Support Available Post Autism Diagnosis
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- Опубліковано 15 кві 2024
- Super fun and cheerful video bcus I literally don't know how I'm going to keep surviving without any major issues lmao
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It is better to not have support than support that hurts you. I'll leave it at that, because it's just too depressing.
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.....🤔🤣
Same and sometimes when I do manage to get the words out they just minimise my needs or disregard it all together
@@UnvisibleGirl I feel this comment in my soul. Like deep down in the ooey gooey part!! 💞
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😩.
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 😢
I can relate to all you are going through, including the PIP reviews. It's disgusting that we must jump through figuratively firey hoops, not alone struggling with those awful forms, but when they call you into their assessments, and you are being interrogated by people that are under-qualified to ask you questions, they come across as ballet-dancing elephants!
You are in my prayers and thoughts.
@SuperGingernutz thank you. Will need the prayers im sure!! Thankfully it's a telephone review that's coming up next week!! I'm already trying to build up some energy as it will totally drain me!!
@@deesparklebazinga9374 When I cannot help in a practical way, prayers are all I can offer. In the meantime, and while you are going through the telephone review and thereafter, I wish you Peace and All Good
@@SuperGingernutz thank you, I appreciate your prayers and well wishes xx
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.
This seems to be the same in most places I've heard about - little to no support after diagnosis for autistic adults.
Same here. We are left swinging in the wind - literally and figuratively.
@@SuperGingernutz I've been waiting 25 months for my diagnosis so far & no idea how much longer I need to wait, but I know there's no support after it anyway, so the wait doesn't really matter, in a way! It would be good to stop the impostor syndrome though...
@@lauraburystedmundsyoga8231
I see where you are coming from with Imposter Syndrome and understand your need for it to stop. You aren't alone in suffering this figurative monkey on your back.
Asking my counsellor about it recently, she said Impostor Syndrome is common with late-diagnosed Autistic people because I frequently go through it despite having numerous chronic health problems and hidden disabilities, and reassurance can find a way in for a fleeting time before that monkey comes back.
The sooner the Autism diagnosis comes through for you, the better. It's a ridiculously long wait, though.
In the meantime, there are videos on YT that might help and reassure you - so you can beat off those perishing monkeys.
Peace and All Good.
@@lauraburystedmundsyoga8231 the imposter syndrome doesn't stop after you get a diagnosis
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*
You´re quickly becoming my favorite autism youtuber!
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.
Thinking of you 💟
Had to comment on your sweatshirt. ❤❤❤ Had a dog named after Vivian with a personality to match.
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.
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
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...
I self referred to adult social services and now I have a carer come in twice a week to help with house work and take me shopping.
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.
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.
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.
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 :)
People assume that if you can speak eloquently you can function. Which is bullshit!
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.
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.
Some self accommodations I've found for food... I use "fire and forget" appliances. It's basically impossible to ruin a meal with a rice cooker and hard to do with an air fryer. They're also low effort. I can just throw stuff in and it comes out cooked. Frozen, pre-sliced, pre-seasoned veggies are great. To avoid the preservatives of canned and instant food, you can throw dry food (e.g., beans, barley, rice, pasta) in a rice cooker, "instant pot", or pressure cooker with water and leave it for a while on low heat (cook times vary a little). Dried soy protien is also a cheap and less-processed (i.e., lacking additives and preservatives) way to get a complete protein. Also, you don't need to make each individual meal nutritionally balanced. You could have one meal that's just a bunch of seasoned potatoes, another that's just soy curls and sauce, another that's just veggie soup, and another that's just a bowl of grapes.
That’s genius. I need to get a rice cooker now.
I also found Jamie Oliver's '5 ingredients' book helpful. Kept things really simple but healthy.
I want an official diagnosis or the same reasons as you. I have my initial evaluation appointment in 2 days. I have been waiting for 4 years. I appreciate you speaking the truth. I have had so much anxiety since they took me off the waiting list and gave me an appointment 2 weeks ago. I have fear that they will once again misdiagnosed me. However, the place I am going is experienced with diagnosing all ages up to 70 years old and females. So, wish me luck that they finally have gotten it together this time.
( have a video on my channel speaking about this anxiety and preparations).
Today I plan on streaming a video about how I prepped my binders I plan to take and I will be doing a series (playlist) for each step after I experience them. And then hopefully if I get my diagnosis- I will do a reflection video on what I would have done to get a diagnosis sooner.
Anyway, thanks Dana. 💗
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.
Yes! I hate the idea of autism groups 😂
Here in Wales we have a service called "Integrated Autism Service - IAS". There must be something equivalent in England? I have a therapist I have access to any time. They also have information on useful services I could have access to, including counselling, advocacy, socialising, & other support.
You overestimate the ability of NHS services in England to keep up with those in Wales
@@katiescave Usually what England provides is way ahead of Wales. I moved to Wales from England in 2008. In England at the time I did all my GP appointments, repeat prescriptions, etc. online. I still don't have any online service for the GP I use here in Wales. We are also losing GP services at a rapid rate leaving the remaining services to pick up the customers but they can't cope. I waited for years for my ASD referral, but better than not having a referral I suppose. Currently been trying for 5 weeks to get a routine GP appointment. They only book up to 4 weeks ahead and keep telling me to try the following week because there are none available. Our GP surgery is currently doing the job that three surgeries used to do in the area a few years ago.
Re water, I drink squash so I stay relatively hydrated while not having to drink plain water
For the water. You probably already thought of it but in case u havent, just wanna suggest a water filter for yhe tap water.
