Autism and old people

@abloner: Kafka is super awesome, he can express himself so well, but it's also somewhat depressing. I have no clue what I will do when I become old or anything changes, I can't simply switch myself off.

In my hometown, some fraternity students live in houses (originally owned by rich graduates or their parents 100 years ago) that they use as dormitories while studying. Successful graduates support promising current freshmen, so they can become the next generation of successful graduates. It's a small generational sponsoring club of likeminded people. That sounds like a good system (well, apart from the noisy dormitory part). ;-)

Could the ones among us who are old give a statement what they would think about such a system for ASD people? There could be "a club" in each city of ASD people who support one another, and the ones that make money sponsor the younger generation, who then in return supports the aging ex-sponsors later. Maybe it's naive and doesn't work financially, I don't know. I don't know either whether it should be like a dormitory, but I guess a dormitory of Aspies would be better than being homeless or stuck with unlikeminded NTs.

I agree with @longman, people are annoyed with anyone who is slightly different, it's too much of a hassle for them to adjust and not use the same mold on everyone. As a child I listened to this song, This is the dawning of the age of Aquarius etc: I didn't know what that referred to but the description of the age sounded desireable, and since the song was a few decades old I hoped it would start soon -- obviously it was only entertainment and not a real age.

What I mean is, we can't wait for an age to start or for others to come up with a solution, they don't care. But if we organize it ourselves we know what we want and don't want. 

PS: Longman, I like your writing style where you have a dash and a second paraphrase of a sentence.

I do not have a diagnosis, however my son has HFA and ADHD and my husband we suspect AS.  I can relate to what yo have all said.  Just last night as I sat crying at the kitchen table trying to work out what the right decision is for my sons education - mainstream or home - I was saying to my friend - they just don't have the insight to understand and she said they are not going to and what is hard is he seems like a normal boy.  I went on to explain he acts normal because he wants to fit in and craves friends but when at home in a safe place he is making robotic noises, stimming and regurgatating films verbatim or in some dark moments rubbishing his life big style.  My husband also says at work he goes into role and it is easier.

I have in recent years been really concerned what will happen to my son when he is older if we die.. I know it is morbid but practically, who will care and help him with those things that seem so trivial to others, are critical to him.

Wouldn't it be great if there could be some sort of volunteer, charity where people could be vetted to be an acquantance of older folk on the spectrum.  Someone that would help in a crisis or just be there.  I would happily volunteer to help someone now in my area.  I know it would take a lot of work to set something like this up but it could be a lifeline for many.  Not sure if this idea is a lot like the befriending scheme NAS do  or not.  Food for thought??

My response is to get involved. There may be a disability support group or forum near you. I did attend a forum for a number of years but it often consisted of "rubber stamping" - a political metaphor for the requirement to get community approval of policies. We'd get lectured on a policy by some idiot with appalling presentation skills, and asked to say how much we appreciated the council's efforts.

I also sat on a neighbourhood management board representing disabled interests, a form of Community Engagement, until the Council scrapped them in 2010 in favour of officer led advisory groups (apparently these people understand their communities - NOT-).

I've also served on a number of equalities committees, and been a disability coordinator in an HE establishment for some years till I retired.

You need to see things in the broader context. Most disability provisions are "window dressing" - making it look like you are doing what is asked, but not actually doing anything productive. Since the Disability Discrimination Act doesn't seem to have led to lots of prosecutions (because for one thing it isn't easy to do now), many organisations are relaxing their disability provision on the basis they can afford to risk the odd prosecution.

The reality is most peopole don't care about the disabled. The fact NAS is still struggling for funds in order to sustain adequate local provision is something repeated right across disabilities. Most able people don't care.

I will get some aggressive mailings now for saying this, but society expects disabled people to "pull their weight" and make a contribution in spite of their difficulties. To some extent the social model has created a converse that people just have different abilities to contribute. I'm afraid to say that people on the autistic spectrum will not readily get much sympathy if it is perceived that the level of their disability doesn't prevent them contributing (notwithstanding concerns about the difficulty fitting in in workplaces). Hence Government attempts to reduce the numbers of disabled people not in work but receiving benefits.

Suicide therefore is not an effective protest. So try something more constructive.

