Mumsnet has not checked the qualifications of anyone posting here. If you need help urgently, see our mental health web guide which can point you to expert advice.

Support thread - adults on the Autistic Spectrum :)

(714 Posts)
fuzzpig Fri 16-Mar-12 08:41:41


I've seen a lot of MNers mention being on the Spectrum, whether diagnosed or not. I thought we could use a long-running place to chat, share coping strategies and basically to know there are other people like ourselves, who won't judge us for being different.

I'm new to all this myself - only realised there was a possible name for How I Am a couple of weeks ago (thanks to MN)! Now I have a referral to an adult ASD specialist, to see if I have Aspergers. It's all happened very quickly.

Enough waffle from me (for now anyway...) but I hope other people will come along and find this thread useful. smile

MarynotBeSarcastic Fri 16-Mar-12 14:35:15


PooPooInMyToes Fri 16-Mar-12 17:36:02

Good for you. I think my brother is on the spectrum and that being diagnosed might help him, but its not really the sort of thing you can suggest to another person is it. They need to realise and want to find out themselves. If i mentioned it i think he is the type to take it as a personal insult.

SystemofaDowny Fri 16-Mar-12 19:32:01

Hi fuzzpig. I followed the link to your new thread here. I have been doing alot of thinking today again and failing to write my report because of it. I have almost convinced myself to bring it up at my doctors appointment this week. This might change by tomorrow though but what you said about being impatient made me think that I probably won't be able to rest until I get a definite answer either way. Do you mind if I ask what you said to your doctor and what questions he asked you? If I am going to do this I will need to prepare and work out what I am going to say.

Also have you done this test? I found it online. It is longer than the last one I did but I scored about the same percentage on both.

fuzzpig Fri 16-Mar-12 19:52:36

Hi System, I'm glad you followed the link smile

The weird thing was, I barely had to say anything. I think I got lucky and had a nice doctor. I was horrifically nervous and basically said that people had told me Aspergers is a possibility (I didn't say Mumsnet as I thought I might get the hmm face!), and that I took the AQ - that's worth mentioning because unlike other tests it apparently is respected. She said quite early she was happy to refer but asked me to describe some symptoms anyway. I stumbled through a few main ones (focused on the 'triad of impairment' mentioned on the NAS site) and then just gave her the list I prepared.

PPIMT - I don't know actually, since all this happened (a mere fortnight ago! shock) I have frequently thought to myself, WHY did nobody tell me this. Not one person (even the many MH staff I've seen over the years) said anything. I half feel like it is my own fault for hiding my symptoms fairly well - most of the stuff like obsessions and routines are all done in my head now because I haven't dared expose it since I was young and worked out it is abnormal - but I just wish somebody somewhere had flagged it up years ago.

You can't know his reaction... Maybe it will be relief? If it gives him an answer? It depends if he has any self insight I suppose. Are your parents around to help broach it sensitively? He might be angry at you but in the long term he may thank you.

fuzzpig Fri 16-Mar-12 20:10:03

162/200 on the quiz. Some of those questions, especially the really specific ones, were so me it was like they had opened a window into my soul.

fuzzpig Fri 16-Mar-12 20:43:58

Oh and 51/200 for 'neurotypical'. For some reason, that score hurt a bit sad

SystemofaDowny Fri 16-Mar-12 22:48:17

My result was:
Your Aspie score: 166 of 200
Your neurotypical score: 36 of 200
and I learnt a new word: alexithymia

Anna1976 Sat 17-Mar-12 03:06:16

Great support thread Fuzzpig.

[arrives, goes and sits in corner with book...]

BTW PooPooInMyToes: your brother could actually find it a blessed relief to work out why stuff has been so bloody difficult all his life. He might not be insulted at all, if it gives him a framework for why he's like he is and what he needs to do to get round things and live an easier life.

fuzzpig Sat 17-Mar-12 12:41:01


Just went to town with DH and DCs, am really struggling sad it's raining so the mall is extra busy. I have to admit though, it's kind of nice to know there may be a reason for feeling that way in crowded places. Not just being a wimp.

I've started getting worried about working FT too - I'll do alternate Saturdays and it is really busy then. It's just got a whole different atmosphere and I struggle when I go there socially. Maybe it'll be different as I'll be there working but I don't know sad

MarynotBeSarcastic Mon 19-Mar-12 07:43:53

Hope you had a restful day yesterday after Saturday. Knowing why you are like it does make you more aware of your feelings, but I've found it also gives you more control. For example if I know you am going to a difficult and stressful event, I try to arrange "time out" time befoe and after to enable me to function better.

SystemofaDowny Mon 19-Mar-12 10:37:13

I failed. I tried to talk to the doctor but just couldn't say the right words. I started shaking so much then got worried I was doing that in front of someone and my mind went blank. She kept asking if I wanted to say anything else. i did but no words would come out so I just said no. Why can't I do something simple like other people can. I hate myself so much right now. I wish I was normal.

PipinJo Mon 19-Mar-12 11:09:26

If you cross reference this post to SN children (do it myself but don't know how?) you will meet other parents who have AS themselves and now parents to AS children too.

MarynotBeSarcastic Mon 19-Mar-12 11:27:06

SystemofaDowny, don't hate yourself, thats a common feeling I can identify with. But if this were a friend or a child you were talking about, then you wouldn't hate them for something they found difficult. You'd want to help them and support them. I tell myself how can I hate myself for something that I wouldn't hate in others? When you feel stronger, perhaps you could try again? Maybe write down what you want to say, and then you know you've got that as backup should you dry up again. If necessary you can give the Dr the piece of paper instead.

PipinJo, you are right about parents of children with AS often having AS as well, but sometimes the overlap causes conflict. Its very hard to deal with when a parent is railing against the injustice of their child having AS, when you know you have those exact same traits. Its easy to get caught in the flak. No reason not to try, but when I am feeling delicate I tend to steer well clear.

devilinside Mon 19-Mar-12 11:58:08

Hi - good idea

My son is in the process of obtaining his diagnosis of HFA

Pretty sure all the adults in my family are on the spectrum, including my mum and sister, and, as for my dad - he's an ex-chess champion, who loves trains and science (not much doubt there).

Does anyone have any anxiety issues connected to their ASD? I am thinking of going to the GP to get some help for my social phobia. I suspect it stems from having aspergers and being forced to socialise at school (it started when I was 7)

DP also has aspie traits (although he's more NT than me) which does cause a few fireworks in the relationship

devilinside Mon 19-Mar-12 12:11:41

My score:

Your Aspie score: 152 of 200
Your neurotypical (non-autistic) score: 48 of 200
You are very likely an Aspie

fuzzpig Mon 19-Mar-12 15:46:04

System, you haven't failed. Despite not being able to say anything, you've still communicated that you are worried, as your doctor picked up on it and wanted you to say more.

I agree you should write it down. You could just hand over the list at another appointment. Your struggle to say what you need could work in your favour too.

Devil, have you got a diagnosis? And if not are you planning to? My dad said yesterday he is going to follow it up - when I linked him to the NAS site he said, as I expected, that a lot of it resonates with him. They said a lot of it doesn't apply to me, which is frustrating as I know it does, they don't know much about me at all and never have. They weren't the most attentive parents.

I spoke to the managers at work today, it went pretty well. We agreed that I can go to them with any worries about the job, although I made it clear that the job itself is brilliant for me. I said I was a bit worried about busy Saturdays but they reassured me that I wouldn't be doing as much with the public on those shifts anyway, and that I could always tell them if I struggle (they are going to tell the other deputy manager who works on my Saturday). I feel a lot better after talking it all through.

SystemofaDowny Mon 19-Mar-12 17:58:50

Maybe hate is the wrong word. I don't know how else to say that I don't like it, that I can't ever say the things I need to. I am so bad at communication I can't even explain on a forum how I feel and get people to understand. I even had a list with me that I wrote before, but I couldn't give it, even that was too hard. I don't know what you mean that it might work in my favour, how can anything go right when I can't explain. If someone could just read my mind for 5 minutes they might be able to understand. Unless that happens I will be stuck like this forever. I have had enough of getting told I am depressed and need to take anti-depressants. I am not depressed and the tablets do not work.

fuzzpig Mon 19-Mar-12 18:23:02

Because the doctor has already seen how much you struggled to get your point across in the appt today. They saw you being unable to communicate, getting nervous when asked a question about yourself, not making eye contact, etc. Those are all ASD-type traits so I'm sure that's only adding to your case. If you breezed in smiling and confidently saying "hello, I think I have ASD, here's why blah blah blah" then they might be more surprised and even a bit hmm?

I really understand about the antidepressants. How can they work on people like us? They don't change how we are. It is really common for Aspies in particular to be treated for depression instead.

My friend is emailing me some links specifically about women and adult diagnosis, as apparently it is missed more in females. I'll post them here when I get them.

SystemofaDowny Mon 19-Mar-12 19:28:44

OK I think I understand what you mean now. She made me another appointment for next week so I will just have to try again. It would be so great if I just walked in and she said 'I think you have ASD, do you agree?' then I could just say yes, which is easy. I much prefer those kind of questions with definite right/wrong answers. If someone says What is wrong? my brain just freezes but if they said Is it this or that? I can just say yes or no even though it is asking the same information. Not sure that makes sense to anyone except me.

I have several theories about why anti-depressants( in particular selective serotonin reuptake inhibitors) do not work on me. I studied pharmacodynamics/kinetics and psycho-active drugs in depth last year. If only I could get my thoughts down in writing and publish a paper on it, then all that information wouldn't be wasted.

fuzzpig Mon 19-Mar-12 20:32:42

It sounds like a receptive doctor, so you might find it easier next week. I think she might not let you get away with not telling her IYSWIM, and that's a good thing.

Is there really nobody who could go with you? I wonder if there's an MNer with experience in this subject who could go with you. I'm in West Sussex anyway. Or maybe could you say it over the phone beforehand? Pass a message on so she knows before you get there? I know it is so hard to say things, and open questions are just awful because they aren't definite! That's why I love maths, as usually there is a right answer, but I struggle with the more abstract, indefinite concepts. I HATE recurring decimals, but the fraction equivalents are fine!

I'm intrigued by your research, probably wouldn't understand much of it (science not my strong point) but I have tried lots of SSRIs. I also had SSNRIs and I was wondering about norepinephrine and its relationship to passivity. The whole adrenaline = fight or flight thing seemed to bypass me. I do not fight and I do not run. I never have. I just get paralysed no matter what the situation. This may be learned (I was sexually abused) but I'm not sure, I feel like I've always been like this. I was a passive child, no tantrums etc. I just wondered if it was some weird imbalance between adrenaline/noradrenaline. Anyway, the SSNRI I did have had a massive effect on my heart after years on it, I think norepinephrine is involved in the heartbeat isn't it? Sorry I should stop rambling now.

devilinside Mon 19-Mar-12 21:29:34

My communication skills are non-existant too. (ironic as I used to work in PR), but in my job I used a written script that I had prepared, plus many of the journalists I worked with were very geeky , and funnily enough I got on quite well with some of them - they really appreciated my honesty (don't think they'd ever experienced that before in a PR person.

Sorry, going off on a tagent, I have been on Mumsnet for almost 7 years (with a few namechanges), and haven't made one single friend on here, I don't think anyone has ever sent me a private message either. I am just as rubbish 'socially' on a forum as I am in real life.

SystemofaDowny Mon 19-Mar-12 22:01:47

I think having someone with me would make things worse. More people usually means more anxiety for me. I am in East Sussex. I also love maths. Doing a maths problem or even a puzzle like sudoku is how I calm down. Its weird but when I do numbers I can block everything else out. I don't like any kind of statistics though as they are usually meaningless unless interpreted. I also really like science because it is logical and fact based as well. I am currently studying molecular biology and biochemistry but don't worry I won't talk about them because I know most people do not find the subject as fascinating as I do.

Do you know norepinephrine is the same thing as noradrenaline? I think the reason it has two names is linked to the fact it acts as a hormone and a neurotransmitter too. Freezing (and the associated hyper-vigilence) is actual a normal part of the acute stress response along with fight and flight. It is commonly seen in animals especially where the prey is much smaller than the predator. In these cases the wisest option is to stay still and quiet and hope it loses interest rather than try to fight or out run it.

MarynotBeSarcastic Tue 20-Mar-12 07:22:01

Maths is my subject too, and I like doing Sudoku for relaxation. The biochemical stuff sounds interesting, although its not my passion. I did really like that sort of thing at school though! I had a condition in pregnancy called Obstetric Cholestasis. I diagnosed myself, and this upset my GP. The consultant on the other hand loved it that I researched the condition and kept him up to date. I used to read the research papers, googling any terms I didn't know/understand. He used to get me to explain my condition to any junior house drs who were interested smile

fuzzpig Tue 20-Mar-12 08:55:54

Devil I work in customer service (well part of the job is, anyway) and I've found it easier than I thought. We have procedures for everything, and I was also an apprentice so the NVQ and college course helped too. It's like I have an algorithm in my head for each situation. I get a bit upset if it diverts from it, say if a customer suddenly complains. I can hide it though, as I hide everything else.

I'm not a massive fan of sudoku - I don't like that after a certain point it is purely putting in whatever's left, rather than having to work it out IYSWIM. What I really love is a magazine called Beyond Sudoku - it's A4 and about £3.40. It's only available from WHSmith, it is AWESOME. I can lose myself in it for hours. I get annoyed with DH if he tries doing a puzzle from it and guesses something though. Guessing is BAD. IMO. blush

Thanks for the explanation System - I've often wondered why there were two names for the same thing. It's good to know that freezing isn't totally wrong (am I just an animal?), but I don't know why I do it for absolutely everything. Also why is there such a big thing about F or F and nobody mentions the third option? I feel discriminated against hmm grin

fuzzpig Tue 20-Mar-12 09:00:29

Beyond Sudoku (don't be put off by the fact it's made by Puzzler who normally make crap puzzle mags - this one really is brilliant - it is the only magazine to ever have me stuck on a puzzle!)

I feel I've found some kindred spirits here smile

SystemofaDowny Tue 20-Mar-12 11:25:21

Yes I know the beyond sudoku magazine, but there's not many shops near me that do those kind so I have to just get what they have at the time. Sudoku isn't my favourite either(too easy) but it is the one most people have heard of so is easy to explain that way. I like kakuro or hanjie best. sometimes I create my own maths problems to or if there is no pen and parer to hand I do something in my head like fibonacci sequence.

The fight or flight model for stress response is quite out of date but I think people remember it because it rhymes maybe. This paper explains more about it and suggests that freezing is the first response in a sequence of responses to percieved danger. Freezing is definititly not something that occurs just in animals. Humans get stressed about a lot of things where fighting or running away is not necessary. The sympathetic nervous system still gets stimulated anyway. Part of this is increased blood flow to the muscles, but because the fight or flight never occurs it leads to common stress-related symptoms such as stiff neck or headaches.

LulaPalooza Tue 20-Mar-12 11:55:59


I like questionnaires

Your Aspie score: 168 of 200

No shit, Sherlock

fuzzpig Tue 20-Mar-12 12:38:47

Hello Lula smile

Thank you system! That's really useful info. Don't feel like such a freak now. smile you can get a subscription to B.S., I wonder if it gets posted instead of picking it up! <tempted> I am also addicted to finding puzzle apps on my iPhone, but many of them disappoint. I am really fussy about graphics and user interface so I reject many that aren't perfect in my eyes. If anyone is interested, Marple and Trainyard are two of my favourite geeky iOS games.

Anyway, just had a speech therapy session for DS (2.7). It was mainly catching up, and I mentioned my referral. She took note of that (as well as a few particular behaviours) and has referred him to a paediatrician who will look at his overall development, as well as an audiologist to rule out hearing problems and the family outreach team. Very successful session, she really listened. And I have to admit even though the focus was obviously DS it was nice to be able to bring up the Aspergers thing in person as so far it's mostly been online.

SystemofaDowny Tue 20-Mar-12 13:15:35

Yes they post it to you. I used to have a subscription to a different magazine similar to that one. That was about 10 years ago now and only cost £12 a year.

fuzzpig Tue 20-Mar-12 13:19:04

Awesome grin <takes note> (I actually have a WHS in town where I work but I am lazy)

MarynotBeSarcastic Tue 20-Mar-12 14:55:32

I like Kakuro too smile

fuzzpig Tue 20-Mar-12 16:24:04

AAAAARGH just had a (stupidly easy, but compulsory as I'm an apprentice) maths test and I got annoyed with a couple of ambiguously worded questions. I was sorely tempted to write on the question paper just how poorly worded they were.

Anyway, after working on my OU stuff for a bit I'm going to visit WHSmith and treat meself to a certain publication grin
<ignoring the fact I've got an unfinished issue or 2 already>

I have to say I feel a lot better having told my managers and just generally being more open about things.

