Sorry if this post isn’t allowed remove if so.
Just wanted to know if any of you have Autism & how it affects your day to day life and how you manage/cope. If there’s any strategies we can share together. Also Autism can cause bowel problems witch I never knew
Neither did I. But what I have said still holds true: If you need it use it, if you don't, please leave it for someone who does!
Ever so sorry my friend I wasn’t referring to you. So don’t know why you felt the need to comment yet again .. I got it the first time round as we all did. I’m doubt no ones gunna use a disabled toilet if they don’t need to . Your just point blank ignorant
I didn’t know that either. I’m not affected by Autism personally but used to work with many children on the Autistic spectrum.
I would imagine coping with fibro on top of Autism would be very challenging, and I hope you get as much help and support as you need.
Hi. I have three sons who are autistic, the oldest was the worst affected when diagnosed at age 3. However he had loads help at special school and now at age 22 and in uni, his friends don't know he is autistic. The things that throw him and upset him, which can usually be linked to a change from what he expected, he comes home and melts-down with us, his parents. When he was first diagnosed he was tested for the Fragile X chromosome which links the autism and bowel/intestine problems. He didn't carry it.
I noticed a previous post of yours saying you had been refused PIP. You need to get help from someone who understands the autistic side as I know that will play a big part in your problems: so much of the difficulties are hidden and not easily understood by someone who has never experienced it. Is there an autism support group near you? You could try the National Autism Society helpline. Or try Citizens Advice Bureau. Hope you get the right advice and help soon.
Someone did recommend them to me but I have very bad difficulties explaining myself and meeting new people I just tend to get stressed and angry 😡 or stressed and upset 😢. I got a help pack when I was diagnosed back in April. But no help everything’s floated away quite fast... x
Hi I've got fibro and ibs and I've been referred for a formal autism diagnosis.
How old r you? X
Me too. I've been told it's a three year wait for formal face to face here!
I was literally seen within a week of my referral? It was self referral at first then my GP referred me but I was seen before my GP referred me as it was a mix up
Hi Lock your post!(will see padlock symbol to the right)
I'm deemed Autistic(Asperger's) it can cause all sorts from internal and sleep issues.
We don't deal with temps well either which causes havoc with me as Fibro just to hot most of the time boil over if faced with anything resembling "warm" yet can be very cold change colour even yet not feeling it(Asperger)rarely ever wear a coat. Yet Chill/Draft and frozen to the bones and can struggle to get warm even get ill like Flu type thing if not sorted(Raynauds)
I had a small stroke around 5 years back causes many issues with the autism as get short/curt with things/people often just want to be on my own or can turn poor.
Don't deal with crowds so well or Tube train etc.
With Autism it isn't how anyone sees it/things it's how my brain perceives it.
You could do the same things a few times/every day then one day the brain will say had enough!
I totally agree. You can force yourself to do something but there’s a limit when you say enough is enough then the breakdown comes . Don’t wanna leave the bed don’t wanna look at anyone just wanna be alone in silence don’t wanna eat .. do you have this? I feel sometimes I’m the only person that goes like this and I’m over reacting 🥴 sometimes I feel I can control what I do but it’s completely out of my control
I'm at that stage in life where i just do whats ME i sort of go with what the brain says/feels.
It's not always the same but i get by but can play havoc with things but since had the stroke it's causing issues as find a conflict.
Hi
You've got my utmost respect being able to cope with all you have. Could you take someone to be your advocate and speak when you are having difficulty? Please take care Lynne
Thank you so much for ur kind words. X
You are very welcome. Please take care Lynne
Hi to imavvb and anyone else reading,
I'm nearly 25 and I have both Autism and Fibromyalgia - also been recently diagnosed with PTSD (although I suspected it for longer). The combination can be hard, even impossible, to manage some of the time.
I feel like since my Fibro has got worse (as it has over time), it's harder to interact in social situations. I think this is because we learn the skill of socialising in a different way - it's not innate for us. So with Fibrofog and exhaustion it can be harder to implement each social skill strategy we've learnt and we can find ourselves acting more 'Autistic'. I can anyway. I know I can't speak for every person with Fibro on the spectrum but would imagine this would be true for most people.
Before I got ill - or before the Fibro got worse - my Autism used to be a lot easier to disguise. But now it's sadly much more noticeable. For example, it's harder to maintain appropriate eye contact (it's like my eye muscles are more rigid - I'm either staring intensely at the person or have a fixed gaze the other way - I had this to a mild degree before but since Fibro it's evidently got worse); I have difficulty suppressing the urge to stim (make a repetitive movement or noise to calm down) in public; and I can have trouble remembering what to say - what the appropriate response it - in a social situation. This can lead to me either having a long awkward pause in the moment I'm meant to respond - or repeating the same thing over and over as I desperately try to say what I want to say. It's not that I'm unaware of how I might come across or of the affect this is having on other people. It's just since my Fibro has got worse I just don't have the energy to keep a handle on it anymore. My coordination is more awkward too. Because I'm so aware of it it's embaressing. If I'm having a bad day I don't leave the house - I feel too vulnerable.
It's so much more than just socialising though. Understanding or being able to do everyday tasks is also more complicated. Difficulty understanding an instruction and the issue of Autism Inertia can also make daily life challenging - and this is only aggrevated by Fibrofog. (If you're interested an Autistic blogger dubbed Unstrange Mind wrote about Inertia and referenced further information on this.)
It already took a lot longer for me to process information, and consequently complete a task, because of Autism. You can imagine since Fibro it's become much longer and it can take what is to most people is a ridiculously long time to complete a specific task.
Fibromyalgia can be unpredictable and the unpredictability of it can be extremely hard for an Autistic person to cope with, as we struggle with change and have a need for routine.
I feel for anyone dealing with both Autism as well as Fibro. Both on their own are very difficult to cope with. And because they're both invisible it can lead to invalidation, and lack of support.
I can understand the fear about navigating the benefit system because I have this too. I know I can't rely on my family forever and need to overcome this, because finding suitable employment isn't going to be easy and I'll need a way to survive without relying on my family. I think the important thing is finding a central person who we trust and who can understand us, to help us.
Xx
I actually feel very overwhelmed because you hit the nail on the head and it feels like I’m not the only one suffering now ( not in a selfish way ). But my god all you’ve said is accurate it’s horrible honestly some days I am happy just speaking to people I can manage the next day I can be very isolated and not want to socialise. But some days I am in so much pain I physically can’t socialise or do what I want. I think it’s horrible to be going through it at a young age as people our age aren’t like the older generation things was different back then. I honestly feel so alone in this world when In fact I have a lot of people around me
But One thing I do struggle with my family wont come to terms with my diagnosis ( Austim ) they seem to think I’ve been misdiagnosed. And until they accept it witch they never will I’m going to be continuously alone ..
Don’t know if I’m the only one but it feels like my Brains constantly doing over time.. I’m constantly going on but I’m glad I got people to talk to because sometimes I feel so alone
Chronic Fatigue blighting my life!
Don't know were to turn
First op post diagnosis 
