Hi :)

Hi Kate, I'm so sorry you are struggling so much at the moment with your anxiety. It's so hard isn't it when it gets really bad. I used to find with mine that I had flare ups where it went from mild to really severe and now it's constantly severe can't escape it. You're right only people who have it really understand what it's like. The effect it causes is just terrible in every way, tiredness is a major pain. I'm tired all day every day. No nothing has or is working for me yet. I try so many things but nothing helps. I even tried eating healthy stuff because that's meant to help but nothing worked. It's getting to a point where I might have to see my doctor but I really don't want to do that because the thought makes me extremely anxious! Don't want to go but I also can't live like this forever either. Have you found anything that helps you Kate? I hope yours gets better soon :) no one should have to live with this sort of thing. It's so hard.

I've got my dog but she is a coward so doesn't offer much comfort haha. I love her to bits though. I've thought about going to more busy places but even a few people is too many for me and it sets off the anxiety - and suddenly I'm more anxious than I was before. Wish I could cope a bit better but I can't. I try all the time but it just is so bad I really am lost now. Hate it so much. I do try to walk when I can but because I'm so scared and on edge I hardly leave the house now but I don't think that's healthy for me so I do force myself out at times but the end result is anxiety and panic attacks. Hopefully your walks are a lot better! 

I really hope things improve for you Kate. :) 

Thanks Kate,

I hope you don't mind me saying this.. I really like your name. I have a friend whose daughter is named Kestrel and I am really keen on alliteration, sometimes obsessively so!

Don't underestimate people power! I think if we all could band together we could make a difference. I have for now laid down the campaigning (asides from my forthcoming video) as I am too unwell from working to long and hard at it and from my current situation. But do stay in touch in case I ever start up again and am in need of some signatures. I don't think my failure was down to much beyond not understanding social media and being to express myself coherently (despite how my writing may appear!).

Thanks for the best wishes,

I am returning them back (I want them I just like sharing :) )

Cheers, 

Jim

Hi Jess - yes - I really struggle so much with anxiety at the moment - I’m trying my best to cope but not doing great to be honest. I’m sorry you’re experiencing this too - only people who live with this know just how horrible it is. It’s exhausting too. Have you found anything that really helps you with your anxiety and panic attacks? 

I’m sorry you don’t have anyone to walk with - I would also be a bit nervous about walking in remote places on my own. Maybe there are some places that are busy enough that you could though? Some parks are busy enough to feel quite safe. We quite like walking round cities/suburbs/villages sometimes too. Sometimes we go out to a city really early in the morning so that they’re aren’t many people about. Or perhaps you could find a walking group with not too many people? I wonder if there are any walking groups just for autistic people? If there isn’t there should be! 

Hi Kate. I hope you don't mind me replying to you. I just wanted to say that I am so sorry that you suffer from anxiety and panic attacks, I do as well and it's really hard to get through each day with this. Do you find that as well? I live on the edge of my nerves and going out or being around people makes me so anxious I feel like I'm going to be sick! Maybe at some point I'll improve with this but so far it seems to be getting worse.

Going for walks with your husband and youngest son sounds lovely. I like to go for walks as well but on my own because of bad experience I had a few years ago. Being with people makes me so nervous.

I’m glad your friend’s Mother was there for you - that’s wonderful. 
There’s such a lack of support for people from the state/govt. though - it’s not good enough. I wish we lived in a kinder society. Maybe in the future things will improve - but it won’t with the current lot in charge. I hope you get a good social worker who is empathetic and supportive. Best of luck to you :) 

Thanks Kate,

I hope you are having a good day. I was helped in large part by the kindness of the mother of my old school friend and now lasting power of attorney.

She helped me get back to fitness physically, mentally, emotionally and spiritually. Without spending that year out (I have now fallen back into great difficulty) I would not have known that I need a more supportive and structured living situation in order to thrive. Unfortunately that has not been forthcoming in spite of the recommendations of an assessing social worker! (I make brief mention of this tomorrow in my first video directly covering autism should you be interested to know more).

I am on the urgent waiting list for a social worker (again) though I am not that hopeful given the paucity of appropriate accommodation and services for someone with my needs.

For some strange reason (errors in future prediction) I remain hopeful. Perhaps I have to be?

I've just returned from singing as part of the (very) small (very) amateur choir of which I am a part ('singing for well-being). We were there for the opening of a small garden by a library (I think! I am so easily confused! Must be the booze (yes I have quit though I am sure it has affected my brain regardless)!

All the best to you and your son. I struggle with inappropriate laughter at times. If I think of something funny my threshold is low and I will spontaneously laugh (with my very loud voice!). It doesn't matter if i am stood in a post office queue or some such (which I rarely am)!

Take care and thanks again for your response.

