Autism and Ageing.

I see ageing as a wonderful experience and I'm looking forward to it! After all, the only alternative is rather less attractive   : /   

Not very well really, and it isn't even the kind of ageing (ye) that makes us frail and prone to physical health issues. It's rather the fact that I don't seem to grow up like other people do. We had work experience students (they are 15, isn't it?) and I couldn't believe how mature they were in social situations, and in a good way. Think studying and not having kids makes us grow up more slowly, but somehow everybody around me has managed it by now, so I fit in less and less, which doesn't help with loneliness, another common problem with ageing. 

How do you cope with ageing?

I see ageing as a horrible thing that slowly eats us!

It is for the Community Manager to sort out where things go.

I was not sure of the best place to put the Autism and Ageing Campaign.

I think people can read unofficially what is said in this Discussion Forum although one cannot write without signing in.

Each Network has a different system.

David

Is there a way we can enter Network Autism just to see what is being discussed, ie as "guests".

I can enter this community without signing in. It just means I can only read postings while a "guest", I cannot write postings until I sign in. The other day there was just me signed in but 145 guests.

Therefore I assume professionals are able to enter this community to read what is posted. Indeed I do feel a bit like we are in a laboratory - being watched - but not knowing what the watcher's think.

However the professional forum Network Autism is only accessible to those signed in. There doesn't seem to be a facility for "guests" simply to observe discussion.

Being able to observe these discussions would help us (people on the spectrum, parents and carers of people on the spectrum) to view the sorts of things professionals are discussing. We might be better informed and better able to discuss our issues if we were better up to date with what professionals talk about.

Why are things so one-sided?  Is it not considered beneficial for this community to know what the professionals are saying?  Are they discussing things they've observed on here as guests, that they don't want us to find out about?

Firstly it is in the introducing myself section.

I do not think it is the best place to put it but I did not know where else to put it.

This is a separate issue to what the campaign is called.

Will the Community introduce a Autism Maturing section or an Autism Ageing section?

Will the Community introduce an NAS Current Campaigns section?

The best place to put it would be Current Campaigns section but there is not one.

Secondly it does not matter when a person is diagnosed.

People with certain disabilities such as Learning Difficulties or Developmental

(Autism is really a Developmental Disability.)

 Difficulties or Mental Illness find it even harder than the general population to get the appropriate treatment in the very busy hospitals of the NHS

David.

Hi there,

I drew this conversation to my colleagues' attention, and here is what one of them said in response:

There is NO CAMPAIGNS SECTION at preasent.

I think it would be a good idea to start a section in the community.

I do not even know if it is possible to put the discussion about Autism and Ageing in Autism and Maturity.

The NAS are certainly doing a campaign about Autism and Aging.

If you contact Policies and Campaigns at the NAS they will tell you about it.

David

Despite what Alex-R mod said about it, I only found it by putting "maturity" in the search box on the home page.

There's nothing about is in the news or campaigns sections that I could find.

As I said earlier what kind of information does NAS expect to get if they make it so inaccessible?

Some of the options, such as information on ageing, don't even respond.

I did not know the best place to put AUTISM AND AGEING CAMPAIGN.

Where is the best place to put it?

I cannot find the Autism and Maturity Section.

It should really go in NAS campaigns but we do not have a section for that.

David.

Thanks to David Cameron there is now a law that one cannot refuse to employ someone because he or she is over sixty-five.

I know someone who was looking for work over aged sixty-five and when he applied on line for jobs he still had to put his age on the application. I understand when he reached sixty-five he could not get any jobs as a classroom assistant.

The National Autistic Society should have recruited people over sixty-five for their Autism and Ageing campaign.  They some how should have recruited retired people for the contract of about a year in the Autism and Ageing campaign.

The point of the campaign is that the National Health Service and other caring organisations should be aware of older Autistic people.

We need to get rid of the perception that only CHILDREN can be AUTISTIC.

It is a life long condition.

David.

I've studied the Autism and Maturity section, and I'm quite perplexerd how this is going to work.

For starters how does anyone interface with it? How are we to input anything? Just through here? In which case can we have an area dedicated to it?

The emphasis seems to be that those first diagnosed are now entering middle age. Yet you have a large population of people with adult diagnoses in their 60s, 70s and beyond, who might have a contribution to make. You're still trying to restrict understanding of the effects of autism to those diagnosed as children, and failing to make effective use of the population diagnosed as adults who often aren't considered in surveys or studies.

NAS is still, even in something like this, parent/carer/professional led rather than "person with" led.

I then came across the professional autism forum. Now this might be useful to me having been involved professionally in supporting people on the spectrum in HE. It also might be beneficial to adults on the spectrum at least to be able to see what is discussed (as the rules prevent anything sensitive or confidential being included). But we cannot get in.

