As with so many things, here I am processing how I feel by writing something about it. If you're involved with the autism community, please do feel free to l...
correct me if im wrong but if you just get diagnosed at 50 then clearly the autism wasnt debilitating to your real life no? how does having a diagnosis of something, you had regardless of the label, change anything about ur current life?
afaik there isnt medication or anything for autism tho i could be off base here
I was diagnosed in my 30’s and I’m in my 40’s now. I I got really good at pretending to be neurotypical, but doing this is exhausting. I got diagnosed after a massive burn-out. Knowing my brain is wired differently helps me prevent another burnout. I can drop the act and that alone is a huge relief.
Imagine waking up one day and realising you’re different to everyone else around you, this might happen at an early age because you have supportive people around you, or it might happen in your 20s when you’re leaving home for the first time to join the big world around you, or it might happen later in life.
It takes you years to realise you are different, because you grew up like this and as a child you think everyone feels and thinks the same. You learnt to mask all those differences because you want to fit in, but you don’t really fit in very well because most of it is an act. You’re a lonely child, and you feel alone a lot of the time, but this is ok because there is comfort in being alone.
Imagine having to act differently to how you feel every waking hour of your life when you are around people. It’s exhausting, it’s very debilitating. I wish I could go back in time and explain to myself that everything will generally be ok, but I doubt I would have listened as almost every waking moment was spent in fight or flight mode.
I grew up in the 80s, and much like the 70s unless it was really obvious there was a problem, you were generally left to yourself. I am self diagnosed because it can take years for a diagnosis without having money. Would it help if I were given a formal diagnosis? Perhaps, it might help with giving myself a break more often, I might be more compassionate to myself when I struggle with normal things. Ultimately though, I will still struggle with those things, perhaps I would be given more support, I doubt it though.
When I read your first question I felt it was a bit insulting, but I hope it comes from a good honest place and you’re not just being ignorant on purpose.
You’re at a barbeque and/or party, you look to your left there’s 1 or 2 people that you have spoken to before, but still you feel uncomfortable. You look to your right, you don’t spot anyone you know, so you gravitate towards the left. After half an hour you muster up the courage to introduce yourself for the second time in a year, and someone laughs because you’re being overly formal and they remember you from last time. Instantly you feel embarrassed for yourself and them, noone told you how you’re supposed to react in these scenarios and you pulled the wrong chance card out of existence. You go home later and for weeks afterwards you emotionally connect to that point in time. Everytime you think back you play that moment back where someone laughed. You worry the next time you’re invited to something social, you will react the same or worse.
How is this not debilitating? I’m fucking sick of neurotypical people telling us how we should react. You are the bullies and eventually we will prevail. You are a footnote in existence, we are the unique and interesting people that will destroy your shit lives. Fuck. Off.
It 100% was debilitating my entire life. I just didn’t know why, and people around me blamed me for it rather than understanding that my brain works differently
I know you didn’t mean to, but that’s incredibly insulting. I’m used to it though, see above
It can be a powerful thing to realise that you’re not a failed neurotypical. It can provide context to past experiences, which can provide closure, even years later.
Plus, there must have been something that prompted this guy to be assessed and diagnosed - a common pattern I’ve seen is people who never really are coping, but they keep kicking the ball down the road because what else can you do? It feels like chronic sleep deprivation over a long period, where you can keep pushing yourself, but eventually you burn out.
In terms of other ways it can help, finding community is a big thing. I was diagnosed in my teens, so quite a different story to the guy here, but I learned that many autistic people struggle with sensory processing and this made so much sense because I’ve always found sound and light overstimulating. Tinted glasses (not quite as dark as sunglasses) and noise cancelling headphones have helped me a lot.
Plus, when it comes to interpersonal relationships, autism provides a toolbox of terms that I can use to explain things. There was a paper some years back that explored a phenomenon called the “double empathy problem”, and roughly speaking, it found that communication between two autistics is fine, as is communication between two neurotypicals. However, things get rocky when an autistic and a neurotypical try to communicate. It reframed communication difficulties associated with autism as a communication compatibility issue, rather than a deficit integral to autism. In practice, this insight means that if I am negotiating a tricky communication problem with a neurotypical partner, it’s easier if we understand it as a compatibility problem.
An analogy I’ve always liked for autism is that it’s like running on a different operating system. There isn’t a strictly better option, because it depends on what you’re trying to do. My brain is much more inclined to certain things and getting my diagnosis helped me to begin to realise that. But it’s pretty demoralising to be running Linux and continually trying and failing to run programs from .exe files. They’re build for windows and it can feel like you’re a failure for not being able to run them. However, understanding and embracing one’s differences can be empowering because it means realising that you can run Windows programs, if you use software like Wine.