SystemofaDowny Tue 20-Mar-12 20:40:27

What are you doing with OU?
I can't imagine feeling better after talking to people because I find it too stressful. I have just had the police here for an hour and I'm exhausted now just from the effort of talking to them.

fuzzpig Wed 21-Mar-12 07:38:36

Oh no, why were the police there? (sorry, am being nosy so ignore me if you don't want to say!) I hope you're feeling better today. I think I feel better because at work I can be myself a bit more. I was talking about how there are two versions of me, and that at work I've felt like I needed to be really cheerful when I'm not. It's exhausting to pretend isn't it. Now that a few people know I can be a bit more honest. I feel safer knowing that if something happens I can tell somebody. I'm also relieved because I've spoken to them and before that I had a massive fear because I didn't know what they thought and how they'd treat me. If I get diagnosed I definitely want my colleagues to know, but I'm not sure if I'll mention it to anyone beforehand. I want to, I think. It's a lovely job and everyone is really nice, it's not a bitchy office type environment that I keep reading about on MN.

With the OU I'm doing an open degree. I didn't want to go to uni even though I got into good ones. Most of it so far has been in maths but me being me, I got upset about not being able to do other subjects that I missed too, so my current course is Child Development, and next is Children's Literature (great for me as I work in a library!). Not sure about my last course yet. Tempted to do a chartership course after graduating, to become a librarian, but that's a few years off. Incidentally my tutor told me there is a lot of support available so I'm going to phone them. Is that a possibility for your studies too? I'm sure they'll be understanding.

I got the puzzle magazine... There were two different issues on sale so I got both. blush

Tell you something weird though. I've been kinder to myself recently, since I now [probably] know what causes all the behaviours I don't like, all the things I hate about myself. BUT it's affecting all the good stuff too. Being intelligent and good at maths and logic is one of the only things I've ever liked about myself, and now I'm thinking that's not even me, that's the AS too because Aspies are usually good at that. I'm looking at everything differently and sometimes now it's a bad thing. Does that make sense?

MarynotBeSarcastic Wed 21-Mar-12 12:29:45

fuzzpig, you're just learning to get to know yourself again. The Aspergers is part of you, just as so many other things are, you don't have to separate them. Not all Aspies are good at Maths. Someone once said to me that they thought that if I could have my son "cured of Aspergers" that i'd take it. But I wouldn't - he would no longer be my son, I wouldn't recognise him. Neither would I recognise myself. Things like being good at maths can make up for the negatives. Remember at school when you could breeze through a bit of maths while everyone else was struggling (well I do). I even came out of my Maths A level exam and said "I really enjoyed that" blush.

MarynotBeSarcastic Wed 21-Mar-12 12:31:32

Am feeling a bit shaky today. Last night a drunk started swearing at me, and I answered him back (because I didn't agree with him). He called me a f**king wh*re and said he was going to come after me! I got in my car and drove off pretty sharpish. People said I should have called the police but I was so shaky I couldn't. I didn't have a good description of him anyway.

fuzzpig Wed 21-Mar-12 13:24:24

Ugh what a nob. Glad you could drive away!

You're right of course - and I'd never change the fact I'm good at maths. I guess I just don't feel like I 'earned' it anymore, if that makes sense. It doesn't help that my parents pretty much defined me by my intelligence as a child - the early reading, the high scores. They know nothing about the rest of me because it didn't matter. I grew up thinking that's all I was, and I'm a real Approval Junkie, it's embarrassing.

When I told them last week about the referral - this being the first time I'd mentioned AS to them - they had a read about it on decent sites like NAS, and they both independently said that they reckoned Aspergers was just another name for Genius. Way to miss the point, eh? sad

MarynotBeSarcastic Wed 21-Mar-12 15:49:04

You earned it by being able to conquer all your other fears and social problems. If its any comfort, the comment I got from my mum was telling me what her friends had said (not that she believed it, but still), that its a madeup condition and it never used to exist angry. Many people with Aspergers are geniuses, doesn't mean we all are though grin

SystemofaDowny Wed 21-Mar-12 20:29:38

They just cam to take a statement from me. Its about something similar to what happened with Mary last night except I know the persona nd its been going on for a long time.

Its good your tutor is being supportive, I don't think I want to tell mine. I think she might see it as an excuse for why I've done so badly this year. If I eve get to study Biomed at university though I will probably have to say something, but I'm sure you need proof from a doctor first and I'm still not totally sure myself I have it really, without having to convince professionals.

I think I can understand what you mean about your parents, I was always classed as the clever one in my family and anything I had a problem with was ignored or blamed on me. For example both me and my brother were bullied at school. For me it was because i was obsessed with buses (I know this is weird) and my brother because he wasn't good at football. He got sympathy though because it wasn't his fault and football was a normal activity but I just got told I should be doing things that other teenage girls do, and was clever enough to realise that, so it was my fault I was bullied. I got bullied for other stuff anyway, even for being good at maths so I don't think there was anything i could do about it really.

I am really worried about getting my results for this year. I have done really badly and I'm close to failing. My mum is going to be really angry because she wanted me to go to university for years and now I've messed up. All I want to do right now is quit and take a year out, then go back when I've sorted my life out more. I don't think I'm going to get that option unfortunately.

fuzzpig Wed 21-Mar-12 21:10:40

You should go to uni for YOU, not your mum. You're an adult right? (sorry I forgot your age)

I know it's not that simple, of course...

SystemofaDowny Wed 21-Mar-12 21:53:47

Yes I'm an adult and I know I should be able to do all the things other adults do but I can't. I doesn't matter how hard I try and pretend to be normal, I am not.

I chose to go to university for myself. I want to learn new things, the qualifications are secondary to me. I have a lot of difficulty with it though, not understanding anything but with expressing my knowledge in writing coherently and with organisation and motivation issues. Its been hard work for me to carry on for the last 3 years with the course due to these problems. I feel like I need to have a break from it now to rest, but nobody can see why I have these problems, they think I am intelligent and this should all be easy, when it just isn't.

fuzzpig Wed 21-Mar-12 23:12:00

I think that shows you should tell them. It doesn't matter that you're not diagnosed yet. You're struggling anyway and they will have seen it before. I really really don't think they will think you're making excuses.

It is hard because people like us have learned to hide everything, the idea of making it visible again is scary. And when you are clever and doing well in school nobody thinks to worry about you, because good grades mean you must be ok. It takes a lot to stick your hand up and say "hey, I need help" when you're used to getting by on your own.

devilinside Thu 22-Mar-12 10:04:23

Hi All, Mary hope you're feeling OK now, and have managed to forget about that drunk (when something horrible happens to me, I obsess about it for days and don't get much sleep)

Do any of you like fiction? I know that, technically we're not supposed to, but it has always been one of my 'escape' mechanisms.

Of course, it has to be clearly and logically written - funnily enough I find some crime and horror authors write in that way. Abstract stuff leaves me cold (can't even get past the first page)

I'm not much good at maths (although, I did get an 'A' when I did my degree foundation, so I guess I can't be that bad) Music is more my thing, I can usually play (piano) and sing things by ear. I'm in a choir and a vocal harmony group, plus I study classical piano.

LulaPalooza Thu 22-Mar-12 11:27:46

I like crime fiction - in particular Michael Connelly.

fuzzpig Thu 22-Mar-12 11:41:53

I really like fiction, mostly modern as I find classics too hard to follow. That always stung as a kid - ridiculously high reading age so encouraged to read more high brow stuff, and I often tried probably to please my parents but failed, so I stuck to too-easy stuff like Famous Five, which became an obsession and an escape.

I don't really 'let' myself read enough - I'm a very all-or-nothing person so if there's other stuff I should be doing, which there usually is, I feel too guilty. It's daft because working in a library I am surrounded by books all day!

devilinside Thu 22-Mar-12 11:50:36

oh, I never read high brow stuff - reading to impress others is a particular hate of mine, fair enough if you genuinely like the book, but I do question NT's people's motives.

Famous Five was my favourite too, as well as 'pony' stores. I love libraries too - one of my favorite places to hang out (that makes me sound really pathetic)

MarynotBeSarcastic Thu 22-Mar-12 16:10:00

Thanks, feeling better now!

I think when you are undiagnosed, you need more support because its so stressful working out whether you want to go for diagnosis and what will happen - fear of the unknown!

I love reading, I used it as escapism when I was in my teens. I am currently re-reading the Hitchhikers Guide books for the umpteenth time. I also like Clive Cussler, Dan Brown, Tom Clancy, John Grisham, the early Patricia Cornwell, to name but a few! When I was younger I liked Ann Rice and Anne McCaffrey.

I like singing too, but I am not in any choir (long story!). My daughter is in the church choir and the cathedral children's choir.

SystemofaDowny Thu 22-Mar-12 19:15:44

I like reading factual books mainly. I am currently reading The Selfish Gene by Richard Dawkins. If I do read fiction it is usually science fiction or fantasy type books. My favourites are Douglas Adams, Philip Pullman and of course Tolkien. I got really obsessed with Lord of the Rings a few years ago and read everything I could by Tolkien and his son or about Middle Earth and learnt how to speak lots of Sindarin. I even got a tattoo written in Tengwar, which is the writing that is written inside the One Ring.

I went to see the counsellor today. I managed to tell her about the problems I have with my academic work. She is sending me for a Dyslexia screening. I have to take an A4 page handwritten about why I think I have Dysylexia. I do not have Dyslexia!

fuzzpig Thu 22-Mar-12 19:19:56

I loved singing as a teen but got out of the habit. I'd like to join a choir one day (too much else to do ATM!)

Today was weird, I feel really spaced out and achy because I'm not sleeping so well. I know the other deputy manager was told what's going on (we decided it was necessary because she is in charge on some of my shifts) so I'm a bit sad that she didn't ask how I was. I know that sounds really needy and pathetic.

fuzzpig Thu 22-Mar-12 19:23:05

WTF system? Why did she say you have dyslexia? I guess because of the processing issues... plus assuming this is someone working where you study they are more attuned to looking out for stuff like that rather than ASD.

Can you write on the bit of paper "I don't think I have dyslexia, I think I am on the autistic spectrum" and give that in instead? (seriously)

SystemofaDowny Thu 22-Mar-12 21:06:24

Is the university counselor, my tutor referred me because when I missed assignment deadlines I had to get a letter from the doctor explaining why. the doctor had put I was depressed and on anti-depressants so she probably though I was suicidal and about to jump out the 6th floor window.

I haven't told her anything about ASD only things about the problems I have with writing and talking related to my course., although she has been asking some other random questions- today she asked if I was a mind reader! I've said I definitely don't think I have dyslexia but I will go to the appointment just so I can get proof. I will be writing that I do not think I have it on the paper and maybe just write down the problems I do have with writing so I don't have to go through the effort of explaining it all again to another person.

fuzzpig Thu 22-Mar-12 21:48:41

I hope they listen to you system and can at least help you go elsewhere to get the help you need. I think it's interesting she asked if you were a mind reader! You've made a big step talking to your counsellor and hopefully that will continue at a pace you're comfortable with. It's so hard being in limbo.

MarynotBeSarcastic Fri 23-Mar-12 08:01:21

Depression is commonly diagnosed for people with Asperger Syndrome. I gave up going to the Drs when I felt low, because I instinctively felt it wasn't depression (this was before I was diagnosed). Not only that, the medication I was put on made me feel weird and zombielike and didn't seem to be working right, even on low doses. Now there seems to be some evidence to suggest that sometimes we need different medication from that generally prescribed. But I prefer other methods like meditation, if I can. Or read a book grin

And fuzzpig, you don't sound needy and pathetic!

Codandchops Fri 23-Mar-12 08:05:31

It's good to find this thread.

I am Mum to a 9 yr old DS who is ASD/ADHD and "not unlike you as a child" according to my Mum.

I have always known I was "different" from other people and have struggled throughout life with friendships etc. I have friends but few who I allow in real close. I find trust very difficult.

My GP won't refer me because she says the diagnosis is immaterial due to me now being in my 40s and having achieved really well in life (I am a nurse, midwife and health visitor with a degree in public health). This does not take away the feelings of difference though.

I suspect ADHD and either Aspergers or autistic traits. I was bullied massively at school because I could not fit in.

SystemofaDowny Fri 23-Mar-12 11:17:11

I am not depressed. I don't feel at all like the way depression is described. I do have some of the symptoms, but they are caused by different things and not decreased amounts of serotonin. Sometimes it is just easier to agree with the doctor so you can get out of the door quicker.

fuzzpig Fri 23-Mar-12 11:30:51

Hi Codandchops smile

It's a shame you didn't get referred, some people on my previous thread said that happens a lot as an adult. Do you want a dx or are you happy knowing 'unofficially'?

fuzzpig Fri 23-Mar-12 11:33:49

I understand system except I always felt I was depressed - because that's what people had told me, and I believed them. When my symptoms first really showed (everything was hidden before) and I started self harming age 14, I was treated for depression because I had just told about abuse that happened as a child. So depression was the obvious answer. Since then I just figured that it must still be depression. And I felt like a total failure because none of the treatments were working.

This is something I've been wondering about recently - the test says I have NT and Aspie traits and I'm now confused

I did get a low group score relate to social phobia, ASC and a high score related to OCD though.

I feel like a fraud if I went to the GP to be referred for testing though confused

MarynotBeSarcastic Fri 23-Mar-12 12:55:23

I can't remember if I said, I was put on tranquillisers (Ativan) when I was about 14, which didn't help, just made me feel more anxious than ever.

I feel completely overwhelmed when things are going badly and fine when things have resolved themselves. My "depression" was caused by the things going badly or confusion or lack of certainty and clarity.

Jareth there is often an overlap between conditions, with certain distinguishing features which "place" you in a diagnosis. They can also co-exist, I would say I was dyspraxic as well as Aspie. Check out the Wrong Planet forums, it might help you figure out where you are.

I really wanted a diagnosis, the uncertainty really got me down, in the time between my son being diagnosed and myself.

Thanks for replying Mary - I'll have a look at the forums when I'm not at work.

I've definitely got traits and the OCD score doesn't surprise me. One thing I've really noticed is that it seems much worse in the last year since coming off citalopram - Only just made that link today blush

Hmm.. interesting.

Codandchops Fri 23-Mar-12 13:35:21

Hi fuzzpig, I think now I am happy that I know unofficially why I struggle at times. It helps me accept myself better for who I am.

Did anyone see the programme "For Better for Worse" where they followed several couple before and after marriage?
One of those couples went on to have 3 children and at least one has ASD/ADHD and once he was diagnosed it opened the Dad's eyes to why HE struggled so much in life with feelings and emotions.

I have long term depression but am coping at the moment.

I am out of work now because it's far easier to meet DS's needs (and my own as I am chaotic) while not working. It means I am facing a year or so on benefits but hey ho! I do have the offer of ad-hoc work which I heard about this week so that's good.

Codandchops Fri 23-Mar-12 13:36:29

I would add that I am also Dyspraxic (or have shades of) - am very clumsy and chaotic. Standing joke at work - finest moment was falling out of a clients house as a health visitor grinblush

fuzzpig Fri 23-Mar-12 15:30:29

Hi Jareth smile don't feel like a fraud! No matter what 'category' you fit into you are welcome here among people who struggle with similar things. This thread is helping me already and I hope it will help others too.

I can relate to both sides of the diagnosis thing - I do feel better already (especially now the shock has worn off a bit), and I can be nicer to myself. I'm understanding the things I do and already that means they don't bother me as much - things like dwelling on what somebody says. I can tell myself "you are only doing this because that's the way your brain works" and it suddenly loses power over me. I am being more open about my feelings because I'm not so embarrassed about them.

OTOH I am really struggling with the not knowing, the worry about the assessment and the fact I would like to be even more open (eg with colleagues as well as my managers) but having a dx to back me up.

SystemofaDowny Fri 23-Mar-12 23:00:07

OK maybe I'm not understanding it properly. One of the symptoms given for depression is 'low mood' I have no idea what this actually means. Low is a word to describe the position of an object. I don't know how it can be used to describe feelings too. It just doesn't make sense to me but maybe that is because I'm not normal.

fuzzpig Sat 24-Mar-12 06:54:38

The reason you don't understand it is because you take words literally smile do you often find yourself not 'getting' jokes? I do. I love shows like Family Guy and Futurama but often in RL I find myself sitting there thinking "WTF is everyone laughing at". I never tell jokes or even funny stories, I just can't do it. I have always been jealous of people having anecdotes to tell. I have none whatsoever. I never know what to say.

I think I am still depressed - certainly feel bad a lot of the time. But it is quite an adjustment to make as I now feel like depression is a symptom - caused by AS and the resulting behaviours that upset me - rather than the cause (ie by brain chemistry or circumstance) of all my problems. It's all gone on its head. It's all very complicated ATM though, as circumstances at home are shit, everything is going wrong at once, and I get upset about that too. I often find myself thinking "why can't we just have something GOOD happen for once".

SystemofaDowny Mon 26-Mar-12 09:07:50

I have got my second try at talking to the doctor this morning. I hope I can do better than last week. I hate not being able to talk to people.

MarynotBeSarcastic Mon 26-Mar-12 10:19:44

SystemofaDowny, hope it goes OK. If you need a bit of time to get it out, then tell the Dr you're finding it hard to explain, and then hopefully they'll be patient with you.

Fuzzpig, I am a very sarcastic person, and I see humour in lots of things, mostly puns and the humour of taking things too literally. (I've given up sarcasm for Lent, hence my MN nickname). Occasionally though I can't tell when people are joking and take what they say seriously, or the other way round, I think someone is joking and they're being serious. Either way can get me into trouble!

