velocity

someone to talk to. i was diagnosed seveal years ago, which told me nothing i didnt already know. it only confirmed i have have quite severe AS. id like some labels for some of things with which i struggle, to better understand them. i get no support, ive noone to speak to and i ###### hate being alive. i struggle with the minuatae of life- to the extent ive taped down the door handles in my flat, so i can push and pull doors open, without having to expend extra thought on telling my hand to push the handle down to open a door. its easier not to eat, as even opening a packet is too irratating. i dont know what thats called. i can only concentrate on thngs within a foot of my eyes, so just tune out the rest of the world much of the time~ i dont know whats thats called. so it makes it dificult to speak to speak to people, unless theyre very close~ but i dont like people i dont know being that close. i dont know what thats called. i have really extreme hypersensitivty, and get little sleep. id like a support worker to take me to hospital- i have to have an MRI in a few weeks- to explain that when i politely ask someone to keep their voice low, or to speak with someone who's english as i cant follow foreign accents, im not being rude, or racist, but autistic, and that yelling at me makes it worse. i have severe claustrophobia, ADHD, and those with my severe hypersensativity make it unlikely that even with sedation ill be able to tolerate an MRI, esp if i cant even lie in it first (when its off) to see how i fare. im articulate and erudite so able to explain this clearly, but people *still* just think if you 'try a bit harder' you can overcome all this, as though its a choice.

has anyone here any experiance of the AS units at either the tavistock, to where ive been referred first, or the maudsley, which is the back up referral?? or is there any other AS unit in london? i was diagnosed at the camden and islington unit, at drayton park~ after diagnosis, they gave me the number for the NAS and shooed me out the door (always ironic, since so many people with AS find phone calls dificult). my dr said he though the unit at the tav is mainly small AS groups, which is useless for me, as i have really bad auditory processing issues, so cant follow conversations of two or more people :/ he's calling them today, and if its no go, ill be referred to the maudsley. i have a slight obsessive hatred *cough* of the tavistock, anyway, as i was seen there for depression a couple of times, prior to diagnosis, and told i was essentially 'doing all this for attention'. the only two other people i know whove been there, have also since been diagnosed with AS, and the tav missed it in both of them, despite it being blindingly obvious. they insisited on group therapy for me to help me 'socialise', which i said was pointless as i cant follow conversations and felt uncomfortable around others (and other blatant AS indicators), and never returned. however, my dr said the maudsley is a really depressing place to attend and clearly wants it to be the last resort. is there any unit, or any shrink in london?? i saw a neuro psychologist in kings x once, in the diagnosis process, but she spoke so slowly i wanted to killllll heeeerrrrrr.

im of the slightly overly empathic type of AS, but despite that id never, ever watch a doc on AS as i spend so much of time trying to forget it. im rarely on forums for that reason. ive never read a single book (im even quoted in one and never even bothered to see what the book looked like, or how it was reviewed). ill watch something on other health conditions in which im vaguely interested, but i hate AS so much. i suppose at least online im engaged but just watching something is purely passive, so if they said things which annoyed me id have no outlet, and i do suspect id either see things i disagreed with, or which would make me upset~ either way its unhelpful to me, as im not involved. i know this is really illogical rationale, but hey~ that's aspergers for you 1. Do you think that the mainstream media portrays AS in a way that is generally representative of reality, or does it have a strong tendency to portray AS in ways that are biased, unrepresentative, misleading, or muddled? ~ i see very little representation, and there remains little awareness of it, even in medical staff. ive been treated in hospital a lot recently- though my GP warned them i have As, and asked they read up on it- one nurse told me after reading up on AS 'its like you have a split personality', one spoke to me like i was a 2 year old, ive been told off for crying, asked to arrive at 10am in a waiting room, and wait there til 4 for surgery etc. noone knows,a nd noone give a flying f. oh, and obv, im racist if i ask for an english dr as i cant understand foreign accents, but all staff think its ok to move to the uk and not learn english~ those people get free interpretors, but there is no awareness training of AS, let alone support staff- for a condition defined as involving communication dificulties. gotta love the irony. unless the doc was made by a certain type of AS person, rather than *any* AS person, or Nts, it'd be pointless. AS is so complex that most people regard it as amusing weirdness, or social rudeness etc, and have really tiresome misconceptions and misunderstandings. even the 2 'experts' who diagnosed me, knew less about it than i did, adn theyd worked in it for 5 years; i only had 2 years of time in forums, but i was able to point out things of which theyd never heard, which are published (because they only accepted scientifically verified things as fact). then within AS some people are so unaware of the full spectrum of varients. eg- i told one As girl, at uni, training to work in AS kids' care, i cant drive. she wrote me a very kind, lengthy email, telling me to get noise cancelling headphones. but the reasons i cant drive are nothing to do with that~ i have severe visual crowding, so any movement in my periphery is regarded by my brain as an attack, almost. im poor at multi tasking, have slow visual processing, and a host of other visual cognitive problems. but because her As doesnt constrict her life, and she's happy with it, she just thinks veryone else can be like her, but isnt trying, or can be eaily fixed with noise cancelling headphones. but, compared to her, its like ive got no limbs :/ that dr whom the beeb have on to present medical docs, is probably AS, btw, tho im unsure whether he realises it~ micheal mosley. is aw him interview some AS guy (it wasnt mentioned, but the guy was an obsessive comics collector amongst other standard give aways) and he was kind of amused by this guy in a way i thought a little tasteless and cruel (part of AS, but still, not nice to see). 2. Would you have more faith and trust in a documentary about AS shown on the BBC; or a small-scale independent production uploaded to YouTube; or purely in terms of content rather than producer? ~i think the bbc is pretty poor on this kind of thing. overly earnest, lacking in humour~ channel 4 might do it ok, though some of their things on health and whatnot are borderline vouyerism. id only watch something on tv. id expect really poor production standards on yt, sorry :/ and i only watch comedy clips and music on yt, anyway, so its no somewhere i associate with 'serious' stuff- again, my illogical As though process at work : ) 3. If an independently produced documentary was critical of the NAS (I doubt that any BBC produced ones will be) then would it affect your judgement of it, if so then how? ~i know everyone is really critical of the NAS, and ive heard it some many times, even from one person whose family member had been on the board of it, that im already sceptical of it. to be fair to them, their helpline has been very good to me, but yeah, ive only ever heard very odd stories about them.

