Hello. I’m new here. A sleepless night.

Welcome! My mum is most likely autistic too (and my dad but he would never accept it) - we realised when I was diagnosed in my mid-twenties. It was really confusing for me as well when I first realised I might be autistic- also lots of replaying events, i also acquired a ridiculous amount of other random diagnoses that didn’t really fit before someone finally realised I was autistic. etc. I think it really helped me to grow up with an autistic parent- we didn’t know we were autistic but we did know we were aliens (that’s what we used to say) and my mum intuitively knew how to support me and she really helped me cope and gave me a lot of stability. We are extremely close. You’ll be a great support to your daughter. 

It is hard to be productive in a noisy open plan environment. It is hard to think when you can't blank out other people's conversations.

I don't like it, fortunately my area is not too bad most of the time. I have gone and say in a meeting room for an afternoon before it is too bad.

My pet hate is the fire alarm test every Tuesday. It is so loud.

Sleep makes a huge difference. I have never really prioritised it but I really should. I'm trying to now 

Hello. 

It does sound like we have some very similar experiences!

I can relate to the office struggles and realise that working from home would suit me much better. I did that in a previous role, and it worked well for me. In the past few months, my office has moved into a completely new setting. Very open plan, everyone practically on top of each other. People in front, at my side and behind. Teams are combined into an open space. Lots of noise, and honestly, I have felt like I can barely function. I do have a supportive manager, and have been able to speak briefly about some of the current struggles. There is a 'toxic' attitude amongst the team around wfh, and the people that do have those adjustments in place are frowned upon by certain team members, which is not great. 

Most mornings, I arrive at work, and I am so overwhelmed by the challenge of getting my daughter to put on underwear for school. It's a real struggle at the moment. She can't stand the feel on her skin. We have tried lots of alternatives to standard knickers, but nothing has helped so far. 

Yesterday, my daughter and I set up a blanket in the garden and got out all sorts of craft items. We ended up making 'potions' before the rain set in. Then we spent around 2 hours drawing and playing with stencils indoors. It was really lovely.  

I was SO tired by yesterday afternoon. I agree with you about the challenge of functioning on very little sleep. Looking back now through this new lens on my experiences of early motherhood, along with the massive life changes of having a newborn, the overwhelm that consumed every part of me and my senses was so difficult. I thought I was just bad at it, and that people assumed I was overreacting to how hard I was finding things. 

Thank you for sharing some of your experiences. 

Just opening up in this space has already provided me with some comfort. I'm very thankful for all the replies. 

Have a lovely day. 

Welcome here. Reading some of your experiences, they are similar to mine. You mention change at work and I remember my manager saying before I thought I was autistic I had mentioned difficulties when there is a lot of change. If you are having difficulties at work I wonder if you feel it appropriate to explain some of this to a manager. Some employers will consider some adjustments whilst waiting for assessment.

I also used to have meltdowns when I was younger which were not understood. I still have issues at times, but now I understand better which helps to manage problems. I only started seeing the possibility of autism when we saw it in my son's difficulties.

I now mostly work from home, but I remember the issue with smells when I worked in the office. I often wondered why others didn't have the same problems, or even seem to notice.

I was helped, I guess as a child by the fact that my Mum liked doing crafts and soon spent a lot of my time creating things for myself. My way of switching off is to have a project. I hope you can enjoy this too and some time doing crafts with your daughter. Well done for finding ways to help your daughter, it can feel overwhelming at times trying to find what works best.

I note that you mentioned the difficulty with sleeping. I find it is so much harder to function when I am tired, probably because sometimes so much effort goes into everyday life on a normal day that this pushes me into the difficult to function stage.

I can see that many people have already made helpful comments. I remember when I first came on here and found it so helpful to find people who understood difficulties I had always had, which others didn't seem to get.