I've had a busy weekend, we went to Legoland on Saturday, just me and the kids as DH pulled out at the last minute. Ended up absolutely exhausted and barely able to function, but we still had a good time (spending nearly an hour trying to get out of the car park, due to the gridlocked roads doesn't help my stress levels). Spent Sunday recovering.

fuzzpig Mon 26-Mar-12 10:29:41

Good luck system smile

I had a good weekend too but got in to work today to find out there's a D&V bug doing the rounds. Am now terrified (emetophobe) not least because I am a bridesmaid at my best friend's wedding on Saturday!

SystemofaDowny Mon 26-Mar-12 10:48:44

thank you. I have been trying to plan what to say, but the more I think about it the more worried I get. i have been trying to think what questions she might ask so I can prepare answers, but I really don't know. She said last week she was going to read back through my notes. I can't remember why she said that or if there was a reason for it.

MarynotBeSarcastic Mon 26-Mar-12 11:15:52

I'm not sure you can prepare that much by having answers ready. You can think about why you want the diagnosis and why you think you have Aspergers, but that might be better off written down.

When I saw my Dr, I told her that I thought I had Aspergers, and that the reason was that when my son was diagnosed, I recognised myself in his diagnosis. She didn't ask any more questions, just that she would refer me to a specialist for diagnosis.

SystemofaDowny Mon 26-Mar-12 11:23:42

Unless I plan what to say I usually end up not being able to say anything. even just starting the conversation is really difficult. Random questions that I'm not expecting are the worst thing because I panic about knowing how to answer.

MarynotBeSarcastic Mon 26-Mar-12 12:12:48

I'm the same with questions, and I try really hard to ensure I cover all eventualities. Not very easy though, and I generally panic! I also manage to think up some pretty scary "worst case scenarios", which doesn't help, because I try to think up how to respond to those too!

grammar Mon 26-Mar-12 13:01:08

After 15 years of knowing something wasn't quite right, my daughter is about to be assessed next week. In the meantime, we've both been reading up on it. (She self-diagnosed after reading the dog in the nightime book).

There have been moments of sadness, regret and hilarity in the last week or so. Regret that she wan't diagnosed earlier (we sought out Camhs (child and adolescent mental health) when she was 8 for severe anxiety problems, also she was selectively mute until 7.

I feel upset at all the times I have accused her of being 'obtuse', unkind, egocentric etc..

She feels that alot of the characteristics of Asperger's were, what she thought, her own individuality, ie special interests, Titanic when she was 9, obsession with Japan and Manga art and just her pedantism (need to correct others). The danger is she now feels like a 'syndrome' not an individual. However, it is enormously common; I am hoping we can get her the help with it that she needs to enable her to navigate the future with optimism rather than the sometimes overwhelmingly negative attitudes. She is also depressed, doing her GCSE's and grappling hormones. My heart just goes out to her.

Have any of you read the Tony Attwood Book on Asperger's? It is very 'enlightening'.

Thank you for this thread. At the moment I'm swinging between worrying she will not be alive in 10 years time (the depression is quite bad) and relief that at last we've found our way into a system that could help her.

Best of luck to fuzzpig and system and all others, thinking of you.

fuzzpig Mon 26-Mar-12 15:14:58

I think it's understandable that it's been missed. I can't deny I feel resentful that it was not picked up earlier, but I am coming to terms with it. It is very common for AS to be diagnosed very late because sufferers often learn to hide everything and pass for quirky. And of course awareness even 5 years ago was nowhere near how it is today.

It's funny, that Curious Incident book - I read it when it first came out and remember thinking the character seemed quite normal grin I've reserved the Tony Attwood book too.

At work some colleagues were talking about some possible volunteers with ASDs and they were saying how often they make good volunteers because of liking the order and structure that goes with a library. I had a quiet giggle to myself smile

Thinking of you System, I really hope it's ok today. I expect the doctor was going to look through your files to get some clues about why you were so nervous about talking - that is definitely a good thing! It really sounds like she cares and even if you didn't manage to say what's wrong today, I have a feeling she will soon draw it out of you - just keep trying.

SystemofaDowny Mon 26-Mar-12 17:51:04

It went badly again. The doctor started of by talking about the sunshine outside which I was not prepared for and made me forget what I was going to say as I tried to find something to say about the sun. Then when i was trying to explain about it being difficult for me to talk, I cut my thumb with my nail because I was trying to stop my hands from shaking. I felt like i was going mad and the doctor must agree because she is sending me to see a psychiatrist now and I have to go back to the doctors in 2 weeks.

The curious incident of the dog in the night time is a very good book. I read it a long time ago now but i remember it because he used prime numbers for the chapters. I also remember the bits about food not touching and how he made the map in his head because I do exactly those things too. My mum bought me that book and 2 others about people with autism, George and Sam, and House Rules, and I do wonder why she did sometimes. I have ordered the Tony Attwood book also as it seems to be well recommended. I want to read it as I find the websites very general and lack clear examples. I like to know all the information about any subjectbefore I make any decisions about it and I especially want to do it with this before I decide whether I think I have AS or not.

fuzzpig Mon 26-Mar-12 18:51:33

So you've got a referral to a psychiatrist? That's great. Hopefully they'll be able to figure out what's going on.

Have you tried phoning the NAS helpline? Or possibly you could email them. They sent me an info sheet about AS specifically for GPs. If you asked for that, maybe you could just hand it over. They would understand because they already know you struggle to verbalise things.

SystemofaDowny Mon 26-Mar-12 19:36:11

Yes she is referring me to a psychiatrist. I am really scared about that because if I am like I was today, I think they will lock me up. I know I'm not mad, I am just not normal and like everyone else. Maybe that is what being mad is?

fuzzpig Tue 27-Mar-12 07:32:58

No, you're not mad, you are different (like the rest of us on this thread!) smile

They won't lock you up because you aren't presenting a danger to yourself or others.

Have you got a list of symptoms? Maybe write or print it and take that to show them. Then you won't need to speak until they've read it and they will probably just ask simple questions with short answers.

SystemofaDowny Tue 27-Mar-12 09:21:25

Yes but I worry people will think I am mad because I can't say or explain why I am not. This has happened to me before. I actually hurt myself yesterday in front of the doctor. i made myself bleed which is not good. I didn't mean to do it. I was just trying to stop my hand from shaking. Trying to be normal because sometimes I can't stop my hands from moving on their own when I am talking.

I have got a list, but its not really clear so I think I need to do that again. I also have to write some stuff down for the dyslexia test I'm going to on thursday. I should be doing my course work and not wasting my time on other stuff. The problem I always have is I can't focus to do work on a subject (like my current assignments) I'm not interested in. All I can think about is the stuff that does interest me or I consider important, so I spend my time doing that instead. then I realise there is no time left to do the non-interesting( but actually important) stuff so I end up in trouble but can't explain why I did that.

MarynotBeSarcastic Tue 27-Mar-12 10:08:50

It might be worth considering taking an autism advocate with you. Who can be there to support you and to answer for you if necessary. Speak to the NAS about it. Or it maybe that your Dr refers anyone suspected of having Aspergers to a psychiatrist. I was lucky as there is a specialist centre near me that I could be referred to. If you live in Cambridgeshire, I can recommend ARC in Cambridge.

devilinside Tue 27-Mar-12 12:03:36

Ok, have gp appointment booked for tomorrow. Going to discuss getting help for my social phobia and a possible diagnosis for ASD. very, very nervous.

SystemofaDowny Tue 27-Mar-12 12:04:49

I don't live in Cambridgeshire, I live in Sussex. Taking people with me means it will be harder to talk. No one knows about how I am anyway.

fuzzpig Tue 27-Mar-12 12:15:53

Devil, best of luck. Any chance you can phone the NAS helpline? It might be good to talk things through and clarify your thoughts. Having a list of symptoms was really good too.

devilinside Tue 27-Mar-12 12:32:13

Thanks Fuzzpig. Have an email from my local autistic society with some advice on what to say to the GP.

Contacted them ages ago about my son and happened to mention I thought I was on the spectrum too

MarynotBeSarcastic Tue 27-Mar-12 14:24:15

Agreed, no one knows how you are except you SystemofaDowny. Sometimes it can help, but it was just a suggestion, similarly, it was IF you live in Cambs.

Good luck Devil, let us know how it goes.

fuzzpig Tue 27-Mar-12 15:44:09

I have just been brave. I went to an open classroom thing at school and decided to tell DD's teacher that things aren't so good at home, because I'm worried we aren't keeping up with all her reading etc. So I mentioned all the stuff that's going on including my referral. Teacher was very sympathetic and understanding.

MarynotBeSarcastic Wed 28-Mar-12 07:44:59

Thats really good fuzzpig!

A word of warning on disclosure though, you might like to ask that people don't share the information with others. When I told DS's teacher that I was going for a diagnosis, the whole staffroom knew within a day! They were all sympathetic and a number of them congratulated me on being brave enough to do it, but I still felt a bit hmm. In the words of Julia Roberts in Pretty Woman "I say when, I say who". Its very disconcerting when people you haven't told mention it!

fuzzpig Wed 28-Mar-12 10:44:30

shock that's awful. DD's teacher said she'd tell her colleague as they do a job share. At work I've been told that they won't tell anyone else and I believe them - although TBH I plan on telling people at some point anyway.

My parents are visiting ATM and my mum asked a couple of things about AS symptoms. Then she said "so it hasn't really affected you growing up, then"


To be fair she said the same thing about the sexual assault I suffered regularly at the hands of her brother.

I didn't have a hope in hell of growing up happy did I. I feel like I don't have control over anything in my life (maybe that is why I need lists so much - it's something I can control). Everything is WRONG and I want to stamp my feet and shout that it's not fair!

devilinside Wed 28-Mar-12 11:48:42

Hi all - Have just come back from GP appointment.

She was absolutely determined to write me off as depressed and said most mothers of young children felt the same way.

I didn't back down though, I keep repeating that I didn't think that I was depressed, and that I wanted help for my social phobia and possible ASD.

I asked to be referred for CBT (for the phobia)

I gave her all the email from the autistic society and she wrote down the consultant's name (the person I should be referred to for ASD)

So, for the next month I have to take anti-depressants, which also apparently help with social anxiety. Don't understand really, surely anxiety and depression are at opposite ends of the spectrum? Won't an anti-depressant make me even more anxious

I get the feeling she will refer me to the consultant and for CBT as long as I take these tablets for a month

devilinside Wed 28-Mar-12 11:54:16

Meant to say Fuzzpig - sorry about your childhood sexual assault, and your mum not taking you seriously.

I was never close to my mum, but now I realise she has aspergers too. I can't ever remember her hugging or kissing me. She spent our childhood writing poetry (not that interested in her children at all)

MarynotBeSarcastic Thu 29-Mar-12 07:46:50

There've been other situations too where people have thought it OK to pass on the info, because they thought it was in my best interests - but without telling me they'd done that. I completely lost it on one occasion, its not for them to say but for me surely? Some of it related to some voluntary work I was doing, which I spend a lot of my time on, but involves interacting with people.

devilinside, can't really advise on the medication, only that if you are Autistic, then often the medication doesn't react in the way its supposed to. I always felt like a zombie when on prescribed stuff. But St John's Wort took the edge off my anxiety without affecting my ability to think for myself. Are you happy to wait the month, or will you go back?

Fuzzpig, thats really sad about your mum and her brother. She sounds quite defensive!

MotherPanda Thu 29-Mar-12 08:04:26

Just settling myself in, will be back to chat later, i'm dyspraxic, but i'm less clumsy and more socially nervous. So lovely to read about all you lovely normal people smile

fuzzpig Thu 29-Mar-12 09:05:12

Hi motherpanda smile

Yes I agree about the medication. It's nice to read, actually, that others find the same. I've been on and off various ADs for 11 years, and felt like a failure because they didn't work. I thought it was my fault.

But now I know that maybe my brain is just totally different and the medication was not right for somebody with AS.

I am really, really struggling now. There is too much going on. I want to run away. It's been a long time since I thought about self harm (I only thought about it... didn't do anything) just to have a physical pain to focus on instead of all the stuff in my head.

I want to go to the doctor again and say I can't cope but all they can do is stick me on medication that won't work. Nothing will change the stuff that's going on.

SystemofaDowny Thu 29-Mar-12 18:21:32

I have also tried many medications over the years. No anti-depressants have ever made any positive difference. Only one, Mirtazapine, i can say may have had an effect on me, but it was a negative one. I have also taken anti-psychotic medication, which did have an effect on me but also lots of side-effects and anti-anxiety ( mainly benzodiazepines) which did work but were very addictive as were the sleeping tablets.

I went to my dyslexia screening test today. Totally messed it up. I got really annoyed that there wasn't an option I would choose but the assessor kept telling me to pick any and it didn't matter. I said it did matter and it wouldn't be right to pick a wrong answer. in the end she left and got her manager and he is sending me to see the educational psychologist. I thought they were just for children. The whole thing was so confusing for me, I had to spend 2 hours afterwards sitting in my car doing numbers until I felt better again.

MarynotBeSarcastic Thu 29-Mar-12 19:25:37

Sounds like that no-one is having much fun with Drs at the moment sad.

There are anti-depressants which are recommended for Aspies, but tbh I prefer to use meditation and other stuff to reduce my stress levels or anxiety. I went for CBT but the counsellor told me I already used very advanced coping techniques, so all she did was affirm what I was doing it right. Which didn't really help as it didn't teach me how to deal with meltdowns.

SystemofaDowny Thu 29-Mar-12 19:48:28

which anti-depressants? I don't even think I am depressed even though everyone tells me I am. I am happy when I do numbers or read about endosymbiotic theory. I am not happy when people interupt me doing them or I have to change the ways I do things or have to talk to people. I don't think that counts as depression. Anyway the test today wasn't with the doctor it was at the university. The person I spoke to actually wasn't too bad, easier to speak to than I expected but he did speak for too long and I went into my own world and missed lots of it.

stubbornstains Thu 29-Mar-12 22:03:45

Hello everyone,

This was a good thread to find today. I am depressed at the moment, and finds that it brings out some of the worst of my AS symptoms (no idea if I'm "officially" Aspie, the test says I "most probably" am. Tut tut, grammar....131/200 AS, 91/200 NT, by the way).

It's people, with me. Always people. Can't achieve intimacy, get very very hurt, absolutely CANNOT STAND being let down. When I'm feeling on top of the game, I find I can deploy all the coping strategies and thought patterns I've learnt over the years - I've managed to train myself to even think like a normal person.

But when I'm down, I just can't manage it. My thoughts are just full of rage and bitterness towards people who have let me down. And I just have to hide it all, hide the craziness, in order not to lose friends - yep, the same ones who let me down anyway. I feel I can't ever ever let them know how I feel.

Which is exhausting. sad

fuzzpig Thu 29-Mar-12 22:10:01

Being seen by an ed psych will be a good thing I'm sure - another possible route for the referral you ultimately need.

I would love to know what ADs are good too. I am definitely depressed - it is just that a lot of the cause is the way my brain works.

fuzzpig Thu 29-Mar-12 22:18:13

Welcome, stubbornstains smile

Yes it is extremely exhausting isn't it. I don't really let anyone in anymore - I barely even tell DH how I feel these days. I was struggling at work today and a few people asked if I was ok - in a "you don't look yourself" way rather than a cheery "how're you doing" in the corridor. I managed to say things were getting on top of me. I just wanted to cry but I don't want to break down altogether. Work is the one place where usually I am happy, and I am terrified I will ruin that too.

When I do open up I am hyper aware of what I'm saying and because I can't tell what the other person is thinking - and it often seems like I'm saying something wrong as I get those uncomfortable little laughs from them - I am paranoid I have made myself look a total idiot.

It is definitely harder to act normal when you're depressed. And then it's a vicious cycle isn't it - you find yourself acting wrong, and feeling inferior because you can't be like everyone else... So you get more depressed.

My brain is a cruel mistress.

devilinside Thu 29-Mar-12 22:19:05

The anti-depressants I have been given are Sertraline. Took one earlier and it's made absolutely no diffence to how I am feeling.

I am suffering from insomnia at the moment, but that's because I had two stressful social events last weekend (including a performance with my choir). That kind of change in routine is usually enough to send me over the edge

stubbornstains Thu 29-Mar-12 22:35:39

Yes, fuzzpig, definitely harder to act normal when you're depressed. I know that social interaction often cheers me up, but if I try to force it when I'm really down, my attempts at conversation just come out as total gobbledegook!

But I have forced myself to be braver over the last couple of years - I'm open with people about feeling depressed/ anxious/ whatever. I haven't got any adverse reactions, although sometimes people won't react when I say I'm having a bad day due to depression - i guess they just don't know what to say.

I've even told a couple of friends about the (self diagnosed) AS - I think it might help them to understand why I sometimes behave strangely, or over react to things.

Next step is to try to spell it out to them. I don't know if I can pluck up the courage to say: "When you get all enthusiastic about doing something next week and then change your mind and let me down, it really hurts. Really, really hurts. It's not a great thing to do, but because I have ASD it's absolutely devastating. I just cannot conceive why you wouldn't do what you said you're going to do".

Wow, I feel a lot better just letting that out!