hi~ i complete the survey too : ) like many people with AS i have profound sleeping problems, so those questions were harder to answer, as its beyond my control,a nd when ive had little sleep for a long time, my awareness of everything dips, as im running on adrenalin. also, when im engaged in something im less likely to stop and eat because im focused on that activity to the exclusion of everything else, and that also diminishes my bodily awareness. one of the major barriers i have to eating and drinking is that i find small activities irratating and stupid- if im hungry, i just want to eat, and become involved in an activity (preparing food) THEN eat; its very frustrating. even open a packet of biscuits can feel frustrating because even though its only a few seconds, it seems illogical to have a barrier between my stomach and a biscuit. and, in common with lots of As people, i have quite bad stomach & food problems, food makes me ill, so whatever i eat eliminates hunger but makes me ill in other ways :/ ive noticed that i do this with other functions~ that i have scratches i dont remember getting, because i havent noticed scrapes at th time, or that i take a long time to react to being hot or cold~ partly because im slow to recognise it, and partly because doing small tasks is irritating. good luck with your research : )

hi~ i imagine that there is as wide a spectrum of reactions to homepathy amongst As people, as in the general NT population. obviously As can make some people more likely to adhere to convention, in others it can make people equally likely to be intersted in things outside the norm. for me, i tried to treat bad period pain for several years with different homeopathy pills with no result. undeniably, i didnt follow the instructions properly, and contaminated the pills by letting them fall into a dusty make up bag, then scooping the back up (very messy AS behaviour ). about 10 years ago i was referred to the royal homeopathic hospital in london (i think its called the naturapthic hosp or something now); this was before i knew i had AS. i was first treated for period pain. by this time i really didnt have any expectation of homeopathy either way. every single thing i tried gave me severe reactions. i was also treated there for depression, and the same thing happened~ the drs i saw said i was unusually sensitive to it. its so long ago i cant remember it clearly, but i know thing for depression gave me elated feelings similar to coming up on an E~ nice, but really unhelpful in the middle of the day at work, ha ha. my GP was happy to refer me, and was very open minded about it. ironically, though the hospital is open to anyone from across the uk, and in my borough, my PCT no longer fund treatment there. in the end, i gave up going, as nothing seemed to work, the appointments were a long time apart, and i found it dificult to communicate and blah blah blah aspergers (impatience, frustration, moodiness etc). after i was diagnosed with AS, i heard that some people with AS are highly sensitive to medication~ i have extreeeeeemmmmmeee sensory sensitivity, im sensitive to daylight and the differently charged ions, and so far all of the sleeping pills my dr has tried on me have ended up with the most extreme reactions possible (i never read up before hand, so im certainly not thinking myself into things). one low dose pill has given me permanent tinnitus in one ear :/ my inertia to try anything for AS is bourne of pessimism and exhaustion over unfulfilled hope. things help 5, 10 % and thats it, and i find it exhausting to take anything daily~ the benefits never outweigh the hassle of using them~ and i spend my entire life trying to diminish the hassles i experiance~ which is something which people without As fail to understand. i dont know what its called, but one of my worst As aspects is over the minuatae of life~ if i want to eat, i dont want the hassle of taking a plat, then a knife, then opening food to prepare a meal (one of the reasons i just eat raw food and sandwiches, as heating things is an extra hass). twisting down a door hadle to open a door is annoying, when i just want to be in another room,without having to walk there- dealing with doors is unbelievable annoying. even though meds may help a little, they become another burden in that part of my brain. measuring out small drops was way too complex for me.