I can relate to:

'Getting in workmen is immensely difficult, as I do not comprehend their banter and informality'. (longman)

'Any form of request (a taxi, to buy a pair of trousers, to ask for a plumber, a rough exchange with a passerby) is a trials which leaves me days to recover'. (Abloner)

I think that it is hardest when you have asperger's in a very subtle way, when you don't 'look' disabled. (Hope)

I get the feeling that unless you are a problem to society then society are happy for you to fall through the cracks and dissapear. This makes me frustrated and angry. I really do sometimes want to smash things up and shout. I guess I am frustrated at my inability to communicate. I do have thoughts of killing myself or just being destructive........ would that be a from of communication?

Hope said:

I think that it is hardest when you have asperger's in a very subtle way, when you don't 'look' disabled.

I am very articulate, can speak fluently and expressively, smile, make eye-contact and have a 'normal' posture and gait. However, what goes on in my day to day life is a constant source of anxiety and irritation. I cannot sustain close and on-going relationships with people. I experience a nagging sense of boredom because I cannot make sense of the world or find meaning. I have a complicated set of rituals that must be performed every day, but they make me feel discontented and fed up. People and their emotions  do not make any sense to me. I have problems staying motivated and planning my life is very difficult for me. On top of these problems, I have many phobias and fears that consume my every waking hour.

I might have what the clinicians call 'high functioning asperger's syndrome', but I do not really function well in terms of the things that neuro-typicals take for granted.  Most days I feel low and upset because of my difficulties, so I can relate to abloner even though I am of a different generation to his, age 24 years.  

I'm closer  to Abloner's age but I can relate to everything Hope says here and what never seems to be acknowledged is  that it doesn't get better - not the basic difficulties.  One can adapt, fake, act and pretend but the underlying stress remains and as one gets older it becomes harder to cope.  I realise that's a very pessimistic thing to say but it's true.  Some of the physical problems caused by age can also make it harder for someone with AS to manage.

I'm very lucky.  I have a partner.  He has never been diagnosed but he recognizes that he's on the spectrum, which doesn't always make the relationship easy and sometimes we have to work hard at it but at least we both have someone. 

I agree that to date most highly visible autism organisations that I know of have been parent generated and many seem almost unaware that children with autism will grown up and become adults with autism. Also undiagnosed autism often has features ascribed to pychological causes, I was aware that this was particularly difficult in France. Here in the UK there is the autism act which does recognise adult autism.

the ani-l list is international and I have found interesting and helpful.

There is a strong emphasis on child autism in most countries. I live in Italy, and while there are associations of parents of children with severe autism, they are exclusively focused on the problems of parents. Asperger and other ASD disorders are ignored or taken in care by psychiatrists who  know nearly nothing about the genetic origins of the ASD disorders. Here, in France, Italy, Argentine and other countries, a key negative role is played by Freudian and other psychoanalytic movements, which prescribe talk cures looking for traumatisms as the origins of disorders.

I sypathise with both abloner and hope.  I don't feel in great shape myself. However my feeling is that we as an ASD community need to do something for ourselves by ourselves.

There is the autscape conference coming up and there are various lists  and websites where people on the spectrum communicate with each other. My feeling is that we need to develop a positive network that is in parralel to the NAS in that it is "by us for us" but consciously working with all others (parents, families, professionals) in the autism community.

The stuctures I mentioned above exist, but I hope we can develop something more, along the lines perhaps of what was developed by civil rights, womens and  gay movements.  There have been changes in these areas hopefully there will be changes for us also.

Whereabouts in the country do you live abloner? Is there an aspie group there.

If I cannot decipher the Other’s intentions, I cannot have friends. If I cannot “read” Other, how can I know what Other means when talking to me? Words, sentences, judgments expressed to me are acts, have a pragmatic value, are charged, possess intentionality. “Good evening” does not mean that Other augurs you to spend merrily my time for the rest of the day. This should be obvious. If Other wanted me to end up in hospital for a fall (this may well be sometimes), he wouldn’t tell me that straight away. The real meaning of “good evening” may be that,for now, he/she considers me an acceptable member of the humanity known to him/her. To really know something more relevant I should analyze the tone he uses, his body language, smile, kind of smile (is it a sincere smile or just cold conventional?). Most people don’t need to do these analysis for two reasons 1) they have an instinctive capability to read the other speech-acts. 2) they don’t have the need (that I have) to be assured of Other’s sympathy. So life is an ordeal for me and many others  like me. In the elevator I meet sometime  a lady who, if I greet her, doesn't return my greeting. So I stopped greeting her, but generally I avoid the elevator when I see her. If I don't succeed in this the 45 seconds of an hostile look at me is a horrible experience.

15 August. Horrible days, Kind of Summer yuletide. Not even shopkeepers, some of them nice people, are around. Well, one of these three days is over.  