WRT the love of fiction mentioned upthread: I read that female Aspies, as opposed to males , can often immerse themselves in novels. This is certainly true of me; as a child I constantly had my nose in a book.

MotherPanda Fri 30-Mar-12 07:14:18

Sorry i popped my head in the door and ran away, life gets a bit in the way sometimes.

It really is wonderful to hear your stories - i completely understand about being let down by people, it crushes me too.

I was diagnosed as dyspraxic whilst at university - and i was so pleased to understand why i found the world so confusing, but it also made me feel angry at all the teachers on the past who must have and did notice i was unusual during school, but didn't do anything to help.

I was bullied every year of my school life - i was a polite nice person, but over keen, obsessive and talked about things in a way that implied 'i'm cleverer than you' i didn't recognise these faults till i was 16 and started to tone myself down, but bottling up my personality led to a suicidal depression and ADs only made death seem more attractive.

Interestingly, i am on ADs again now but for migraine prevention, as i'm very sensitive to light- i wear green glasses - am nervous about intrusive thoughts coming back but otherwise they seem to be ok.

I am also hyper aware of conversation and being seen- this makes me sweat and feel anxious. What are they thinking? Sometimes i stop talking mid sentence as a defense.

I see muself in a lot of your posts, i love long numbers like pi and e but otherwise am rubbish at maths.

SystemofaDowny Fri 30-Mar-12 09:05:06

I've got sertraline at the moment too. I told the doctor they don't make any difference to me so she has said I can stop taking them again if I want to.

SystemofaDowny Fri 30-Mar-12 09:21:59

MotherPanda I like pi as well. I have memorised it up to the first 20 places so far. I know how to work the rest out after that but I can't do it in my head yet only by writing it down on paper.

I have a question to ask people on here that are sure they have AS. How do you know for certain you have it? I have read about it and a lot of the traits sound like stuff I do, but unless I also read all the symptoms for every other disease or illness too, I can't be 100% certain that is what I have. It would be possible to do that but also very time consuming. I can't cope with 'pretty sure' or 'possibly' or 'quite likely.' I need definite answer yes or no and I won't be able to tell anyone about it or admit it to myself until I have that certainty.

Sorry if this is a weird question, I didn't go to sleep last night and it was what I was thinking about all the time.

TheLightPassenger Fri 30-Mar-12 10:00:10

Hi, think I have spoken a bit on here to Fuzzpig re:adult diagnosis recently. According to the Aspie-quiz, I have both NT and Aspie traits, only coming out above average for dyspraxia (despite having an official DX of OCD hmm). I identify a lot with MotherPanda's descriptions of social difficulties, this is my big problem area. I misread the signals and think people are my friends when they aren't, which leads to hurt and disappointment.

Devil - I have been on here for over 7 years too, my previous names were Mummy/To/Steven and Total/Chaos, maybe we have chatted in other guises? In terms of the ADs, they usually take 2-6 weeks to start kicking in, if they do work for you in terms of reducing depression/anxiety,so it would be too soon to notice improvement, you may get some side effects for first week or so while your body gets used to them.

System - I think it's so individual, whether people take these aspie or AQ quizes and read around the subject, and feel that's sufficient, or they would need a medical official diagnosis. I wouldn't feel comfortable without an official diagnosis saying I was on the spectrum, but I would be OK with identifying as self-DX when asked, say by the aspie quiz website.

TheLightPassenger Fri 30-Mar-12 10:01:21

Fuzz - my DH is massively into buses too, has been since childhood, are you still into it at all?

fuzzpig Fri 30-Mar-12 10:16:19

I'm not sure I've been into buses? You may have the wrong person grin

SystemofaDowny Fri 30-Mar-12 11:18:36

I think you mean me- i was really obsessed about them from the age of 12-15 years but I do still like them now, but mainly the older ones like the Bristol VR and K types and Leyland Nationals that used to be round here at the time. i don't much care about modern buses really but i do like reading the Bus Times and probably still know more about the bus service for this area than the average person does. I kind of had to stop that as my interest as it was getting me into a lot of trouble. I got bullied a lot at school because it wasn't what normal teenage girls were interested in and also I would disappear without telling my family to go on bus rides and see different types. Having to stop it was really horrible. It felt like I was sort of 'lost' and like my interest was a friend that had died. I used to go to my bedroom and cut my arms to make myself stop thinking about it, but kept it secret because I didn't want people to know how much I missed it or laugh at me for doing something not normal again.

devilinside Fri 30-Mar-12 11:24:37

DP did the aspie test and came out with both NT and Aspie traits. In fact my son's ed psych said that adults are usually attracted to others on the spectrum, (hence the increasing numbers of ASDs).

I wondered how the rest of you cope socially? I seem to only be able to make friends with foreigners - my best friends are Swedish and Slovakian (so direct, I love them!)

Does anyone else have problems communicating with British people? Most of the time I just don't understand them, so I keep quiet. I try to talk about the weather, holidays etc, but the friendships never develop.

TheLightPassenger Fri 30-Mar-12 11:32:57

devil - yes, the one good "mummy" friend I have made locally is foreign, and appreciates my directness compared to most Brits. Re:coping situation - I seem to be v marmite - I come over as nervy, intense/serious but genuine. I feel as if I'm boring and have no personality at times, as it's hard for me to open up. So most people run a mile, but others come to appreciate my intelligence. I can't let my guard down easily to show others my sense of humour. I find iv difficult to manage the casual friend/parents at school gate type relationship. I can be v withdrawn tho if not feeling confident so some of this is my fault tbh

fuzzy sorry about the muddle re:buses

system it was difficult enough for DH as a boy to be into buses, so yes, I realise it must have been even tougher for a girl. I'm sorry you had to give it up. I know lots about public transport too, partly out of self-interest as I don't drive (I am far too nervous given combination of OCD and clumsiness), but I do like knowing about how to get places iyswim, and I suppose that sort of system appeals to me. DH I think is more enthusiastic about the older buses, have heard plenty over the years about Leyland Tiger cubs, and Leopards and Bristol VRs etc.

SystemofaDowny Fri 30-Mar-12 11:52:21

Its ok after a while I started collecting beanie babies then pokemon cards and after that I got obsessed with Lord of the Rings. I always have to have something that I'm interested in and in between them i don't feel right. That is how I am right now, I have been obsessed by certain science topics for the last 6 years but I am stating to lose it now. The only difference now to when I was younger is that I keep my interests secret and don't talk to people about them much because I know they think its weird.

TheLightPassenger Fri 30-Mar-12 12:39:30

DH is like that as well, likes to have an interest/goal on the go. Hes very into LOTR. I have a small collection of Hello Kitty beanies. I have dabbled in Pokemon (originally bought a cheap game to see if DS would like it, got into it myself), but more into other JRPGs like Dragonquest. I suppose having these collections/interests has become my version of normal iyswim. DS has got some pokemon cards, but doesn't really know how to play them, so I keep meaning to find the website that teaches you so both me and DS can learn.

stubbornstains Fri 30-Mar-12 13:12:18

System : awww, the buses sound like a lovely thing to be interested in! So sad that people couldn't accept you being into things like you ever go to any rallies?

I agree with the difficulty in communicating with British people. I miss my days in Italy when you could just be much more direct with people- especially in disagreement. A bit of an altercation, the case stated pretty vehemently on both sides, then disagreement over with no grudges borne.

I think it's more of a British thing to not come out with what you think or feel - to be more repressed reserved. Which is just what an Aspie can't cope with...

WRT the diagnosis question: I'm pretty sure I have at least AS traits, but probably won't go for a proper diagnosis (I'm functioning, so I don't think there's much they'd do for me), so I'll probably continue to refer to myself as a "self-diagnosed" Aspie, or "very probably having some AS traits".

Has anybody got any good book recommendations about coping with AS?

SystemofaDowny Fri 30-Mar-12 13:50:24

Pokemon card game is really easy to play, the problem I had was no one would play with me so I had to play against myself. There is a gameboy game where you can play a digital version of it though.

devilinside Fri 30-Mar-12 14:51:21

devil - yes, the one good "mummy" friend I have made locally is foreign, and appreciates my directness compared to most Brits. Re:coping situation - I seem to be v marmite - I come over as nervy, intense/serious but genuine. I feel as if I'm boring and have no personality at times, as it's hard for me to open up. So most people run a mile, but others come to appreciate my intelligence. I can't let my guard down easily to show others my sense of humour. I find iv difficult to manage the casual friend/parents at school gate type relationship. I can be v withdrawn tho if not feeling confident so some of this is my fault tbh

That is exactly how I am. I long to be able to open up to people so they can discover the real me (I am quite funny really, and do make my family laugh). I remember at work, I used to sit there absolutely desperate to join in the conversations, but never quite knowing what to say. I think everyone thought I was boring and painfully shy.

RE: Pokemon cards, I guess most of you are younger than me, these were not around when I was young, although my ASD five year old is into them.

I was always obsessed with computer games though, I used to get in from work and play Tomb Raider for hours and hours.

fuzzpig Fri 30-Mar-12 15:35:46

I was reading these posts thinking "I don't have any special interests/obsessions"

Then I realised I do, but because DH shares many of them, I never saw them as unusual... Though a lot of people react with puzzled looks if I tell them!

As well as the puzzles I mentioned at the start of the thread, I am addicted to various DVDs which I would happily watch over and over again. I've always been like that. It's comforting. I rarely wanted to watch anything new, although now I work at the library and get free rentals my obsession has spread to watching as many new movies as I can!

Wedding is tomorrow, off to hotel tonight. It would be so much easier if I were just a guest but I have to be in front of people as a bridesmaid. It's a huge wedding. I'm scared and feel sick with nerves, and I feel guilty because I'm dreading this when I should be excited for my two best friends.

SystemofaDowny Fri 30-Mar-12 15:41:57

devil: I was well into my 20s when I started collecting pokemon cards, thats part of the problem. It wouldn't have been so unusual for a 7 year old to collect them but slighty strange for a grown woman with no kids at the time.

MotherPanda Fri 30-Mar-12 16:24:08

My dh is dyspraxic - but neither of us knew this till about 8 years after we had met.

I am an obsessive collector of pandas, and it used to be monopoly.

How are you all with the phone? I hate calling people i dont know, or picking up the call, but as dh is actually terrified of the phone it is normally my job. I normally end up talking over the person as i don't know when to stop, or see when they want to start.

I'm a control freak too... How many of my 'bad' traits are down to me being dyspraxic... And how many are just me... Or is it impossible to seperate.

I made a piece of music correlating the digits of pi to musical notes, so i can't tell you the numbers, but i can sing it to you... (i did this before being diagnosed... And music teacher didn't bat an eyelid...)

MotherPanda Fri 30-Mar-12 16:25:53

See - i sound all mememe but i've read every post and feel deeply for each post... I'm sure i have things to say... Just not sure what, apart from 'me too!'

SystemofaDowny Fri 30-Mar-12 17:37:09

I don't like phones either, I avoid using them wherever possible. I am better at it now than I used to be though.

PeppaIsBack Fri 30-Mar-12 17:58:32

Just marking my place here.
I think my DH is somehwre on the AS spectrum and reading all these posts is giving a fantastic insight as to how things are for him (and therefore perhaps a better way for me to relate to him too...)

devilinside Fri 30-Mar-12 22:21:12

I hate talking on the phone too. Hate it when people call me and I have to phone them back. Feel much happier texting or emailing

fuzzpig Fri 30-Mar-12 22:43:41

I don't really like any type of communication like that as I agonise over exactly what to say. Even an RSVP text for a school birthday party is a nightmare - I usually don't do it until way after the date.

Answerphones are terrible too. And forms. Stuff like benefits are beyond me, as the forms make me panic. Thankfully DH is very efficient.

I have to use phones for my job but there are very strict rules so it's like I have an algorithm in my head so I know what to do.

I am happy tonight, just had the pre-wedding dinner with my friends and we were all reminiscing about famous five - I have them all on DVD so we are going to have a famous five party at some point! That kind of party I can cope with I think as there will only be a few people and there is a shared interest.

SystemofaDowny Sat 31-Mar-12 00:02:15

fuzzpig I do exactly the same with text and emails but I still prefer them to phone calls or face to face as at least I do get thinking time even if that is quite a long thinking time. I have the same kind of problems with writing essays and its got so bad this year I'm missing deadlines. I don't think it helps that I'm not interested in the subjects either. That's why I've got referred to learning support for the dyslexia test etc.

TheLightPassenger Sat 31-Mar-12 08:26:10

system/devilThanks for the tip re:Pokemon GBA games, I'll look out for that in second hand shops, you never know. Funnily enough I was never interested in Pokemon or computer games when I was young - because of my dyspraxic tendencies, when I tried them at friends' houses I was v bad at the hand eye coordination with sonic etc. It was as my boy started to get interested that I did really grin. I have been doing Logic Puzzles, Hanije, Kakuro etc puzzles for years, it's calming and reassuring dealing with a simple logical system iyswim.

Somebody asked about helpful books re:AS/ASD. I haven't read that much about it from an adult perspective, as my concern was more with my DS's language delay, but I found Martian in the Playground by Claire Sainsbury useful, as I identified with much of the social difficulties described, and Temple Grandin's recent book is also v good, and Donna Williams' website is v interesting.

Re:phones. I am uncomfortable on the phone, as I never know when to speak and when not to iyswim, the advent of msn etc has deskilled me further! I can cope if I have to work on the phone, as long as it's quite scripted, but really don't enjoy it.

MarynotBeSarcastic Sat 31-Mar-12 09:44:10

Apologies for "disappearing", I was going to find out the name of that AD medication, which I'll still do, then I'll come back and let you know and catch up!

My 10yo DS is Pokemon mad. Also Bakugan as well.

I know its a kids programme, but for those of you who love visual humour, have you discovered the Ooglies? blush I love it!

SystemofaDowny Sat 31-Mar-12 19:33:54

I haven't seen the Ooglies. I've been told I have a very strange sense of humour because I like things like Noel Fielding's Luxury Comedy.

TheLightPassenger Sat 31-Mar-12 19:38:22

yes, my DS has quite the collection of Bakugan too. If it emanates from Japan, DS is likely to be attracted to it. Not erm entirely like me then blush

I am not really visual at all, that's the big difference between me and DS, he is v visually oriented. I do rather like Gigglebiz, tho!

fuzzpig Sun 01-Apr-12 15:34:40

The wedding was amazing! I am really happy it went so well. The only difficult bit was being on a table with people I didn't know. They had a ceilidh which was much better than normal dancing as they tell you what to do! I felt I was among many like minded people - geeky and although not into exactly the same things, we had a similar mindset. I wish I'd got to know them earlier.

I have agreed to host a small party based on a shared interest - Famous Five! That seems achievable even though I don't know all the guests that well.

I have come to accept that I get nervous about big events like this. Bizarrely I was not nervous about my own wedding because it was small. I have another wedding to go to in June so I'll make sure I get travel and accommodation organised much earlier. Now that I know why I feel like this (ie Aspergers = struggling with unpredictability), I can go easier on myself and actually admit it.

PermanentlyOnEdge Mon 02-Apr-12 08:36:57

devil - yes, the one good "mummy" friend I have made locally is foreign, and appreciates my directness compared to most Brits. Re:coping situation - I seem to be v marmite - I come over as nervy, intense/serious but genuine. I feel as if I'm boring and have no personality at times, as it's hard for me to open up. So most people run a mile, but others come to appreciate my intelligence. I can't let my guard down easily to show others my sense of humour. I find iv difficult to manage the casual friend/parents at school gate type relationship. I can be v withdrawn tho if not feeling confident so some of this is my fault tbh

I read this thinking 'hang on, how have you climbed inside my head'? That is a perfect description of me. I think I am glad to have found this thread.

I have just started stumbling around info about ASD as my DS's teacher said at parents evening last week that he was showing 'spectrum markers', which left DP and me a bit shocked. So I started reading websites, and all I've been thinking is 'but isn't this me...?'

So I did the AS test, and got 32.
Did the Aspie test and got 124 for Aspie, 104 for NT.

Now just very unsure about what to do next, for DS, who's only 4, and for me.

Though frankly, if someone said, 'you've got aspergers', the relief would be astounding! Finally something would make sense of my WHOLE LIFE! And I could stop feeling like such a horrible person who doesn't work properly and is so horribly self-absorbed. <thanks mum and dad>

Perhaps if this had been dx'd as a child, my depression and 12 years of therapy and psychiactric care could have been avoided? But why, when I've been seen by so many different MH professionals, in so many different roles, hasn't somebody noticed?? Am I barking up the wrong tree?

MarynotBeSarcastic Mon 02-Apr-12 09:25:29

I like Noel Fielding too, think he is brilliant on Never Mind the Buzzcocks! Not come across Luxury Comedy.

PermanentlyonEdge, the next stage for your son would probably for the school to refer him, either to an Education Psychologist or a Paediatrician, or you can take him to the GP. My son was "picked up" at the age of 3, but nothing was done until he went to school, when it was raised again there, when he was 5. The school have put in supporting mechanisms round him, and he is doing really well, although we do have occasional difficulties as he adjusts to changes around him. Because I understand him so well, I've been able to work with the school to explain "how it is" for an Aspie, and this has helped the school too.