Fear is very toxic all round isn’t it? My life has been greatly negatively affected by fear in myriad ways (in fact it almost killed me once due to a medical issue that would have been much reduced if I hadn’t been so anxious about taking action about it). I think people are unsettled by noise that they are not expecting - I for example when people have Tourette’s others find it very difficult to cope with. Again - because they don’t understand it they are fearful. It’s very sad that there is so much misunderstanding about things like this. I worry that because my youngest child is male that as he gets older any behaviours he shows (like pacing around) might be viewed with suspicion or as threatening in some way. We were in the bank once and I was in the queue (my son was about 19 at the time) and he was pacing up and down and a member of the bank staff approached him to see what he was doing - I think they were concerned by his behaviour in some way. I found this very annoying and unnecessary that they should view him with suspicion for something so harmless. 
I hope it goes really well with choir tomorrow (or today?) - it’s great that you’re doing that. 
Good too that you don’t drink alcohol anymore - that must have been difficult to overcome. I’ve often used alcohol to cope with my anxiety - but my body can’t tolerate large amounts so it didn’t become a big problem in that sense. But it’s easy to come to rely on it - because it numbs things doesn’t it? Ultimately though it’s not the answer - as when the fog clears all the anxiety is there again. 
Singing is healthier that’s for sure :) 

Hello Jess. Thanks for the Welcome. At least we all have something in common. Thats a good start.

Hello, welcome here. 

I'm new as well. Hope we both enjoy being here.

Hi. I am also new here having been recently diagnosed. I can relate to your words but i,m sure we could write a book about how we perceive the World. Anyway, Hi again Pru.

Hi, thanks Jim. Sorry I missed this reply. Still figuring out how everything works here :) thanks I like it so far. And please don't worry I've contacted a few people already to help me. Thanks Jim I do love singing. And I also love Scrabble as well, good fun and challenging at times. I'm sorry to hear about your speech, that must be difficult for you. Hope your ok! I know stress can cause a lot of negative effects unfortunately. When I'm stressed I find it hard to talk because my throat tightens up. Hope you have a lovely day as well xx

Welcome Poppet,

I hope you enjoy these forums at the National Autistic Society.

I am troubled by having read the end of your profile. There are organisations that can help.

I would love to hear you sing!

I am not very good at chess though I enjoy quiet activities like scrabble and upword (I think it's called).. and music!

I am currently mute beyond singing and communicative sounds not comprising speech.. and some other sounds if I stressed etc.

Wishing you well and a great day!

Jim

Jimberry and the Couscous Channel

Hi welcome. I just joined as well 

Thanks Kate,

Perhaps your son might experience more fear if you did tell others to mind there own business; as who can educate the ignorant in such short while; and many aren't interested as they cannot relate and therefore are unlikely to empathise.

I find that the fear of others causes me to fear as well as being concerned for their fear. Fear breeds fear and love begets love.

When I am stressed I make vocal noises, whoops and so forth which increases my vulnerability and the unwanted attention of others further exacerbating the 'fear dynamic'.

The very small informal choir I am honoured to be a part of are singing tomorrow. Which should be exhausting (with my cirrhosis) yet cathartic and enriching

I think we may be singing at a retirement home (as we sing for charitable cause and for our own and others well being) though as I type I think it may be at a library(?- who knows why!).

Unfortunately the years of alcohol abuse (I am now dry 7 years) and over two decades of inappropriate, unnecessary neuroleptic 'treatment' due to misdiagnoses (I am now 'clean') have impaired my attention and memory! 

Wishing you and your son all the very best,

Have a great day!

Jim

Jimberry and the Couscous Channel

I hope you have some luck with joining a choir and/or finding a place where you are welcomed to sing. Its a shame that you are experiencing store detective attention etc (!) - I think people do get disconcerted if they see a person who seems a little different - in however small a way. I think there is a lot of fear in society generally and it makes people quite suspicious and anxious about people who behave in a way that doesn’t fit the ‘norm’. My son stims and paces around quite a lot and I see people looking at him sometimes - and I feel very defensive on his behalf. I feel like telling them to mind their own business - but I know he wouldn’t want me to do that! 

Bach got married and had 20 kids though only 10 reached adulthood. 

Jim

Thanks Kate,

I was in choirs years ago but have not been able to join anything for a long time besides a very small choir which is just a handful of people who get together for their mental health so its very very informal and certainly no classical music or singing from sheet music or anything like I did in my past.

More recently...

I phoned the director of music of a parish choir and he never returned my call.

I applied to a cathedral choir and completed the equal opportunities section stating that I am autistic and they did not acknowledge my application.

I was overheard at a church I snuck into yesterday and I think the lady was high up in the church from the way she was talking. Anyway she said she enjoyed my singing and to come back. I left her my Youtube name (same as here) as a way for her to contact me after we found a pen and paper as I am mute presently.

She did not seem to know much about autism and may be frightened after seeing my channel but I shall try and go back in a few days and hopefully no-one will come in and I can sing or she might come back and either be just as welcoming as before or... who knows! I tend to get a lot of people wondering who I am or what I am doing when I am out and about. I am the one that gets followed by the store detective and if waiting around anywhere, even outside my vacated council flat as yesterday; it's not long before police show up to ask me who I am and what I am doing.