Been there.
correct me if im wrong but if you just get diagnosed at 50 then clearly the autism wasnt debilitating to your real life no? how does having a diagnosis of something, you had regardless of the label, change anything about ur current life?
afaik there isnt medication or anything for autism tho i could be off base here
I was diagnosed in my 30’s and I’m in my 40’s now. I I got really good at pretending to be neurotypical, but doing this is exhausting. I got diagnosed after a massive burn-out. Knowing my brain is wired differently helps me prevent another burnout. I can drop the act and that alone is a huge relief.
Imagine waking up one day and realising you’re different to everyone else around you, this might happen at an early age because you have supportive people around you, or it might happen in your 20s when you’re leaving home for the first time to join the big world around you, or it might happen later in life.
It takes you years to realise you are different, because you grew up like this and as a child you think everyone feels and thinks the same. You learnt to mask all those differences because you want to fit in, but you don’t really fit in very well because most of it is an act. You’re a lonely child, and you feel alone a lot of the time, but this is ok because there is comfort in being alone.
Imagine having to act differently to how you feel every waking hour of your life when you are around people. It’s exhausting, it’s very debilitating. I wish I could go back in time and explain to myself that everything will generally be ok, but I doubt I would have listened as almost every waking moment was spent in fight or flight mode.
I grew up in the 80s, and much like the 70s unless it was really obvious there was a problem, you were generally left to yourself. I am self diagnosed because it can take years for a diagnosis without having money. Would it help if I were given a formal diagnosis? Perhaps, it might help with giving myself a break more often, I might be more compassionate to myself when I struggle with normal things. Ultimately though, I will still struggle with those things, perhaps I would be given more support, I doubt it though.
When I read your first question I felt it was a bit insulting, but I hope it comes from a good honest place and you’re not just being ignorant on purpose.
You’re at a barbeque and/or party, you look to your left there’s 1 or 2 people that you have spoken to before, but still you feel uncomfortable. You look to your right, you don’t spot anyone you know, so you gravitate towards the left. After half an hour you muster up the courage to introduce yourself for the second time in a year, and someone laughs because you’re being overly formal and they remember you from last time. Instantly you feel embarrassed for yourself and them, noone told you how you’re supposed to react in these scenarios and you pulled the wrong chance card out of existence. You go home later and for weeks afterwards you emotionally connect to that point in time. Everytime you think back you play that moment back where someone laughed. You worry the next time you’re invited to something social, you will react the same or worse.
How is this not debilitating? I’m fucking sick of neurotypical people telling us how we should react. You are the bullies and eventually we will prevail. You are a footnote in existence, we are the unique and interesting people that will destroy your shit lives. Fuck. Off.
I’m 33 and was diagnosed recently
It 100% was debilitating my entire life. I just didn’t know why, and people around me blamed me for it rather than understanding that my brain works differently
I know you didn’t mean to, but that’s incredibly insulting. I’m used to it though, see above
It can be a powerful thing to realise that you’re not a failed neurotypical. It can provide context to past experiences, which can provide closure, even years later.
Plus, there must have been something that prompted this guy to be assessed and diagnosed - a common pattern I’ve seen is people who never really are coping, but they keep kicking the ball down the road because what else can you do? It feels like chronic sleep deprivation over a long period, where you can keep pushing yourself, but eventually you burn out.
In terms of other ways it can help, finding community is a big thing. I was diagnosed in my teens, so quite a different story to the guy here, but I learned that many autistic people struggle with sensory processing and this made so much sense because I’ve always found sound and light overstimulating. Tinted glasses (not quite as dark as sunglasses) and noise cancelling headphones have helped me a lot.
Plus, when it comes to interpersonal relationships, autism provides a toolbox of terms that I can use to explain things. There was a paper some years back that explored a phenomenon called the “double empathy problem”, and roughly speaking, it found that communication between two autistics is fine, as is communication between two neurotypicals. However, things get rocky when an autistic and a neurotypical try to communicate. It reframed communication difficulties associated with autism as a communication compatibility issue, rather than a deficit integral to autism. In practice, this insight means that if I am negotiating a tricky communication problem with a neurotypical partner, it’s easier if we understand it as a compatibility problem.
An analogy I’ve always liked for autism is that it’s like running on a different operating system. There isn’t a strictly better option, because it depends on what you’re trying to do. My brain is much more inclined to certain things and getting my diagnosis helped me to begin to realise that. But it’s pretty demoralising to be running Linux and continually trying and failing to run programs from .exe files. They’re build for windows and it can feel like you’re a failure for not being able to run them. However, understanding and embracing one’s differences can be empowering because it means realising that you can run Windows programs, if you use software like Wine.
Agreed Linux > Windows.
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