Not sure how old you are, but for a long time Asperger Syndrome was thought to be something that boys have, if recognised in girls it was very rare and only the extreme cases were recognised. Now the professionals are really starting to wake up to the fact that not only do girls have it too, but we present differently, so they should be looking for different markers.

Glad the wedding went well, fuzzpig! smile I love going to Ceilidhs and barn dances when I was younger!

SystemofaDowny Mon 02-Apr-12 09:28:02

I think that too- if I really do have AS, how did nobody notice before? Maybe its because I don't talk to people about most things. I can honestly say that there is not a single person who knows who I really I am. That is why I prefer to be on my own most of the time, so I can just be myself and not have to pretend as it is so exhausting. So I guess its probably my own fault nobody has noticed before.

fuzzpig Mon 02-Apr-12 10:50:59

Though frankly, if someone said, 'you've got aspergers', the relief would be astounding! Finally something would make sense of my WHOLE LIFE! And I could stop feeling like such a horrible person who doesn't work properly and is so horribly self-absorbed. <thanks mum and dad>

Perhaps if this had been dx'd as a child, my depression and 12 years of therapy and psychiactric care could have been avoided? But why, when I've been seen by so many different MH professionals, in so many different roles, hasn't somebody noticed?? Am I barking up the wrong tree?

Ok now you've climbed into my head!

And I don't think it is our fault that nobody noticed, System. I think a big part of the problem is that you develop coping mechanisms and because it is on the high functioning end of the spectrum you can get by as 'quirky' or shy. And of course awareness has only been recent in a mainstream way - the usual idea of autism is so totally different from how we are.

That said I do still feel resentful that not one person ever flagged it up. I'm even wondering if somebody did but my parents ignored it.

SystemofaDowny Mon 02-Apr-12 14:50:09

I do still kind of blame myself though. If I didn't pretend to be normal or avoid people that started to guess I wasn't all this time maybe my life wouldn't be so bad as it is now. I thought it was my fault that I wasn't like other people. It was only a few weeks ago that I read about Aspergers online and started to think maybe that is the reason I am this way.

I know it wasn't even known about when I was a child (early 80s) but I know every parents evening my family were told about how i didn't ever speak at school. This would not be considered normal now but I don't think they were bothered because I was reading the junior school book scheme by age 5 and could do my older sister's ( at secondary school)maths homework by 7.

This weekend my mum was comparing me to my own DC (who were playing very a very noisy game) she said I was so quiet at that age (5-6), I never used to talk while playing, didn't create stories with my toys just liked setting them up in a scene and used to sit for hours doing colouring books but didn't like anyone looking at the pictures or interrupting me. She also reminded me about how I was obsessed with flags when i was small. For christmas when I was 6 I got a globe and I learnt all of the countries, capital cities and their flags. I remember this was the first time I started writing lists- of all the countries in the world, in alphabetical order. I really wasn't normal as a child either.

fuzzpig Mon 02-Apr-12 16:24:50

Sounds like we were pretty similar as kids!

And it's not your fault you 'acted normal' - you had to. I had to. It was that, or being bullied even more.

I think it's because with the intelligence that AS usually brings, it's easy to see how you should be acting, and force yourself into that mould. That's what I feel I did, anyway. That's why a lot of the AS symptoms are playing out in my own mind (as opposed to being obvious to others) and driving me crazy. For instance the repetitions and lists are all in my head, it's buzzing constantly, but it isn't out loud so nobody knows.

SystemofaDowny Mon 02-Apr-12 17:45:04

So how can you convince other people if you are so good at hiding it? I feel like I'm going crazy roght now, but if I said or did half the stuff thats in my head, i would get locked up or lose my kids. Also other people have got used to me like I am now, what if they think I'm lying when I try to explain?

fuzzpig Mon 02-Apr-12 19:20:36

I'm not sure really, but I think I - and you, from what you've said about your doctor appointments - have enough 'visible' symptoms to show that you aren't making it up! Things like eye contact and interrupting can't be hidden.

I guess you just have to give as much detail as possible about the "in your head" stuff. From what I read, it is well understood that adults with AS have often gone without a dx specifically because they get good at hiding things and acting normal - so a specialist would understand that. I think that's why Aspies are prone to depression too, the pressure of trying to act normal puts quite a strain on you, and knowing that you aren't able to function like everyone else doesn't exactly do wonders for your self esteem.

TheLightPassenger Mon 02-Apr-12 19:54:40

I think it's too tempting for parents (and of course there was a lot, lot less awareness of Aspergers ten or twenty years ago) to see the social problems as being part and parcel of being an academic overachiever, as somehow a "gifted" personality. Sweeping over generalisation, but girls tend to not get diagnosed, or misdiagnosed with an eating disorder, as they tend to be less aggressive and more compliant. A cash and knowledge strapped system is more likely to react to challengingly behaved children than withdrawn passive ones IME.

SystemofaDowny - I used to memorize capitals etc, but that was as a young teen, so rather later on than you. I guess it's about the appeal of systems, of something that is consistent, predictable and non-scary, unlike people can be!

fuzzpig Mon 02-Apr-12 21:46:07

Yes I agree, so much importance is placed on academic achievement that people often don't even consider that the clever quiet ones could have a disability.

ThePinkPussycat Mon 02-Apr-12 22:09:05

I am horribly intelligent, but think I have AS and that DF does too. I am now nearly 60, did well academically but have had terrible trouble keeping a job. I have tried twice to do a PhD but find it very hard to be self-directed or to get started unless I have a deadline or am in obsessive mode - then I can't stop. I believe I have ADD as well as AS. Suffered from depression most of my life, ended up with a diagnosis of bi-polar, but psychiatrist now thinks I could be right about myself. Since I started taking this (self) diagnosis into account, I am better at managing myself. But it takes energy and effort, and I need a fair amount of down-time.

There is a thread on Relationships about distinguishing AS from emotional abuse, at least that's what it started out as, but it has developed in a quite interesting way to be about family dynamics where AS is involved, if anyone would care to take a look? I have posted a fair bit on there myself.

SystemofaDowny Mon 02-Apr-12 22:19:25

I think I can understand that. I've been thinking a lot about the dyslexia assessment I had last week today, wonderering if things would have been different if I did that test 16 years ago instead. I might of stayed at school if they had understood me then, instead of wasting half my life and still struggling to get my degree years later.

Also what does an educational psychologist do? I have only heard of them in relation to children before and not really sure why they wanted me to see one.

fuzzpig Mon 02-Apr-12 22:25:01

I always thought EPs were for children too but maybe as they relate to education they are relevant at all levels.

It is very sad isn't it, thinking back on all the wasted potential sad still... Just have to move forwards from here I suppose (easier said than done!)

I had noticed the AS/EA debate thread on active, but I didn't look as it was just when I'd realised about myself and I thought it might be upsetting at a very emotional time. But if it's ok then I will take a look.

ThePinkPussycat Mon 02-Apr-12 23:26:50

The thread is a little troubling at the beginning, but then settles down and is quite constructive smile

PermanentlyOnEdge Tue 03-Apr-12 09:43:11

I was definitely a withdrawn passive over-achiever, and I buried myself in my work, until about 16. I think things were easy to hide as I was in a small girls boarding school in the middle of nowhere, so no boys, no independent social life and massive amounts of rules and routines for 24/7 meant I could hide my oddity. It all fell apart in the sixth form when drugs and boys crept in on the sly, and I couldn't cope as all the boundaries and expectations shifted and got threatening. And at Uni I sank like a stone and lost even my academic lifelines. I feel I've been picking up the pieces, or failing to, ever since.

I can remember my mum mentioning the autistic spectrum when I was early twenties, saying she used to wonder if I was on it when I was small. She worked with adults with learning difficulties, so was unusually clued up for someone in the 1970's. I wish she had followed up on that! Instead I grew up feeling something was terribly wrong with me, that I just didn't 'get' how being friends worked, and just accepted the 'difficult' label my parents gave me.

I so agree that I use my intelligence to mask all my confusion, I still do. There's a voice inside doing a running commentary, going stuff like 'that didn't sound natural, lighten up', 'be quiet now, you're boring them', 'remember to ask about their DC, they asked about yours', 'she said she was poorly, ask if she's better' etc etc and it's just exhausting. I manage for a while, then every few weeks I get overwhelmed and crash and burn, and then hide at home for a while till I feel 'strong' again.

I'm going on a bit. I feel like I'm looking at all my life through this new filter and seeing it all in a way that finally adds up. Does anyone on here have experience of getting a dx as an adult? Is it worth it? As for DS, the school want to 'wait and see' for the time being. He's still so small, and frankly, it could be just that he is a May birthday and hasn't settled well. Wish I knew what was right to do.

PermanentlyOnEdge Tue 03-Apr-12 11:39:53

pinkpussycat thanks for pointing out the other thread. I've just spent all morning reading it. I picked up on some very odd things on the way through, one being about how hard I find it to share a bed with DP, it's like torture, with every movement and breathing noise he makes waking me and winding me up till I explode at him. He sleeps most nights on the sofa.

But it made me think how hard I am to live with. But also how hard he can be. He is an emotional void, just nothing there, no reactions, no sense of connection or of team work, which I desperately want despite my clumsy and stunted ways of trying to initiate it. And then his anger if he feels overloaded, completely disproportionate and horrible for the children to witness. I'm starting to feel my DS's teacher has inadvertantly opened a whole can of worms about all of us. My DD who is only two had already struck me as being different somehow to the rest of us, there's a lightness and happiness to her in herself as a person that seems just missing in the rest of us. Maybe this whole spectrum thing is at the root of it for me, DP and DS. The other thread seemed to suggest AS people find each other. I am just full of questions right now.

MarynotBeSarcastic Tue 03-Apr-12 11:45:22

If its any help, re: how will the Dr diagnose you if you keep things hidden, the Dr does see things which even you aren't aware of. What happened at my diagnosing appointment was that the Dr would say things like "did you know that when you make eye contact, you stare? Normally people would break eye contact occasionally before making contact again". Now I didn't know that, but from that point on, I couldn't help myself and would break eye contact with her occasionally. Then she would say (my DH was sitting behind me and to the left), "When your husband joined in the conversation, you didn't look round and include him", and my thought was "no, well I knew he was there", so she said "well people would generally look round at who was speaking". So from that point onwards I started doing that too.

Its how we learn and adapt to what we know that makes us able to survive.

Dylthan Tue 03-Apr-12 12:17:25

Your Aspie score: 154 of 200
Your neurotypical (non-autistic) score: 41 of 200
You are very likely an Aspie

I got an official diagnosis of aspergers on the 29th of December. I went for a diagnosis because I was really hoping for some help and support but there is nothing in my area. sad

I work for the NHS and my psychiatrist recommended that I spoke to them for help so I got an appointment with occupational health who asked me three questions 1) am I able to do my job? 2) can I do my job well? 3) can I do it in a timely manner? As I answered yes to all three questions he said there is nothing they can do for me. I am very good at my job but I could do with help with the interactions between myself and my colleagues and some other things I find difficult.

I think if they all just knew about me and what the problems are that i face then things will be easier it's certainly worked out that way with my family but occupational health have advised me to keep it quite and so has my line manager. It feels like they think it is something I should be ashamed of but I'm not at all I'm finally proud of who I am it's taken me along time to feel like this.

fuzzpig Tue 03-Apr-12 13:15:38

Why on earth should you keep it quiet? That to me seems hurtful and wrong. I could understand, I think, if you'd not been officially diagnosed.

It's ridiculous to keep it hidden - if it was a physical disability you wouldn't be able to!

I was planning to wait until dx to tell colleagues but I'm not sure I can wait that long - I want to tell a couple of people what's going on. My managers have said it's my decision.

fuzzpig Tue 03-Apr-12 18:21:59

Finding this evening really difficult. Had to come back to work to cover an event.

My brain won't shut up. I hate days like this sad

SystemofaDowny Tue 03-Apr-12 18:40:18

What is your brain saying? A few days ago my brain wouldn't stop saying Olly Bolly Dob Dob Tree. i even ended up saying it a few times. Luckily there was no one around to here me.

TheLightPassenger Tue 03-Apr-12 19:17:14

Dylthan - sorry that the diagnosis hasnt brought you any help or support at work. I think it's a shame you have been advised to hide it. Obviously there's always a risk that people won't understand or don't want to understand, but surely that's your choice.

PermanentlyOnEdge - I wouldn't be inclined to wait and see tbh, as the waiting lists for diagnosis can be ridiculously long, and with current government cannot see this improving any time soon. But if you do wait and see, make sure that, even if it's just in your head, there's a firm review date, rather than letting things drift. Waiting till the end of the year can so easily drift into seeing how he settles into year 1, etc.

MagentaDeWine Tue 03-Apr-12 20:01:43

Name-changed for this as last nickname (plus personal details I might give here) would be identifiable. I don't post much anyway but am a long-term lurker. Have come out of lurking to post here.

Thank you all soooo much for this thread, especially fuzzpig. I also think I probably have Asperger's; but have not sought a formal diagnosis.
RDOS test: Aspie score 120/200 and neurotypical score 94/200, so "traits of both".
AQ score 37.

There are so many things here I can identify with, including some things I hadn't realised might be aspie-associated. Like some of you, I also work for NHS, as well as for a university: clinical/scientific/academic work.

OnEdge: "withdrawn passive over-achiever": yup, is me.

Also the comment about reading books at the dinner table: growing up, I thought this was normal. It was certainly not discouraged (maybe kept me occupied?). Only realised this was regarded as rude as an adult.

Will post further but meantime thanks very much again. It's lovely to know (hope?) that this might be why I feel ill-at-ease so much of the time (other possibilities being, I guess, depression/anxiety) and to hear how others think and feel inside. All suggestions for coping strategies welcome...

SystemofaDowny Tue 03-Apr-12 20:57:00

I found this list of traits for females with Asperger's syndrome

Hope it is useful, a lot of them describe me exactly

System - thank you so much for that link. There are about 3 that are very wrong for me, but the others are terrifyingly spot on.

fuzzpig Tue 03-Apr-12 22:07:58

Dylthan, do you belong to a union? I think it may be worth getting advice as I really think it is wrong that they are telling you to hide who you are.

System, I get random things repeating in my brain too. I will have a look at that link.

The evening went ok in the end, I was put in charge (I have the Safe Key! shock) and probably annoyed people before they left by checking every little detail of what I had to do. It's things like this that make me want to tell people now rather than wait. Everyone is really nice but I worry they are feeling impatient with me or think I'm annoying.

fuzzpig Tue 03-Apr-12 22:14:12

Wow that list was scarily accurate.

ThePinkPussycat Tue 03-Apr-12 22:28:13

Yes, I have known that list for quite a while. The stuff about fantasy novels for example - I spent my childhood in Narnia (in my head) to escape my miserable life!

fuzzpig Tue 03-Apr-12 22:42:36

I really want to say more. I feel like I want to talk all day about this. It is bizarre how something so new (because I only recently discovered I'm an Aspie) can seem so old and familiar... How something so massively life changing, an answer to my whole life, can be so instantly right and comforting.

I really wish I could be normal sometimes. The event was really small and people were just speaking out loud when the panel invited questions. I could never do that. I put my hand up (heart racing) but got missed because somebody else spoke. The panellists were really lovely and actually asked after the event so I still got to ask my question (with much stuttering and blushing). The fact they'd noticed me meant a lot.

I can be kinder to myself now that I understand why I find that hard, but at the same time I now am hyper aware of all these symptoms and I really resent them. I wish I didn't struggle with something that comes so easily to most people.

SystemofaDowny Tue 03-Apr-12 23:09:20

Yes I want to talk about it a lot too at the moment. It is starting to become an obsession for me and I could talk for hours about it if I didn't have such a problem with speaking to people. the truth is that this is the only place I have been able to say any of this stuff, but still it doesn't feel like enough. My head is so full with it all it feels like it about to explode and because I have no way of letting it out, it is making me feel like I'm going mad. I really wish I was normal too.

victorialucas Wed 04-Apr-12 01:05:55

Did that quiz. Got 153 and 58.

fuzzpig Wed 04-Apr-12 07:50:10

I am glad I told my managers (although the other deputy never did mention it) but after conversations I always obsessively repeat them and worry about the things I forgot to say, it feels like a whole other conversation is burning my brain unless I get to have it with someone.

PermanentlyOnEdge Wed 04-Apr-12 12:13:51

System I have just read that list and that is a full on description of me that is eerily accurate. I have wondered whether the standard AS tests are actually fit to diagnose females simply because for so long it was believed to be a male only syndrome. That list was a 100% fit for me, but some of the standard descriptions for AS don't match me anything like so well.

I too am obsessing (typically!) about this most of every day right now. It's reassuring to read of others doing exactly the same.

Dlythan was getting a dx easy? Did you just ask the GP? I'm stressing about whether or not to go and ask. I know my family would just think I'm being stupid to even consider I have this, and I don't know if it matters to have it 'official' or just to leave it at a self-diagnosis.

I'm so glad about this thread!!

I also think you should not be required to keep a diagnosis a secret. It sounds really wrong to me. You have info which would ease your relationships at work so why wouldn't it be shared?

