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firemonkey
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08 Dec 2022, 5:44 pm

The 'middle' = not in need of 24/7/365 care & not a high flier at the other end

In just over a month I become a pensioner. I wonder though how people like me, but much younger cope/will cope with a profile similar to mine.

Dxes: ASD(Asperger's ) and schizophrenia/schizoaffective.

Cognitive: Significant gap re adaptive functioning < IQ . EF difficulties re organising and planning. My daughter and granddaughters provide help with daily practical tasks. My daughter is officially recognised as a carer by social services. On the other hand I have an IQ based on psychometrician created and/or normed tests that falls within a 148-157 range.

Where verbal skills are to the fore it serves me well, but in situations requiring manual/practical skills a person like me can really struggle. In a mental health system where it's expected/demanded that if you're good at x you should also be good at y - I have for most of my time as a psych patient been seen in a very negative way because of it .

It took 42 years and my daughter's input with MH services, before I moved here, to set the picture straight. She has worked for over 25 years in the caring profession covering ASD,mental illness,physical disability and dementia.

While I'm fully in support of those with 'profound autism' being at the front of the queue re help and support- I also hope that in the future people like me get a much better level of help and support . That they're not treated as nuisances. That they can get the help and support they need to fulfil their potential.



Edna3362
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08 Dec 2022, 5:55 pm

The "gaps" are annoying.

And people can never balance between the 8 year old me who cannot know any better and is crap with words from the independent 27 year old me adult.

It's always the either and never at the same time. Or "neither".

Since my job consists of almost nothing but my weaknesses, it's basically treating me like some 15 year old -- that's not a balance either.
That's the 'neither', that's neglecting the me who I have to drag it's weight around and the me who's pulling the weight.

I want to make and implement strategies for coping this imbalance. I have to get the particulars myself.

Except I'm coping with something else -- autism cannot explain this except just not knowing how to say it and it runs into negligence.
The sheer stress and 'forgetfulness' doesn't help.

A lot has changed in me, and it's not for the better.
It was a gradual change. I get traits that seem ADD like since becoming an adult and I hate it.

And I don't think I'd grow this way.
If I spent more time "coping", it'll just become a bad habit whether or not I'm no longer coping with whatever sickness this is.


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Double Retired
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08 Dec 2022, 7:32 pm

Congratulations on retirement!


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firemonkey
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08 Dec 2022, 7:47 pm

Double Retired wrote:
Congratulations on retirement!


Thanks, but if you've ever read my posts you'll know I don't deserve to be congratulated.



ToughDiamond
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09 Dec 2022, 2:49 am

I suppose I'm somewhere in the middle - perfectly capable of living independently by any generally-accepted standard, and it's only old age that will likely rob me of that one day, ASD never did. But I wouldn't fancy my chances of doing it again now that the world has drifted rather more to the right than it used to be, i.e. if I woke up tomorrow and found I was 18 years old and having to find a job.

I only needed a DX towards the end of my working life when the employer tightened the screws and tried to force me out of the reasonably well-fitting niche I'd carved into the world of scientific research and into a totally different and much more Aspie-unfriendly kind of work. The DX stopped him but all he did was cut me a load of slack, so I felt wasted even though I got the same pay as before. There was never any serious attempt to match the work to my autistic strengths. That was one of the reasons I retired early, though I've always felt that people work too long, and would probably have retired anyway. No severance deal, voluntary or otherwise, I was just frugal and saved enough money to cover my zero-income years until my pensions kicked in.

I've had a partner for virtually all my life since I was 18, though I had quite a few breakups and divorces. I've mostly had rather few friends but I've always been fairly content with just a partner and one or two other friends. Nobody had to carry me about. I was always perfectly capable of keeping myself healthy, paying the bills, managing the home etc. I have a son who still likes me. I didn't go for a degree because I'd found secondary school very hard (though ultimately I got fairly good qualifications) and I didn't think I'd be able to cope with university. I wanted to learn not by being lectured but by doing and by hands-on experience, which meant getting a job, and my strongest skills were in science, so I got a science job. I've usually part-owned a house. Now I own a house all of my own, though it's not the nicest house I've ever lived in.

