Fear getting old as an autistic person?

A very common fear, I expect, which can be very intense for us.  I think it's there in the general population but also that we have many additional reasons which compound that fear.  The thing is, much of it is all too realistic, given the state of services.  Health and social care have deteriorated over the years and they probably weren't that great to start with.  And then we have other issues with accessiblity and coping with systems not designed for us.  I've had these all my life, beginning in my teens when I was very limited in life by severe anxiety but couldn't even phone, let alone see a doctor due to that selfsame anxiety!  

Two things I remind myself of and buoy myself up with:

1.  The life expectancy stats, however they were derived, are most likely out of date.  More people are now being diagnosed and many of these will have flown under the radar for years if not decades.  I am the first-identified member of such a family and had no idea either that I might be autistic or that it was associated with lower life expectancy until I got into my 50s.  The stats are horrible, I know, and lots of factors feed into that.  However, in my family we tend to be long lived - well into our 80s/90s - and I know we won't be included in those stats.  So, depending upon your health and background, your individual level of risk may be very different from what the studies suggest. 

2.  There may well be steps we can take to actively reduce those risks, again depending upon our individual health profiles and needs.  Personally I lift my spirits with gardening and improve my mood and health with walking each day and doing a few resistance band exercises.  I've also found that a low carb diet suits me and I monitor any changes on some recently acquired body composition scales (my fat:muscle ratio still isn't great but at least I know about it now).  I find them quite motivational and accurate compared to any readings from the GP's surgery and I use them, along with a cheapo blood pressure monitor, as a kind of dashboard for my health (can't quite believe I've paid attention to my car's dashboard signals for years but never gotten around to this line of thinking before.  Clearly my body is more essential to me than my car).  I basically do as much as I can at home and use the GPs as little as possible. 

Now I'm not, of course, suggesting that the problems aren't significant.  I'm in the role of carer myself and I have considerable fears for the future.  I've just found that I needed to counterbalance this with things that bring me hope and a sense of progress or even just stability.  Due to my chronic health conditions I'm uninsurable too, when it comes to life insurance, so what I do on that score is pay what I would have paid into insurance into my own personal "if-I-get-sick" fund.  As it stands, it won't last long, but I feel more positive having a "buffer zone" that is slowly increasing.  I appreciate, though, that I'm probably in a privileged position to be able to do this.   

I can't say that my anxiety has disappeared.  Again, those fears are realistic, not pessimistic.  But I've shifted my focus and I need to get some pleasure out of the now. 

PS  I'm 60 now and prefer to think about ways in which I can extend the number of healthy years I still have rather than the idea that, because of some studies that might not be representative of people like me, I must be living on borrowed time.  Obviously I could go at any time, but such things have really impinged on my quality of life and so I'm not "going gently"!

A very common fear, I expect, which can be very intense for us.  I think it's there in the general population but also that we have many additional reasons which compound that fear.  The thing is, much of it is all too realistic, given the state of services.  Health and social care have deteriorated over the years and they probably weren't that great to start with.  And then we have other issues with accessiblity and coping with systems not designed for us.  I've had these all my life, beginning in my teens when I was very limited in life by severe anxiety but couldn't even phone, let alone see a doctor due to that selfsame anxiety!  

Two things I remind myself of and buoy myself up with:

1.  The life expectancy stats, however they were derived, are most likely out of date.  More people are now being diagnosed and many of these will have flown under the radar for years if not decades.  I am the first-identified member of such a family and had no idea either that I might be autistic or that it was associated with lower life expectancy until I got into my 50s.  The stats are horrible, I know, and lots of factors feed into that.  However, in my family we tend to be long lived - well into our 80s/90s - and I know we won't be included in those stats.  So, depending upon your health and background, your individual level of risk may be very different from what the studies suggest. 

2.  There may well be steps we can take to actively reduce those risks, again depending upon our individual health profiles and needs.  Personally I lift my spirits with gardening and improve my mood and health with walking each day and doing a few resistance band exercises.  I've also found that a low carb diet suits me and I monitor any changes on some recently acquired body composition scales (my fat:muscle ratio still isn't great but at least I know about it now).  I find them quite motivational and accurate compared to any readings from the GP's surgery and I use them, along with a cheapo blood pressure monitor, as a kind of dashboard for my health (can't quite believe I've paid attention to my car's dashboard signals for years but never gotten around to this line of thinking before.  Clearly my body is more essential to me than my car).  I basically do as much as I can at home and use the GPs as little as possible. 

Now I'm not, of course, suggesting that the problems aren't significant.  I'm in the role of carer myself and I have considerable fears for the future.  I've just found that I needed to counterbalance this with things that bring me hope and a sense of progress or even just stability.  Due to my chronic health conditions I'm uninsurable too, when it comes to life insurance, so what I do on that score is pay what I would have paid into insurance into my own personal "if-I-get-sick" fund.  As it stands, it won't last long, but I feel more positive having a "buffer zone" that is slowly increasing.  I appreciate, though, that I'm probably in a privileged position to be able to do this.   

I can't say that my anxiety has disappeared.  Again, those fears are realistic, not pessimistic.  But I've shifted my focus and I need to get some pleasure out of the now. 

PS  I'm 60 now and prefer to think about ways in which I can extend the number of healthy years I still have rather than the idea that, because of some studies that might not be representative of people like me, I must be living on borrowed time.  Obviously I could go at any time, but such things have really impinged on my quality of life and so I'm not "going gently"!