Article from an autistic woman in The Independent

[ofwarren]

www.independent.co.uk/voices/neighbours-cancelled-autism-b2009167.html?utm_content=Echobox&utm_medium=Social&utm_campaign=Main&utm_source=Twitter#Echobox=1644238414

I've not watched neighbours for years but I really feel for this woman. Her special interest is going to be taken from her and she must feel so disoriented and upset.

It probably seems trivial to an NT person but I'd be absolutely devastating if mine were taken away. I don't know what I'd do because my "things" have been what I've been researching and following all my life. It must be almost like a bereavement.

That's a shame isn't it? I wonder if she could access it online somehow. It is difficult when long standing comfort things are taken away.

My favourite coffee shop in one of my favourite and very relaxing places has taken to playing loud pop music I've been going there for 22 years and can never go back now. It's a tiny village so no other places to have a coffee there. I'm unreasonably sad and angry.

Oh that's awful Barrow
I could never sit in a cafe that plays loud music. I'd be really upset too.

Barrow, how approachable are the cafe staff? Could you ask them to turn the music down, and explain that it is stressful for autistics?
I did this in my branch of Tesco when they had ear splitting Christmas music one year. I complained to the management by email after I had to walk out. They apologised, and when I went back the next week it was right down to faint background level.

Barrow, I'd definitely say something before I gave up on the place completely.

Re the special interest. It is a shame for the lady. At least they'll be a huge back catalogue I guess and they'll be fan sites. Not the same though.

I tend to have quite short lived special interests, but running has stuck around for 4 years now. I'm pretty bad to be around when I'm injured.

I asked them to turn it down and they replaced it with jazz, so no real improvement. We visited a few weeks ago and you could hear the music booming through the thick oak front door. Ds2 started to look very unhappy and finally confessed that he didn't want to go in - it's a bit of a journey from our home - and I said "no problem, we'll find somewhere else", but I knew then I'd never be returning. End of an era for us as I took the kids there in their prams.

I don't mind low relaxing type music on in the background, but not Cardi B type blasting out. I wouldn't care but it's an overpriced 'naice' type place that has a customer base of middle class older people and mamil cyclists. I doubt they'll appreciate the contemporary racket. It's changed hands and the staff are all younger now. I hate it when music is clearly just on for the staff. They're at work, can't they put customers first for a few hours?

I get like this about particular brands I've become attached to. Although I don't think it's quite of
the same magnitude.

"The only thing that really stays the same is that everything keeps changing"- once said somebody famous, I believe.

Amazing what you can come up with when you've had a few

Night folks.

@BarrowInFurnessRailwayStation

That's a shame isn't it? I wonder if she could access it online somehow. It is difficult when long standing comfort things are taken away.

My favourite coffee shop in one of my favourite and very relaxing places has taken to playing loud pop music I've been going there for 22 years and can never go back now. It's a tiny village so no other places to have a coffee there. I'm unreasonably sad and angry.

Oh Gosh, Barrow. That's a nightmare. I used to own a café and played very quiet Smooth radio which you could actually barely hear. I'd have been more than willing to oblige, if someone asked me to turn off. Why not write them a little note? Fingers crossed they stop it

My favourite toothpaste has changed their formula. I have bought every tube I can find, but I know sooner or later I'll have to go through the awfulness that is finding a new toothpaste I can put up with :(

@RainbowZebraWarrior I'm really embarrassed and uncomfortable about asking them. I'd feel like I was being a brat or something. I know it's unreasonable I'm the sort of person where I'd rather just leave and never return than try and fix the problem. I have no faith that I'll be able to even speak to them properly. It's really frustrating as ds2 always asks to go there and he's 17 now.

@duvetdayforeveryone I once bought 40 bars of original pears soap because they were changing the formula and the new stuff wasn't the same. I still have about 30 bars left. I've also bought 20 tubes of my favourite toothpaste because it's not sold in many shops. I order it on ebay.

@Babdoc

Barrow, how approachable are the cafe staff? Could you ask them to turn the music down, and explain that it is stressful for autistics? I did this in my branch of Tesco when they had ear splitting Christmas music one year. I complained to the management by email after I had to walk out. They apologised, and when I went back the next week it was right down to faint background level.

I did this at the local pool which always has music piped into the changing rooms. They were really nice and always turn it off completely while I'm there.

The toothpaste one resonates as my son really, really struggled when they changed the flavour of his toothpaste.

The author has also written a book, I really enjoyed it book

[quote BarrowInFurnessRailwayStation]@RainbowZebraWarrior I'm really embarrassed and uncomfortable about asking them. I'd feel like I was being a brat or something. I know it's unreasonable I'm the sort of person where I'd rather just leave and never return than try and fix the problem. I have no faith that I'll be able to even speak to them properly. It's really frustrating as ds2 always asks to go there and he's 17 now.[/quote]
Argh it's an absolute nightmare isn't it? I'm at the point now of absolute avoidance of everything, but still keep trying to push myself. And of course, then it becomes exhausting x

I had PIP claim in recently for physical issues. I also mentioned mental health issues. The response was "you seem to have coping mechanisms in place" Aye, my coping mechanisms are complete avoidance.

@RainbowZebraWarrior that's tough. Do you avoid going out as well? I like to see the outside world, but I avoid people like the plague. I only want to see trees, fields, animals and birds. I can't go in the local tesco 'cos of the noise level, it's like a bloody rock concert in there 😖

I've never been able to face applying for PIP. I worry I might get angry. I'm really good at sabotaging my attempts to reason with people because I end up ranting.

I barely speak to or see anyone at all @BarrowInFurnessRailwayStation I simply cannot deal with people or questions any more. I'm trying so hard to interact with daily life, but it's getting harder and harder. I love nature and I get my fix of that by just listening to the birds every morning.

I'm angry. Every day. Mostly with myself. Get stressed at every little thing. I applied for PIP because I filled a form in for my Mum who has cancer and I knew she was entitled to Attendance Allowance. She got it with no questions asked within 6 weeks (mind this was at start of Pandemic) Found the strength to apply for PIP for myself. Not going to lie, it was awful. Cried during telephone assessment, took it all very personally when they questioned me about how bad I struggled, but I've found the strength from somewhere (god knows where) to fight them in an appeal as they don't seem to understand how bad my life is.

Key points for me have been that I should have told them exactly how much I struggle physically due to Ehlers-Danlos syndrome and co comorbidities. And also, I didn't actually have a diagnosis of ASD at the time so they didn't believe how much I struggled. Even though I explained how much my traits limited my life. Like I can't get in a car with someone else. I don't have a partner to help me with things and how much I avoid every day interactions. I'm incredibly insular, but I know now that if you are honest and tell PIP people that you really cannot do normal things because XYZ they actually get it. They aren't the Devil incarnate, they are rightly trying to filter out the chancers.

Like everything in ND life, it takes a lot of emotional energy.

I'm so sorry you're very restricted like this 😔

Oh I feel for her.

One of my special interests is travel and tourism. I love nothing more than go on holiday websites, research stuff, price things up compare stuff. It calms me and sometimes I image actually going to these places like a normal person, truth is I don't travel well.

Well the pandemic stopped that. Every website covid this, covid that. At first all the sites just had a disclaimer page about cancellations and whatnot. You couldn't price anything, couldn't research facilties. Nothing.

Might sound trivial to some but I was very lost for a good few months.

I'm lucky that it's all come back now. I was so happy I even booked a cruise - BOOKED!