I don't know how I survived so well. I don't doubt that I have moderate ASD. Mostly I think I just got lucky from time to time. The science education I had at school was pretty useful. I don't much regret not going for a degree. And I happened to grow up while the economy was still relatively strong and there was more socialism around. Right wingers would probably just expect us to pull ourselves up by our bootstraps. I was never in a pit to pull myself up from, I just made sure I didn't sink into one, which wasn't that hard, in my circumstances and with the mind I was lucky enough to have. I've never been in low spirits for long.

I didn't even suspect I had ASD till 2009, so even if there had been any support for me I wouldn't have found it. I suppose disability payments would have helped but I've never needed it like a lot of people do. I doubt if any other kind of support would have done me much good, because I much prefer to do things my own way and I don't think the experts understand the condition from the inside. So, no complaints overall. Naturally I think it'd be good if there was more support for Aspies, especially for the adults who seem to get very little. Also more research into finding out how to help us on our own terms would be good.



Fenn
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09 Dec 2022, 7:34 am

firemonkey wrote:
Double Retired wrote:
Congratulations on retirement!


Thanks, but if you've ever read my posts you'll know I don't deserve to be congratulated.


Or maybe with all the challenges you face you deserve more congratulations.


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Fenn
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09 Dec 2022, 8:10 am

I am currently out of work. I am COVID-19 positive right now. My executive functions are very poor and if I didn’t have a wife with very strong executive function skills I would have a much simpler quality of life. My “can do” is almost gone, if not gone entirely. Between EF and anxiety and depression I am doing very poorly with my job hunt. I feel like giving up, but “giving up” is not really a thing. I am working with a therapist. When I tell her what I have accomplished in the last week she often replies “baby steps”. I am 54 and will be 55 in March. I have been able to work in hightech up til now but I am not sure I can keep it up. The pandemic took a lot of my confidence away - and I have always been prone to fear and sometimes panic about my work. My wife wants to know who will take care of her if she needs help.
I am too old to be a wiz kid and never had the people skills or executive function skills to move into management. No pension for me, just 401k savings plan, kind of a self funded pension, but you can only take out what you put in and there are penalties for taping it too soon. 55 is too soon.
My wife just self-tested COVID-19 today so “who will take care of her” is not an academic question today. We are both sick with COVID-19. But my EF issues make me look more helpless.
I have an adult son 22 living at home. He is ASD and ADHD (both diagnosed). I am diagnosed ADHD and working on an ASD diagnosis (stay tuned). I have a 12 year old son who is diagnosed ADHD and a daughter 20 in college who is “normal”.
I have never felt so rung out.


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Double Retired
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09 Dec 2022, 12:09 pm

firemonkey wrote:
Double Retired wrote:
Congratulations on retirement!


Thanks, but if you've ever read my posts you'll know I don't deserve to be congratulated.
I'm being optimistic.


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firemonkey
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09 Dec 2022, 12:37 pm

0% employment rate. One attempt at voluntary work in 1975, which was a disaster. Fell between 2 stools. The 1st= more brain than brawn, but low stress threshold . Don't do well under pressure. The 2nd= manual/practical task type jobs . Poor ability . Totally unsuited.

Throw into the mix severe social anxiety and bullying related trauma. Due to the latter have rebuffed several suggestions to pursue further education.



IsabellaLinton
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09 Dec 2022, 1:07 pm

@Fenn,
Sorry things are so rough for you right now Fenn. :( Should I assume you can't get any sort of disability support payment, or have you tried working with any agencies? (I mean job seeking places especially for people with disabilities, or even an OT for your executive function?) Best wishes that you and your wife will pull through Covid. It's gruelling and awful but it won't last forever, so give yourselves plenty of rest and compassion.

@Firemonkey,
Life in the middle - Good way to put it. I relate to what you're saying, and Tough Diamond too. You both express your thoughts so eloquently it's hard to add anything new. I'm in the middle in many ways as a middle aged woman (OK maybe a bit more ...), who is diagnosed with Level 2 or Moderate (middle) Autism. I have comorbids (CPTSD, ADHD, two strokes). I'm also a single mum in the middle or "sandwich" generation -- taking care of my autistic daughter who has a debilitating, permanent health condition at the same time as I take care of my elderly mother (cancer), and now my brother (recently blind). Mum, brother and I don't together so that means I'm caring for three households with no physical or practical support for myself. I have four pets who are dependent and need ongoing care, so I can't even take a holiday. I've been running on fumes for so long I put up a mental barrier / block to avoid feeling vulnerable but on the inside I'm screaming for help 24/7.

