If you have autism ,what has helped you the most ,cope with life

[Pugsrus]

I’m really struggling at the moment to hold everything together,rediculous things set me of on a downward obsessive cycle.Anxiety is horrendous,slightest thing sets me of ,that other people can shrug of ,I can’t.
Massively struggling dealing with professionals ,Get obsessed send ridiculous emails .
Day to day ,( no changes ,no emails/ phone calls to set me off) and I’m fine ,cope just fine.
But any contact with professionals l ( I try to avoid ) and I’m not coping ,stressing ,crying ,falling apart .
Every person feels like an intrusion,
I think I come across as unstable ..
I can’t find the words ,I need to change and hold things together,just a little bit more ,what helps you cope?

Anyone

This doesn’t really sound like the autism that’s causing you the stress, per se. So I’m not sure autism tips will help you.

You sound as though anxiety (& other co-morbidities?) and maybe executive function are what you need to focus on, specifically.

Who are the professionals you mention? What involvement do you have with them?

My husband has ASD.
I’m so sorry you are going through this; all of the current changes are affecting people with autism badly.

I think the main thing is to accept that it’s normal to feel more anxious and to be finding it harder to cope.
People without ASD and its co-morbids are really struggling so imagine how hard it must be for those with additional issues.

Do t be so hard on yourself or feel bad that things are hard to cope with. Could you maybe email a simple message to the professionals you mention- explain you are struggling with these things and would prefer to communicate in a way that is more comfortable to you.

You don’t come across as unstable; you are goi through the most challenging of times.
It will pass.
In the meantime, can you set a loose daily routine in place and also take time to write down your worries on a daily basis? My husband survives with lists and by writing things down, so that they don’t keep going gun round and round in his head.

This current phase will pass and you will get through this. Be kind to yourself.

The professionals are not for me ,so not helping me ,for my child .
Not social services.
I just used professionals to try to give an example of what I was struggling with

Thankyou ,yes lists ,I could do that ,and I could send an email...one of them wants a zoom appointment next week ,and I think the thought of that has just tipped me from only just coping to not coping.
I’ve never zoomed ,always say no ,there’s no way I can zoom ,

The professionals are not for me ,so not helping me ,for my child

Oh I see. Well funnelling everyone through email when you’re feeling overwhelmed is a good tactic, but are you saying you’re having trouble preventing yourself from sending impulsive responses? Do you have someone who can give you an opinion on drafts?

How much of this is lockdown related? Can you just minimise ALL unnecessary communication with everyone while the uncertainty lasts? Maybe use the time to get your physical environment really organised? Regain a sense of control? Would that help?

I have aspergers and an “interesting” approach to personal admin but don’t suffer anxiety. My DSis and DC2 have similar diagnoses but completely different presentations. So it’s a bit hard to suggest one thing that will work for all, IYSWIM.

one of them wants a zoom appointment next week ,and I think the thought of that has just tipped me from only just coping to not coping.
I’ve never zoomed ,always say no ,there’s no way I can zoom

That’s easy then. Just say no. You don’t zoom, you will not be making a zoom appointment. Perfectly reasonable to say that.

What you offer them instead depends on who they are and what they are trying to follow up on. But offering phone call, email, postponed F2F meeting are all reasonable options.

Is this a teacher doing safeguard checks in your child due to vulnerability? I think you can be really quite upfront with that, if so. Tell them you have your hands full and what works best for you at the moment is X type contact, at Y frequency subject to Z bit getting in the way.

It’s camhs .my dc have autism ,we have regular appointments,

Well tell them you have no time to learn zoom in the middle of all this. (They are the ones being silly there - daft of them to decide that everyone is suddenly au fait with whichever meeting software.)

So are they doing therapeutic work with your DC? Offering lockdown support generally? Checking up on everyone on their books?

Personally, i would decide what you’re currently able to cope with. Offer that as a plan. If that doesn’t satisfy them, ask them what it is they actually need from you and tell them you’ll get back to them.

If you can fake some confidence, it will help you feel more confident.

They want to do an hours session ,just the normal session..not a chance in hell could get the child in front of the camera to zoom ,he’s very assertive,so yeah that would not go well.
I will suggest we email .im not good on the phone either ,I never know when it’s my turn to speek so end up making an idiot of myself .
Thankyou,I appreciate you helping x

Its important to delegate what you can.
Maybe theres some local support organisation that can help you with this admin side, or a friend or relative that can help you deal with the ones that you find hardest? Could you reach out and try and untangle what things you can manage yourself and what things you need to outsource.
For me, I find form filling nearly impossible. I always always get someone to help me. Sometimes my mum helps me with some of them, passports etc, school stuff. sometimes i use professional support if its really important such as dla or pip forms.
I think its about understanding that the things you are good at are great and that there are things you need help with, and its not a personal failing, its an actual disability. Some acceptance is important.

