No help for me

Thanks Fiona, I don't have anything to do an online group on/with, I have no microphone, camera or speakers, I'm not sure I have enough ports for them all to plug thier dongles into. I'm really sorry, it sounds like I'm playing the "yes, but" game and I'm really not, I hate asking for help, often because I get told things like 'you're to resourseful' when I explain what my problem is and the steps I've taken to help myself. It feels terrible that when I've got to the end of my tether and ask for help that there seems next to none out there, I was told by a pain clinic that I could teach them stuff, they still could't help me though. I think it feeds into my not knowing what to ask for or how to ask for it, because I've tried everything I can think of.

I'm not sure a home help would help there's a shortage of them round here to begin with and I can't see them being that willing to do non-domestic tasks, I can do food shopping and cleaning, dog walking, cooking and gardening. It's the more occaisional things I need help with, like needing to go to a big town, stuff like that.

Sam, thanks for replying, two women for the whole of Wales sounds about right and the waiting list isn't surprising either. What part of Wales are you in? Do you find the intergrated autism service any good where you are?

Have you considered getting a home help? I have one for 1h a week to help with the practical things (changing bed, cleaning things I never got done, or noticed), but she helps deal with mail when I let it pile up (I feel uneasy with someone being in my home, but it's a compromise!). They can help with shopping, and they might be OK about helping out finding things online? Some companies will only do your shopping for you, others will take you out to do it yourself. They could help with the forms too.

TheCatWoman said:

People keep asking me what I want and I don't know, because I don't know whats out there, I feel like I'm being tken into a 5* restaurant, and told I can have any food in the world I'd like, but no one gives me a menu, so I end up ordering a bowl of cornflakes because its all I know exists

I feel this too. Perhaps a way to start is think about the practical things you want to achieve, make a list and focus on one at a time? You probably tried this, as it sounds like you are beyond frustrated. Is the first thing to make the computer easy to use? To adjust the screen settings to be less tiring and painful? 

I also get frustrated with "check out our website for info" but there is no info. Or contact our social media stuff... I can't do these for any length of time.

TheCatWoman said:

Everything with them is in a group too

Do they do the groups online? sometimes the online rule of 1 person speaking at a time makes it easier to hear and concentrate.

Hi CatWoman

I can see some of this post relates to smartphones.  It also looks like you are wanting post diagnostic help.

With the smartphone, you may find iPhones easier to navigate.  They cost more, though I have had excellent refurbished ones in the past.  I find them less 'scattered', and easier to navigate.

There seems to be two women for the whole of Wales, via the integrated autism service, and any post diagnostic support has a waiting list of nearly a year, after diagnosis.

I found the assessment really threw me off balance, and the weeks following, trying to integrate my past lack of knowledge, with my new found understanding/lack of understanding totally overwhelming.

Now, waiting for the post diagnostic 'support' myself...whilst knowing that once my turn comes around, some other poor soul will have just had their assessment and will have learnt they have over a year to wait, and therefore feeling rushed and guilty to be taking up their time...I have found that my life has reverted to 'normal'.   In so far as it is normal to be completely isolated.

I apologise if this is rather bleak.  Hopefully there will be more for us as time moves on.  It is pretty much the same for people diagnosed with cancer, motor neurone disease, everything really.  We have to find our own way, and for autistic adults, that seems to mean podcasts and the google.

Mind you...podcasts are quite good.  If there is a specific query you have, so for instance IT, you can just put that into the podcast search, and it will come up with some relevant pods.  

All the best 

Sam

Fiona, thanks for your suggestions, I've not thought of saga or only for cruises and car insurance. Age UK as it is now, isn't actually for the whole of the UK, it would be better to call it Age England as all the devoled nations have their own versions of it and North Wales has one all of it's own. They were one of the organisations I contacted last time, that ended up with the two women sat in my kitchen showing me two phones I could buy at my local tesco. They wern't very helpful, I don't think I was quite old enough for them, even though they say they are for people over 60, I think they really want you to be over 70 or 80 and in nned of someone to sort out practicle things like getting enough benefits and fitting accesable bathrooms.