Where I live there's no such thing as "carers" who get paid to care for people the way your daughter cares for you. There are private "personal support workers" but they focus on people with global physical or mental disabilities and they're cost-prohibitive, as they aren't included on our health insurance and they only stop in for about 20 minutes every few weeks. They have so many clients they don't form a relationship with anyone and the staff turnover is very high. My mother had one briefly post-surgery and they were terrible - scrubbing her with a course cloth, talking on their phone, and rushing out the door so quickly she couldn't even ask questions. They don't do personal support like cleaning, EF, paperwork, etc. It's just physical care like bathing, which I don't need.

I own my home, even though it's mortgaged, so that disqualifies me from every other service I can find for Autistic adults. I'm in a Catch 22 because I worked full-time almost 25 years prior to diagnosis, at the expense of my physical and mental health. I had no choice as a single parent but I had a clinical nervous breakdown and I was in over my head. Now I get Long Term Disability payments but they aren't enough to cover all my expenses so I'm kind of a sinking ship, especially when I'm supporting my kids financially and I still have a mortgage. Moving isn't an option so I've been told to bide my time until my mother passes away, when I'll get decent sum of inheritance.

Life is great when I delude myself. I can stay home and ignore the world 24/7 or ignore my responsibilities. I like my little bubble but then reality crashes through and I have to run off to take care of others, pay bills, shovel snow, or do a million other homeowner tasks that I don't know how to do. I end up paying out of pocket for a lot of that because I don't have the energy (or time, or EF), to sort it all out. I feel I'm being played by the system. My ASD report says I need "Significant Support", but other than psychology and OT which I paid for out of pocket, there's no Significant Support to be had here. They disqualify me when they hear I own my home. When I request service for my daughter who doesn't own the home, they say I'm responsible for her needs because ... I'm a homeowner. I think they want me to sell my house and live in abject poverty because renting anything even two bedrooms would cost more than my mortgage and we'd have to surrender the animals.

I'm sure I'll die alone one day. Not to be morose but I only have my mother and (older) brother, and they're already ill. I don't picture myself in a care home because they are about $4K / month. I'd sooner get a one-room apartment by that point and just die in my own bed. It seems that's what they want for us these days, anyway.



firemonkey
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09 Dec 2022, 1:20 pm

^ I totally accept that I'm fortunate compared to you



kraftiekortie
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09 Dec 2022, 2:15 pm

Will you be getting more money when you start getting your pension, Firemonkey?

@Isabella.....sorry you're between a rock and a hard place...really. I admire you for "keeping your head over water," so to speak. You're very much a survivor.

My mother is sort of lucky she's on Hospice; that means she gets free Home Health Aides five days a week, four hours a day. She's only eligible because it was determined that she has only six months to live; she'll probably live beyond that. If she wasn't on Hospice, she would have to pay for HHA's out of pocket. I am able to do some of the things required---like cook meals, or shop for her. But I can't do most of the other things that HHA's do.



Last edited by kraftiekortie on 09 Dec 2022, 2:56 pm, edited 1 time in total.

firemonkey
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09 Dec 2022, 2:36 pm

kraftiekortie wrote:
Will you be betting more money when you start getting your pension, Firemonkey?

I'm not sure. Possibly.



ToughDiamond
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09 Dec 2022, 3:44 pm

^
How did "getting more money" get changed to "betting more money" ?



IsabellaLinton
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09 Dec 2022, 5:01 pm

firemonkey wrote:
^ I totally accept that I'm fortunate compared to you


Hugs, firemonkey.

None of us are more fortunate than the other. It's all relative. I don't have the burden of grief that you carry, having lost your wife and trying to navigate on your own. We all have different sets of challenges but we're all struggling and our challenges are equally important, just like our accomplishments.

Sending my best to you and everyone in this thread.



kraftiekortie
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09 Dec 2022, 5:02 pm

ToughDiamond: that was a typo. I meant “getting.”