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IsabellaLinton
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20 Feb 2020, 3:10 pm

skibum wrote:
After five and a half decades of being Autistic, the older I get the worse I get. My symptoms are much stronger and much more pronounced now than they ever were and I even have symptoms that I did not have as a child and as a young adult. I am much more neurologically fragile and vulnerable. I am much more deeply affected by everything and I do not recover as well or as quickly or as completely. Sometimes it is so bad that I sincerely believe that I am reaching the end of my lifespan.


I feel this way too. My nervous system is shot. I'm exhausted, burnt out, and unable to learn new coping mechanisms. I can't tolerate sensory or social input and I can only feel safe if I'm alone, stimming and avoiding the outside world.


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firemonkey
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20 Feb 2020, 4:36 pm

From an autism perspective I don't think I'm particularly better . I cope by living a rather basic and low key life. Even then I still need support .


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Your neurotypical (non-autistic) score: 47 of 200
You are very likely neurodiverse (Aspie)


skibum
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20 Feb 2020, 6:22 pm

IsabellaLinton wrote:
skibum wrote:
After five and a half decades of being Autistic, the older I get the worse I get. My symptoms are much stronger and much more pronounced now than they ever were and I even have symptoms that I did not have as a child and as a young adult. I am much more neurologically fragile and vulnerable. I am much more deeply affected by everything and I do not recover as well or as quickly or as completely. Sometimes it is so bad that I sincerely believe that I am reaching the end of my lifespan.


I feel this way too. My nervous system is shot. I'm exhausted, burnt out, and unable to learn new coping mechanisms. I can't tolerate sensory or social input and I can only feel safe if I'm alone, stimming and avoiding the outside world.
I hear you sister. :heart:


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BTDT
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20 Feb 2020, 6:41 pm

These days I understand that "dodging social bullets" all day at work is highly stressful even if you don't get "hit" by any of them. And that it is a "full days work" even if you didn't do anything else. 8O

Oh yeah. Your coworkers really appreciate it when you can handle difficult customers and defuse potentially explosive situations. They will come up to me afterwards and say they didn't have a clue as to what the customer was trying to say. :D



skibum
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20 Feb 2020, 7:21 pm

BTDT wrote:
Long term relationship. 15 years.
Ah, thank you!


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darkwaver
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20 Feb 2020, 8:42 pm

In general I've improved with age. Childhood was the worst part, young adulthood was when I was able to do the most. As I grow old there's been a decline again, but a lifetime of experience helps me cope. I'm no longer so afraid of people, and can get by a little bit better socially. Sensory sensitivities are increasing though, my processing speed is slowing, and even very small amounts of stress wear me out quickly. Executive function seems the same - still a spacey scatterbrain who compensates with routines and sameness and written reminders for everything.



Dial1194
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21 Feb 2020, 2:02 am

My guess would be a combination of coping strategies and that the perception comes from people who actually know they're autistic and so have deliberately worked towards working around it, particularly later in life.

For example, I'm better at handling loud noises because I know (now) that I have sensory sensitivities. I don't feel a problem with moving out of a room or building in a controlled manner, or simply sticking my fingers in my ears. I'm better at handling conversation, because I can keep a mental finger on my stress levels and how they're being affected by simple social interaction.

From the outside, it often looks like I'm handling these things without stereotypical autistic reactions, and even internally there's a certain comfort in knowing where I am with respect to stress, so I won't necessarily have discomforted expressions etc. That can certainly give the impression that I'm not affected by autism as much, whereas I am, I'm just able to deal with it more smoothly on the surface (especially if the issue causing the problem is only low-level).



SharonB
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22 Feb 2020, 9:18 am

jimmy m wrote:
I have an INTJ personality and I think that is a big part of the equation. ...I incorporated quiet into the design of my home and it is almost scary sometimes how quiet it is inside the home even when a major storm passes through. I enjoy life.


firemonkey wrote:
From an autism perspective I don't think I'm particularly better . I cope by living a rather basic and low key life. Even then I still need support .


My BFF is ISTJ and ASD-like. She has done what you both have done and is content. I am an EFNP and constantly interacting with people and, well, that's rough. She admires that I am OUT THERE and making an impact (despite that I am a "hot mess"). I admire that she is IN THERE and peaceful (despite her "small" life).

And even though my life is chaotic and especially stressful right now in a time of change (age 50), I agree with...
jimmy m wrote:
I am like a bottle of wine. I improve with age.


My ASD is what it is, my coping with Life has improved.



