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Davvo7
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17 Dec 2014, 8:16 am

Hello,

I usually post here as an individual and is all my own stuff; none of it is work related however……

In my ‘real life’ I am very fortunate to work for one of the UK’s leading Autism and ASC Agencies – we don’t like the ‘D’ word and prefer to use Conditions – which has both residential and day support services across the UK and Ireland. We also look to influence both Central and Local Government policy through membership of alliances and through recognised good practice.

One of the issues we all really do have to address is the changing face of northern hemisphere society in terms of the growing number of older people, rising life expectancy and the services they will require. This, obviously, includes people with autism and we have to ensure our service provision changes to meet the different needs of pensioners on the spectrum. Social care is poor enough for most people, however, for older people with more complex needs it becomes critical that we get it right in the Charity or Voluntary Community Sector.

I guess this is a bit of a ‘double-edged sword’ as I am 52 years old and a diagnosed Aspie. I know I have my own personal needs and, if I’m honest, real fears about this situation; however despite this, I would very much welcome any insights people may have.

I am looking for experiences, thoughts, ideas, suggestions or observations about the types of life and lifestyle changes that can occur in diagnosed ‘spectrumites’ – all of our service users are diagnosed as in the UK this is pretty much mandatory to access funding for support from local social services, unless you are wealthy and can self-fund.

I would also welcome observations/advice from people who support older people with autism and their issues and service or support requirements as they grow older.

I will then feed this into our organisational planning process, explaining where it came from, but anonymised. We are a person centred organisation so take our lead from the amazing individuals we support, so it would be good to be able to have responses from across the global membership here.

Thank you in anticipation. Davvo.



BTDT
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17 Dec 2014, 4:49 pm

Back health is very important. I know many folks that have back issues.
Personally, I've invested in a really nice chair--I can sit in it even after working out in the garden.



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17 Dec 2014, 5:49 pm

http://www.autismiliitto.fi/files/1237/ ... port-2.pdf

Policy considerations in respect of seniors on the spectrum. Hope it assists. There is a thread on this earlier this month. Sorry I am in a rush right now though you will find it by entering "policy seniors on the spectrum"
in the search function.



Davvo7
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18 Dec 2014, 3:43 am

Thanks to you both for your replies, very much appreciated.

BTDT - I hear you! I get 'creakier' by the day.

B19 - Thanks very much for the link. I hadn't thought of the term 'senior citizens' I will look at that now.

Best wishes to you both.

Davvo.



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18 Dec 2014, 10:27 am

I'm half-gray--so am I "half" a Silver Fox?

I'm going to be 54 on January 2nd

I would guess that people with autism, as they age, will require similar services/identical as "NT" people while they are aging.

"NT's" face isolation as they age--especially when they find that many of their friends are leaving this world

With autism, this probably will be magnified--owing to (perhaps) fewer friends.

With the relatively greater isolation of autistic older adults than "NT's," a "safety net" should exist, wherein there is a provision for somebody to "drop in" on the person to see if the person is all right. A greater sensitivity to the autistic person's needs, desires, and irritations should be reflected in that person's "file." It is probable that one should call the autistic person at home before one "drops in."

Come to think of it, if the person has internet access, it would probably be more preferable to email the person, rather than call the person.



Davvo7
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18 Dec 2014, 12:48 pm

Thanks Kraftiekortie, you are spot on. I must confess that this is something I fear for myself in some respects; my partner is my only real human friend with whom I can just be me. It does concern me that many other people are in the same situation but don't have the same support, or ability to ask for the support that I do.

I think the tech approach is a good way to go, indeed I have been looking at the potential use of cheap and robust assistive technology that we could utilise. I saw a Japanese project with older people that used robotic fluffy seals that moved and responded to touch that had been used very successfully in geriatric residential care. I appreciate that is just one small scale approach and the issue is far wider, but we have to try every approach.

We are looking at trying to build small social groups with our older service users and match people's interests but lets face it, the logistics of that with some of our 'community' is challenging! :)

Thanks for the reply, I do appreciate it.


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18 Dec 2014, 2:12 pm

One of the issues is the importance of maintaining social connection. As for all older adults, people on the spectrum who have enjoyed longterm meaningful friendships suffer from the loss of these - due to friends' deaths, loss of marriage partners, illness, relocation, retirement, incapacity due to serious illness and the like. It goes with this stage of life, though it impacts much harder on ASD people I think, because making new social connections isn't as easy. I know for myself that outside my family, I socialize best with people who are on the spectrum, introverts and/ or people who have social anxiety (and vice versa). I first became socially isolated as a senior due to a combination of retirement coinciding with serious illness. It lasted for four years, and the longer it lasts, the harder it is to break out of isolation and rebuild your life.

A lot of social venues open to senior citizens in general are not going to be suitable for many of us, because they are focused on socialising in the minimalist sense, getting together for a cup of tea and small talk at the local community centre. While these form a valuable service in and for the NT community, where does the senior with Aspergers who has become socially isolated go? Support groups for ASD are not automatically the answer, particularly if they are dominated by mothers and fathers parenting young children on the spectrum who want to discuss parenting issues as these affect themselves. Recognition of the needs of seniors in these groups can easily be overlooked, dismissed or trivialised.

