Autism the thread

Discussion in 'Corner Coffee' started by imanautie, 18th Jun 2020.

  1. imanautie

    imanautie TowersStreet Member

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    Well it's come up so many times it's probably about time it has its own topic :)

    IL start by mentioning here that I'm an autistic who's mostly/semi speaking but occasionally uses AAC due to my strong preference for text based communication.

    Said preference is one that frequently tops the polls in autistic led groups even amongst speaking autistics!
    That preference+theme parks as a spin goes some way to explaining why TS is so full of us :)

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    Last edited by a moderator: 18th Jun 2020
    Posted 18th Jun 2020
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  2. Alolan Diglett

    Alolan Diglett TowersStreet Member

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    Ok so we went with a thread. Yay!

    So I’m an attempt to begin the thread and direct it I will introduce my (online) self and say I am happy to answer any questions or queries people may have about autism, being autistic or working with people with a learning disability or autism. Hell I’ll answer most questions any way!

    I am Alolan Diglett and am 37 years old, at least that’s what I think, I stopped counting. I was not diagnosed until I was 30 years old. Always before this I had suspicions due to some of my behaviours but I had also settled on the fact that I was “just a bit weird”.
    My particular presentations are around empathy, understanding body language, taking things literally and considering others. You’d think I was actually quite selfish at times. I am very socially awkward and can come out with odd or inappropriate comments without really realising they were such.
    I really struggle with lighting, for instance lighting in super markets drives me mad. Easily over stimulated by the environment I have had many a melt down in a supermarket and you should see the looks a 30+ year old man gets from not understanding people during such a melt down.
    I cannot stand the unknown and new experiences. I need stability and structure.
    I struggle as I can take things very personally and seriously. Sarcasm, whilst not lost on me I can struggle to understand.

    I have a full time job as a social worker. Initially working with Learning Disabled Children And now working with adults with a LD.
    I do not claim benefits, although the world sees autism as a disability (and I would be eligible) this is a choice I have made.

    A lot of people struggle to realise I have a disability/autism because in their words “you function”. Ie I have a job. I keep that job. I have friendships and relationships. I speak to people, my job forces me in to new and unknown situations. What is not seen is the mental toll trying to be “normal” has on a person.

    I am not a “Rain Man” I have no hidden or special powers. However I do have an affinity for math and numbers as well as a good recall of incidents names and faces. However this is nothing super or above most people.

    I’ve tried to challenge myself. I attended theme park meets (that didn’t turn out well) I, as part of professional development, must make presentations, lead lectures and I am even a published author.
    However I still never feel like I “don’t fit in any where” I’m quirky. I love Pokemon, video games, Disney cartoons and Games Workshop. I live with two cats and a dog. I happily walk to the corner shop in my slippers and pyjamas happily declaring I don’t care what people think Andy then yet analyse and consider every interaction that happened on that same trip for signs of people’s thoughts about me.

    Again I’ve begun to waffle. I may contribute more when my brain settles down or if people ask questions.
    If you’ve waded through that monologue I thank you.
     
    Last edited: 18th Jun 2020
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    Posted 18th Jun 2020
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  3. imanautie

    imanautie TowersStreet Member

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    Oh yes masking absolutely takes a toll!

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    Posted 18th Jun 2020
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  4. delta79

    delta79 TowersStreet Member

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    So what is AAC?

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    Posted 18th Jun 2020
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  5. imanautie

    imanautie TowersStreet Member

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    Augmentative and alternative communication, aka alternatives and supplementary solutions for verbal communication.
    In my case Speech Assistant is the aac app I use if I'm not at work and able to use company IM.

    https://photos.app.goo.gl/6CXgin8CjCbD5bBg9

    Saying that, there's a wide variety of Aac solutions ranging from letter boards to text based apps (like SA) to symbol based apps, it's just a matter of what clicks and works in any one situation and SA is the cheapest one that clicks for me (I plan on upgrading to Predictable).

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  6. rob666

    rob666 TowersStreet Member

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    Used Makaton a lot with one of my ex care buddies.
    Was handy in long queuelines!
     
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    Posted 18th Jun 2020
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  7. Trooper

    Trooper TowersStreet Member

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    I hope this doesn't sound insensitive but I do have a question about interacting with autistic people.

    A guy I knew with Aspergers used to waffle on and on with seemingly no regard for the other person. If you do this, how would you react to someone politely but firmly asking you to stop if it is irritating to them?