Hi, no worries I’m more than happy to chat! And I’m glad you are spending time with your daughter and I’m glad you feel better now. The heat can be awful if you ask me and these last few days were scorchers in my opinion! For me it’s overcast now and expecting thunderstorms to come later but at the moment it’s still really hot. I can understand how the heat can make you feel so low as I am exactly the same and I know the feeling of feeling so drained yet active at the same time it’s so horrible. And don’t worry about the drama queen thing, thank you for understanding where I come from though, it’s so frustrating when I try and explain and no one has it. As far as I’m concerned I think Im the only one in my family who is autistic so that doesn’t help. I hope you get with psych uk and you get your assessment soon too! I don’t know the waitlist but hopefully you will find out the answer soon enough but don’t beat yourself up regardless of the outcome. I don’t even know if autism is genetic or not, some say it is but others say it’s not. I mean I haven’t inherited autism but would I end up passing it on? All mysterious 

take care x 

Wow this looks like lots of fun, and so many options

The contents of the "busy hands", plus, portable too - so known as: "the art box".

Thank you. I can feel that already and it’s really lifted me. Have a lovey day. 

Hello, 

Thanks for this info! I will keep psych uk in mind. My GP agreed to make the referral, and I requested ‘right to choose’ 

I feel much calmer this morning after a bit of sleep. Yes still spending time with my daughter. Actually just had a brilliant game of ‘Dino domino’s’ Dinosaurs are her thing so it was double enjoyable. 

I think the heat really got to me yesterday. My mind was so tired yet so active and it had all been a bit much for us all at home by the end of the day. 

im sorry you’ve had the experience of being labelled drama queen also. It’s actually so much more than that, and I can never properly explain so it just confirms what they are thinking even more. 

just want to say thanks again for getting back to me. I feel very grateful that people responded, and have shared things that already make me feel less alone. 

take care all x

Hi and welcome to the community. You're not alone, and I hope you find support here. We get it.

Hello. 

Thank you for this! 

I am going to absolutely tap into ‘busy hand’ activities. This is actually my happy place. Making things. Crafting. There is nothing quite like it for me. I can get lost for hours in my world of creating. I’ve only really allowed myself to do it in recent years if it’s making something with my little girl, but should be something I do alone also. Having a creative project to work on is my happiest past time. It’s great now that I can do things with my daughter. We have made some wonderful costumes, and her creative homework is always beyond ‘extra’. I do have a tendency to lose myself in this, even when she is over the activity. 
We could sit together and do our own thing also. My daughter loves playing with slime, I can barely touch it, but just being near and doing our creative, busy thing sounds wonderful to me. 

So special you have that memory with your mother. 
Taking this to an outside space also sounds lovely. A couple of months ago my daughter wanted the tent up in the garden. Her and I spent the entire weekend in there playing with Lego and other bits. I didn’t realise how safe and happy I would feel playing inside a tent at 38 years old, and this was before I’d started to realise any of this. 

Will be wonderful to see you pictures of your treasured art box. Thank you for sharing something so sentimental. We will definitely look to get a box of our own! 

I have a tin filled with buttons which I’ve just thought about. They were my grandmas. I have the fondest memories of playing with them for hours at my grandparents when I was little. I loved grouping them and matching them in colours and some of them felt so satisfying to touch. - some of my fondest memories were playing at my grandparents home with all the bits and bobs as a child. 
Also my grandparents welcomed my deep interests, they made me feel good about my knowledge seeking and quizzing on certain a topics. I miss them dearly. 

thanks again, and have a lovely day. 

Hello. 

Thank you for your message and sharing a little of your experience from the start of this year.
It’s so interesting you mentioning your realisation came from acknowledging there were too many things you couldn’t explain.This realisation has offered explanation for me, and beyond my busy mind state it actually feels like it’s soothing and nourishing my soul. 
This makes me excited really for what the future could actually look like for me. 
that there could be a way for me to grow and allow myself to connect with all the parts of me I’ve pushed down for years. Reconnect with the things I LOVE, but have also felt shame in my adult years as to why I love them so much.

I did some tests and that’s what prompted me to make the GP appointment. The more I read, the more I can relate and understand things about ‘my ways’ better than I ever could have imagined. 

I hoping to be able to learn to really recognise my limits and when I need space before it gets too late. Already I am noticing those shifts in my bodily state sooner, which I think may be when the overwhelm is setting in. Those have always been the moments I just need to find a space to be alone.

