I know we're not clinicians here so I'm not looking for actual diagnoses as such. I just feel the need to let a few words out while I have the chance. As some of you know (I've mentioned it before) I have Klinefelter Syndrome, which could be classified as physical symptoms with a high chance of autism thrown in. Specifically, KS is a genetic disorder affecting males in which there occurs - by pure, random chance - a second X-chromosome on top of the one you already have, making your chromosome pattern XXY (intersex) rather than XY (male).
KS comes with a raft of comorbidities and just like every syndrome, there's a spectrum to it. Until quite recently I never delved into the complexities; it was just how things were for me. But I was a slow student at school. I had difficulties with language and I couldn't socialise or make friends or, if I did make a friend or two, I couldn't work out how to keep them. I was ostracised for being physically different and mentally 'deficient' (that was my mother's term for it). All in all, during my formative years I was a pinball, rebounding from one disaster to the next and leaving a trail of failure behind me. Left school with no qualifications; worked in menial jobs where I was bullied constantly; belittled at home by parents unable to understand how they - one a scientist, the other an engineer - could have produced such a complete moron; bullied by my sisters; regarded with pity by the extended family... it goes on and on. Right the way from one end to the other, my childhood and youth conformed to the same pattern: "This is YOUR fault. YOU are thick. YOU are stupid. What did WE do to deserved YOU?" As you can gather, the first half of my life was pretty depressing. Until i was diagnosed with KS around the age of thirty I'd got used to being blamed for everything that went wrong in my life.
Post-diagnosis, the tune within the family changed a little. Mum went from aggressively blaming me for everything that was wrong with me to being the compassionate, supporting mother I'd so needed for the first thirty years. That was the mother I learned to love. It was as if, having been proved wrong about me, she felt the need to make up for it - but without sacrificing her pride. She was still strict, stern and quick to smack down her authority, but she was no longer unforgiving. She game me some breathing space. KS had by then done most of its damage - I was unable to socialise, I was withdrawn and scared but at least I now had a safe space - my room. I've lived in the room in which I now write these words for over forty years.
Then my mother died, in 2017, of a brain haemorrhage. I sat by her bed every day during her final illness, holding her hand, talking to her, just *being* with her... begging her to come back. It didn't work. On 26th March 2017 she left us, aged 79 and, suddenly, I was directionless.
Whatever else she did and didn't do, my mother provided me with routines. Monday was wash day. Tuesday was shopping day. Wednesday was tidy-and-hoover day. Thursday was ironing day. Friday was shopping day. Saturday and Sunday were ours to do whatever with. All of that was gone. Dad does his best, but he doesn't know how to create a routine. I think he clung onto her more than I did. He likes to think we chug along okay but, for me, it's been a living form of chaos ever since. Nothing's the same. When do I wash stuff? When do I shop? What do I shop for? What do we need? How do i choose between this brand or that brand? What would Mum have done? Why do I have no clean clothes? Why is my room a mess?
I couldn't cope. Things piled up on me, over and above the obvious. Dark parts of my soul, past traumas and episodes, started to surface again. Memories and behaviours and thoughts that I'd thought to be under control started to rise up and consume me. Alcohol abuse. Overeating. I have bloated in the eighteen months since she passed. A year and one week ago, I tried to commit suicide and I was successful enough that I was hospitalised. After that I was in the psychiatric ward for a few weeks. It was while all this was going on that I took a look at what I could remember of my past and to try to fit the broken pieces together.
Memory is a problem. I have forgotten nearly everything in my life. My short term memory is disastrous. I've forgotten everyone I went to school with, bar a hint here and there. Most of the people I work with, I've likewise forgotten. I can no longer picture my mother's face. I'm veering dangerously close to forgetting her too. It's as if, if a person is not in my life all the time, they're just deleted. It's as if my brain, wired wrong thanks to that extra chromosome, just doesn't know how to remember things.
I had to look up the date of my mother's death for this thread because I'd forgotten a date ought to be seared into my mind. I also can't remember my dad's birthday, and I've lived with him all my life. The point is, I'm starting to worry. There seems to be something seriously 'off' with my brain. This can't be normal forgetfulness. I'm fifty years old. I lived with my mother until she died, when I was aged forty-eight. I can no longer picture her in my mind. When I see photos of her in the house I sometimes pause in surprise, remembering after a moment that, yes, I did know this woman.
So I'm wondering what on earth could be wrong with me. I can't just go to the doctor and tell him my memory sucks. He's going to need more than that to go on. The traumatic memories are solid - I can't shake those off no matter how hard I try. But day-to-day stuff is a blur, a fog. I can't remember what I did yesterday. I can't remember what I did ten hours ago, sometimes. It's as if there's some sort of mesh between 'me' and the memories, and very little gets through it. If it wasn't horrible and traumatic, if it's just normal life, I forget it almost immediately if it's not written down somewhere.
Can head injuries do this? I've had three that I recall. One was inflicted by my mother during an attempt to discipline me that went very wrong. That was an impact to the left side of my head. The second was an impact to the top of my skull from a skied (hit up in the air) cricket ball, which chose my head to plummet down on. The third was the result of my one and only attempt to ride a skateboard: it went forwards, I went backward, and the back of my skull met the pavement. I never saw any medical people about these things. It was the eighties. Head injuries were part of growing up.
So now for the other symptoms, the hidden symptoms that nobody sees but me, because if there's one thing I DID learn growing up, it was to never, ever let anyone see what I was going through, because there would be no compassion - only bullying.
When I'm alone at work, driving my van miles away from anyone, in that precious solitude, the mask finally falls and whatever symptoms I manifest are given free rein. I talk to myself, the echolalia goes nuts, I repeat words as the radio and the satnav say them, I say things the moment I see them, so on and so forth. There's probably a 'lalia' for all of it, but I don't know the terminology. But the words and repetitions are getting worse and I know this because I'm starting to slur some of them, as if I'm forgetting them in mid-repetition. It's reaching a level where I *know* there's something wrong but there's no one I can talk to about it at work, home or wherever because, for one reason or another, my family is totally unenlightened where autism and brains in general are concerned. My nephew, who's aged thirteen, is severely autistic and they'll acknowledge that, but not my symptoms. I'm just told to man up and get over it.
I spoke to my doctor and asked for a referral to the autism people; so far, I've heard nothing. So if there's a question at the end of all this, I suppose it's "What the hell is happening to me?"
Any ideas?
KS comes with a raft of comorbidities and just like every syndrome, there's a spectrum to it. Until quite recently I never delved into the complexities; it was just how things were for me. But I was a slow student at school. I had difficulties with language and I couldn't socialise or make friends or, if I did make a friend or two, I couldn't work out how to keep them. I was ostracised for being physically different and mentally 'deficient' (that was my mother's term for it). All in all, during my formative years I was a pinball, rebounding from one disaster to the next and leaving a trail of failure behind me. Left school with no qualifications; worked in menial jobs where I was bullied constantly; belittled at home by parents unable to understand how they - one a scientist, the other an engineer - could have produced such a complete moron; bullied by my sisters; regarded with pity by the extended family... it goes on and on. Right the way from one end to the other, my childhood and youth conformed to the same pattern: "This is YOUR fault. YOU are thick. YOU are stupid. What did WE do to deserved YOU?" As you can gather, the first half of my life was pretty depressing. Until i was diagnosed with KS around the age of thirty I'd got used to being blamed for everything that went wrong in my life.
Post-diagnosis, the tune within the family changed a little. Mum went from aggressively blaming me for everything that was wrong with me to being the compassionate, supporting mother I'd so needed for the first thirty years. That was the mother I learned to love. It was as if, having been proved wrong about me, she felt the need to make up for it - but without sacrificing her pride. She was still strict, stern and quick to smack down her authority, but she was no longer unforgiving. She game me some breathing space. KS had by then done most of its damage - I was unable to socialise, I was withdrawn and scared but at least I now had a safe space - my room. I've lived in the room in which I now write these words for over forty years.
Then my mother died, in 2017, of a brain haemorrhage. I sat by her bed every day during her final illness, holding her hand, talking to her, just *being* with her... begging her to come back. It didn't work. On 26th March 2017 she left us, aged 79 and, suddenly, I was directionless.
Whatever else she did and didn't do, my mother provided me with routines. Monday was wash day. Tuesday was shopping day. Wednesday was tidy-and-hoover day. Thursday was ironing day. Friday was shopping day. Saturday and Sunday were ours to do whatever with. All of that was gone. Dad does his best, but he doesn't know how to create a routine. I think he clung onto her more than I did. He likes to think we chug along okay but, for me, it's been a living form of chaos ever since. Nothing's the same. When do I wash stuff? When do I shop? What do I shop for? What do we need? How do i choose between this brand or that brand? What would Mum have done? Why do I have no clean clothes? Why is my room a mess?
I couldn't cope. Things piled up on me, over and above the obvious. Dark parts of my soul, past traumas and episodes, started to surface again. Memories and behaviours and thoughts that I'd thought to be under control started to rise up and consume me. Alcohol abuse. Overeating. I have bloated in the eighteen months since she passed. A year and one week ago, I tried to commit suicide and I was successful enough that I was hospitalised. After that I was in the psychiatric ward for a few weeks. It was while all this was going on that I took a look at what I could remember of my past and to try to fit the broken pieces together.
Memory is a problem. I have forgotten nearly everything in my life. My short term memory is disastrous. I've forgotten everyone I went to school with, bar a hint here and there. Most of the people I work with, I've likewise forgotten. I can no longer picture my mother's face. I'm veering dangerously close to forgetting her too. It's as if, if a person is not in my life all the time, they're just deleted. It's as if my brain, wired wrong thanks to that extra chromosome, just doesn't know how to remember things.
I had to look up the date of my mother's death for this thread because I'd forgotten a date ought to be seared into my mind. I also can't remember my dad's birthday, and I've lived with him all my life. The point is, I'm starting to worry. There seems to be something seriously 'off' with my brain. This can't be normal forgetfulness. I'm fifty years old. I lived with my mother until she died, when I was aged forty-eight. I can no longer picture her in my mind. When I see photos of her in the house I sometimes pause in surprise, remembering after a moment that, yes, I did know this woman.
So I'm wondering what on earth could be wrong with me. I can't just go to the doctor and tell him my memory sucks. He's going to need more than that to go on. The traumatic memories are solid - I can't shake those off no matter how hard I try. But day-to-day stuff is a blur, a fog. I can't remember what I did yesterday. I can't remember what I did ten hours ago, sometimes. It's as if there's some sort of mesh between 'me' and the memories, and very little gets through it. If it wasn't horrible and traumatic, if it's just normal life, I forget it almost immediately if it's not written down somewhere.
Can head injuries do this? I've had three that I recall. One was inflicted by my mother during an attempt to discipline me that went very wrong. That was an impact to the left side of my head. The second was an impact to the top of my skull from a skied (hit up in the air) cricket ball, which chose my head to plummet down on. The third was the result of my one and only attempt to ride a skateboard: it went forwards, I went backward, and the back of my skull met the pavement. I never saw any medical people about these things. It was the eighties. Head injuries were part of growing up.
So now for the other symptoms, the hidden symptoms that nobody sees but me, because if there's one thing I DID learn growing up, it was to never, ever let anyone see what I was going through, because there would be no compassion - only bullying.
When I'm alone at work, driving my van miles away from anyone, in that precious solitude, the mask finally falls and whatever symptoms I manifest are given free rein. I talk to myself, the echolalia goes nuts, I repeat words as the radio and the satnav say them, I say things the moment I see them, so on and so forth. There's probably a 'lalia' for all of it, but I don't know the terminology. But the words and repetitions are getting worse and I know this because I'm starting to slur some of them, as if I'm forgetting them in mid-repetition. It's reaching a level where I *know* there's something wrong but there's no one I can talk to about it at work, home or wherever because, for one reason or another, my family is totally unenlightened where autism and brains in general are concerned. My nephew, who's aged thirteen, is severely autistic and they'll acknowledge that, but not my symptoms. I'm just told to man up and get over it.
I spoke to my doctor and asked for a referral to the autism people; so far, I've heard nothing. So if there's a question at the end of all this, I suppose it's "What the hell is happening to me?"
Any ideas?
