't sociable and would keep myself to myself and this is going back to when I was about 3. Then the anger issues came in primary...
When I was diagnosed, I didn't really feel anything except that my primary school could take a massive hike, to put it lightly.

To end off, if you gave me the choice between being on the autism spectrum and not being on it, I'd be inclined to take the latter because it's caused me more harm than good so far and set my schooling back by at least 2 years. Maybe my view will change in the years to come, but for now, it's stuck at that.

Thanks for posting this @LOL The Irony . I was wondering if I could ask you a couple of things about the anger issues that you’ve experienced? I’m aware that it’s a bit personal though so would it be better by pm?

 

[LOL The Irony]

Thanks for posting this @LOL The Irony . I was wondering if I could ask you a couple of things about the anger issues that you’ve experienced? I’m aware that it’s a bit personal though so would it be better by pm?

Sure, I'm going to be now, so I'll reply tomorrow.

 

[Cowley]

Sure, I'm going to be now, so I'll reply tomorrow.

Great, thanks.