JustFoundHere
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22 Feb 2020, 7:11 pm

Oh yes, AS/HFA improves with age - esp. considering the presence of awesome people early on i.e., family, friends, and those few (never enough) awesome teachers, therapists, as well as the current awareness of the Autism Spectrum.

The growth of online resources e.g., Wrong-Planet also prove important.



skibum
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22 Feb 2020, 9:38 pm

There are two different outcomes that can happen with aging in ASD, especially for HFAs. The first is that as HFAs learn and develop coping skills their lives can significantly improve and the severity of the symptoms of ASD can decrease. But there is also another situation that can happen and that does happen to a lot of us. I know first hand because it is happening to me and to AS close friends of mine in real life. This outcome is very different.

For us, even though we have excellent coping skills that have kept us alive and almost indistinguishable from nts over the decades, the cumulative stresses that we have endured over the decades and that we continue to endure, have weakened us psychologically, emotionally, neurologically, and even in some ways, physically. In fact, we have become and continue to become literally crippled by the stresses that we face every single day and we become less able to cope as the stresses accumulate. Having been forced to cope and be as nt as possible for decades in order to try to blend in has taken such a toll on us that we can no longer do it and we are now very crippled.

It is very important that people understand that both scenarios exist and are very real and that each case is equally valid and equally important to understand. If people only think that HFAs get "better" as they age, those of us who are struggling to stay alive will be neglected because people won't believe that we are neurologically deteriorating because of the toll of being Autistic in an nt world where no one is believing us or helping us.


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Last edited by skibum on 22 Feb 2020, 9:42 pm, edited 2 times in total.

IsabellaLinton
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22 Feb 2020, 9:41 pm

skibum wrote:
There are two different outcomes that can happen with aging in ASD, especially for HFAs. The first is that as HFAs learn and develop coping skills their lives can significantly improve and the severity of the symptoms of ASD can decrease. But there is also another situation that can happen and that does happen to a lot of us. I know first hand because it is happening to me and to AS close friends of mine in real life. This outcome is very different.

For us, even though we have excellent coping skills that have kept us alive and almost indistinguishable from nts over the decades, the cumulative stresses that we have endured over the decades and that we continue to endure, have weakened us psychologically, emotionally, neurologically, and even in some ways, physically. In fact, we have become and continue to become literally crippled by the stresses that we face every single day and we become less able to cope as the stresses accumulate. Having been forced to cope and be as nt as possible for decades in order to try to blend in has taken such a toll on us that we can no longer do it and we are now very crippled.

It is very important that people understand that both scenarios exist and are very real. If people only think that HFAs get "better" as they age, those of us who are struggling to stay alive will be neglected because people won't believe that we are neurologically deteriorating because of the toll of being Autistic in an nt world and no one believing us or helping us.


This x 100 ^ :heart:


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skibum
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22 Feb 2020, 9:53 pm

I cannot stress enough the importance of understanding what can happen to us as we age and how we can become crippled and the things that specifically can happen to our bodies as well as to our cognitive abilities. The problem is that when we exhibit behaviors that are because we are neurologically crippled, like when our functioning levels fluctuate so incredibly dramatically in very short periods of time, because nothing shows up on medical scans and because these are not psychiatric issues, no one understands that they are neurological struggles that come from being neurologically crippled from decades of damage because we have tried to cope with an nt world. So because of the ignorance to this side of Autism, when we do struggle we get labelled as fakers and malingerers. Some of these struggles, I know for me, can actually be literally life threatening and there is nothing worse than, when you are fighting for your life, to then have to deal with overcoming the struggle of being bullied and treated as a faker because people are ignorant to how this works. Not only are you being denied the help you need but now you have to deal with people bullying you for asking for help.


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22 Feb 2020, 10:50 pm

My social skills definitely improved with age, and practice.
But I've been having a lot of problems with burn-out in the last ten years, and recently mental health issues as well. I just don't seem able to do as much as I want to or think I ought.



aquafelix
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23 Feb 2020, 8:26 am

I think my autism probably appears to be the worst it has been for the last 25 years. I spent so many years frantically masking and trying to appear normal, but now I feel old and tired and don't have the energy to mask and so my autism appears worse cause I no longer have the energy to hide it.



firemonkey
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23 Feb 2020, 8:48 am

Sometimes I think I'm a 14 year old in a 63 year old's body .


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Your neurodiverse (Aspie) score: 133 of 200
Your neurotypical (non-autistic) score: 47 of 200
You are very likely neurodiverse (Aspie)


auntblabby
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23 Feb 2020, 9:12 am

sometimes i feel like a 9 year old in a 90 year old body.