    I suppose as well, is there a difference to you between masking and managing your autism? I guess this notion of meltdowns is what I'm curious about. Can you sense when things are building up and do something to prevent the meltdown or is it usually very sudden?

    Also, I always read your username as 'I'm an auntie' until a couple of days ago even though I remember your previous username.
     
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    Posted 18th Jun 2020
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  8. imanautie

    imanautie TowersStreet Member

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    Can't speak for everyone but if someone politely says I'm going on a bit there's a slight bit of embarrassment then oh thanks, there are some people such as @spinba11 who I've said "tell me to f*** off when you want me to bugger off" but that's not a good universal way to do it

    Masking is basically trying to hide who we are, managing things properly involves not masking to avoid things building up.

    About meltdowns there's 3 distinct but related events.
    *Meltdown: when things get too much and it's impossible to control and things go outwards, this is often seen as a tantrum but it's not-a meltdown cannot be controlled compared to a tantrum.
    *Shutdown: easiest way to think of this is a full system freeze, everything stops.
    *Burnout: when long term stressors build up and coping mechanisms begin to fail (or are unavailable such as Alton during this pandemic), it varies widely in what it presents as but common things are issues with verbal speech and ability to actually do stuff, burnout can last from a few days to years.

    I've had both public meltdowns (island security incident) and shutdowns (notably bomb threat evac at work) and think I'm either on the edge of or in the midst of burnout.

    Personally I can feel the twinges of a meltdown, generally once one is triggered there's no stopping it so it's a case of get somewhere safe, quiet to let it out.
    Shutdowns tend to be harder for me to notice before it's too late

    Edit: I changed my username because functioning levels are problematic and Asperger's especially so, autie is roughly the same thing to autistic as aspie to Asperger's
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  9. Alolan Diglett

    Alolan Diglett TowersStreet Member

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    I’ll also add my take if it’s ok?

    Personally I take no offence if people, particularly friends or colleagues, tell me that I’m waffling on and they are no longer interested. As said by imanautie theres usually brief embarrassment followed by realisation. There’s no need to be firm in it after all we are people., I tell my friends just to tell me to shut up. I’m not offended by that.
    But I will say, and I say this in my Autism Awareness Training (oh yeah I’m also a trainer for my employer) that if you have met one person with Autism you’ve done exactly that. Met one person with Autism.

    As for controlling/managing Autism. That’s kinda difficult as it is who we are. It’s not a disease which drugs can control it is very much part of our personality and the way the brain works. It would be like asking me to stop being roguishly handsome at the same time! However the more aware a person is of their condition they can lesson the impact that it has on those around them - like said before masking their condition.

    Again highlighted greatly by imanautie meltdowns are misunderstood in children as tantrums and incomprehensible to others in adults. I can sense when a meltdown coming on imagine if you will an over sensation to everything a buzzing in your head every fibre of your body is telling you to run get somewhere safe hide and protect yourself. Yet your surrounding do not allow you to do that. You may be in a queue, with friends and just unable to respond. Time becomes meaningless and seconds feel like hours, you cannot speak or tell anyone what is happening, the heat it’s soooo not. You know you cannot act out in any way as that will draw more attention. Attentions is exactly what you do not want at this very moment, where is safe, where can I run to. And them BAM! What happens next is barely rememberable to you. You may recall faces of concerned people but have no concept of how long has passed disorientated and confused becomes a state of mind for the following hours, flashbacks traumatise you and you only hope that it never happens again. Knowing that there is always a chance it will.
     
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  10. Matt N

    Matt N TowersStreet Member

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    I myself have autism, and while I’ve never personally had meltdowns or shutdowns like you guys talk about, I do find certain situations a bit overwhelming at times. I’ve never particularly liked large crowds, for example, or big social gatherings; they make me a bit nervous.

    I can, however, relate to the concept of masking your condition. This is something that I definitely do; there are many quirky mannerisms I exhibit when at home with my family who know me well, but I hide when out in public. I don’t really talk very openly about my condition often, as I must admit it’s not something I feel overly comfortable talking about on the whole.
     
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  11. Alolan Diglett

    Alolan Diglett TowersStreet Member

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    I’m a big believer in people being comfortable with their ASD (autistic spectrum disorder) be that autism Aspergers or even any Learning Disability as they so often get labelled together That’s why I do try and talk openly about my circumstance for me i suppose it’s about control and me taking ownership rather than (in at least my own opinion) it controlling and owning me. I found my first training session I put on to be liberating and was like the cork coming out of the bottle for me in acknowledging a reason why I do what I do.
    As long as you are comfortable with you that is the most important thing. There’s no right way or wrong way, you can talk and share or keep it close and personal. Just always be you.
     