I tried the University of the Third Age, most offer courses and stuff, but not ours, they're all retiured and bored of learning stuff and just do coffee mornings, dog walks and talks that seem to be mostly men showing off thier huge metal errections to each other from their work lives. I have no interest in in big engineering, or listening to older men wrench their arms out of thier sockets trying to reach round and pat themselves on the back. I did try reaching out to them and never even got a reply.

Mark, I access the internet via a desk top pc. I'd like to sort of move away from tech for a bit, I know it's an easy thing to focus on because I'm so crap at it. But what else is there in a post diagnosis assessment thingy? People keep asking me what I want and I don't know, because I don't know whats out there, I feel like I'm being tken into a 5* restaurant, and told I can have any food in the world I'd like, but no one gives me a menu, so I end up ordering a bowl of cornflakes because its all I know exists.

I'd like some help dealing with this big grey wall that appears before me whenever I try and think of something like tech, or maths, it's like someones plonked the Berlin Wall in front of me, only theres no check points, tunnels or anyway of getting past it that I can find and believe me I've tried. I'd like some occaisional practicle help with things like having to travel further east than Bangor, everything, like shops etc are now in Llanduddno and I can't get there, the last time I went a friend took me, but she's moving back to Scotland next month. I'd like help on the occaisions that I have to fill in forms as I go to pieces when confronted with a form to fill in. Stuff like that, but because I can't "do the program" or whatever it is thst the local autism support group have decided everyone has to do they seem unwilling or unable to help. Everything with them is in a group too, I can't hear properly with groups of people around, and I can't concentrate either, I dont' feel safe and get really anxious.

TheCatWoman said:

Is there anything specific for helping older people?

Have you tried Age Concern, or maybe Saga? There are charities out there for age-specific concerns. They might be more understanding of your IT level and be able to recommend appropriate things. Could you attend the course if they turned the overhead lights out? So the only light was coming from the computer screen?

My mum has sight problems and couldn't get to the shops to find a landline (a few years ago now) and her Occupational Therapist through social work helped her with that, but they probably wouldn't go as far as mobiles. I bought it for her, but the OT did the figuring out which was best.

Thankfully most places are changing fluorescent tubes in favour of LED panels which produce a constant light, hopefully more options will be available to you.

Hello again CatWoman.

Forgetting about the phone for now.

I am wondering if we can break down you IT needs into smaller chunks with a view to people here being able to help out.

I already understand that you are frustrated about not being able to get help locally.

What is it that you want out of IT? What do you want to be able to do? Maybe we can work on something specific - rather than IT as a big unwieldy lump. Are you able to list the things that you would like to be able to do?

(Also, how do you use this forum? I'm guessing not a phone. Is it a PC, or Mac or something else?)

When I need a new phone I will think about the one you suggest, provided I don't have a melt down and vomit all over the place.

I've tried looking at various courses and apparently my problems aren't ones they feel able to deal with, especially because of my age and inability to cope with strip lights, or groups for that matter.

One of the problems IT teachers seem to have with me aside from the physical limitations is that I don't want to do things like facebook and all the other social media stuff.

Its not been just the one knockback but decades of them.

Thanks for trying to help though.

I'm wondering if we can break down your problem into littler pieces?

There is probably not much I can do about post-diagnosis support, but maybe we can help with some of the smaller things.

1. Are you looking for a simple phone?

There is a Nokia 3210 which still has a screen, but doesn't run Facebook and all that shenanigans.

It's about £70.

It is meant to have annoying beeps when pushing buttons, but that can be switched off (maybe with our help if you got one)

2. What do you want computer training for? Maybe we can break that down?

I've worked in IT for too many years now and have seen various campaigns to help people with technology over that time.  Some provided by Banks are notably quite good, as they're invested in making people aware of risks and dangers while using the internet. There used to be an IT training place in town linked to the job centre, not sure if they still exist.

It's one thing to have this training but if it's not inclusive in accessibility terms then it's not useful, as those people are likely to be the most at risk groups when it comes to fraud and worse.

I'll have a look around, see what I can find. 

