Sick of this cr*p no sleep, any encouragement would help.

[pulisa]

I need to make it clear here that I don't see autism as a gift. (That would be ridiculous given the amount of crap I've been through in my life, not to mention my daily struggles)

However, there are aspects to my autistic brain which I consider to be a 'plus', a positive, and yes, a gift. (The way my brain perceives music is that gift for me)

In the autistic community, there are those who hate who they are, and those who don't. We're a mixture of opinions and experiences, all as valid as each other.

P, you know how much I respect you; I love you to bits, and I think you're an amazing parent to your autistic children, but I don't apologise for the terminology I used - re gift in relation to the way my brain perceives music.

Music has kept me alive since I was 5 years old - it's that important.

To me, it's like the dude/dudess/they who designed me said, 'You're going to find life incredibly difficult, cocker. It's going to be megally shit truth be told. You're going to struggle to understand people or to be understood. You'll be bullied for being different and you won't have a scooby why all this shite is happening until you're in your 40s. But, to help you to cope with all this, you're going to be able to experience music in a different way to most people. You will feel music on every level, be able to mentally separate drum from bass and isolate vocals. Your memory with music will be 'machine-like' and that will really impress the crap out of people during pop quizzes (or really piss them off). Music will save your life on multiple occasions. It will motivate you to get through the front door and to walk down the street to school, to work - to anywhere. It will calm and stimulate you, there will be no indifference. You'll also have numerous crushes on male and female artists, and you'll still be wearing band t shirts when you're 52. You will feel totally disconnected from almost every other human until you go to a music concert and then you will discover a connection that only music can bring. Off you go, Nora!'

(Literally just ordered Debbie Harry and Foo Fighters shirts)

How can I consider this to be anything other than a gift or a positive thing?

I should also add (for balance) that I asked my autistic son if he would swap his brain if he could. His answer? 'No. I'm happy being me'. He grunted a bit at first, but I did interrupt him playing Cuphead. Maybe that will change? I don't know. He's only thirteen. He hasn't always been happy, but that unhappiness was due to the ignorance and prejudice of other people. He's happy with who he is now. (And many of us are)

I don't want people to only see the negative side of autism. I am always aware of who is reading what I write, and not just the names I can see at the bottom of the page. That's why I responded to what you said, P, not because I think you're wrong in any way (you're not) it's just that I don't want people to think that autism is a complete shitfest and tragedy. I'm autistic and I don't hate who I am. I don't consider autism as the reason for everything that's shit in my life, and there are positives to my existence as there are with many other autistics.

Anyway, I'm still wearing my dressing gown. Routine's gone tits up today. So, it's on with some motivational music and it's going to beeeeee AC/DC!

Oh Nora...I certainly wasn't referring to your post..I think you are incredibly gifted and motivated and I just wish it were like that for my 2, especially for my daughter. I apologise for being negative when I ought to be more upbeat. You have worked so hard to rise above so much cr*p.

[NoraB]

[QUOTE=Liziam;2056571]Oh please don’t mistake me, I wouldn’t change it but right now in this seemingly endless hell I would to stop this becos of the adrenaline and constant anxiety right now.
I wasn’t bullied at school even though I was different my mum and sister have adored me no matter what I was and my nan, and yes many times I see things very differently and it’s wonderful and I know it’s who I am.[QUOTE]

In my experience, autism is great or it's crap, there's no midway.

When I put those headphones on and play music, it's 'Hell yesssss, Autism!!'

When I have to drive somewhere strange and I'm having to inch my way down roads on Google Maps on the laptop for an hour, or having to ask someone to sit in with me while I do a trial run, then it's crap.

Actually, driving has a few 'craps' involved. I can't just get in the car and drive like Mr Batty, it's a military operation (which totally goes tits up if someone parks in my space at Tesco)

Also crap when I can't speak (situational mutism)

Crapper still when I do speak and I jumble my words, am inappropriate, or I start banging on about an interest of mine and I'm basically told to shut up.

There's actually quite a large list of crap, but music makes up for it all. (Radiohead's Creep played loud and on repeat (fifty times) oh yes!)

An autie friend of mine bought a Woojar vest and I had a go. Oh my God! I was in HEAVEN!! I could feel the bass in my chest, like you can in a disco (Do we still say that word?) I'm currently in a bargaining situation with Mr Batty. (Might have to sell some stuff, like a kidney, but it will be worth it!)

just it makes life when you’re this low a bit harder to get back up like we have an extra rung on the ladder we have to climb to get there. If that makes sense.

How we cope with life (and on a daily basis) depends on the state of our mental health. This is why we are more capable some days, but not others. (Something which perplexes most NT's)

So, when a succession of life's shit comes our way, we can't handle even the basic stuff. Everything goes tits up. (This is you at the moment, Liz)

im so pleased music does that to you because of autism that’s amazing.

I think it's most likely a form of Synesthesia. This isn't unique to autism, but a lot of autistics do have this. (I also see colours when I listen to music with my eyes closed)

I'm so happy to hear that you were never bullied at school, Liz. That's a massive plus, because most autistics are. I was bullied from day one, and not only by children. (Teachers too)

[pulisa]

Russell Brand is interested in synaesthesia, Nora..First time I'd heard about it. Definitely something to talk about.

[NoraB]

Oh Nora...I certainly wasn't referring to your post..I think you are incredibly gifted and motivated and I just wish it were like that for my 2, especially for my daughter. I apologise for being negative when I ought to be more upbeat. You have worked so hard to rise above so much cr*p.

No need to apologise, P.

I wouldn't say I was gifted, but I will absolutely claim 'motivated'.

