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962 Views • Apr 16, 2024 • Click to toggle off description
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Date of upload: Apr 16, 2024 ^^
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RYD date created : 2024-04-21T09:59:28.089375Z
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YouTube Comments - 62 Comments
Top Comments of this video!! :3
Hugs. You're so great at getting the words out on what you struggle with. I swear when a person, ANY person, asks me what I struggle with, my mind suddenly clears out of all words.....🤔🤣
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Dana, I'm in the same boat, at home, and until a support worker showed me how to cook, real meals (chicken curries, soups, beef meatloaf), my parents couldn't understand, and with limited time to do it, and mum doing EVERYTHING at once, my circuit breakers popped, so I could only do toast with cheese, not even in the microwave, as I always de-hydrate the leftovers, if mum or dad don't tell me the settings to use.
the way I cope now ( I can cut RAW chicken breast fillets bought from the delicatessen NOW 🙂); me and my support team (OT & Therapy assistant) made a recipe card system, from what the support worker and I cooked, step by step, breaking it down to things in time brackets, so I can manage the info easier, PS I can't smell either!, so twice the struggle, no idea when it was "done".
But in time, I use timers, and follow steps in phase ( like in Master chef, cut first, then put into bowls, then take bowls to stove, add as per instructions, for set time)- and this is SLOW cooking{6 hrs}, so I can, once the main offensive is done, simmer the pot, only stirring every 30 minutes, so things are calmer, as the hard graft only took 30-45 minutes.
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You´re quickly becoming my favorite autism youtuber! <3
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An autism group course has job centre vibes 😬and I'm in the same boat, the ideas of bills is such a struggle, living with someone whos not that good of a person( especially for my neurodivergencies ) and I give them the majority of my money to pay bills, I could be being ripped off and I don't even know but the stress and anxiety of dealing with it myself is so bad. Tried to move end of last year but the idea of living alone( whiles would be heaven to do my own thing ) is so scary that I crumbled😩.
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Amen Dana, I went through a similar thing when I went to Autism SA (south Australia 🙂) to do a "social skills" session, Most of the class (teachers/students) already knew how to talk, recognise emotions, etc. [I got more from my Psychology sessions when I got funding through the NDIS {National Disability Insurance Scheme}; and when my OT explained it one to one]; they all were 'experts ' in it, I was just left there cold, no understanding when I couldn't answer what the photos in front of us meant. YES, Too much of the 'therapy' for us, is designed by Neurotypical people, with all their bias, assumptions, etc. More needs to be Co-designed WITH us, rather than left to chance; the money needs to be effectively spent, NOT to cure, but to support us living how we want to, Where, etc. but the first step is awareness and ACCEPTANCE of what our needs and talent's are.
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When reading the title I looked straight at the length of the video as I expected it to be VERY short 😢 I'm 40 and receive ESA and PIP and that's all the support available to me but I usually have to fight for the PIP every time which is stressful as I have my review soon. The mental health team have refused to see me for the last decade as I'm 'too complex' for them! I've been told that I cant get a social worker as they dont offer them anymore. My Dad is my carer but is getting older and less well (80's) and wont be able to drive much longer as he has cataracts on both eyes so I'm worried how I will manage without him and the car as I also have physical health problems. He lives quite far away so without the car and his help I'm on my own with only one friend that I rarely see (aprox 3 times a year) as I struggle to leave my flat. After years of being mostly bed bound I now go to an addiction group (narcotics anonymous). I can only manage once per week as it wrecks me for the rest of the week physically and mentally and therefore leaves me unable to do most basic things (that requires me getting out of bed). When my dad had to go for an operation to have cancer removed I tried having carers come to help me but it was so stressful and expensive (£120 aprox per week). I'm terrified of life without any help!!! Where I live is a nightmare also as my council flat has been leaking and covered in mold since I moved in 2012. The leak has finally been found due to the pipe bursting so I was able to claim insurance to get new carpets but it has been sooooo stressful having people coming to do repairs etc that I feel like crap and in withdrawals from reducing pain medications with no future options apart from paracetamol and heat packs/electric blanket for relief. Life is so stressful managing even basic tasks like you describe!!! I wish I could move but have tried for a decade now and still trying as my neighbour's fight and scream which gives me flashbacks etc. Just found out that there are 9000 people bidding for council housing currently so looks like I'm staying where I am! It sucks but I'm hoping my mood will improve once done with reducing/stopping gabapentin and buprenorphine (which is likely to be kicking my butt for a couple of years once stopped completely. The withdrawals are sending me spiralling with sensory overload! Ain't life fun!! I hope you manage to get moved as I hear that the housing crisis is across all of the UK 😢
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This seems to be the same in most places I've heard about - little to no support after diagnosis for autistic adults.
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God yes! 😰 Also diagnosed in 2019 (but at 52 rather than 22!). Also struggling with life, eating healthily etc., and unable to get support (knocked back by social work three times now). Similar experiences with post-diagnostic 8-week courses as well. It’s so frustrating! hugs offered in solidarity
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Hi Dana! so many things you speak about I really relate to. I am autistic and 17 and was diagnosed at 13. :) Water wise I use a filter jug (you can use Brita or Phox) I have used both and it really helps me to drink. Another thing that helps keep you hydrated is adding sqaush to any water you can manage (tap or bottled, if you cannot buy a filter jug) another option is drinking boiled water (left to cool, or at whatever temperature you would like) as this kills any bacteria you might be worried about in tap water. And eating things high in water content (watermelon, cucumber, pineapple, tomatoes, lettuce, oranges, strawberries, peaches, pears and peppers) you can get packets of watermelon and pineapple at the supermarket- so no need to wash or cut them. Ice cubes, and ice lollies are good too, with minimal fuss (you just have it and throw away the packaging) - if you can tolerate the cold. I hope this helps :) xx
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Had to comment on your sweatshirt. ❤❤❤ Had a dog named after Vivian with a personality to match.
