Hello everybody,
I found this forum when I was searching for fora for people with autism/HFA/Asperger's, not about them, and one that isn't too overrun with people who accessorise themselves with supposed ASD because it's the new geek-chic must-have.
I was diagnosed with HFA as a teenager and, as such, was probably among the earliest crowd to receive an autism-spectrum diagnosis at all. One of my parents worked with people with classic autism and was more aware of the 'higher-functioning' forms than the mainstream, even in medicine, at the time. That's why I was taken for diagnosis at a time when most others like me went unnoticed.
Unfortunately, though, my parents weren't receptive and had, against better knowledge I think, thought that a diagnosis would somehow shock me back to 'normality'. It didn't. Despite what one of them did for a living, I was considered broken and was drilled into appearing normal with great pressure and frequent punishment. The diagnosis itself was never acknowledged. Incidentally, said parent stopped working with autistic people after my diagnosis and made a second career in public administration.
About 20 years on, I finally have a halfway tolerable life after many years of struggling, but no thanks to the treatment I received from my parents, but in spite of it. Unfortunately, because I was drilled into 'acting normal', I fly completely under the radar in everyday life these days. Barely anyone knows, and you have to get closer to me than I can tolerate most people being in order to suspect anything. My SO knows, of course, and was never the least bit surprised.
About two years ago I initiated another diagnostic process. (I live in Europe and it's covered by health insurance. In many other places, I wouldn't have been able to afford it.) I was relieved when I received a related diagnosis, this time Asperger's. The different diagnosis may be due to the lack of data from my childhood. But, in the end, it doesn't make a difference; the problems remain the same and I'm still at odds with society, and the diagnosis acknowledges that.
I had had many psychosomatic health issues leading up to the second diagnosis that made me think I needed to change my life, and one of the most glaring things about that was to stop pretending - including to myself - that I was 'normal'.
My main issue these days is the problem of how not to run myself ragged in an NT world with NT demands while still making a living, preferably in something not quite as wrong for me as the field I work in at the moment. The problem is that part-time work doesn't exist much anywhere else, and that I don't have the connections and the ability for sustained social schmoozing to work in the niche where my degree is.
Full-time work is out unless absolutely necessary for survival. I've done it, and I crumble after a while. I can be fairly okay (sometimes even better) when I pace myself, as I can when working part-time. But that's just a shaky equilibrium that isn't the same as being functionally NT. The silly thing is that it's not the work part that is ever the problem, it's the part where I have to do it an NT world with NT social demands that leaves me feeling like I've run a marathon at the end of every day.
Ideally, I'm hoping to talk to people who are facing similar problems. Because, there has to be something better than subsistance, and I'm looking for ways to get there.
Regarding what I said about 'geek-chic must-haves', I'm not referring to self-diagnosis, as long as it's based on an actual understanding of what autism/ASD are. I know how tough it can be to get a diagnosis, or to pay for it, and how risky it can be in some circumstances. But - online at least - I have come across so incredibly many people who claim to have Asperger's or to be on the spectrum only to respond to autism-related problems like your typical, garden-variety, uneducated-in-autism-matters neurotypical person-on-the-street that my patience is running thin and my guard is up. It's not an accessory, it's my lived reality, with everything that comes with it, every day.
I'm quite happy to be who I am. I wouldn't take the pill that 'cures' me if it existed. I just wish that the only world available to me weren't one I so heavily clash with.
I found this forum when I was searching for fora for people with autism/HFA/Asperger's, not about them, and one that isn't too overrun with people who accessorise themselves with supposed ASD because it's the new geek-chic must-have.
I was diagnosed with HFA as a teenager and, as such, was probably among the earliest crowd to receive an autism-spectrum diagnosis at all. One of my parents worked with people with classic autism and was more aware of the 'higher-functioning' forms than the mainstream, even in medicine, at the time. That's why I was taken for diagnosis at a time when most others like me went unnoticed.
Unfortunately, though, my parents weren't receptive and had, against better knowledge I think, thought that a diagnosis would somehow shock me back to 'normality'. It didn't. Despite what one of them did for a living, I was considered broken and was drilled into appearing normal with great pressure and frequent punishment. The diagnosis itself was never acknowledged. Incidentally, said parent stopped working with autistic people after my diagnosis and made a second career in public administration.
About 20 years on, I finally have a halfway tolerable life after many years of struggling, but no thanks to the treatment I received from my parents, but in spite of it. Unfortunately, because I was drilled into 'acting normal', I fly completely under the radar in everyday life these days. Barely anyone knows, and you have to get closer to me than I can tolerate most people being in order to suspect anything. My SO knows, of course, and was never the least bit surprised.
About two years ago I initiated another diagnostic process. (I live in Europe and it's covered by health insurance. In many other places, I wouldn't have been able to afford it.) I was relieved when I received a related diagnosis, this time Asperger's. The different diagnosis may be due to the lack of data from my childhood. But, in the end, it doesn't make a difference; the problems remain the same and I'm still at odds with society, and the diagnosis acknowledges that.
I had had many psychosomatic health issues leading up to the second diagnosis that made me think I needed to change my life, and one of the most glaring things about that was to stop pretending - including to myself - that I was 'normal'.
My main issue these days is the problem of how not to run myself ragged in an NT world with NT demands while still making a living, preferably in something not quite as wrong for me as the field I work in at the moment. The problem is that part-time work doesn't exist much anywhere else, and that I don't have the connections and the ability for sustained social schmoozing to work in the niche where my degree is.
Full-time work is out unless absolutely necessary for survival. I've done it, and I crumble after a while. I can be fairly okay (sometimes even better) when I pace myself, as I can when working part-time. But that's just a shaky equilibrium that isn't the same as being functionally NT. The silly thing is that it's not the work part that is ever the problem, it's the part where I have to do it an NT world with NT social demands that leaves me feeling like I've run a marathon at the end of every day.
Ideally, I'm hoping to talk to people who are facing similar problems. Because, there has to be something better than subsistance, and I'm looking for ways to get there.
Regarding what I said about 'geek-chic must-haves', I'm not referring to self-diagnosis, as long as it's based on an actual understanding of what autism/ASD are. I know how tough it can be to get a diagnosis, or to pay for it, and how risky it can be in some circumstances. But - online at least - I have come across so incredibly many people who claim to have Asperger's or to be on the spectrum only to respond to autism-related problems like your typical, garden-variety, uneducated-in-autism-matters neurotypical person-on-the-street that my patience is running thin and my guard is up. It's not an accessory, it's my lived reality, with everything that comes with it, every day.
I'm quite happy to be who I am. I wouldn't take the pill that 'cures' me if it existed. I just wish that the only world available to me weren't one I so heavily clash with.
