Fear getting old as an autistic person?

You're not kidding, I'm very impressed and would be interested in anything else she has to say.

I think she may go far.

Ben

I like this approach very much.  Thank you. 

I think there's a lot to be said for living in the present, moment by moment. Take therefore no thought for the morrow and all that.

Same goes through my head too

Hi, Dawn,

I'm 52, and so it feels as if I'm getting closer to 'old age' day by day. It's not so much that I fear getting older, but more I fear how I will get older.

Here's my situation: I lost both my parents some time ago, and only have contact with one of my siblings. I'm not married, don't have children, and have never been in a relationship—how autistic people ever manage to find a partner remains a complete mystery to me.

So, I guess I don't have to wait until I'm very very old to know how it feels to be alone and, at times, very lonely and afraid. As I get older, I doubt there will be anyone around for me—simply because there isn't anyone around for me now. 

The ideal situation, if the gods allow, I suppose, would be to live a happy life until a certain age, and then die of natural causes, one night, in bed, without even knowing. Or to go suddenly at any age, without warning!

My gran in is her 90's and has just gone into a care home and loves it there, she is able to have time on her own and have meals in her room if she wants, but she is very sociable and likes the parties and events they provide. There is a lovely garden area that she can go into.

The secret to staying as healthy as possible is to do light exercise and eat lots of salads and fruits that is what she does even though she does like cake etc  

God, grant me the serenity to accept the things I cannot change,
the courage to change the things I can,
and the wisdom to know the difference

Yeah, fab little talk

Thank you Dawn for such a comprehensive reply. I'll have a listen to Jac den Houting's talk - I see she's on utube.

Ben

Yes, there are some advantages :-)

Nah. Have always looked forward to getting old, actually. Now that I'm getting there, it's maybe a little less awesome than I anticipated (nobody told me about the sciatica!), but...   nothing to fear, really.  Perhaps there are some differences with gender expectations, but I definitely find it a relief to *not* be a young woman anymore.  Sexual expectations go away. There's less pressure to dress fashionably or wear makeup. Comfortable shoes are more acceptable. Men don't try to chat me up anymore. People are no longer surprised if I turn out to be competent at something. All that is quite nice. 

Yes, I think I recall.

Am I right in thinking you are a GP. I wish we could have a specialist practice in each town for the neurodivergent population, staffed by neurodivergent GPs, nurses etc.

I was talking to our OH lady at work. ND herself and her kids are autistic, what a different conversation. No need to explain anything, cos she just got it. It took so much stress out of it.

Pretty much my approach when I was younger. Don't think about health and health worries are not there - until they are.

My body scares me witless several times a day now and I cannot get into the GPs surgery.

The GPs don't get it. They think I "suffer" with autism, but they are looking into how to help me get in there to examine me. At least this surgery is trying.

Pretty sure my mother has significant traits if not actually autistic and she's frail now, but 82. On the other hand, I had a cousin pass in her 50s who I suspect might have been.

Seen in quite a few research papers also Jac den Houting's Ted talk, which is well worth a look.

If you dig further into the Stats, 54 is the much cited recent estimate, but different groups of autistic people experience different reasons for early mortality.

In the intellectually impaired epilepsy can have some thing to do with it, for others lack of easy access to health care, also suicide rates which are especially significant in the late diagnosed high IQ, and higher again in women. Then stress related illness or alcohol problems.

However if there are no medical co-mordidities like epilepsy say, there is no reason an autistic person can't have a long healthy life without any of the stress related stuff or suicidal ideation, provided they are identified early in life and their needs are met, such that these things do not develop in the first place.

That could certain be an excellent reason for getting a diagnosis in later life. 

I just try to eat well, I almost always cook my own meals as you don't know what ki ds of additives are in conve iwnce food, and in canteens you don't know how fresh the oil is.

My stupid gut reacts badly to quite a few things, and last year didn't help as I was given a lot of antibiotocs for long-term treatment against advancec periodontitis. That by the bye rots a more than just your teeth or gums....

I hope to be like Gandma Moses, and hope my best work wl come into being once I am much less chained to the day job.

Cancer scares me, so do strokes, but in the case of getting dementia, I just hope someone will very kindly blow my brains ouf

Yes getting old is not nice and our expectancy is not good, especially when something dreadful has happened to one.

Somehow, learn to enjoy and not have regrets.

I feel suicidal, but fight hard to avoid that outcome and am involved in setting up a major national research project to try and reduce early death in autism people

It must be difficult looking after your elderly parents.

I don't find medical things easy either and find it more of a concern as I get older.

On the statistics, I think my father was autistic and he lived into his 80s. 

I have spent quite a bit of time thinking about the future over the last few years and worrying. I am now trying where possible to enjoy anything I can now and block it out of my mind until I need to think about it again.

Dawn, can I ask where you got the life expectancy  figure from?  because if it's 54 I've already exceeded that by 16 years!

I was looking forward  to becoming old and cantankerous. 

Oh! hang on a minute..................

Ben

Dawn, you are not alone feeling this way. I am more than scared of my future and whether I'll be supported when I'm old and after my parents have died. I'm only 26 and already have struggled immensely when trying to cope on my own. I spent two months in a mental health unit when the professionals tried treating my autism. I've looked for support but there is none, I hope this will change as it really cannot go on.

Hopefully, you will have others in your life long before you reach that point or else perhaps the services improve to give you the support x