Autism and ageing - your experiences

• Thank you for all your comments everyone. Really interesting to hear. I definitely share the concerns people have raised about healthcare providers not being prepared for autistic elders - another reason to try to educate people - perhaps if we do this one person at a time (e.g correcting  a misconception or just being our varied selves that don’t match the NT perception of autism we can improve the situation. That’s the dream anyway!

I feel very much like this

Yes, I do think some of us appear to become more autistic with age. I think this is one of the reasons I’m late diagnosed - none of my challenges are new, but as I age I’m finding it harder to cope with a lot of them which is both exhausting but also a driver for finding new coping mechanisms. 

It is interesting reading people's comments. 

I didn't suspect I was autistic until I was in my 50s. Having now reached my 60s and having experienced a different way of life during the pandemic, I now find it more difficult to socialize than before. I grew up with an expectation to do this, which I have found more difficult over the years and taken every opportunity to avoid it. 

Since the pandemic I have worked from home and until last year I more or less coped with that. I am now in my 60s, but not reached retirement age. I would like to retire early, but reality is that I need to try to keep going until I reach state pension age. I have had to make adjustments to manage this and do feel it gets harder after years of masking.

I believe my father was autistic and he found it very difficult when he spent some time in a care home. I think I would be the same, as there is nowhere you can really feel you have your own space.

I feel like I'm not as good at masking now (in my 50s) as I was in my 30s. But I'm not sure whether it's really a reduction or whether I just can't be a*sed so much now. A bit of both, I think. I stopped bothering to try to make new friends years ago, but I am lucky to have 2 old friends who have known me ever since we were students at the same polytechnic, weren't put off by my late autism diagnosis, and still keep in touch.

Interesting question. I'm in my sixties and at the moment I cannot think of any challenges I have that are due to aging, apart from the usual ones everyone gets like aching joints. Mentally I seem to be much the same, and I'm not depressed since I finished work.

I think most ND people struggle to work until state retirement age - both my partner and I retired earlier, we had planned and saved for that but not everyone is able to do so.

In terms of care for older autistic people I can envisage some issues with that - I don't want to be put in a care home where I have to mix with others as I'm very independently minded and not keen on mixing with most other people. If it came to me being widowed and not being able to live independently, I think I'd rather take voluntary euthanasia. (Sorry to be gloomy, just being honest)

I heard some years back a theory that NT people become more autistic as they age - something to do with how their brains change as they get older. It does seem that some people get less tolerant of others as they age, autistic or not. I'm reminded of "The old g i t s " from the Harry Enfield & Chums show - not very PC, but they did make me laugh 

There is some related research being conducted at the University of Edinburgh:

www.autistica.org.uk/.../residential-care

Nah, I think they'll just stick their fingers in their ears and go lalala, until we all break out of our care homes and run rampant and wild, scaring the living daylights out of our carers. But then what do I know? I think my son plans for me to be the mad woman in the attic, lol.

TheCatWoman said:

I dread ending up in a care home where they try and make me listen to Abba or something,

When my mother (who I believe was autistic+) was in a care home a carer asked her why she wouldn't go down to the lounge and mix with people. 

My mother said 'because I don't like people'.

That set the carer straight!

TheCatWoman said:

I think this will be the next big challenge to ASC people and services such as NAS, we need to educate elderly care services about our needs.

The way the current government is going after people with mental health problems, we will have euthanasia on the NHS in no time. I guess it would solve the problems though, just not in a way we want.

I've been told it could be a good idea to give some kind of letter to your GP to go in with your medical records of what you are and are not capable of. Should you get a head injury or dementia, its no good them asking you some of their common questions, if its something you've never been able to do, it would give a false idea of your capabilities.

Other than that I can't say it's looking particularly good for us as we age, services seem to change when you get to 60 and you go from adult to geriatric which is a s weird as you going from child to adult at the other end of life. Service for older people like all the various incarnations of Age UK which are different outside of England seem totally ignorant of ASC and I don't just mean they're rude of anything, but it just dosen't register with them, they seem to have no idea that older people can be and are ASC, so they dont' cater for it.

I dread ending up in a care home where they try and make me listen to Abba or something, I found it bad enough the first time round, or being made to go to musical theatre or something equally abhorent.

I think this will be the next big challenge to ASC people and services such as NAS, we need to educate elderly care services about our needs.