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I've recently been invited to a small group of late diagnosed autistic adults in my city. It's a charity funded by the city and their ethos is about creating a voice for people such as us and also allowing us to take the lead in our weekly group support meetings. I've already had two phone calls with the person in charge of supporting our group that I'm due to meet. I had such positive conversions with them and there are art opportunities for me to take part it, again funded by the charity.
I really think it depends on where you live in the UK. It also takes a special bunch of people to decide that things need to change when it comes to support post diagnosis.
I'm hoping to continue working for the charity when I finish the group sessions.
Things are changing, slowly but surely. Thanks for talking about this.
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Same position, ASD level 2, dx'ed at 42 in 2019. No support, Mum, Nanna and my cat died, and if I had to survive on disability I'd be dead. Going through menopause adds a whole new level of clusterfuck to everything. There are so many things I wanted to do, but it's like I'm a 2015 MacBook Pro with a shitty Commodore 64 level of RAM.
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man i'm sorry it's been so shit for you. the only good autism help i've had was through my uni, and even then i've had some good and some bad (and it's primarily related to studying, not to the rest of my life). i'm very lucky to have parents i can live with (outside of term and if i need to once i finish my phd) and they do help me with a lot - explaining how to do stuff, etc - but what i'm currently struggling with is finding any autism-centered (or frankly just even autism-friendly) mental health support. if i have to hear one more professional talk about "coping skills" or "negative thoughts" or whatever i swear to god...
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Sorry you're having such a struggle. I respect you for reaching out. If you don't ask you don't get. Living with toxic people is horrible. I will give you a few quid, it's not much but every little helps according to Tesco and I hope you get support to move out. I think funding is at the root of it. I'm autistic. You can get water filters. I just do direct debit for bills. I had to change Internet service providers and put that off for a year getting ripped off as I was out of contract. AI chatbot helped me find a new one, told me to go to trustpilot to see if customers thought they were good, I can ask AI chatbot anything and it answers my question, unlike google, I managed a smooth transition from one ISP to another. I have made mistakes. I bought a flat with a breached lease and am dreading sorting it out. I am 57 and feel I can't cope but while I don't trust AI it does help with mundane everyday things I struggle with, it even shows me how to cook meals.
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Hi Dana! I've been watching your vids for a little while but it's been years since I've commented on anything so even doing this makes me super nervous!
I got my autism diagnosis today at nearly 22. I was expecting to feel a whole lot of emotions but instead I just feel flat, empty foreboding - so the same as any other day pretty much lol. I'm not even sure what I can feel anymore to be fair, especially when I'm sober 🙃
I'm lucky enough to live with my family and have a (pretty inconsistent) part-time job which makes me enough to survive but I just feel like I could be so much more. It's hitting home now how much our government and society keep us fettered, acknowledging we have a disability but making us fight tooth and nail for the simplest of accommodations...I hope your situation improves and you keep posting great videos that are relatable for so many autistic people :)
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I will be going to one of these groups, I have ”only” been diagnosed for 9 months though. But I have read 11 books on autism and follow dozens of active accounts on social media about it. But I take it as an opportunity to talk to other autists. I am LSN but I also feel that I have been struggling my entire life. I order groceries online now and the last time I tried going into a grocery store I was completely overwhelmed, disregarding the sounds and the lights, just by the visual impression of the sheer amount of stuff there. And I have been shopping like that my entire life 😖 In my country there is support you can get from social services with everyday tasks, but they tell me I wouldn’t be able to get that. And even if I did, apparently it’s not meant to be permanent.
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The only help I have ever got was on a temporary basis last year. And that was only because the landlord saw the state of the state and referred me to mental health services. After about 6 months I got home support from the council but it only lasted about 4 months. Once she got the PIP application sorted and sent off she basically discharged me and that was it. Of course my flat has since reverted. Don't people realise we need support and help 24/7? I know I do. Am not coping well at all and it has got worse since my dad died 6 months ago. No one cares.
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this video was so real. I also don't have family in my state and i don't have a best friend. I have a husband but that is it. Now I have church members but yeah. Just sunday support. I dont know how to do basic stuff and also have physical disbailities so theres that aspect as well (epilespy, autoimmune stuff, endometrosis). Very relatable rant. I hope you find better support and continue to get support from your best friend and maybe get some other friends also.
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Hi Dana, I can relate loads to your struggles and trying to do everyday things and stay on top of essential things like bills but even having enough money for bills. Without family help I would be really stuck, to be honest I’m not sure how I’ll be doing when one day inevitably I’ll outlive my family and it’s all on me, I try not to think about it at the moment and enjoy what I can while I have help. Without help I think I would eventually end up dead from having nothing to live on and nothing to live for.
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@mrmarten9385
3 weeks ago
It is better to not have support than support that hurts you. I'll leave it at that, because it's just too depressing.
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