ThePinkPussycat Wed 04-Apr-12 14:18:02

I suppose the thing about work is because of potential stigma and people not understanding the condition sad

fuzzpig Wed 04-Apr-12 19:58:51

But they'll already know her. Maybe I am naive or I just am lucky enough to work with really lovely people but I don't expect people to suddenly hate me because I tell them I'm an Aspie. She shouldn't have to hide who she is, especially when it has taken her so long to find out (sorry - not arguing just feel very angry on Dyl's behalf)

I wanted to ask - as children/teens, did any of you find yourself getting on better with adults than your peers? I've been thinking about this today because there were rowdy teens around at work - I always have got on better with adults, especially teachers. I was a bit of a teachers pet. It was a very strange mix of being more on a par with them (in terms of cultural taste and other things - can't really put my finger on it but I was very mature in some ways) and craving their approval - though the latter was probably more to do with abuse/parent issues than AS.

I still feel like it now though. I want to be on the same level as my bosses and yet to be mothered by them. Fucked up.

ThePinkPussycat Wed 04-Apr-12 20:46:04

Yes, I also got on better with younger children than my peers did, and than I did with my peers. I think it was because I remembered very clearly what it was like to be their age.

Also there's that thing, mentioned in some of the lists, that people with AS tend to see all folk as equal. Hence my difficulties with people in authority who couldn't see I was right my POV grin

I agee fuzzpig but it is a sad truth that there is still a lot of stigma (although I experienced it through my diagnosis of bi-polar, which I think is incorrect), and ignorance. I have started explaining my face blindness to people, and you can see they can't quite believe it.

PermanentlyOnEdge Wed 04-Apr-12 20:48:18

I would say I was like that fuzzpig. Definitely a teachers pet, but in a quiet way. And the need for approval was there. It was a safe arena to engage with others for positive feelings, where with my parents and family all I got was a wall of rejection and negativity about myself as a person. And I recognise the need to be mothered too. For me it always was from people who made me feel safe, who seemed to 'get' me, and I would end up avoiding them because it would all get too intense and messed up in my head!

My DP has agreed that System's description fits me very clearly. But I have also very clearly developed extremely successful strategies to mask it all, so much so that I frequently get to a state of 'flow' and think I've cracked it for good, and then I feel such a failure when I reach overload and have another meltdown. It would be a relief to stop thinking 'that is how you are supposed to be, what's wrong with you?'.

I feel I dance and spin and perform over the abyss. Or like one of those plate-spinners with all the poles. But all I'm trying to keep going is normal stuff no one else gives a second thought to. No wonder I'm always exhausted.

TheLightPassenger Wed 04-Apr-12 20:50:39

hi victoria, how do you feel about the score, does it confirm what you've suspected, are you fussed about getting a diagnosis.

I suppose re:dylth, I think it's fair enough to strongly advise someone to be wary of disclosing, but not to outright forbid.

yes and no to adults - superficially I presented as mature due to my vocab/interests, but if I didn't feel comfortable with peoples parents then I wouldn't talk much to them iyswim. have to say most of my better memories of school are of my favourite teachers.

ThePinkPussycat Wed 04-Apr-12 20:51:01

I can't do things like the housework on 'automatic' - it's like I have to work my own controls, iyswim. Tis tiring.

fuzzpig Wed 04-Apr-12 20:59:42

Yes, nothing is automatic really, especially stuff like self care.

fuzzpig Wed 04-Apr-12 21:02:37

I really feel like I can't cope ATM although I am putting on a really good front at work. A lot of the time I feel happy and then suddenly the fear hits me, briefly, until I'm ok again. I wish I wasn't so good at pretending. I don't even mean to do it.

fuzzpig Thu 05-Apr-12 08:16:36

Been thinking this morning (can't remember exactly why, my brain was doing that flitting-about thing) about how I'm really malleable. Despite being quite set in my ways IYSWIM.

I think I got so good at copying what other people did to fit in that now I can't stop and I don't even know who I am.

MarynotBeSarcastic Thu 05-Apr-12 08:58:14

I still DO get on better with those older than me, and indeed those younger than me (probably because of my inherently childish nature), than my peers. When the kids were younger, we ended up having a mud fight at the park, and some teenagers joined in too. We had a fantastic time, although we ended up completely covered in mud. I remember some parents looking on disapprovingly and some other kids wanting to join in but not being allowed to blush.

As for people treating me differently since diagnosis. Yes, that has happened. I've had my judgement questioned on more than one occasion, and without any other reason other than I am aspie and they thought I'd read the situation incorrectly. Yet to this day, I don't believe I did!

fuzzpig Thu 05-Apr-12 16:57:53

Shit. sad

Have had a voicemail from GP saying they need to discuss my referral. That was it. Phoned back but she was busy and according to receptionist will probably not get back to me until Tuesday. Am gutted. More uncertainty.

I have to admit in a way that I don't care about diagnosis anymore. Maybe I could be somebody who is happy with self diagnosis. But then maybe not. I'm not sure I could tell colleagues, uni etc without having something official to back me up. I might feel guilty.

I am scared that she is phoning me because they rejected her referral. I know it's really hard to get appointments. What if people don't believe me because I don't have an official diagnosis?

I have also been thinking a lot about what some of you have said, about acting normal. It is really exhausting me today but the problem is I don't even mean to do it. I also find that the higher I go when 'acting', the further I fall straight afterwards. I can have a laugh with colleagues and then instantly feel terrible after while the rest of them enjoy the remnants of the fun. The drop between the two is frightening.

fuzzpig Thu 05-Apr-12 22:59:28

Nobody around tonight?

Anyway. GP phoned and it turns out that my referral has been rejected - but because of my location. They only accept referrals from their PCT. So she is only going to refer to the local psychiatrists, who aren't specialists in autism. I'm not sure how I feel about that. I am relieved though as I now don't have to go to the hospital I spent time in. But it means more delay, more time hanging over my head.

Tonight was quite good, had an event as the finale to a festival. Had the usual paranoia about what people thought of me - the community team are quite close knit so I felt like an outsider but I did get a hug as a thank you for working hard (and another from the guest attending the event - she was so nice!)

How do you all cope with hugs? I've read that often Aspies don't like lighter touch and prefer firmer contact. This I can relate to. I like hugs where I know they are coming and I know they are genuine. I think because I prefer a firmer hug I probably sometimes hug a bit too much. It's a shame because it can spoil my enjoyment of the hug.

ThePinkPussycat Thu 05-Apr-12 23:04:37

I can manage hugs, am quite huggy in the first place, if it's someone I don't like I go all tense though, but of course this rarely happens.

Kisses into the air on one or each side of the face? Aaargh! I always end up kissing the actual cheek and realising I've got it wrong!

May I ask what you were in hospital for?

fuzzpig Fri 06-Apr-12 09:21:53

Self harm. I was desperate to be there as home was awful.

MarynotBeSarcastic Fri 06-Apr-12 09:40:52

Thats a shame, fuzzpig, but it may be that the psychiatrists can then refer you on to someone more appropriate.

I like firm hugs, not gentle strokes. I find a duvet very comforting, even in the hottest of weather, because I don't like the light touch of just sleeping under a sheet.

I'm not a great fan of being kissed unless its my husband or children. I really don't like social kissing!

fuzzpig Fri 06-Apr-12 10:29:42

I'm not sure, when the NAS advisor searched for me there were no specialists in my area. Just have to wait and see I suppose. I will tell my manager after Easter that the referral is delayed. They were really nice about having time off for appointments.

It is weird how I feel really crap because of everything going on, and also really good because I have an answer to who I am. I don't seem to be able to feel anything in between. I don't really have anyone to talk to in RL so I'm glad I started this thread.

MarynotBeSarcastic Fri 06-Apr-12 11:42:47

Thats a pretty normal feeling for me too. Life can be a bit of a roller coaster. But it sort of fits in with Aspies seeing things in black/white rather than shades of grey. Things are either right or wrong, good or bad. I'm either happy or sad.

TheLightPassenger Fri 06-Apr-12 11:48:10

I used to hate hugs for my first 20 years or so, but am fine with hugs from DH and DS. I remember at uni a girl touching my leg to get my attention, and that creeped me out! I would be v taken aback to be hugged in a work context, it wouldn't feel right iyswim?

Glad you managed to get through to GP, a shame the PCT is being so restrictive, but sounds like the GP is taking you seriously

fuzzpig Fri 06-Apr-12 12:20:49

Yes from the sound of other MNers I am very lucky that the GP was so understanding. I hope the psychiatrists will be good too. I had quite bad experiences in the past, other than one clinical psychologist who I saw for CBT for a few years. The rest gave me the feeling of not being listened to. It took two tries to even get into hospital too, I nearly died from an overdose and they still turned me away.

It is perhaps strange that I crave hugs a lot of the time - though it is definitely only firm touch. Other touch just confuses or annoys me. It makes sex a bit awkward TBH. blush

SystemofaDowny Fri 06-Apr-12 12:22:34

I also hate hugs or anyone touching me for no reason. I don't hug other people either except my children. Even with them, now they are getting older, it does feel a bit weird, but I would never not hug them/let them hug me just because of how I feel about it.

fuzzpig Fri 06-Apr-12 12:31:06

I think one of the reasons I don't like a 'light' hug is because I don't feel like its genuine - it is hard to tell people's motives and if it is not a decent firm hug I can't tell if they actually mean it.

Yesterday after the work event my senior colleague, who I don't know that well, said thanks for helping so much over the festival, and said "are you a hug person?" so I said yes and that was fine because I knew it was genuine and not awkward.

I think I'm more paranoid about touching other people than I am about them touching me IYSWIM? I would love to be the kind of person who could touch somebody's arm to get their attention or to comfort them but I just can't as I don't know how to tell if they are ok with that.

MarynotBeSarcastic Fri 06-Apr-12 15:40:21

Comforting someone isn't so bad, as most people are just grateful that you are supportive. I'm a church minister (unpaid) and comforting people is what I do regularly. The only time I wasn't sure what to do was when I did a placement in an immigration detention centre and I didn't know if it was OK to hug the men, so I checked (and it was).

fuzzpig Fri 06-Apr-12 20:31:16

Sometimes I hug people because I need to and then think WTF did I do that for. I seem to constantly embarrass myself in one way or another.

Even though I've found work really hard this week I'm still a bit gutted that I won't be back until Tuesday.

The really worrying thing is I'm starting to feel the same emotions about work as I did about school, and That Did Not End Well. Feeling like I need it for people to look after me because I never got that from my parents - physically they were (are) affectionate and tactile, but in all other ways they let me down from the start. Anyway, school was like my saviour - it was my teacher I first told about the abuse, and I always went to her to talk. But I needed it too much. I remember walking up the stairs from the staff room cutting myself with a tiny razor lads I kept with me, just because the teacher didn't have time to see me right there and then. I was so vulnerable and I'm scared of feeling like that again.

Not that I'm not loved and cared for by my DH, but circumstances are tough at home so I have to put a brave face on. We don't even hug much (let alone anything else) because DH is in so much pain. I really don't know what I'd be doing right now if I didn't have my job.

I feel so alone.

MarynotBeSarcastic Sun 08-Apr-12 08:54:58

Is there anything you can do to help with the feelings, other than cut yourself? You are so much stronger now than you were then, even if you don't feel it. You have a lot of strength in your posts.

And you can always share with us...

fuzzpig Sun 08-Apr-12 09:13:02

I don't know what I do tbh. I have only SHd twice since having DD (nearly 5) and both those were very minor.

I hardly ever think about actually doing it, not until recently anyway. Having DCs has changed me a lot. I just sort of avoid the feelings I think.

TheLightPassenger Sun 08-Apr-12 10:07:02

so you feel overattached to your work colleagues, as they bring you stability/support you didn't get at home? I do sympathise, as these sort of relationships are tricky to navigate, and can have a false intensity, as you see people everyday, and they can feel like your closest friends when they possibly aren't. as an interim measure, I agree with Mary about looking for support online, as well as here there are other sides for adult "aspies" which accept self-DX, such as wrong planet and aspies for freedom. In the longer term - I'm not sure - is counselling your thing at all (my experiences with counselling were dreadful) but some people find it useful.

fuzzpig Sun 08-Apr-12 10:56:57

I've been thinking about CBT as I had that in the past. I really want to wait until a dx is made (or not) as I would ideally want to see someone with specific experience of ASDs, rather than somebody who treated my symptoms as though they were all caused by depression.

No idea how long it's all going to take though. Or if it will ever happen.

MarynotBeSarcastic Mon 09-Apr-12 07:55:44

I had CBT, and even with a diagnosis, it doesn't guarantee you someone with ASD experience. Mine didn't, and if I'm being honest the sessions were a waste of time, although she DID confirm that I already used very advanced coping techniques to deal with anxiety, so it was nice in a way I was doing something right.

fuzzpig Mon 09-Apr-12 09:24:04

That makes sense. I think I'd just want to be able to say to the therapist that I have AS, rather than saying that I think I have it and face them saying I was wrong, or that it was just depression. I had some very nasty, arrogant psychiatrists in the past, who hated any sort of input from the patient it seemed.

Granted, I was wrong in what I was saying back then (about what I thought was wrong with me) - but they didn't exactly make any effort to find out what was actually going on. Maybe if they had, instead of bulldozing every suggestion I made and dosing me up on adult amounts of ADs, I would've ended up finding out about AS 10 years ago instead of spending so much time not understanding myself.

I did have one great therapist, the one I saw for years, but I can't envisage being that close to anyone now. And I also wonder why, in spending so much time with me, he didn't figure it (AS) out either.

dentro Mon 09-Apr-12 14:44:22

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

fuzzpig Mon 09-Apr-12 14:52:53


I would love to know what that post said confused

SystemofaDowny Mon 09-Apr-12 15:02:01

I don't know either- can you ask? I have seen that person start a thread about ADHD today but I don't think it is against the rules.

SystemofaDowny Mon 09-Apr-12 15:06:54

sorry I got my words confused there- they had message deleted on a thread that was started by someone else about adhd

devilinside Mon 09-Apr-12 21:50:41

Hi all, haven't been here for a while.

I have been taking the anti-depressants for almost two weeks now, and there's absolutely no change in my mood. The phobia is still with me (as it has been since I was 7) and I don't feel any happier (my GP seems hell bent on diagnosing me with depression)

TheLightPassenger Mon 09-Apr-12 22:17:55

problem is that unless you can pay, you aren't guaranteed anyone with experience of AS/ASD for CBT. I imagine waiting lists are shorter than they used to be, what with this IAPT initiative (push towards getting more people CBT trained as it's short and cheap compared to say psychoanalysis as it's time limited).

devil - 2 weeks may be too soon to notice anything (other than side-effects), it can take up to 6 weeks for SSRIs to start working unfortunately.

fuzzpig Tue 10-Apr-12 08:01:33

There's no way we could afford therapy. I've also heard that even if you do get therapy on NHS, it can be limited, say to 10 sessions. Quite unlike what I got with CAMHS - every week for a few years, then gradually getting sparser until I outgrew it (actually they let me go until I was 19). Maybe 10 sessions would be better than none, but I'm not actually sure - I am scared of what would be brought up and that I'd be left reeling with no support.

It was really good to read upthread that some ADs are often known not to work on Aspies. I might try one of the better ones one day, if there are ones that are known for being more successful. ATM although I'm really struggling (with several circumstantial things that no medication could actually change), I don't want to be on anything right now. Largely thanks to everyone on this thread I am FINALLY starting to get in touch with who I am, learning to understand myself, and I don't want anything blocking that off IYSWIM.

TheLightPassenger Tue 10-Apr-12 09:14:24

CBT is time limited in its nature - when I went private, the guy (v good) was keen to focus me and boot me out - I had 1 lot of CBT sessions and 1 lot of something slightly different (something called schema but isn't particularly relevant to ASD or OCD so I won't go into it here). So if you don't want to risk building up a rapport then being having to finish sessions before you want to, CBT may not be right for you at this point.

ThePinkPussycat Tue 10-Apr-12 10:49:25

If it's any help, paroxatine works for me - I bless the day it was formulated! Just 20 mg a day makes a difference. However, most of what has helped me is work arounds and/or acceptance of my processing foibles - hard to combine with a paid job though, I have found in my case, since I'm either full on, or switched off and struggling, or in down time to recuperate.

MarynotBeSarcastic Tue 10-Apr-12 12:04:30

St John's Wort I've found really good. My CBT was limited to six sessions, however I knew by the second it wasn't really doing me any good.

SystemofaDowny Tue 10-Apr-12 12:33:12

I had some form of counselling at my old doctors surgery once. I don't know what it was called but I was expected to just talk, which is what I always have problems with anyway. So after 2 sessions she said it was pointless me coming back again. this followed on from being forced to attend 'couples counselling' with my ex, where the 2 counselors and my ex basically spent the whole time insulting me and everything I did.

i am currently seeing a counselor at the university, which is actually better than I expected as she does ask me questions which I can usually answer instead of expecting me to just talk. She does say a lot of things that confuse me though, and if she mentions magic wands again I am going to tell her to shut up.

fuzzpig Tue 10-Apr-12 16:04:48

I don't really know what would be good for me. I have a lot to talk about; AS is only a part of it (although a big part right now, as it's all come to the fore) - I have massive issues with my parents that I think I want help with.