I wish it was the same for your daughter too. I take the crap, day after day but I find ways to cope as well as I can, and they haven't always been healthy ways. If someone tells me I'm not good enough, I dig in deep to prove them wrong. I literally put myself through a college course because somebody said I was 'thick'. I passed with merit and that's a miracle given that I spent most of the time in the college loos with severe attacks of IBS. (But at home I was a fiend with those books!!)

I do understand my limitations now. It's been a long hard road though; I was 47 when I was diagnosed autistic. And it always will be a hard road, especially as I get older. But my mother didn't only pass the autism gene onto me, she passed on her rebellious attitude and determination. I get these from her too. What I didn't inherit was her ability to live independently, but that's also part of the reason I turned up for the autism assessment, because I knew I would need support in later life (especially if I'm ever left on my own) and to get the right support, I need a formal diagnosis.

You are a top Mum, P. You have selflessly given your life over to keeping your daughter safe, and you should be proud of yourself. You're hurting because your autistic child is hurting, and I know how that feels.

[pulisa]

Yeah, seeing read out like that it’s in wonder I’m like this, and it was only last week I hit rock bottom completely, and I’m expecting to feel better after only 10 days, I’m very impatient. No I don’t work am on benefits wish I did work and I tried but it was hard just not the companies out there who help out with the autism side, was only a few part time jobs when I was in my 20’s, just couldn’t handle it.

I do take the melatonin at 2am and Valium at like 4am not much else I can do, I know it’s addictive I know I shouldn’t be on it, but that’s life at moment I have to deal with it.
I can’t keep thinking about how addictive it is, I’ll deal with that when I’m able too. Sorry about the bold text in that reply just now no idea how that happened but fuzzy headed of course.

oh my drs my god, when I did get to see a dr the day after the A&E night my sister called them up she spoke to a dr who just said ring 111 I mean what??? They can’t do anything and we had literally rung all the numbers and gone to A&E so we just went there and demanded to see a dr whi said no ring a helpline well my big sister lost her mind, as you can imagine. So I stood up out on the mask us autistic people have to put on and realised her screaming these v v v young receptionists wasn’t helping (wasn’t her fault) and I told her to stand outside she did, I took over and stated cry and saying what should I do slit my wrists right here in the surgery ???
Then a lovely nurse who heard the commotion came out and spoke to me and I told her it all how we’ve done it all rung every number imaginable been to A&E all said goto your drs, so the nurse brought me into a room and went directly to the dr and said what was going on and she finally after her last 2 patients at 5.10 saw me I told her that I needed new antidepressants as clearly mine had stopped working after 10 plus year which makes total sense and I even had to say what the psychiatric nurse at hospital suggested I take dr didn’t look any others up, the she said I will need a phone appt with yiu in 2 weeks ( no not face to face anymore don’t know who they are seeing as the place is empty and they say on phone all the time) so I went out and asked receptionist to make an appt in 2 weeks as dr told me too for a review of meds he said we can’t do 2 weeks ahead ???? Dr said yiu could, so was advised book an appt via Econsult ina week so we have and it’s booked for next week a 10 minute phone call on my sisters phone number I’ve no idea why but if we change it we will lose it. See how it’s making me more ill. Just pray she rings now, as I’ll need my old antidepressant taken off and new one added to repeat maybe upped from 20mgs I’m on I’ve no clue. There’s so many issues with that drs they stopped my Valium and took it off repeat just like that no telling me, my sister had to make HUGE complaints as it’s so dangerous. I’m also on Propranolol for palpitations that will be an issue with them at some point. Yeah I know shouldn’t be on them but again that’s for down the road when I’m not this sick with all this cos this is illness it’s mental illness people seem to not realise I think.


god it’s endless sorry for the ramble

Liz, would you consider asking the GP to refer you to your Community Mental Health Treatment team so that your meds could be properly reviewed by a psychiatrist who will have far more knowledge about what could help you sleep better and consequently function better? My son is on a whole load of meds following a breakdown and lengthy hospitalisation 3 years ago but he has no problems with his sleep now.

[pulisa]

No need to apologise, P.

I wouldn't say I was gifted, but I will absolutely claim 'motivated'.

I wish it was the same for your daughter too. I take the crap, day after day but I find ways to cope as well as I can, and they haven't always been healthy ways. If someone tells me I'm not good enough, I dig in deep to prove them wrong. I literally put myself through a college course because somebody said I was 'thick'. I passed with merit and that's a miracle given that I spent most of the time in the college loos with severe attacks of IBS. (But at home I was a fiend with those books!!)

I do understand my limitations now. It's been a long hard road though; I was 47 when I was diagnosed autistic. And it always will be a hard road, especially as I get older. But my mother didn't only pass the autism gene onto me, she passed on her rebellious attitude and determination. I get these from her too. What I didn't inherit was her ability to live independently, but that's also part of the reason I turned up for the autism assessment, because I knew I would need support in later life (especially if I'm ever left on my own) and to get the right support, I need a formal diagnosis.

You are a top Mum, P. You have selflessly given your life over to keeping your daughter safe, and you should be proud of yourself. You're hurting because your autistic child is hurting, and I know how that feels.

Thank you, Nora but I'm not sure I have done her any favours other than always being consistent and reliable. My genetic legacy to her is something she can't cope with so I have to do all I can to teach her to manage her fears and minimise her perceived "failings".

Managing and treating depression succ.essfully can make all the difference to quality of life...even more so with autism

[pulisa]

https://www.nhs.uk/medicines/melatonin/

Just wondered whether the regular melatonin use could be making your symptoms worse? Particularly the leg pain?

[NoraB]

Managing and treating depression succ.essfully can make all the difference to quality of life...even more so with autism

I'd say that it's vital when it comes to autism.. (Autism itself isn't the kicker; it's the MH issues that we develop, and other people's shitty behaviour towards us)