You build a bubble (or a burrow) and you live there for sometime in a relative peace, filtering, sometimes blocking, sometimes sieving external inputs: rarely, or perhaps often, as a persisting longing in the background of your consciousness, you are forced to open ajar an interstice, if not a window or a door (too dangerous, too dangerous!) and you administer with frugality the air entering, the voices, the words of people. The approaches of others may be well intentioned, and your caution, your reserve may be offensive for the other, or others. Sometimes you are obliged, by social or practical (the plumber) constraint, to open your door. It takes time to recover.

Often your reserve is interpreted as sweetness, often you are seen as possible prey, and must defend yourself .

Every speech act of other must be laboriously interpreted. What did he/she mean?

Anyhow Asperger diagnosis is very recent (the ‘90s). And if you are over 60 you had to manage by yourself to survive. All your life you have been considered ***, shy but not needy of a particular approach, or attention, or, in your turn, of interpretation.

I think that it is hardest when you have asperger's in a very subtle way, when you don't 'look' disabled.

I am very articulate, can speak fluently and expressively, smile, make eye-contact and have a 'normal' posture and gait. However, what goes on in my day to day life is a constant source of anxiety and irritation. I cannot sustain close and on-going relationships with people. I experience a nagging sense of boredom because I cannot make sense of the world or find meaning. I have a complicated set of rituals that must be performed every day, but they make me feel discontented and fed up. People and their emotions  do not make any sense to me. I have problems staying motivated and planning my life is very difficult for me. On top of these problems, I have many phobias and fears that consume my every waking hour.

I might have what the clinicians call 'high functioning asperger's syndrome', but I do not really function well in terms of the things that neuro-typicals take for granted.  Most days I feel low and upset because of my difficulties, so I can relate to abloner even though I am of a different generation to his, age 24 years.  

Abloner is making a very good point. If your aspergers hasn't necessitated seeking direct intervention, there is very little you can do to get help. If you are identified as having aspergers and either receiving treatment or financial help, there is a support structure in place. If you haven't had to instigate a need for intervention, there is absolutely no help available. I am 61 and retired. I am quite able to look after myself. However some things cause difficulty. Getting in workmen is immensely difficult, as I do not comprehend their banter and informality, and my awkwardness is picked up as we can take advantage of this old duffer. If I need help with things it is difficult to ask. Given I look able enough, asking for help people would normally offer someone less able isn't easy. 

No-one seems to have looked at old age and autism EXCEPT in the sense of people needing or already receiving long term help. Those managing fine most of the time have no recourse to help, without having to go through a long process of making a case, where it might be deemed they appear well eniough to manage their own affairs. The difficulties people face on the spectrum growing older just aren't sufficiently understood.

It’s not that I can’t survive economically. I am a retired teacher and I have means enough to eat and live in a comfortable  flat. An immigrant woman  comes three hours to clean and order. I have a little dog which I can feed and walk around. I have a large library and can buy new books when I want. But the story finishes here. To ask for a medical problem to a doctor is an ordeal. Any form of request (a taxi, to buy a pair of trousers, to ask for a plumber, a rough exchange with a passerby) is a trials which leaves me days to recover. No friends, no satisfactory interaction. A longing for love and for a possible affectionate protection in need. Waiting for the end with the desire that I pass without anybody around, like in “Malone dies” or “Wit” because any acquaintance putting up a conventional, fake act of compassion would only disturb me.

I am 78 and I am reading Kafka.

Hi abloner,

I'm really sorry to read how difficult things sound for you. Can we ask where you've tried to find support - I know things are really difficult right now for everyone and clearly for you but we may be able to suggest some other alternatives.

If you'd rather contact someone directly then please consider ringing our helpline from 10 tomorrow to discuss your current situation to find out if they can suggest some options for help or support.

We have a number of services that can provide support in dealing with social services and the care system and the Autism helpline can put you in touch with them.

http://www.autism.org.uk/Our-services/Advice-and-information-services/Autism-Helpline.aspx

If you'd find it helpful to talk through your situation or want to discuss how you are feeling then the Samaritans are always available to talk to. Like Caro I'm concerned that you are alright so please do let us know.

If you'd like to speak to someone then the Samaritans details are on this page:

http://www.samaritans.org/

I know many people who have found it helpful to speak to them, so please consider calling if things seem overwhelming right now. It's a difficult time across the country at the moment and it would be heartening to know you are okay.

I am a bit concerned by this post, especially the opening line.  Are you saying you are in this position and are unable to access any assistance?