Indeed I've just tried to register and found I couldn't complete it. Well there's no consideration of retired professional - once you've retired you've no potential input.

You have to specify level of professional involvement - 100%, 50%, 30% or generic. The last I assume means dispersed across the range of activities but less than 100%, probably more than 30% from the way it is written.

So anyone with less than 30% professional contact hasn't anything relevant to say?

I read the terms and conditions. Unfortunately the only way out of these pages was to switch off the entire internet link with NAS. So anyone who completes has to go round again.

Now it is clear to me there are two discussion fora here - professionals spending 30% of their time or more, and on the other hand adults on the spectrum/parents and carers. NOTHING in between. NOTHING done to share common ground. NO WAY the latter can find out what the former is doing.

With such a blinkered approach it is quite unrealistic for NAS to claim you are addressing autism and maturity. You simply aint got the means.

longman said:

I've been trying to find out more about this, and it doesn't seem to be current on the NAS website...

I think the terminology may have been confusing for quite a few people. We have a section called Autism in Maturity, which is about this area of our work.

Regards,

Alex R

I've been trying to find out more about this, and it doesn't seem to be current on the NAS website, except in a reference to a House of Lords Debate which refers to Baroness Greengross, a champion of facilities for the aged, having recently chaired a commission on autism and ageing. 

It has been picked up on by several medical journals as a new issue. Could NAS give some publicity to it?

Meantime it would seem this is a useful forum in which to discuss autism and ageing.

The question - whether you call it "ageing" or simply later life, is crucially important.

The proportion of the population that is retired is growing, partly due to greater longevity, and partly due to demographic changes, such as the baby boom of the 50s increasing disproportionately the numbers now over 50.

In all other disabilities this subject is under discussion. There are extensive studies for example on sexuality and ageing. While some people might feel sensitive about using the term "ageing" here, I think the key point is the need to address what happens to people in their 60s, 70s 80s and 90s if they are on the spectrum. And if we quibble we'll lose out on important research.

Amongst the obvious considerations is Parkinson's Disease, apparently there's a predisposition to this in the autistic population.

Then there is the issue of retirement homes. If you have sensitivities and social difficulties, or have special interests that need your own space and resources, how will you cope with just a little bedroom as private space, with everything else shared and communal?

How would you cope with institutional food?  A lot of old folks' homes use medications to keep ther "inmates" nicely subdued, but some of these medications may be adverse for people on the spectrum. If they are still not recognising adult autism, how do you get excused from taking medication that makes you worse.

While significant diagnoses of asperger's syndrome in childhood is only in the last thirty years, the ageing question will in due course become an issue, so lets get it discussed now.

So please let's not worry about the term "ageing". Lets concentrate on the possible implications and get some discussion out in the open.

Firstly I cannot call it any thing else as the Natationial Autistic Society are running a campaign called AUTISM AND AGEING.

I think it is the correct words as that is what the campaign is about.

Secondly any one over FIFTY can become involved with the campaign.

Thirdly there should be a section in this community for NAS campaigns but there is not.

David

Thanks for the last reply.

Hi David - 

Can I suggest that the word 'Ageing' might be putting people off? 

Yes, I understand that some GP's and other health professionals believe that Adults do not have ASC - i.e. we grow out of it - and that opinion needs to be challenged. But is this 'opinion' more to do with funding being directed at the young rather than at older people with the condition?  And in that context, what is to happen to the elderly with ASC's, has to be questioned.

After all, many Health professionals believe that if you have an ASC and are 'coping', you are not deemed to have the condition. And many Adults with an ASC would have had to learn to 'cope' on the surface, over the years. What goes on underneath is completely different.

Bizarre isn't it? If I had one leg shorter than the other and was 'coping' with it, I would still be deemed by the medics to have one leg shorter than the other. 

On the terminology - 'Ageing'. A local Council near me, had a project a couple of years ago which targeted help for 'Older' people  -  believe it or not they classed 'Older' people as anyone over 50. One of the perks of joining was that they gave you a free pair of slippers. I am in my 50's and back at College doing a Post Grad - most of the people I know, of the same age as me, felt insulted they had been classed as 'Older', because they and I considered themselves middle-aged, and the free slippers were just an added insult. 

All I am trying to point out is, that terminology is important, and although the term 'Ageing' in this context is presumably meant more as, 'as one Ages' - which of course happens from the moment you are born - at first glance it does not come over as anything except 'ASC in the Elderly'. Maybe the use of Adults/Adulthood or some derivation of that word would have been more user friendly.

Just my personal opinion. 

It is an important campaign the NAS NATIONAL AUTISTIC SOCIETY are doing.

I am disappointed that I did not get any replies to this discussion.

David