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  12. imanautie

    imanautie TowersStreet Member

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    Exactly, you don't need to be quite as open as I am (hence the username and profile picture), just accepting who you are is good for you.

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  13. speedy

    speedy TowersStreet Member

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    You don't need to talk more if you're not comfortable. But I am glad that you have posted here as I can relate. My autism is a lot less visible now that I'm older but I still feel different. I too struggle with a big group of people, I much prefer going with just one or a few people. This is where it affects me most, I haven't managed to make any good friends where I live. I joined a sports club at the start of the year and it's fun, but I feel like an outsider. I hope things will be better when I finish university and can move somewhere closer to the theme parks and meet some more like minded people

    Edit: this isn't helped by my bad eyesight, I am terrible at recognising people
     
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  14. delta79

    delta79 TowersStreet Member

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    With a shutdown, do lower functions work like walking. So someone can guild you away from things?

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  15. imanautie

    imanautie TowersStreet Member

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    It depends!
    Generally the best thing to do if someone is in a shutdown is to not guide them away but monitor from a distance, senses are highly likely to be on beyond Maximum during a shutdown.
    Obviously that's different if they are in an unsafe location, then guiding them away is a must but needs to be handled with care.

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  16. Jonathan

    Jonathan TowersStreet Member

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    OK, here we go. I weirdly enjoy hearing about how other people with autism cope with it, and their life experiences. Makes me realise I'm not alone! (Warning: As is usual with me, long post incoming.)

    I've always been fairly open about being autistic, though weirdly, not being open about it helped me get a job with Sainsbury's back in 2013. Yeah, no idea how that worked when I was told that if I'd mentioned it on the job application, it wouldn't have made a difference, though my past experiences make me think differently.

    My parents thought something was a bit different about me from when I was very young. For example, there was only one kind of baby food I'd eat, which caused a problem when it became difficult to get hold of. So cue Mum going all over Birmingham to try and find it! Another one was the difficulty they had in getting me to eat, of all things, potatoes. How was it done? Well, I used to watch Countdown quite a bit when I was younger, often while standing on my head. Don't ask. :p Mum got me eating Alphabet Letters, eventually replacing the letter I with just straight chips, before then showing me what was in them. This process took about a YEAR. I've also become better with eating different vegetables over the past couple of years - for ages, I'd only eat carrots. Still won't touch salad, though, so ordering burgers can be a challenge at times. Can't wait for Maccies to actually properly allow you to make your own burger. :p

    I was finally diagnosed with Asperger syndrome in December 2003 when I was 11 years old. Finally, I had an answer as to why I was a bit weird. I sometimes find noisy environments challenging to deal with, so investing in some noise-cancelling headphones last year was an absolute game-changer. Using ordinary earbuds when I'm out and about now just feels so wrong. I thrive on routine, so the current state of affairs in the world makes things rather challenging, though working in a retail environment since September 2013 has really helped, especially knowing that anything can change quickly.

    On the subject of work, getting this job with Sainsbury's was a real game-changer. I'd just moved up to Staffordshire with my parents, who rightfully pressured me into getting a job after I'd dropped out of uni. Somehow got something with Sainsbury's on the clothing department, which wasn't my first choice, but I enjoyed it. After a few changes in team leader, I finally ended up with someome who was excellent and started to help me properly develop. (She'd joined the store after me and was promoted ahead of me, but I didn't really care. She was better than me anyway.) I was left in charge of the department when she was away on a couple of occasions, with a list of things that needed to be done on each day. The first time, everything was all done. The second time? I walked into the clothing cage on the Friday morning to see everything for that week had already been done, aside from a delivery that wasn't due until the following day. I had to quickly think of something to do that day, so I decided to sort through the clothing cage, which hadn't been done for a very long time. :p

    I'm not too keen on crowds, and have come close to panic attacks on one or two occasions, most notably back in November 2016 when I was crossing Westminster Bridge in London with Mike on a Saturday evening. Having said that, my head was all over the place due to my grandmother having died a couple of days previously, and I hadn't had the chance to properly process everything that was going on. I don't know how I manage in theme park queues, though having people to talk to and a phone does often help. Plus I can deal with noise and crowds at concerts OK as well.

    Changes in plans is something I've never been able to deal with well. I like to know exactly what's supposed to be happening at any point in time. When I did the Tube Challenge in 2017 and then in 2018, I had a plan set out to an insane degree, but knew there was the potential for it to go wrong. We missed out by three stations in 2017 due to a few factors, most notably a jobsworth bus driver for a connection we needed to make, but JUST completed it in 2018 - the sticking point was because of a signal failure on the District line at Earl's Court, which if you know the Tube is THE single worst place for a signal failure to occur on that line! We (myself and Mike) tried the Paris Métro challenge in November, which involved a lot more thinking on our feet due to not knowing the network as well as London and also because of some wonderful protests from the gilets jaunes closing several stations. Despite all that, we managed to get over 90% of the stations on the network, which we were very proud of. Plus we helped to raise a chunk of money for charity, so it's all good!

    I've been a fan of Formula 1 (to the extent that back on TTF, my username was 'formula1fan' - I decided to use my real name on here as a chance for a fresh start on a new site) for about 18 years. I just randomly happened upon it one Sunday morning in 2002 when I turned the TV on and thought 'Ooh, this looks interesting'. A couple of years later, it was my specialist subject when I appeared as a contestant on Junior Mastermind! I didn't win - I finished last in my heat - but I loved the experience. Dealing with failure is something I've never found easy, but I coped with that fairly well. I managed to work out that in the heats, I got the seventh-highest score out of the 20 contestants in the series, and the highest score of anyone who finished last in their heat. The heat I was in was the second one to be filmed, but because it was so much closer than the one filmed first, they just swapped the transmission order around. I was the first contestant in my heat, so I kinda claim I was the first-ever contestant on Junior Mastermind. I'm clutching at straws with that one, though. :p I'm also a huge fan of the Eurovision Song Contest, to the extent that I can recall the running order of each final since 2011, and the semi-finals since 2016.

    Understanding my emotions has often been tricky, especially when I started questioning my sexuality shortly after my 19th birthday. Growing up in the church, I'd been taught that homosexuality is unnatural and wrong, so knowing I was something I'd been led to believe was wrong really ruined my mental state for a long time, and I still find things very tricky, especially given I'm still not out to my family. How on earth I've managed to keep it hidden for this long baffles me, but I do think my parents know and are waiting for me to come out to them, which is a position that I do respect.

    Theatre is another love of mine. I've seen a number of productions over the years, but my two favourites are 'The Curious Incident of the Dog in the Night-Time' and 'Dear Evan Hansen'. I read the novel of the former play, and thoroughly enjoyed it due to how I was able to identify with the central character on a number of levels. It being turned into a play was a wonderful thing, and I saw it about four times. Seeing different facets of myself being acted out in front of me was wonderful, yet uncomfortable at times, though I guess that's one of the main purposes of theatre. As for DEH? Well...That musical pulled me through so many emotions during the show that I've never experienced before. Sitting in one of the boxes RIGHT by the stage helped me connect with it in a way I've never known in any other show. It's so amazingly relatable, yet also uncomfortable as well, and there were several themes that have crossovers with my autism and homosexuality. The novel, which was written to accompany the play, makes more obvious references to the main character possibly being autistic. The show's apparently being made into a film, and I'd hope that they try to incorporate elements of both the show and the novel together when it comes to shooting it.

    Finding friends has always been tricky, especially with moving around the country quite a bit, but I feel so lucky to have settled in Cheshire now. My church has a number of people of a similar age to me, which really helped me settle into the area. And as for TST? Well, if it weren't for this site, I wouldn't be where I am now, and I truly mean that. I feel as though I've become a much more well-rounded human being, and have done so many things that I never would've thought I'd do several years ago. I've travelled across Europe, I've learned a lot about history, I've learned more about social situations that my parents never taught me...And more seriously, I've come to terms with who I am. I cannot thank you guys enough for the support you've given me over the years since I became more active and started attending meets. It's amazing how much something of a snap decision to travel over 300 miles on my own to meet people I'd only known online for a few months has changed my life. Thanks, everyone. :)
     
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  17. imanautie

    imanautie TowersStreet Member

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    I guess one thing with me Is I don't do things normally which in the case of security research is quite useful! It's how I've been invited down to London at the expense of Europe's largest photo gifts company (you know the one), I can spend literally hours doing things in an unusual manner.