The biggest thing I want for me and model as a parent is on setting my boundaries and communicating this with others. Such a challenge!
I want to be able to learn to say no when I need to, despite the anxiety and confusion of what someone will think of me, or what they might expect from me beyond what I can give. 

I don’t think it’s going to be easy but I’m in it for the long haul and for the hopes of a clearer future for me and my little girl. 

I can imagine you’ve been on such a journey of discovery since Jan. I hope you have experienced the learning and support you’ve needed. Thank you for your reply and advice it’s been so helpful to me. 

Hello, don't worry your sense of feeling lost is normal. You are questioning lots of things that your world view was based on.

Having been uninterested in looking at myself for decades, I came to the sudden realisation in January that here were too many things I could not explain, so I went looking. I did not expect to end up with ASD being the answer.

It is strange how it takes so long to see it in yourself, but I also had reasons not to want to see it.

Since you have come to this conclusion I expect you have done some online tests and started your research. It will become one of your special interests now.

You may be in a vulnerable state at the moment. I'd advise being careful about making important decisions, try to put them off till you know how you feel. You may swing around as you try work out what you think and what is really you. It will take some time.

Be kind to yourself and try to manage stress. You are hopefully on a path to having an easier less confusing life.

Remember to look after yourself as well as your daughter. Don't feel guilty for spending a bit of time on yourself or saying no to some things. You will overthink everything because that's part of it, but try to include good outcomes in your thinking.

L11HE said:

There are too many thoughts and feelings to fully know what it is I’m feeling right now.

Hello, welcome and please know that you are not alone - as many of us here will understand the maelstrom / whirlpool of turmoil you are trying to share. 

There can be a type of "shorthand" of shared or overlapping lived experience (which means that we "get it").

Hopefully, as you get to know us here - you can start to relax a little more on tha front.

To try and help quiet the brain - sometimes it can be helpful to be busy with hobbies involving moving your hands (and the good news is that this applies across the generations / age groups).

If you / your daughter currently do not seem to have many "busy hands" hobbies - maybe over summer the two of you could every so often take a bath towel each to enable you both to sit down somewhere shady and just have a go at some old or new pastimes? 

It doesn't need to involve big budget stuff - just being sat together (in silence if the mood settles on you both) sharing a common activity / game / art / craft / preparing food - anything which involves moving your hands - can be surprisingly absorbing - which then can give your respective minds an escape and rest.

The aim is achieving a restful state - effectively through constructive fidgeting.

The good news is that many libraries sometimes run workshops for free about new hobbies.  You can borrow a library book to get new ideas and guidance.  If reading is not your thing -; YouTube videos can unlock something puzzling about a new hobbie idea.

When I was a small child; my Mother got a large old biscuit / sweet tin which (rather grandly!) became named "the art box".  Over time, we would find new bits and pieces we might enjoy together and stash them in there for repeat or future fun.  It was easily portable - we could take it with us to a local park.

I still own "the art box" (...mumble) decades later. 

When I have eaten breakfast today - I will get the tin out and photograph the treasured, work-weary, contents - in case those humble contents were to provide inspiration for you and your daughter (to begin your own "busy hands" collection together).

The big hint: the contents need not be "age appropriate".

Nobody else makes the rules about what each of you value and enjoy to include in your box / tub / tin. 

The things do not need to be fashionable or fancy - just the portal to having some fun - your way - on your terms.

Hiya and welcome here. I’m so sorry you are struggling to sleep at the moment, the heat isn’t helping at all. Have you heard anything back from your gps regarding an assessment for yourself? If it’s possible it might be worth going with psych uk as I had a better experience with them (and shorter wait time) compared to the local ones. I can’t guarantee anything there of course. Im sorry about what the wider family think of you and your daughter, if its any consolation my wider family think I’m a drama queen and stubborn for not moving when when they don’t realise I can’t despite explaining until they’re asleep. Are you still spending time with your daughter? Sorry I can’t give any advice I just want you to know you are not alone ok! I hope you don’t feel alone for much longer and I hope you get to sleep soon.