You sound pretty overloaded and overwhelmed, and I swear accessing some of these organisations is so hard to navigate, that its on purpose to weed people out.

My DH is autistic and he swears by CBD oil capsules to take the edge of things. You can buy them online, including in Holland & Barrett’s.

They want to do an hours session ,just the normal session..not a chance in hell could get the child in front of the camera to zoom ,he’s very assertive,so yeah that would not go well.

There you go then. (Sounds like my eldest, BTW.)

Sometimes I do tell the people that i have aspergers and im.struggling with this particular thing, and then they try and think of better ways.
Not always though, as it depends whether i need any power in that situation as to how i handle it.

Would zoom with the camera switched off be any better?

I'm not autistic but can get anxiety. I write myself a list of things that have to get done and tick them off. That helps me feel like I'm not drowning.

With regards to Zoom, I dislike being on camera so I have told people my camera is not working. So I can join meetings with my camera switched off. You can also dial into Zoom by phone, if you'd prefer.

I have autism and am now pretty chilled. I used to be a complete wreck. The things that have enabled me to find my calm:

1. An understanding husband who gladly enabled me to quit trying to work and just spend my time pottering around at home, caring for my family.

1. A support worker who helps me twice a week, and ad hoc emergencies, with life admin. They talk to people on my behalf, book appointments, come with me if need be, or just help me to do it myself if I can or take over if I can't.

1. A wonderful friend who I pay a couple of hours a week to 'clean' except she's not a cleaner, she's more like your mum coming round. She cleans, she cooks, she cuts the grass, she sorts out the outgrown kids clothes. She knows me and my family so can see where the fire is this week and puts it out for me.

Having children forced me to do things that were way, way out of my comfort zone. I have had to make phone calls to get my children the help they needed, I have had to go to meetings to access their support. It is not easy, but I want only 100% the best for them, so I have had to do it.
As people mask, so they can act too. For me, I have to act, and pretend I'm someone else, someone that can function in a society. I had to do it last week when DH was delirious with pain and needed urgent help. No-one else to do it but me - I become someone else and get things done.

It's the only way. I will never let my children suffer if I have some way to prevent that.
It's my fault they have autism, not theirs, and I need to attenuate that whenever I can.

You can do this- DS needs their input

Having a mask on all my life seems to have made things worse as I've gotten much older. Now my mask doesn't "fit" anymore, I can only cope better without it but it means life's gotten easier in some ways and much more difficult in others. I can't even try to get help/support because the very thought of the process I have to go through stresses me out to the point of sensory overstimulation. I just cant "speak to someone" anymore. So I just take things one day at a time, a bumbling idiot sometimes, an over stimulated mess sometimes, a non-verbal cant-be-arsed today pokerface sometimes (strangely I feel more at peace when I'm like this and just don't try to 'be' 'normal' or anything), a completely drained semi functional battery other times, racked with anxiety and shaking like a leaf sometimes. I've just learned to allow myself to "stim" (nope, I always held it in, never even knew I did) and I can't believe the positive effect it's had on me! I feel stupid doing it but the happiness that bursts from inside me when I'm doing it makes it all worth it. Feels like "aaaah!"

The only thing I wish for sometimes is that I could just go outside and scream at the top of my lungs, draw breath and do it again... for as long as I can, then come back inside. I saw a post here a few days ago about a child doing it out in the garden, so wished it was me. Have managed to only scream into the pillow - it helps but not as much as I know it would if I did so loudly.

Mumsnet has kept me busy and I've strangely gotten stronger just mixing here with the different kinds of people and posting styles - both the good and the bad. I really like it here.

I used to be able to do all this ,haba ,I used to be able to deal with things I’m so much worse with age ,stress and patience is so much worse ,things I could brush of now seem to floor me .
It’s incredibly frustrating,the dogs barking ,their nails on the floor tap tap tapping,I feel like I will explode with noise in my head .
There is a support group I’m involved in ,but it’s for children with autism ,it’s a huge group ,I’ve asked if any of the parents have autism as well ,to try to get support ,none say they have
I’ve 2 dc with a diagnosis,a dh without a diagnosis,and 2 dc that sometimes seem to have bits of Asd ,but not enough for diagnosis