The Policy Gap - Older adults on the spectrum

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I am reminded of my experiences working as locum accountant for a large HIV/AIDS charity many years ago. When I commented to the accountant going on long leave that many must be hopefully for a cure, he responded words to the effect "absolutely not, think how many people would be out of work".

So I can well appreciate that commercial enterprises (specialists, etc.) and those within the industry that has built up to service the AS market would focus on parents/carers as they would represent the most lucrative sections. But is it reasonable to feel a sense of aggrievement at support organisations that appear to be run by NT's whose sole purpose is to support the parents/carers of brats with AS whilst claiming to support all AS people?

From my experiences within the Transgender community I am only too well aware that the most difficult times of the year are around Christmas when isolation from society and families leads to a significant surge in suicide attempts, and would suspect similar within the AS community. So when a so-called support organisation chooses to close down from the end of November to the end of February to allow the NT volunteers a Christmas break is it reasonable to feel a sense of outrage. Or is their attitude representative of the vast proportion of Asperger's support groups around the world?

I noted with interest a sticky cartoon on one of the forums denoting older female aspies as being invisible, but are older male aspies treated similarly? Are there any support organisations that specifically exclude parents/carers and those under a certain age? I have nothing specific against ankle-biters, but when someone posts words on WP to the effect "have to go now as Mom has told me to go to bed", I question my own involvement even here.

Alison

Re your last comment Alison: I hear what you are saying, though I don't think there is any marginalisation intended, consciously or not, by the "going to bed" comments. As you surely know (from your posts, I am sure you do know) that what you see - particularly as a very young adult - is so much influenced by where you stand; in my teens I can honestly say that I was self-focused, self-centred, unaware of sensitivities re older age groups and perspectives... and that largely goes with the territory. (The slogan of the times was: "never trust anyone over 30" - when life was considered to end!) LOL I am more than twice that age now!

On the other hand, it is very likely that your wisdom here is appreciated by many of those younger readers.
I certainly appreciate it, for the record.

AspieUtah, thank you for drawing my attention to this conference, of which I was unaware. I have spent a few minutes looking up some abstracts from a previous conference, and will definitely bear this in mind. One of the (many) things of current interest to me is the search for reliable biomarkers, and it seems a very safe bet that these researchers will be present.

At this stage it's a possible; depending on how my health goes next year it may turn into a probable, and progress to a definite. Certainly I would like to be there, it sounds really interesting.

Needs fall into discrete categories, at any age and old is no different:

In the broadest categories these are:

Physical
Emotional
Psychological
Spiritual

(I think everyone has some kind of spiritual need, I don't mean religious ones, the search for personal meaning is an example of a spiritual need).

Each of these meta-categories can be broken down into specifics, eg

Physical category includes :

adequate housing, food security, health care, ability to afford other essentials (clothing, hairdressing, dentistry, travel costs, utilities et al), respite care when needed, safety, personal care, and so on.

I think we do need to construct some sort of framework first that serves to conceptualise the kinds of needs and their relative importance to overall well-being before solutions for service delivery can be formulated.
This conceptualisation stage, wherever and whenever it occurs, has to include ASD people from the very beginning.

I wonder if someone will one day make a film about that experience of growing up alienated, that is realistic to ASD experience - this would take someone like the British film-maker Mike Leigh I think, and such film makers are rare. It's not likely, though who knows... (Hint: Come in Bill Gates, send some Christmas funding to me for this, and I'll pitch it!)

Horrible time of year for me, really dislike the falseness that comes with it. I despise the dishonesty of the fact that somebody will wish me well today, yet has spent the last 11 months ignoring me!

It is hard to juggle being alone with social isolation isn't it. I love being alone - sometimes with my partner - just reading or googling - I particularly like Pinterest as I get to see images I haven't seen before which is always a plus. Social isolation is different though; for many older (and indeed younger) people this is a difficult period as they are reminded of the ideal happy family unit they are 'supposed' to have according to the media, yet simply don't.

I try to reach out to my elderly neighbour but find it difficult as we have so very little to say to each other and my stock supply of 'small talk' is used up very quickly. We try to ensure she has provisions etc. but I am a poor substitute for a family who don't bother with her. More and more people, and I would imagine a high proportion of them 'Spectrumites' or 'SOTS', living alone I see more issues with co-morbid conditions such as anxiety or depression each year.

Sorry to descend like a wet fog on the thread, but sometimes I just wake up feeling 'blue'. It does make me worry about the future for people like me - and I guess some of you.