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autistic support thread, re: anxiety/loss of routine/not knowing what will happen

23 replies

theotherfossilsister · 18/03/2020 20:08

I know there are huge problems right now for everyone, and it is far worse for people who get sick, but I wondered if we could have a mutual support thread for those who are autistic?

I am struggling massively with panic/ocd symptoms. I'm terrified of the news, and lack of routine/knowing what's going to happen. I am scared for those I love, and I feel very lost at the moment, and anchorless.

Anyone want to talk about this, and their strategies for dealing with how scary everything is?

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lborgia · 18/03/2020 20:14

I'm so sorry you're dealing with this extra challenge, it must be really distressing. I'm not handling it well, but both my children are home so I'm automatically having to fake feeling ok for them. I hope someone will come along with some helpful strategies.

Meanwhile maybe Google can help? Whilst you're looking for information on coping exercises, at least part of your brain is distracted. Sorry, but pointless, but wanted to answer!

SoloSolow · 18/03/2020 20:17

My adult son has ASD and also mental health problems. His routine is to buy what he needs only for the day. No matter how much I try to get him organised, he still expects to be able to go to the shops everyday.

LaneBoy · 18/03/2020 20:18

Signing in, I’m autistic too.

TBH I think in a way I would almost prefer much stricter rules from govt at this point - I have been down to essential trips out only already and the amount of panic buying and coughing people merrily going about life really angered me.

I’m ok generally with staying mostly home - messenger chat with friends is a big part of my life anyway and DH and I are both unable to work due to health issues (luckily issues which don’t put us too firmly on the vulnerable list, other than me having ME) and we are homebodies with a decent size house thanks to social housing moving us in 2018.

But I’m gutted not to be able to attend a weekly SN group with my toddler, where I really get on with the staff too - I will really miss that.

lborgia · 18/03/2020 20:32

Hey @theotherfossilsister - just checked my email and had a new message from ADDitude (site for adhd and add)..with exactly this stuff in mind. Hope one of these might help.

Free ebook on mindfulness, reducing anxiety

Coronavirus library/toolkit

This is from the letter itself —
“The next few weeks won’t be pretty, but we can make it to the other side by supporting one another whenever and however possible. At ADDitude, we understand that we can’t realistically erase your daily challenges, but that doesn’t mean we can’t try to lessen them or at least show that we’re thinking of you. That said, we’d like to offer the following to our loyal readers:
Our ebook Mindfulness & Other Natural Treatments for ADHD is now free of charge in the ADDitude Store. We hope you will download it and put to use its strategies for practicing deep breathing, yoga, and mindful meditation during this stressful time.
Our ADHD experts are adding daily to ADDitude’s new COVID-19 library of articles about parenting, working, and managing anxiety during the time of coronavirus.
The ADDitude editors are actively seeking input and requests from readers: What resources do you wish you had at your fingertips? What problems are already popping up? How can we help? Click here to share the comments that will help us craft new content in the weeks ahead”.

Catrescue1971 · 18/03/2020 20:39

Children with ehcp can continue to go to school.

theotherfossilsister · 18/03/2020 21:32

Thank you so much, especially @lborgia for the newsletter but all of you. I was a bit scared to post and its good to meet others in this situation xx

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theotherfossilsister · 19/03/2020 16:09

hello, how is everyone autistic or with autistic children/dependents doing today?

I went for a circuit of the park this morning, and will spend afternoon cleaning house. Might go for another circuit afterwards, or maybe even down to the beach, but that is a two mile walk, and I am not willing to risk getting too cold or needing to take the bus home.

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LaneBoy · 19/03/2020 16:34

I’ve been feeling ill today so not done anything. Bit miserable. Really glad we are allowed to exercise, hoping I will feel able to tomorrow.

DD1 is upset about not being able to see friends in person but she has been getting on with google classroom stuff while FaceTiming friends. DS mostly oblivious.

I’m anxious not knowing if we will have lockdown or not, I hear conflicting info and the uncertainty is driving me mad

haba · 19/03/2020 16:40

We are isolating due to DH's underlying conditions, but DD insisted she had to go to school today, but has agreed to be taken each way in the car, and not to go in tomorrow.
DS is fine, though his anxiety has increased hugely, but DD will go insane probably by ooh Sunday evening I think!
What fun times ahead...

WeakandWobbly · 19/03/2020 16:55

Yes, really worried about the lost of routine etc. Half term was a nightmare because the weather was terrible and DS12 won't go out willingly. Sometimes it's just not worth it.
To give him some ownership, I will ask him to draw up a spreadsheet of activities for each day. He loves an excel document! Hopefully that will keep us going until the weather improves. I've also borrowed about 40 books from the local library before they close 'until further notice'.
School have said they'll send home work electronically but he's already said he won't touch itConfusedAngrySad!! Any more ideas welcome.

haba · 19/03/2020 17:26

Well, DD is home now, and about 40% we're off today! She is beginning to meltdown already...

HatRack · 19/03/2020 17:35

Loss of routine and unpredictability are making me more anxious than normal. Also having a house full of kids is triggering my sensory issues.