I am unsure if I want to go into all right now though, because there is so much else going on and I'm worried if I struggle with difficult therapy I will not cope with everything else. My boss has told me that if I do end up with regular therapy sessions I can have time off though so that's one worry dealt with!

Anyway, glad to be back at work today, as we spent the Easter break doing precisely Nothing. Also I suggested a game night instead of our usual movie night and everyone was really into the idea. I like socialising in that sort of context.

ThePinkPussycat Tue 10-Apr-12 20:01:59

Therapy may help you to process unpleasant things that have happened to you, whether as a result of AS or not.

For changing your own AS behaviour, you have to watch, note, try, mess up, try, mess up a different way, analyse, try again and start to see an improvement. IMHE grin

What you can't change, you just have to fit in with the rest of your life somehow, such as schedule downtime.

fuzzpig Tue 10-Apr-12 20:41:31

I really like the 'downtime' idea, thank you.

I have always felt guilty about the vast amount of time I need just for me. I felt like it was just laziness. For example I kept putting off things as simple as reading novels because of the other stuff I need to do, even though reading actually recharges me. And no matter how energised I feel after a good occasion I can't sustain it, especially if it's involved lots of people and talking, I am just too tired mentally.

I always felt really bad because of that. It's nice to know it isn't unusual smile

MarynotBeSarcastic Wed 11-Apr-12 09:54:34

Me too, I always thought I was lazy because of the little time I spent on things. I think "I burn brightly for a short time". I can do some things which take me a fraction of the time that it takes others, but I do need to schedule rest and "me time" in, on a very frequent basis. I try not to schedule more than 1 stressful thing in a day, for instance, because of the amount of energy it takes out of me.

There is a wonderful description of something that applies to people with ME, which fits in very well with how it is for people on the spectrum too. Worth a read:

fuzzpig Wed 11-Apr-12 10:22:18

Yes! I have read the Spoon Theory before. I related to it then, thinking why the hell do I feel like that when I don't have anything physically wrong with me? Now I know smile

ThePinkPussycat Wed 11-Apr-12 10:59:53

Yes, for me full mode for a short while, completion, rest and, when I've recovered a bit, more active relaxation.

Then the problem is getting going again!

On holiday, I try to alternate Doing Things Days with Pottering Days smile

devilinside Wed 11-Apr-12 13:44:51

I can certainly relate to much of what is being said on here, particularly the 'burning bright' stuff or flashes of genius as I call it (when I can problem solve at the speed of light), alongside the needing plenty of space and downtime.

Also, the fact that I find socialising so stressful, Not so much with my close family as I feel safe with them, but if I have anything organised with friends, (the few that I have!) I spend the entire time hoping it will be cancelled. I don't know if it's the socialising that I find diffucult or the change in routine. I suspect it may be the latter.

And, here goes, this is going to make me sound really bad, but if there's a social occasion that includes alcohol, I find that far less stressful. A couple of drinks to relax me and I feel more able to function in a normal social manner

fuzzpig Wed 11-Apr-12 16:02:04

I can understand that about alcohol TBH, after all lots of NT people find it easier to relax with alcohol!

I do relax after a drink, but I tend not to drink that much generally. I worry about being out of control and not knowing what's going on.

TheLightPassenger Wed 11-Apr-12 18:43:41

snap fuzzpig. when I was younger and struggling in a "proper" professional type job, I realised I could only cope with socialising with colleagues by being drunk, so stopped socialising with most of them, except the odd lunch out.

fuzzpig Wed 11-Apr-12 19:42:58

Evening all. I was just wondering if anyone knows any links about antidepressant use for people with ASDs? Nothing in depth or scientific, just something which maybe confirms that ADs are now understood to often make no difference to Aspies, or can make it worse.

I have been talking to my dad who is going to see the GP about a possible referral. He's also found ADs to be no use, and he functions far less than I do. I have warned him that it might be next to impossible to get referred because he is 62. But I also said to persist about discussing ADs.

devilinside Wed 11-Apr-12 20:49:08

I'd like to know that too. Both my mum and sister (also suspected aspies) claim that anti-depressants have never worked for them.

SystemofaDowny Wed 11-Apr-12 21:06:55

I think i have read somewhere that the older type anti depressants, trycyclics, are more effective than SSRIs. I have definitely read a paper that showed anti depressants did nothing to improve the obbsessive or repetitive traits of autism, but not for any actual depression. They are sometimes used to treat similar symptoms in OCD effectively. The same thing with anxiety, but if the anxiety is caused by alternative thinking rather than chemical imbalance then it is easy to see why anti depressants wouldn't work.

fuzzpig Wed 11-Apr-12 21:10:21

Thanks. I was saying to my dad that I always felt like a failure because even strong medication couldn't help me!

SystemofaDowny Wed 11-Apr-12 21:22:26

The only medication I have ever taken that helped with my obsessiveness and stopped me worrying about things all the time was Risperidone. It isn't an anti depressant though.

SystemofaDowny Wed 11-Apr-12 21:40:41

Also I think that Mirtazapine ( tetracyclic anti depressant) might have also hadsome effect on me but I can't be sure as I was obsessed at that time with some quite dangerous things and wasn't really thinking very clearly. Thinking about it afterwards the risky behaviour could have been aside effect although I can't rule out other influences entirely.

TheLightPassenger Wed 11-Apr-12 23:24:04

I'm not aware of any official research, but I think Temple Grandin has written a bit about this issue re:meds, but more from the POV of different doses being needed (often v small doses) rather than ADs being ineffective per se. Personally I have literally found SSRI medication a lifesaver, usually at the minimum standard dose (which is unusual for OCD, normally a bigger dose would be needed).

MarynotBeSarcastic Thu 12-Apr-12 08:11:43

I was put on Ativan in my teens, and it made me more, not less anxious. At uni, I was put on a low-dose antidepressant (tamazepam), but it left me feeling like a zombie, almost completely unable to think, I was wondering around like a zombie sad. Since then I have avoided prescribed medication for anxiety/depression.

TheLightPassenger Thu 12-Apr-12 09:10:45

shock at Temazepam and Ativan - they aren't even anti-depressants, but both tranquillisers, that should only be used used short-term to avoid building up resistance/dependance. Anti-depressants such as Prozac don't help everyone, but should leave anyone feeling as groggy as meds like you were prescribed, Mary.

MarynotBeSarcastic Thu 12-Apr-12 10:04:26

I was 14 when I was on Ativan. I refused to take them after a week...

SystemofaDowny Thu 12-Apr-12 10:52:18

Yes they are both benzodiazepines. they did used to sometimes be used for depression/anxiety but treat the symptoms rather than the cause compared to other anti depressant medication. The can make you feel better, but only in the same kind of way certain illegal drugs can also make you feel better in the short term. Also they are addictive due to the body building a tolerance to them quite quickly and the withdrawl can be worse than the original symptoms.

fuzzpig Thu 12-Apr-12 12:23:11

My AD history:

Age 14, which was when I was first dx as depressed after revealing abuse - on sertraline, SSRI (which is also used for OCD in children)

Soon after - switched long term to venlafaxine (SSNRI). Ended up on highest adult dose and still took OD which nearly killed me.

18ish - something beginning with M I think?!

20 - PND (though probably caused by AS, things like feeling a failure because I couldn't handle mum and baby groups! If only I'd known that I had good reason) - Lofepramine

23 - PND after 2nd baby - back to Sertraline due to BFing.

All of them have made sod all difference really. But I stuck with them because I thought that's what I was supposed to do.

SystemofaDowny Thu 12-Apr-12 13:55:06

These are the ones I have taken:

Mainly without much effect. Also I have been prescribed antipsychotics:
And for anxiety:
And sleeping tablets

the sleeping tablets worked very well but were addictive and when I stopped them, I had worse sleep than I did before I started.

fuzzpig Thu 12-Apr-12 15:18:14

I've taken sleeping tablets before though I can't remember which ones. I didn't like them though as they made me so groggy. I sleep quite deeply now unless I wake up in the small hours when I sometimes I can't get back to sleep for hours.

I get worried about sleeping even more deeply - DH is wonderful and normally sees to the DCs at night now because I work, but I am scared I wouldn't wake up if I needed to.

SystemofaDowny Thu 12-Apr-12 15:31:35

I haven't taken them since having children and I wouldn't again as i don't think they are worth it in the long run.One of those sleeping talets (zopiclone) was very strange. I had to be laying down in bed before I took it because it would work all of a sudden( no sleepy feeling first) and I would just go to sleep where I was. When I first started taking it I would wake up after having slept all night on the floor and once I fell asleep while stood up in the kitchen and had to be taken to bed by my boyfriend.
I have always been a bad sleeper, my mum says i didn't sleep right through the night until after I had started school. i can remember after I learnt to read i would just lay in bed all night reading until morning and I still quite often will have nights where I don't go to bed but it is just normal for me now.

fuzzpig Thu 12-Apr-12 21:54:20

I feel a bit down this evening... Work was fun but after yet another awkward laugh in the staff room (where I'd said something stupid) I find myself wishing I was NORMAL. I am glad I have an explanation for why I keep embarrassing myself but knowing that it's AS that makes me so socially useless, rather than depression as I'd always thought, is sad because I can't fix it. Depression can be cured - I always held on to the thought of being ok one day, happy even! But AS is forever. I hate that. It's like I have a life sentence of being how I am, instead of having the chance of being ok someday.

ThePinkPussycat Thu 12-Apr-12 22:54:33

Do you feel confident enough to share what you said and its context? And any post-utterance analysis you have about the incident? I am a trained conversation analyst (one of my many unmarketable skills) and have used it on myself with good results. It has taken a long time, but at nearly 60 I have managed to find workarounds for nearly everything - except for my tendency to talk far too loud when it's something important grin

Or at least I can, after all these years, get out of any conversational scrapes with good(ish) grace and minimum embarrassment...

fuzzpig Fri 13-Apr-12 07:25:42

Colleague was texting somebody and had the keypad tones on so she apologised for being loud. I started waffling about how the numbers make music because all the numbers have different notes and how I make tunes in my head when I'm doing the phoning blush

Cue the weird looks and nervous laughter. I knew it was crazy but I couldn't stop!

They do though... When I do the phoning I automatically him along (in my head) to the numbers because they have a unique sound. Each column of numbers (1,4,7 etc) has the same main note but each row has the same bottom note which creates a different harmony with the main notes. Mostly I dial 7 numbers at a time as we don't need the dialling code so it makes nice little tunes...

fuzzpig Fri 13-Apr-12 10:36:58

I have spent the last hour crying to my manager. Fuck.

ThePinkPussycat Fri 13-Apr-12 11:09:56

First, that is so cool about the ring tones. I am not musical at all envy - but I used to make words out of numbers on calculators (which was actually widely done by NT people) - however, I do notice ring tone patterns but don't understand the theory like you do.

Secondly, you were responding to her apologising, and trying to smooth things for her by waffling on (I think?), that was a nice thing to do smile

Was your manager understanding during your hour of crying?

fuzzpig Fri 13-Apr-12 12:27:59

Yes, very. Basically I had a very small criticism (in fact it wasn't even that, but this other member of staff is quite brusque which I find difficult at times) and I find that sort of thing really hard.

So I cried. Then I kept crying because I was embarrassed. Then I kept crying because I was angry at myself for not keeping it together.

My manager was lovely and let me waffle about everything. I feel quite vulnerable now though.

ThePinkPussycat Fri 13-Apr-12 12:39:04

I have been through the very same thing, but without the understanding manager.

Need a kip now, but will be back when I'm refreshed.

MarynotBeSarcastic Fri 13-Apr-12 15:28:51

Its a time of adjustment, you're going to be vulnerable. Its good that your manager is being supportive. Its a period of adjustment for ALL of you! smile

I had a lie in this morning - felt a lot better for it! I've been helping my Aspie son with his literacy homework. It started badly (we attempted it a couple of days ago). "Pick a section of your favourite book". He is mad about Harry Potter atm, couldn't pick which one was his favourite. Major meltdown. 2 days later, it was me saying "OK, they're all your favourites, which one is it easiest for you to be able to complete the exercise on? I think it will be Goblet of Fire, because I know you can draw dragons, and one of the tasks require you to draw a scene from the book". We did nearly all the homework, had another minor meltdown at "which character would you like to be and why", until I told him "if you don't want to be any of them, you don't have to be, and the reason why is that it would be too scary". Final task "write a diary entry as if you were one of the characters". At which point we gave up. ARGH!

ThePinkPussycat Fri 13-Apr-12 16:26:41

Ha at DS's difficulty in deciding - I recognise this. A is better than B in some ways, but there again B is better than C in others, oh and C is better than A in yet other ways. It's called intransitivity, and shows the Aspie understanding that life is not so straightforward as some people seem to think...

Fuzzpig if you are like me, you may overempathise with people who apologise, thinking they are more embarrassed than they are - just because we so often have to apologise for ourselves. Hence we feel we have to say something to make them feel better - but actually to them it was no big deal. Does that make any sort of sense?

fuzzpig Fri 13-Apr-12 17:30:31

Um, I think that makes sense, although I think in this instance I just wanted to share my enjoyment of the music blush

Can totally relate to the indecisiveness of homework! Argh indeed!

Finally on way home from work, eyes still stinging from this morning. Managed to get through, just about. Keep welling up slightly at the thought of how bare I laid myself (IYSWIM) and how right now I can't see myself ever feeling differently. I really wanted to run away and never go back to the job I love. I shouldn't have crossed that line. And TBH I am starting to see why suicide rates are so high for Aspies. Giving up is a very attractive prospect when everything is so bloody hard (though a lot of it ATM is due to other circumstances). PMT doesn't help - it has got much worse recently.

I feel like I should go to the GP but what can they do other than stick me on ADs?

On a more positive note I told one colleague that I have AS and I am very proud of that. She is new (though I'd met her at county-wide training sessions before) and I was supervising her doing something new, we were chatting about customers etc and she said I don't seem like I am rubbish with people like I'd said. So I thought I may as well say it.

SystemofaDowny Fri 13-Apr-12 17:36:24

Mary there is no way I would have been able to do your DS's homework either. I am bad at making decisions too and those tasks invoveled way too much imagination and pretending for me. It is the kind of work that I would have just not done and not been able to explain why to the teaches either. Luckily because the work I did do was of a good standard the teachers didn't seem to care if I sometimes didn't do stuff I think.

I got my appointment today to see the educational psychologist. Its on wednesday 25th and appears to be in somebody's house! They still haven't told me what will happen at it though except she will write a report afterwards. That means I won't be able to stop thinking about it now until then and I am supposed to be revising for exams next week.

ThePinkPussycat Fri 13-Apr-12 22:00:49

Generally speaking us female AS folk are better with people than blokes w AS, I think it's supposed to be with our female brains being wired more for social interaction, plus learning the skills to relate because, well, we want to relate to others.

fuzzpig Fri 13-Apr-12 22:06:23

I do, I am desperate to, I wish I could socialise like normal people. Whereas DH is quite happy not having friends or nights out etc.

I'm thinking of buying the Tony Attwood book but it's £10+. Getting sick of waiting for it at the library [impatient emoticon]

ThePinkPussycat Sat 14-Apr-12 01:27:48

Id have no problem with the pretending and imagination. Perhaps DS should have claimed the Harry Potter books were really one book in 7 parts grin

MarynotBeSarcastic Sat 14-Apr-12 09:56:33

I've got the Tony Attwood book, but don't really look at it much. I've ordered the Rudy Simone book from the library as I thought it might be more relevant.

I occasionally get myself into trouble when pretending. To pretend, I convince myself something is real and then I can function pretty well, and very convincingly. This is fine until I get into difficulties distinguishing reality from the role play that I am in.

MarynotBeSarcastic Sat 14-Apr-12 09:56:58

grin at Harry Potter book being 1 book in 7 parts grin

ThePinkPussycat Sat 14-Apr-12 10:48:21

As I am a hopeless liar (I mean, no good at it, not that I lie all the time!) if I have to lie about something, I pretend in advance to myself that the lie is real, then I am more convincing in my lies, as I myself am half convinced they are true!

MarynotBeSarcastic Sat 14-Apr-12 19:41:36

If I need to lie, I phrase my lie in a way that its ambiguous and technically not lying (at least in my mind) or just say nothing.

fuzzpig Sun 15-Apr-12 20:08:41

How is everyone?

I am dreading work tomorrow.

SystemofaDowny Sun 15-Apr-12 23:15:40

Not very good. I have exams this week that I haven't revised for yet. I have loads of coursework to do still and have missed 3 lots of other coursework so far this year that I need to somehow catch up on as well if its not already too late. Also am supposed to have organised my work placement for the week after and I haven't because I really don't want to go to it. then to make everything 100 times worse, i had a message left on my answerphone on friday from a social worker asking me to call her back and that is never good news.

My life is so messed up right now and I really can't see how to fix it all. i am worrying too much so I can't even think about how. I wish I could press stop on it all just so I can have some peace and have a chance to think on my own without all the interuptions all the time.

ThePinkPussycat Sun 15-Apr-12 23:23:05

System have you got a list?