Homebird thanks, I can't use computers in public places as they all have overhead strip lights and I can see the screen flicker in time with the lights and it gives me stinking migraines lasting several days. People tell me to sit by a window, but that dosen't help either, nor do screens in front of screens. Computers at our library are so ancient and the conectivity so poor that they often don't work and mobile reception is almost non existant. There is a woman who does help with digital stuff, I went to her full of hope, only to be disapointed, she didn't want to listen, didn't seem to get that autism and learning difficulties make an impact, there was nowhere private where we wouldn't be distracted by other library users and there are strip lights in there. She didn't seem to understand that I have no idea where to begin on even buying a phone and suggested I go to any high street phone shop and ask for thier advice, she couldn't get her head around the idea that I've tried doing that and got nowhere. I said to her these are sales people, their job is to sell you the most expensive phone in the shop, not to help you buy the best one for your circumstances. We left it thst I would come bsck to her when or if I get a smart phone, she doen't think I need one as I wouldn't use it and I don't want one but feel incresingly like I have to have one as so much stuff is don't on them now. She couldn't seem to get her head around the idea that I wouldn't be joining social media apps and sending photos to everyone I know. She was a bit bit dismissive about my ability to crash things too, she just looked bored.

Mark, not knowing what one entails or what help is availble I can't answer that question, I need one to one help with digital stuff and I have no family that can or will help, they either avoid it all together or tell me several ways of doing things that I get muddled and can't remember anything, or I do try and get it mixed up and everything gets even worse. Because of my memory problems I don't remember even simple digital tasks, liike I know I've done C&P countless times but I can't remember how to do it and even worse was losing a load of my disertation a few days before having to hand it in.

Could anyone tell me what a post diagnostic test involves what does it look for and what does it help with and how does one get one.

Is there anything specific for helping older people?

Homebird thanks, I can't use computers in public places as they all have overhead strip lights and I can see the screen flicker in time with the lights and it gives me stinking migraines lasting several days. People tell me to sit by a window, but that dosen't help either, nor do screens in front of screens. Computers at our library are so ancient and the conectivity so poor that they often don't work and mobile reception is almost non existant. There is a woman who does help with digital stuff, I went to her full of hope, only to be disapointed, she didn't want to listen, didn't seem to get that autism and learning difficulties make an impact, there was nowhere private where we wouldn't be distracted by other library users and there are strip lights in there. She didn't seem to understand that I have no idea where to begin on even buying a phone and suggested I go to any high street phone shop and ask for thier advice, she couldn't get her head around the idea that I've tried doing that and got nowhere. I said to her these are sales people, their job is to sell you the most expensive phone in the shop, not to help you buy the best one for your circumstances. We left it thst I would come bsck to her when or if I get a smart phone, she doen't think I need one as I wouldn't use it and I don't want one but feel incresingly like I have to have one as so much stuff is don't on them now. She couldn't seem to get her head around the idea that I wouldn't be joining social media apps and sending photos to everyone I know. She was a bit bit dismissive about my ability to crash things too, she just looked bored.

Mark, not knowing what one entails or what help is availble I can't answer that question, I need one to one help with digital stuff and I have no family that can or will help, they either avoid it all together or tell me several ways of doing things that I get muddled and can't remember anything, or I do try and get it mixed up and everything gets even worse. Because of my memory problems I don't remember even simple digital tasks, liike I know I've done C&P countless times but I can't remember how to do it and even worse was losing a load of my disertation a few days before having to hand it in.

Could anyone tell me what a post diagnostic test involves what does it look for and what does it help with and how does one get one.

Is there anything specific for helping older people?

Hi TheCatWoman,

This is very upsetting. I was wondering if you know what it is that you feel that you want from a post-diagnosis assessment? Is there anything specific that we could help you with? (without mucking up anonymity)

I am about the same age as you so please don't take this the wrong way. I am presuming one of the things you want help with is IT. My computer skills are limited and rely on our IT department to help me when things disappear, go wrong or I get stuck. 

My Dad had no IT skills and did not own a smart phone, but I remember he did a computer skills course run by Age UK, mainly so he could use a computer at the library. He found this helpful. I have just looked them up and there is a section on computer skills courses where you can put in your post code to see if there are any courses in your area.