I guess I must come across as really strange. But hey there's not a great deal I can do about that. I move atypically, I behave atypically!

Personally I consider Bach the genius of geniuses not simply the composer's composer. I wonder if he was ... you know... but then he had 20 children!

Maybe being weird wasn't so weird for his time and place.

Take care and have a sneaky sing yourself if you can find somewhere private!

Clear the cobwebs!

Jim

I love Bach too. To me Bach seems to be almost perfection - it feels so perfect to almost be beyond the ability of a normal human being to create. Super measured and calm and perfect. So different to Beethoven which seems full of human passion and the storms of human emotion. 
Struggles with speech are very familiar to me as my son has Selective Mutism. People who don’t think about speech have no idea just what a struggle speech can be for many autistic people. It’s a really tough thing to deal with and it’s hard to get good support. 
it’s great that you sing Jimberry - singing is so good for our mental health I’m sure. It’s a release of emotion isn’t it? Have you thought of joining a choir? I think a lot of singing groups have sprung up in recent years. I think I’d be too self conscious to join a singing society though - even though deep down I would like to. I’d like to be more sociable in theory - but when it comes to it I find it far too stressful. It’s a shame. 
l’ve been wondering recently about autism and isolation. I’ve always felt I didn’t want friends but as I get older I wonder if a part of me did all along - but I was just to scared to be more sociable. I’m not sure anymore. It’s lovely to talk to people on here. I think autistic people get on well with other autistic people maybe? People seem so nice on here. 

Hi Jimberry - yes - I love choral music. I wish I could go to more major concerts now but I still don’t feel able to because of the pandemic. Big highlight choral concerts from the past I went to were Beethoven Symphony No. 9 and Mahler’s ‘Symphony of a thousand’ No. 8 - both with a huge choir that was just fantastic! Very exciting! 
in recent years though we’ve been big fans of Choral Evensong (at cathedrals and University Chapels) because it’s free, quieter and more accessible for us. It’s less stressful because you don’t have to get tickets or plan anything - you can just turn up if your nearby. Also very small ‘audiences’ which I prefer as I don’t like very busy places or vast amounts of people. So it’s quiet and relaxed, and you don’t have to plan everything to be there. I really recommend  it. In some places the quality of the music is absolutely wonderful. 
Do you ever go to hear live music Jimberry? Do you have any favourite pieces of choral music? 

Hi Pru - to be honest I’m not coping very well with my anxiety at the moment. I’m doing my best to try all the strategies I have but am still really struggling. What do you do to help with your anxiety and panic attacks? I do definitely find that getting out into nature is one of the best things. Generally I love being at home but recently I feel I’m stuck in a groove of worry etc and being in the house all the time isn’t helping with that. We went for a walk the other day and just followed the public footpaths without really knowing exactly where we were going (other than a vague sense of direction) and it was lovely. We ended up doing an 8 mile walk - much longer than we intended! Both my son and I are struggling with anxiety so it does us both good to get out. We take snacks and drinks - it’s nice. 

I’m incredibly nervous about going to the doctor too - sometimes my husband phones them on my behalf because I find it so difficult - so I can really relate to that. I worry that I withdraw from things so much though due to my anxiety - as  I feel it can become a bit of a vicious circle - the less I do things the harder I find it to go back to engaging with some aspects of life. Part of me would like to go and live on a remote Scottish island - maybe then I’d be able to relax more?! Or maybe it would be worse and I’d just focus more on my worries? I don’t know. I do like going to places though - and so would miss being able to have a day out in Cambridge or wherever. I like to roam around interesting place. 
Talking of Cambridge - do you ever go to Choral Evensong? We sometimes go to cathedrals or University chapels to go to Choral Evensong - they have the most fantastic choral music and it’s totally free and anyone can go and enjoy it. Some cathedrals have a Choral Evensong almost everyday. It’s a great way to access free live music of a very high quality. 
I do feel very lucky to have met my husband and have two children (my eldest has their own place and a girlfriend now). To be honest I’m not even sure I’d still be here if it wasn’t for them - as I do struggle to cope with life and might have given up without my husband’s support and the fact I feel I need to be here for my children. I know some people view autism as a ‘superpower’ but most of the time I just find life very difficult and very stressful - I certainly don’t feel very powerful because of it. 
im sorry you don’t have anyone to walk with. Although sometimes I have gone on walks on my own and really enjoyed it - it can be nice can’t it? Are there any walking groups in your area you could join? Or do you prefer walking on your own? What sort of landscapes do you like to walk in? We like Derbyshire, the Lake District, and Cornwall. But also local walks too with are less spectacular but still nice - just your regular English farmland footpaths. Still good. 
I’m sorry you’ve been feeling lonely. You’re not alone - lots of people on here can really relate to what you’ve said here. People on this forum are very supportive and we can relate to each other’s struggles and ways of thinking. It’s so good to feel that isn’t it? We’re not alone because we are chatting on here.