Social connection is one of the keys to well-being, and though it is only one of many issues for the older ASD population, I see it as a priority issue, given its impacts on emotional and psychological well-being, and Autism service organisations are currently not acknowledging nor offering services to meet this need.

PS I meet my needs for ongoing social connection via Meet Up social anxiety group (where I have made good friends) and some of them have developed into one-to-one close friendships with others on the spectrum. Perhaps I was just lucky, event though I am the oldest (by far in some cases) we all get well because of the common factor we share - a propensity for anxiety. However we get together to socialise, not therapise! Not much small talk, but a lot of meaningful topic discussions. It worked so well for me.



kraftiekortie
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18 Dec 2014, 7:54 pm

I agree: Life should not be a constant therapy session.



Davvo7
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19 Dec 2014, 3:56 am

That is very true. Being a so-called 'Professional Autist' can be tiring as it often means being 'on duty' and explaining myself or my actions or 'way of being' to people. I guess I can't complain, as I chose this job and I am blessed to be lucky enough to work with amazing people, but there are times you just want to be. I often forget to just relax and 'have fun' although I think my idea of fun differs from most anyway. :lol:

I must say that I have felt less anxious and stressed as I have aged, but am honestly not sure if that is me mellowing and just not caring as much any more, or my personal manifestations are easing off. I don't think it's the latter as I am still as hypersensitive to light and sound as I ever was, albeit I can't function without my glasses - three different pairs now! :roll: However, I am very lucky that I can articulate my fears and distress and inhabit an environment where people will take it seriously, but I worry greatly about some of "Our guys" who don't communicate in the same way but may lack the means to let us know what is going on for them. This could be really scary for them, especially if the aging process attacks their mental capacity, such as Alzheimer's or dementia. We haven't had to face this yet, even though we are 40 years old as an organisation as most began working with us as children.

We are constantly trying to introduce new forms of mental and physical stimulation as things like crossword's' Sudoku's, board games or Chess have proven beneficial impact upon keeping the brain active. I try and find time to do a newspaper crossword every day as a form of 'Me Time' but accept my 'Me Time' is very often solitary and this isn't good for me in the long run. As I said, I am looking at this from a service providers point of view, but am totally wrapped up in it myself.


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19 Dec 2014, 5:04 am

I seem to be aging faster than the average person, I just turned 54 but I have the body of a 70+ year old now, in terms of arthritis and general gimpiness. I wonder if this is something comorbid with AS, IOW are there any aspies besides me who seem to be aging faster than they ought to be?



Davvo7
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20 Dec 2014, 7:03 am

I must confess that I feel a lot older than I actually am and have a lot of joint aches - I don't know if this is just the way of things or is specific to me. I take supplements for this and have added oily fish and the like to my diet to try to counter the feeling. I have had a constant headache for 30 plus years, I've had it checked numerous times but isn't due to anything 'sinister' in my head; it is purely down to the stress and anxiety of living with ASC. I'm sure this will have a toll in the end, which is quite sobering, but I'm all out of ideas about what to do about it.

It's a difficult topic isn't it, but one we simply cannot ignore. One of my reasons for working with the organisation I do is to try to make a difference. I know this sounds like a massive cliché, but it is true. A huge proportion of the posters on this website are young and, understandably, don't give this a second thought, well I want to try and make it so that they never have to think about it as they age and services are just there for them.

We have work to do, but lets face it, most of us have never let a challenge stop us have we! :!:


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20 Dec 2014, 12:50 pm

We are stayers, that's for sure! Being on the spectrum affects your whole body, I have read, and that seems true to me. Getting appropriate health care has always been an ongoing issue. For years I reported classic symptoms of immune dysfunction though it took decades to get adequate diagnosis and treatment. I wish I could say that was the only instance of medical neglect related to my presence on the spectrum, but it wasn't.



Davvo7
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21 Dec 2014, 2:38 pm

I have had three different and incorrect diagnoses before they finally realised, despite me suggesting it on a number of occasions - I was either, "just really depressed", Bi Polar or had BPD. I challenged the BPD diagnosis and he smugly said, "Well that is part of it, people with BPD always challenge the diagnosis, so you have just proved you are!" I nearly punched him!

I do wonder if the aches and pains are as a result of constantly being "on guard" and not relaxing, bit like revving the engine all the time, it's bound to take its toll.



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21 Dec 2014, 2:43 pm

^^^^
glad to hear at least I'm not the only one with these pain issues :alien:



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21 Dec 2014, 3:40 pm

Davvo7 wrote:
I have had three different and incorrect diagnoses before they finally realised, despite me suggesting it on a number of occasions - I was either, "just really depressed", Bi Polar or had BPD. I challenged the BPD diagnosis and he smugly said, "Well that is part of it, people with BPD always challenge the diagnosis, so you have just proved you are!" I nearly punched him!

I do wonder if the aches and pains are as a result of constantly being "on guard" and not relaxing, bit like revving the engine all the time, it's bound to take its toll.


I felt really angry reading about this creep who offered his "proof". Obviously he is a very ill-educated person who has never heard about loaded questions like "when did you stop beating your wife". He was an ignorant smartarse in a position to abuse others who had less power. He was insulting your intelligence, dismissing your validity, and mindf..king you. Whoever he was, I am sending him evils right now... :twisted: