So yesterday, I did some semi sort of like deep thinking into myself. I actually went and googled, "why do I always manage to unintentionally offend people?" And the first result had to do with Aspergers. I've not ever thought I had Aspergers, and I'm not going to self diagnose myself with something because it's....not a good idea. Reading more of the symptoms, however & how it affects relationships, etc I was wondering if I might have it. I plan on going to my doctor and requesting a test as well, just in case. I've never had anyone say they thought I might have it, none of the multiple doctors I've seen have suggested it. My question, though is. Does having Aspergers affect my SSI amount? I can't get SSDI because I've not earned enough work credits, and I understand SSI is also based off income. Basically, does having another illness diagnosed to my other list of illnesses going to make any kind of difference to my SSI amount? I'm assuming not, but I thought I would ask. Maybe someone with Aspergers can answer this?? Or someone who just got diagnosed with a new illness while on SSI. I've not been on my SSI too terribly long, almost a year now maybe and I'm most of the way to understanding it all but,
My 25 year old son, diagnosed with autism, severe anxiety, intellectual/developmental disability, has had a severe sleep disorder his entire life.
He averages about 3.5 hours of sleep per night. Often, that's not all at the same time but aggregate between 10pm - 6am.
Over the years, we've tried dozens (and dozens...) of both alternative and conventional treatments.
Specific to prescription medications to help induce sleep, we've tried over 15. Almost all medications have had a paradoxical effect on him (activating vs. sedating). None have helped with sleep.
He's been on risperidone for about 3 years. No other meds.
We have not tried Trazadone (and probably many others).
ANY ideas are welcome!
By Southern Discomfort
I've just gone down on risperidone, from 2 mg back down to 1 mg. This is part of the plan to shift things around a bit and depend a little more on lamotrigine than risperidone because I'm a little worried about my increased prolactin levels, it sort of looks like I'm growing breasts a lot of the time and of course I don't like that. No one has actually told me my prolactin levels outside of "it's higher than normal". What "normal" means is anyone's guess because they're either not telling me or can't tell me. Whatever. At any rate I don't like it so the plan is to keep risperidone down to a minimum, I originally felt bit from my so-called "psychotic" symptoms at 1 mg anyway.
Maybe I should have gone up in lamotrigine before lowering risperidone again. I've had a harder time with my self-esteem again in the last couple of days and I don't feel as happy generally as I did before. I had a bad appointment with my psychiatrist on Wednesday, I came out feeling pretty much like shite. I tried to explain my difficulty with sudden plans people make, the one example I used was the friends from my peer group decided they wanted to go for a coffee after the session further up in town. I couldn't do it, there wasn't enough notice for me and I already got it into my head that I was going to go home and I couldn't change the route now, my anxiety went up as a result. Instead of "trying to pathologise it" my psychiatrist tried to push the idea that if I condition myself more to try things I'm not expecting that it would come more easily to me in the future. I understand where he's coming from and maybe that's true but I also don't necessarily believe it will work. My social worker and my old psychiatrist told me I'm autistic and my understanding of it is that changes in routine don't really suit people with autism. My old psychiatrist was great, I'm still annoyed he decided to leave for Exeter, he explained to me that if I try to "normalise" (for lack of a better term) my autistic traits my tics and anxiety would get worse as a result. So with that knowledge trying to condition myself to joining in with out of the blue activities seems counter intuitive. I'm now confused of what to do with myself. This new psychiatrist won't even give me a diagnosis for anything and I have a lot of doubt in my head about the Asperger's thing because whilst there is a fair bit I do relate to there is also a lot I don't. I spend nearly every waking hour reading about autism trying to piece bits together of how it affects me BECAUSE NO FUCKING PROFESSIONAL WILL TELL ME. I feel like making a Freedom of Information request because they just won't tell me anything. Either that or just not talking to any of them again and just shutting down completely.
I have a hard time trying to express myself at the best of times. Trying to get words out of my head onto paper or verbally is very hard because I just don't know how to start myself and these things escape me before I even have a chance to grab hold them. It's a miracle that I got this far into writing about myself. Every time I meet with my psychiatrist or social worker they ask me, "How have you been?" I don't know how to answer that. Generally? Over the last from days? How do I sum it up without over or under appreciating what I've felt? I try to distract myself from my thoughts at the best of times with my interests so that masks a lot of what I feel so it's not like I have full excess to my thoughts and feelings at the best of the time because if I did I would be drowning.
I don't really feel like I have anyone to talk to about these things, no one who can truly relate to what I feel or do anything about it. I have one cousin who also has Asperger's that I might be able to open up to but I don't know if I can or not. I feel like if I try to make attempts to talk to people that I might come across as needy so I generally don't bother, I also don't know the appropriate amount of time before chatting to someone again so I just avoid doing it all together. He's is especially the case of this because he doesn't seem to want to chat to his family a lot of the time and he deleted his mum and one of his sisters off Facebook and his other sister thinks she's only hanging on by a thread so I don't want that to happen to me because I genuinely like the guy.
I just don't know what to do. I feel alone and confused.
I/we just joined up because.. Eh. Needing support/people who relate and such. Social media's alright, but the privacy is always wonky and the ability to compartmentalise isn't so great. Forums/IRC are better for this kinda thing, I think.
Anyway, yeah. Barrel of raccoons, etc. We have a long list of things, most diagnosed, some not (some by choice.. I don't want DID going anywhere near my medical record. :x). I keep thinking I've processed my abuse stuff and then discovering yet another delicious core of it under the next layer. Heh. My resolution this year at least is to not end up like 2015.. Too many near misses on suicide (we suck at it, it turns out), too much.. Retreating back indoors, not doing anything, not going anywhere.. Barely creating like we used to. So, yeah. I want to change. However, treatment-resistance is a pain on that front (in the 'my brain chemistry gives no fucks for your puny pills' sense, rather than 'my doctor thinks I talk back too much and all I got was this crappy diagnosis' sense). I took about 15-20 variations on antidepressants before throwing the towel in at hardcore-MAOIs (having to give up ADD meds, painkillers and basically-eating? Nah.).
Anyway, pluralwise there's four of us. We'll probably all stick our noses in here once in a while. I'm Whisper. There's also Wynn, Tri and Felix. We're fairly recently plural.. Had a breakdown last year and that did it, I think.
* C-PTSD (not diagnosed yet but plain as day)
* General Anxiety Stuff that includes panic attacks, OCD symptoms, social anxiety.
* Chronic Pain from Ehlers Danlos Syndrome
* Depression-Dysthemia (Chronic/Severe/Treatment Resistant)
* Oh, we get psychogenic seizures, too. Trying not to be embarrassed about that.
Er. Anyway. Hi.
This is selfish and stupid, but i will waste your time to ask opinions, as i am desperate.
When i was 11 i got severely bullied (physical, violent) at a new school for a year before my mother realised and moved me. Before, she kept telling me 'ignore them, they'll go away'. I took the bullying by gangs surrounding me to mean, you deserve to be annihilated, to die, die; and my mother's instructions to mean, you have no right to defend yourself. This was a physically felt meaning, not pondering. Looking for an explanation, i found fundamentalist christianity which said: you were born evil and deserve to be tortured for all eternity and only constant begging forgiveness and a complete change of personhood can save you. Nobody around had any psychological understanding - this was long ago - and i had no-one to talk. As a christian i tried to 'kill myself alive' because I didn't have the guts to kill myself but hated myself and wanted to kill myself, which continues, I am a sadist against myself.
I got along in life by ignoring my emotions that's where they lead and instead being logical and disciplined: I planned my work and worked my plan. Everything failed, over and over again, I will only give a few examples: I turned out to be infertile after trying to get pregnant for seven years, I trained for various jobs and got work experience but could never pass interviews; my back gave way at random and still does and is painful but I never got a diagnosis. Finally, every last hope I had of escaping the life I hated, of constant mental pain and suicidal ideation (it's called? i had severe bouts of wanting to or fearing that i would kill myself eg six months in bed unable to move saying 'die' over and over, or one day waking with nothing but terror which lasted a fortnight, throughout my life, but no realistic suicide attempts) but with other emotions as well, failed within a year. Something inside me snapped and everything gave way. I had substituted constant going out and huge acquaintance for lack of friends throughout my life, but I found out I knew no-one I could talk to. Everything had always interested me, but suddenly all my 'interests' left me cold. I had always had a vivid, creative imagination constantly bubbling away with new ideas and plans, I could come up with original and creative stuff in every field, it was the only way I passed academically, my ideas were always novel: suddenly it had vanished. I've never trusted my own mind, or that things were real. I kept finding myself crying or shrieking 'I can't take it any more, I can't bear it' but I don't know what this meant, I often couldn't breathe from the pain, I couldn't bear to live another moment, I couldn't sleep. I live deep in a village and can't drive, I would go off into the fields so I could shriek or scream or roll around crying on the ground. This intense level of pain lasted about 3 months and then a lesser level another 3 or 6. I learned to control it by not thinking about the past or future because these are what set the fear off but pretending every day is an identical repeat. I don't have the physical effects like exhaustion any more but I have lost the ability to do mental arithmetic, at which I excelled, and spelling. Even if the art therapist says 'draw something' I think 'draw a line' but have to find one to copy, so my imagination's gone. It's been three years but I can't get any clue what's wrong with me and what happened.
At the time I was volunteering at a school in the hopes of getting enough experience to adopt. I really believed that if I told the parents at the open evening that I was a paedophile*, they would lynch me: I wanted to die, the pain was unbearable, but I was too cowardly to do it myself. I really believed I would definitely die and no-one would blame them and everybody would be happy and it would cause no trouble. I'm not proud I did it but really can't remember it properly, it's like it happened to another person. So I'm on the sex offenders' list, I have to avoid one town and large parts of two others (only 3 within easy reach), and some part of me thought, maybe my perception of reality is wrong. (Duh.) I forced the doctor to send me to a psychiatrist and they also assessed me for autism (their idea) and my diagnosis is autism.
But I think I am mentally ill. Not knowing what the pain and fear are that coming upon me at random or if I dare to think about life is unbearable. I want to know what's wrong with me and what happened: where did my feelings go? Why did my cognitive function (eg short term memory, all thinking) suddenly and sharply degrade; my imagination vanish overnight; my feelings disappear; all my interests? At the time I felt terrified that I was falling in an endless void deaf and blind, like a trapdoor opened in life and everything turned into 2D scenery and I fell; now it feels like there is one world inside my skull and another outside. I spend most of my day distracting myself with the internet and reading, usually I feel a pleasant dull numbness and just bouts of this fear-pain.
I get art therapy and have twice seen a psychiatric nurse. If I say to any of them 'I am in fear, what is this pain' they just say 'I don't know' 'how strange' 'you tell me'. They won't say anything's wrong with me or anything happened. I didn't expect them to cure me but I did expect a diagnosis. At first they said it was autism, now they make out it's only happened to me and it's a complete mystery. They want me to repeat my former life eg join evening classes because then I will make friends, for the first time in half a century, miraculously, and have meaning in my life. But I hated my life, I studied and worked to escape it, my meaning was escaping that hell, for decades. I lost all hope and meaning vanished with it. What I experienced was emotional exhaustion: I had had so many painful knockbacks, and each time I ignored my feelings, relied on discipline, picked myself up and started again. But this time something snapped inside like old elastic, went limp, didn't respond. It's like you have to manufacture emotions each time you feel them and I am too exhausted inside to make these emotions, I just feel flat and can't respond to things (people, ideas, events).
I don't want anyone to think I live in constant suffering: weirdly, after five years' unemployment I got a job, I spend as long commuting by rural bus as at work, and so kill a lot of time. Everything is perfectly pleasant: but it is like spending your life imprisoned in a luxury doctor's waiting room, with all the entertainment you might want, food, warmth, drink, toilets, beds, but no meaning in life, no point, terrifying if you think about it and perfectly pleasant if you refuse to.
I have to ask you to believe me that, by poverty, not driving, and rural location, there is almost no service or person or self-help group I can access, nearly all I have found by constant internet and IRL search have said 'no, your case is too difficult', I have finally found one psychotherapist who says she will teach me the correct way to talk and listen next year.
I totally accept the autism diagnosis, and it explains a lot – inability to pass my first thousand job interviews (my calculation is I have been to that many, since I often had several a week and have spent most of several decades jobhunting unemployed), inability to ever make close friends, not knowing how I feel until it's too late. But I can't get over my fear of not knowing what happened or how to predict if it will happen again, if things will change (after 3 years I assume not) etc. What I want isn't sympathy (my selfpity is limitless!) but information about what this strange numbness is, this failure to work of your emotions, what happened in the sudden crisis of pain? I just want to know what that is, or have some clue. I am a sceptic and doubt everything, nobody should be afraid that by suggesting an idea I will obey it or suffer: in fact, I argue with every suggestion, I can't help it, rudely so. I am sorry to waste your time so much, but if you have experienced anything similar or have any suggestions, I would be fascinated to hear them. I am not set on believing I am mentally ill or in search of any diagnosis, I am open to any ideas and have searched autism info for explanations: I just want to understand, to have a clue where I am and what happened to me. Thanks in advance, maia (UK)
*i don't like sex, with children or otherwise, i'm frigid, though as a woman, I have done it, by lying there, rigid with embarrassment
NB i have dyspraxia-autism, not rainman/Grandin type, i have no short or long term memory, balance, spatial perception, hate maths, can't bear to be alone, no sensory issues etc i just can't recognise my emotions or express them or read others' emotions or therefore share feelings