Thanks for the videos - videos like these are probably are some of the best supports for people like us who stuggle with these things. Ur doing a great job :)
Oh and beroccas really help with the poor diet. The blackcurrant ones taste the least rank.
Glad to hear that you're moving but sorry about the difficult situation you mentioned a few videos ago. Hope it'll be better in the new place.
And I hope you'll find the necessary support soon in whatever way.
I just turned 14 i know im still like a very young child but i always was made painfully aweare i was odd werid a freak yeah it was pretty crazy somene sent me death threats on instagram after school because i flapped my hands in class and every signal night id pray the next morning id wake up magicaly normal but it never happend from 6 to 8 every night begging praying and i watched ROTTMNT when i was 10 and i seen donnie and i already knew peridot from steven universe and i saw 2 charters like me and at 10 i relized my prayers would never be answered but you and a few other ceators made me not wanna wake up normal anymore (im going for my austim and adhd tests this year)
Have you tried volunteering? I've found taking a "guerilla therapy" tactic to being late-diagnosed is best. Even when I couldn't find a support group in my local area, I email carpet-bombed as many therapists as I could, pointing out the facts of the matter regarding how this wave of late-diagnosed individuals is occurring on a level that no responsible mental health professional can or should ignore. So far twice this has led to the creation of two novel in-person groups founded by autistics, catered to autistics, and determined by autistics. Yes, it's a group thing, but when the neurotypicals leave the room, people tend to open up.
As far as executive dysfunctioning/ADHD-friendly cooking tactics go, I'd recommend trying a slowcooker. You can get homecooked quality meals every day of the week without having to actually cook/prep no more than two days a week. Generally speaking, you can get whatever your preferred safe foods are, throw them into a slowcooker bag, and then keep it in the fridge until you're ready to pop it into the slowcooker. No worries about burning food or overcooking. Only downside is if you are in a hurry to eat and can't wait ~4 hours.
When you mention your diagnosis, also always be sure to include the 'level II' qualifier as that is definitely very relevant, and any clinician who doesn't see it as relevant isn't worth your time.
Also, for whatever it might be worth:
Despite the fact that I am an autistic man in his mid 30's and likely belong to the group of fellow autistics you feel you cannot relate to on a significant level, I hope you find at least a little solace that at least one of us is keenly aware of the severity of trauma that is basically a baseline starter pack for individuals born both autistic and a girl. Estimates concerning the rate of SA and c-PTSD amongst this population are inexcusable; and although I may lack the same "lived experience" that you have, cognitively I still understand perfectly that the only thing separating me and being a victim of some of the worst behavior human beings can commit is a Y chromosome.
If you find yourself in a group setting where you have a general sense of unease or level of discomfort, it is completely your perogative to make this known to the point of refusing participation. You aren't being unreasonable and don't at all seem like the kind of person who would make this demand in an aggressive way.
@@cda6590 Men can be abused that way as well. It is a bit less likely.
I totally understand you I feel the same . Was dienoserd with autism December lady year so not that long ago at the age of 54 all ready Been dienosed with ADHD for a couple of years. Got 2 daughters one is grown up she 32 and was dienoserd with autism a couple of years ago and my youngest daughter who will be 15 on the 7 may was dienoserd with aultasim in march she was also dienoserd with ADHD when she was 6 years old and Bern in small classes at school but Bern struggling the thes year with school we are both still waiting to get help and like you offed to go to group thing but we just don't do good in groups. My youngest daughter has sleted muitasam too so will mostly not talk in a group. I totally agree with every thing you said on this video and it make me angry too they sho have help with life skills in schools and for adults with aultasim. Love all your videos keep up the good work of making your videos you doing a good thing
Sadly, the typicals assume that all Autistics have 90% of the same issues because they haven't done any research. They're completely useless.
Unless there is an issue between you and your brother then my best guess would be to ask him about it (preferably when his social worker is around.)
If you don't mind sharing your general area i can take a look into it for you online and let you know.
I have similar issues to you but I was diagnosed in March 2020 just before lockdown but I didn't get a level
I was diagnosed in 2023 and I also didn’t get a level. But I got A$perger’s syndrome since my country is backwards and still uses ICD-10.
@servadac42 I'm not far from Dana I'm guessing since she said Liverpool I mean Liverpool is a big place but I'm only about half an hour ish away from Liverpool
I see time & time again people who believe an adult autism diagnosis will open up loads of support.
It's rare that adults will get some one on one support. More likely for comorbid issues.
The only benefit of going to the groups is that you can talk with other autistic people in your area who might know local resources. Otherwise they sound pretty useless.
sadly, autism support dosen't really exist in reality. its better to manage alone and rely on peer support from other autistic people than try to get help from services that couldn't care less (even if austerity was reversed and they had more people that could provide practical support).
Both are good in my opinion. If you can find it.
Are there any non profit organizations that can help? Maybe a non profit org run by autistics?
Dana: Either get a friend to call your landlord for you (they can say they're your assistant) or write an email from the friend's account to say you need to pay them a couple of days later and thank them for their understanding.
Dear... X,
oweing to a mismatch in the expected first month of rent and the date on which i'll be paid next month, i will have to pay this month's rent a couple of days later. Sorry for any inconvenience.
If we can set the due date for rent permanently for this later date, to avoid similar situations in the future i'd greatly appreciate that.
Thank you for your understanding.
I'm writing from my friend's Email account, since mine has been hacked and is currently blocked.
Yours sincerely,
Dana
Play this video to the people who offered that lame group help, your thoughts are contained here
I’m really struggling, too 🩵