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  18. Alolan Diglett

    Alolan Diglett TowersStreet Member

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    Such a great post @Jonathan

    I’m interested in how others mental health is affected? My service user base (and myself);often have Co-morbidities or in other words other conditions that affect them also. This is often along the mental health lines and is why Autism is difficult to diagnose on its own. People often present as anxious, I’m sure most of us will agree that’s a given, but also with other mental health problems.
    How have you coped? Treatments?

    Personally I like to confront And challenge my self. I have had therapies in the past - Cognitive Behavioural Therapy (CBT), Counselling and Eye Movement Desensitisation Reprogramming (EMDR). Of everything I found EMDR most effective.
     
  19. imanautie

    imanautie TowersStreet Member

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    I think it can be hard for people seperating things into what's due to them being autistic and what's due to other stuff.

    Technically even stuff like being semi non speaking is debated as to whenever it's autism or other conditions. (I say it's autism)

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  20. QTXAdsy

    QTXAdsy TowersStreet Member

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    Ok...I have kept this from many of you guys, but I too have autism.

    Neither proud or scared to admit it but I never really want to bring it up to anyone, only those close to me will know it. I've had a speech problem when I was a kid, was held back a year from joining school and even when I was 12 I did feel uncomfortable about being the 'oldest' in the class, only when I did end up going to college after leaving High School I felt more comfortable about my age given there was a number of people older than me there was a relief for me. Plus I really hated High School and I do not wish to live through that ever again.

    However, I do suffer from Dyscalculia, I'm not good counting and I do fear about trying to balance regarding rent, tax etc. I know I get support there but still I curse myself that I'll never really be good at that and will never quite feel 'normal'. I know like I'm giving myself too much grief but counting and anything regarding money seems important for your lifestyle.

    This lockdown has been particular hard for me and my girlfriend who has autism too, actually worse than I did during her school days and she has find our routine has been really derailed to no end with her fearing suffering from meltdowns and even there have been times I've felt like I can't take it, I've had to go out my comfort zone to make sure she is feeling fine though I'm feeling shaken up by it all.

    On a more positive note though, I have a great interest in Alternate History and on the Alternate history forum I have made a magnum opus timeline regarding the Home Nations in football tournaments as alternate football scores fascinate me, I can give you the link if you want to show you it as it would be nice to see others see it.

    However, what I'm most proud of is that I'm glad I volunteer on a heritage railway in Fife which I have done for the past 17 years true loyalty I know, and I'm so glad I have that in my life as I did fulfil a childhood dream of firing a steam locomotive though I'm still hoping to step up further and end up being a driver. However this propose coal ban does leave me edgy that what I enjoy the most could be ripped away from me and God knows what would happen if that nightmare thought does happen. I have only recently managed to return thanks to restrictions being eased though that is something to calm my nerves. Interestingly you'll find a lot of autistic people in the train community so there is that I suppose and I suppose the theme park community to some extent which I've been reading here.

    Speaking of which, I do love going to theme parks ever since I was about 10 as the escapism has always appealed to me, though this means having to wait to take trips to either Blackpool or Towers and even more if I have to go aboard. This has been difficult given the only theme park, if you could call it one, is that crappy place over near Motherwell and it breaks my heart how everyone down south seems lucky, even if you think that or not, that can't find something to feel proud of it can never bring me that kind of escapism to get away from the real world in which a theme park is suppose to do. And just looking at Europa-Park, hell even bloody Mingo-land, makes me weep that something like that could never happen up here, I just have to let out here.

    Back in the TTF days, I did have one meet up with you guys at LWV and that was many years ago now and I feel bad that due to my location that I've been unable to meet up with many in the flesh. Yes there are the forums but seeing the meet up posts does make me feel like I'm an outsider and that has been one of the reasons I 'left' TS feeling that I wasn't really important. Autism does that to me, maybe if I were to see a meet up in Scotland, that would be nice to meet up with some that have autism too, even if it isn't worth a trip up here.

    This has been something I've kept hidden and seeing this forum made me think I might as well let it out and not try and hide it. I do miss going to a theme park and my girlfriend is aware that it is making feel down and that we will go somewhere when this lockdown is over, it just feels really difficult of late and I'm amazed I've not had a meltdown of some kind over the last few months.

    All in all, I just do what I can to get through life in this difficult times and if anyone wants to chat with me personally about things, please PM me.
     
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    Posted 2nd Jul 2020
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