AspergersMum · 19/03/2020 17:35

We're on day 3 of self isolation and we have settled into our new routine. Bit of schoolwork in the morning, chores, leisurely lunch, movie or TV afternoon, drive to middle of nowhere to run around. It is working well for us but I do have a problem of worrying about food scarcity which makes me binge, which makes me worry about food scarcity. It's so dumb but I can't help it! Avoiding the internet would probably help!

theotherfossilsister · 19/03/2020 19:55

Sorry to hear that @LaneBoy physically or mentally? I too am really happy to be allowed out for a walk - although I've been saying I'll go out for the last hour and a half, and frittering time instead.

My feeling is that lockdown will come, but hopefully we can still go out to exercise and shop for food, and it will be OK. I'd feel better if they implemented it, I think, as the uncertainty is making me a bit mad. I think it might also mean pubs can close and still pay staff, etc, if it's government mandated, but not sure about that.

@haba that sounds hard, does she do what my mum calls the autistic concrete mixer thing, where you become so focused on one thing and you just turn it over and over and over in your head, and things like going to school on a specific day gain huge importance? I used to really struggle with that. Are both DC autistic?

@WeakandWobbly - that sounds so hard, although excel spreadsheet sounds good, and might do one for us. (we are adults, but still struggling, the thing I like about work is the shape it gives to my life.)

Library does Ebooks and Audio if that helps (Am librarian so happy to talk to you about all the online resources, for ages.)

@HatRack - my anxiety is pretty bad at the moment, might climb a hill tomorrow or walk down to the sea. I am a bit scared of tiring myself out though, as I am absolutely unwilling to get on a bus at the moment.

@AspergersMum new routine sounds good, especially running round in the middle of nowhere. Binging less so, but I guess if anyone has issues with food this will trigger them. I have lots of obsessive compulsions around food, and they all seem to be coming out to play at the moment and making me crazy.

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haba · 19/03/2020 22:14

Both DC have AS, yes, and the not knowing is the huge thing, on top of loss of routine. DD needs routine far more than DS does but she knows how to handle anxiety a bit better, so it's swings and roundabouts. She utterly adores school- she turns up over an hour early every day to socialise with her friends too Blush

DS is a bundle of nerves- he's Y6 so lots of special things are going to be missed through school being closed. Some he's not bothered about (disco etc) but he's gutted about their residential being cancelled. He really struggles with eating/food and he hasn't wanted to eat which is a bad sign. He's already really underweight so have been trying to feed him up but the supermarket issues where we mean that meals could become rather odd combinations to say the least. Which will mean he just won't eat.

Librarians are quite my favourite people btw Smile
I know so many wonderful ones! DS is a complete bookworm too.

LaneBoy · 20/03/2020 08:28

Physically fossil I had a bit of a fever (very unusual for me even when unwell) and the symptoms of tonsillitis/throaty virus. No cough. I was really hoping to walk a bit today (due to the nearby park it’s very easy to obey the 2m rule) but I can barely stand up. Waaah.

Mentally I’m ok other than a bit anxious.

I feel the same about preferring lockdown. There are still far too many carrying on as normal.

theotherfossilsister · 20/03/2020 12:40

@haba thank you! What are you all reading at the moment? My favourite part of my job is talking about books.

@LaneBoy - I'm sorry, that's how I was last week. See if you can get out, but don't do what I did and go six miles as soon as you feel OK, and then collapse. I'm hoping for lockdown tonight.

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haba · 20/03/2020 15:57

I have been reading a lot of William Gibson lately. Just on a book of short stories named Burning Chrome.
DS is rereading one of his many favourite series, I think it's Urban Outlaws. DD is reading some Frances Hardynge.

lborgia · 21/03/2020 06:18

Me again, someone on our private fb group posted this.

Tbh, I'm managing pretty well during the day but then finding it really hard to sleep. At the moment about 2-7am, which doesn't work for me ATALL.. or those around me.

Does anyone else find completely calm activities just leave too much room for anxiety? I am fine in my hot bath, or listening to music, but can feel the stuff churning. Maybe I need to break my own rule, and watch something untaxing just before I go to sleep. I'll try that later.

lborgia · 21/03/2020 06:19

Sorry, here is "this"!

autistic support thread, re: anxiety/loss of routine/not knowing what will happen
theotherfossilsister · 22/03/2020 20:59

@haba ah, I love The Lie Tree and Cuckoo Song, reccommend them to all the kids at my work

@lborgia a mindful app sounds really good, thank you. Thinking of maybe learning something - currently doing a virtual tour of Ancient Rome on Future Learn, and feeling sad for Italy.

I'm teetering closer to the edge of panic today, and it's hard. I tried to go for a walk yesterday, but everyone had the same idea, so it was impossible to stay two metres apart.

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theotherfossilsister · 23/03/2020 16:50

how's everyone doing today? I am feeling guilty for going for a walk now because there were folk within two metres of me. Everything seems unclear, and difficult. I long for clarity.

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LaneBoy · 23/03/2020 19:00

I know what you mean! Apparently there’s an announcement at 8.30?

I’m ok mentally, been distracted by feeling astoundingly unwell TBH, silver linings eh? I am on the mend but my throat and ear are still painful and sensory overload when suffering stuff like this is huuuge

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