What I find helps is to plan the next hour, and only the next hour - 3 different tasks, worked on for 15 min, then a 15 min rest. Repeat as necessary. If you can bear it, schedule the worst first (the phone call?)

fuzzpig twill be ok, your manager is sympathetic, and you now know to keep comments to the very banal sad though that is. I have these great whacky thoughts that I think will be interesting to others, and give me something to input to the conversation, but I learned not to do this at work. Although sometimes it's worth the risk, as you may come across someone who 'gets it.' May I ask what your work is?

fuzzpig Mon 16-Apr-12 13:35:02

I work in a library smile great job for me, people are lovely though it's a bit of a minefield working in a team. I've never really done that before.

In a way it feels like being back at school again, now that I'm full time - being around the same people every day and having no space. I've started to relish the tasks I do alone, but the whole thing is taking its toll, I was in an awful state yesterday and DH even asked me if I wanted to quit! I don't - I love the job and it has good potential long term - and anyway DH physically can't work now. It's just been more difficult than I expected to go full time.

ThePinkPussycat Mon 16-Apr-12 13:48:46

No team player, me grin!! Although I like having colleagues to talk to and share ideas about how to do the work better.

fuzzpig you may not want to do this, but as you have a diagnosis and it's shared with management, a small amount of reasonable adjustments may be in order (and is your legal right, if it is possible for your employers) - perhaps a bit of time out during the working day if you need to wind down from overwhelm? Could be a problem if your colleagues don't know about your condition, though.

fuzzpig Mon 16-Apr-12 16:29:25

I've thought about that. In fact my managers have been brilliant, and have asked what they can do to help.

I printed off some info specifically for employers and actually a lot of their suggestions are already done! Because it is a big library there is a heavily structured timetable with different tasks every hour or so. It tends to alternate between customer facing, and behind-the-scenes stuff. This is perfect for me - smaller libraries have no structure and when I did some cover at one it was awful. There was also no 'escape' IYSWIM - in this library we have security doors with a massive staff room, workrooms, toilets, showers etc - it's fantastic.

MaryBS Wed 18-Apr-12 10:07:35

Today I feel stupid and tearful. I was given something to read last night, and its sort of important to be able to read and understand it, but it doesn't make sense and says weird stuff that confuses. It says ridiculous things like "being deep in our DNA as Christians", which is wrong. So I feel stupid. Should I say something? Its written by the bishop of my diocese. I could contact him, but would he respond appropriately and sensitively, I wonder? Or will I just get fobbed off and feel worse than before?

fuzzpig Wed 18-Apr-12 10:41:18

I'm not sure what to suggest. Certainly I get annoyed with nonsensical sentences etc. But I absolutely cannot get on with religion, my brain won't agree with it (not in a nasty way, I obviously respect others' beliefs, I just can't believe it myself)

What also annoys me is people not finishing their sentences... I usually know what they're going to say but I HATE that they don't say it!

ThePinkPussycat Wed 18-Apr-12 10:48:10

Sounds like the bishop is being metaphorical, can you sort of 'get' what he means and rephrase it to yourself, mary?

eg being in deep in our psyche as Christians

Re the sentence finishing. DF quite often doesn't finish his, he likes the other person to do it to show they understand, and I am a bit the same - we both have AS. But it annoys DD that I don't finish sentences sometimes.

MaryBS Wed 18-Apr-12 11:34:17

The problem for me is that the metaphors don't make sense. I use a lot of metaphors myself. But these are like "square metaphors in a round hole" smile

ThePinkPussycat Wed 18-Apr-12 11:53:56

Am happy to provide a translation service if you want! Am having a very lazy day, it could be fun...

devilinside Wed 18-Apr-12 12:01:21

Mary, I'd just try and laugh at the ridiculous language? That's what DP and I do.

I used to work in marketing/PR where that kind of nonsensical jargon was rife. Most of it went over my head (metaphor alert wink )

MaryBS Wed 18-Apr-12 12:20:50

Thanks. I know what he is getting and and the message he is trying to get across, I am just cross about the way he has worded it. If you go to this website:, search for "imagining the future", and click on the "Download the imagining the future document" link, which is the second on the list. This is a lot easier to read than the booklet that has been published, which I was given, (which was printed with TWENTY characters to an inch!)

I take some comfort from the fact that my vicar finds it impossible to connect with what he is saying as well!

fuzzpig Wed 18-Apr-12 13:46:33

Mixed metaphors (if I'm understanding the term correctly) are bad. Generally I love language, I enjoy a good simile - but sometimes they don't work and I hate that.

It wrecks reading for me sometimes, I just pull the sentences apart instead of enjoying them. I read a sentence (often dialogue) and then replay it in my head the way I think it should've been written.

devilinside Wed 18-Apr-12 14:13:21

I just had to google mixed metaphors blush. If someone spoke like that to me, I'd have to punch them grin

ThePinkPussycat Wed 18-Apr-12 15:56:11

I have read a lot of NHS mental health bumpf in the course of my work, and having downloaded that file, I am very much reminded of it.

Can't help but ask you mary, are you cross-shaped? And do you aspire to be at the centre, which isn't at the centre, but at the edge?

The NHS documents always had a load of waffle a number of paragraphs saying how service users views should be respected etc etc, stuff you would thing didn't need saying again for the umpteenth time and wasting umpteen bits of paper across the land. The good Bishop seems to be saying a lot of things that don't need saying are part of Christianity, and, like the NHS docs, talking in generalities rather than specifics (mind you, I only read to p5). I think he could have said what he wanted to say on 2 sides of A4.

MaryBS Wed 18-Apr-12 16:52:42

No, I'm person shaped. And I'd rather be an Easter person. And I'm both at the centre and on the edge, but for differing reasons. Funny that you should mention mental health as our bishop has had a lot to say on the subject.

Our vicar reckons he could have said all that in 1 page of A4! grin

SystemofaDowny Wed 18-Apr-12 17:40:32

"being deep in our DNA as Christians"

"are you cross-shaped? And do you aspire to be at the centre, which isn't at the centre, but at the edge?"

either these exams have burnt out my brain cells or I have woken up on a different planet today

ThePinkPussycat Wed 18-Apr-12 17:48:21

To be fair, what I wrote was merely based on the original, do have a look, it's worth it smile

ThePinkPussycat Wed 18-Apr-12 17:49:39

And how's it going, system?

I must take my own advice to you upthread, have been on MN most of today!

SystemofaDowny Wed 18-Apr-12 18:56:58

The exams? Its my last one tomorrow. Microbiology and Biotechnology, the subject I hate most. Once that is over then I will start on something else as I can only think about one thing at a time. It probably should be my research project as its due on 27th of april, but so far I don't even know what topic it will be about.

ValiumQueen Wed 18-Apr-12 20:54:43

Greetings - I have not read the thread as I am not feeling too good at the moment, so could I please check is this thread just for folk on Autistic Spectrum, or for those who have a loved one on the Spectrum?

DB has recently been diagnosed with Aspergers in his mid 40s, and is currently suicidal. He has been suicidal before some 8 years ago, and his current feelings are not 'just' because of the recent diagnosis.

many thanks

ThePinkPussycat Wed 18-Apr-12 23:42:23

Hi valium I'm sure we'd be happy to help in any way we can. There is another fairly recent thread somewhere which might also help, I'll look for it (might not be tonight tho) and post a link. - Actually I've already posted a link nearish the top of this one.

My AS is undiagnosed, but I am sure, and have even convinced my psychiatrist. My difficulty in fitting in made me v depressed for years, I would also go into overdrive on occasion, hence had a diagnosis of bi-polar. I have been v severely depressed on a number of occasions, to the point where I could see no hope, I had suicidal ideas but knew I wouldn't act on them. My lesser depression, I believe, was caused by ADD - no motivation, though I knew what I should be doing, this led to frustration, and then depression. Also working in regular paid employment has always led to me being depressed...

Any of these ring bells for your DB? Anyone else in your family show traits? (My DF has it I'm sure, which added an extra layer of unhelpful complication, and DB has definite traits)

MaryBS Thu 19-Apr-12 08:42:12

Hope the exams go well system.

Valium it may be worth checking out the "Wrong Planet" website, there's a lot of help and info on there, plus a very big Aspie community with forums. I've learned to deal with feelings of depression, and any suicidal type feelings have been because of hormones (just before a period, and now "in hand"). Hope he is getting some decent help.

ValiumQueen Thu 19-Apr-12 09:18:47

Thank you ladies.

My brother has always been troubled, and I thought he was Bi-Polar. He sought his own diagnosis, and feels better for knowing why he has struggled. He thinks Dad is also on Spectrum. It would explain a lot, but at age 79 there is no point investigating.

I will come back when I am feeling a bit stronger, VQ

fuzzpig Thu 19-Apr-12 09:33:44

Hi Valium smile

Mary may I ask how you sorted out the period-related depression? Mine gets massively worse before. I'm wondering about trying birth control, but I worry about side effects.

MaryBS Thu 19-Apr-12 11:48:17

I had an IUS (Mirena) fitted. Have had no side-effects, only benefits. Gone from dreadful PMS to no PMS and my periods are scarce and very light, when they were incredibly heavy. Slightly traumatic actually having it fitted, but apart from that its been marvellous!

fuzzpig Thu 19-Apr-12 12:08:22

Oh damn sad there is no way I could have that.

I have been prescribed diazepam just for a smear test which I still haven't dared book yet

MaryBS Thu 19-Apr-12 12:11:01

You could have it done at the same time as a smear test, maybe (although that may not be possible as you might need the results of the smear before they fit the IUS)? I know its a horrible procedure, and I can't pretend it is pleasant, but then neither is PMS and heavy bleeding. It really was worth it for me!

only4tonight Thu 19-Apr-12 12:32:21

Hi and thanks Mary for sending me to this thread.

This morning I have done both an aq test and the test at the start of this thread. Seeing "very likely an aspie" written twice about ones self in a very sort period of time is kind of difficult to take.

I am, I think, pretty well functioning. So I don't feel like I need a formal diagnosis, but I do feel a bit of a fraud being here.

A few weeks ago dds playgroup pointed out some observations about her communication skills, and her defiance against potty training (she is very nearly 3). Since then I have been trying to help her with her communication skills but it seems to come less naturally to her than to me. Responding to her name, looking at people when they talk, answering questions etc are all areas that she finds hard.

On the one hand I feel bad trying to push her to behave "normally" but on the other primary school was rubbish for me and I really don't want her to have to go through that.

Any advice would be gratefully received.


SystemofaDowny Thu 19-Apr-12 12:48:13

I failed today's exam. I couldn't even answer the whole of question 1. The others were even worse so I just left early. Now trying to work out what to do next as this means I have almost certainly failed the whole year now.

Fuzzpig do you think you could manage having a subdermal contraceptive implant? It has almost the same affects as the mirena coil but goes in your arm instead.

ThePinkPussycat Thu 19-Apr-12 13:05:27

Oh system sad - is there a possibility of a resit?

DD (now 20) was fine at home when she was little, though was (and still is) a stubborn little thing. At nursery she wouldn't speak, in the infants she played on her own, but she changed and now has a wide social life and a career. Her own account is that she just watched from the edges till she decided she could do it.

I was worried she would have a miserable time at primary school like I did, but for her it turned out not to be like that.

So maybe just give it a bit longer? And post for support?

SystemofaDowny Thu 19-Apr-12 14:15:04

yes the course leader would probably let me resit in the summer holidays, which would be fine if it was just that exam I had to think about, but the chances are I haven't done very well in some of the other exams too. Also as I have not completed 3 lots of coursework this year I would need to be retaking those over the holidays too if I wanted to pass. Even then its dependent on the very unlikely event that I get the last 2 lots of coursework finished in the next 2 weeks. Trying to do all of that work over the holidays with the kids at home would make me have a breakdown i think, I've come close to that trying( and failing) to do it all in the last 7 months so I can't see how it is possible in just 6 weeks.

I've been trying to find out if I can just repeat the whole year next year instead, but I'm not sure whether I would get funding for it. I didn't really want to do that because I wanted to do year 2 of a different course ( because I find these subjects very boring) but I don't think I will get accepted with my terrible grades. Also I'm really not looking forward to explaining all this to my mum, but she will find out anyway so I have to. The only thing I am thinking might be positive is if the educational psychologist I'm seeing next week can suggest anything that will make the work easier for me, but at the moment I can't think what that would be.

MaryBS Thu 19-Apr-12 14:43:04

sad system, I hope the Ed Psych is able to help.

fuzzpig Thu 19-Apr-12 14:51:38

Shit system I'm sorry the exams have gone badly sad I hope the ed psych is helpful. I really wish you didn't feel so worried about what your mum thinks. From what you've posted before, she really doesn't seem very nice. There is so much more to you than academic achievement, but she doesn't seem bothered about that. Same with my parents. TBH I think that is a big factor in why I never got help with AS as a child - they had the child genius they wanted, so who cares if I was unhappy? I have only just started to stop myself craving their approval but believe me I know how hard it is. What helped was thinking about my own children. I do NOT want to be the mum who puts pressure on the DCs to achieve, who pushes them so far into academia that they never get to explore anything else. My mum made a throwaway comment about DD not reading yet (she wasn't even 4 FFS!) and that made me see her true colours at last. I don't know, is there somebody who can tell your mum for you? I can't remember if you have a DP/H?

Thanks for the implant suggestion BTW - that was the one I've been pondering. Something in my arm would be fine.

TheLightPassenger Sun 22-Apr-12 20:34:16

hello and welcome only4tonight. don't worry about feeling like a fraud, most of the posters on here don't have a DX (yet at any rate)

re:your DD, I would take her to GP, see if they would refer her for a hearing test, could be something like glue ear meaning she's finding it hard to respond to others, and once hearing problems are ruled out, possibly look at getting her on the list for speech therapy if you have concerns about her language.

System - sorry you have been struggling with your exams. Hope you sort something out for next year.

Fuzz - is there any reason you wouldn't want to try the Pill first for hormone/period problems?

fuzzpig Sun 22-Apr-12 21:38:26

Hello, I'm glad you've posted TLP as it's reminded me to come back. Yesterday was so shit I've not got up the courage to post about it yet (and right now I should be doing my assignment for OU course). I will though... just feel far too wobbly right now.

Welcome o4t and I agree you are not a fraud, this is (I hope!) a welcoming, inclusive thread, so hop in smile

TLP - I am completely and utterly hopeless with taking medication of any sort. I would certainly not be reliable enough to use it as contraception (and that is another reason I want to do something... sick of condoms! blush). I also worry - and this applies to all hormonal contraceptives which is why I've been dithering for years - about putting chemicals in my body or doing anything which changes things (I managed with ADs, because that's just my brain, not my whole reproductive system which I feel is vulnerable). I worry about cancer risk etc. I know that is probably stupid - I am a big worry wart when it comes to health.

Kladdkaka Sun 22-Apr-12 22:58:24

Hi everyone. Can I join your thread? I've had a lifetime of being messed about by the NHS being told I was this that and the other and being pointlessly dosed up on anti-depressants. Finally received an autism diagnosis after I moved to Sweden. Hurray! Now I can start to put all the pieces back together again.

fuzzpig Mon 23-Apr-12 07:42:11

Hello smile I was hoping you'd come along after I linked on, um, some other thread we were both on <sieve brain>

I'm glad you've had a diagnosis, and that it's made a positive difference. Has it been at all upsetting though (sorry if that's a rude Q)? I feel happy that I've got an explanation but I am struggling with other aspects of this realisation - the fact that it is forever, and the anger that nobody picked this up before.

fuzzpig Mon 23-Apr-12 08:17:07

Right. I said I'd post about Saturday.

It was really horrible. I felt like a fish out of water, everyone has said how very different Saturdays are and I really felt it. When I take the DCs there it feels very uncomfortable - I only put up with it as otherwise they wouldn't get to visit - because it is so busy. I was hoping it would be different as I'd be safe, on the staff side, but it felt just as bad.

There are a few Saturday assistants whom I don't know at all. The timetable is totally different. I kept doing things wrong and then fighting back tears. Part of the timetable difference was good - because the SAs do a lot of the public side (though I did the first stint and it was really testing) I got more time for behind-the-scenes type tasks. But every time I nipped out front it freaked me out. It was an assault on my senses, like when you open the oven door and the heat burns your face but there's no yummy dinner as a reward.

Thing is I don't know if I really did find it so hard, or if that was just because I'm now so aware of AS that it is like a self fulfilling prophecy. In which case I should be very angry at myself for letting that happen. I'm sure at one point I was looking forward to this and not dreading it.

Alternatively, there's the option that I would always have found it a struggle, and had I not known about AS, I would have been really upset and confused because I wouldn't have known why I found it more difficult.

There was nobody to talk to about it although I made a few comments about struggling with it being busy. I have actually told a couple of people now but because everyone does alternate Saturdays it just so happened none of those people were there. I felt very alone. The other deputy - the one who has been told but didn't mention anything - did ask how I was finding it but it was more like a blustery get-on-with-it question IYSWIM. I really wish I was on the other Saturday with my line manager.

And the manager just asked me (arrived at work a few mins ago) if I was sure I was ok... I still said yes. And I'm NOT.

MaryBS Mon 23-Apr-12 08:27:08

Sounds horrible fuzzpig, is it something you can adjust to, do you think? I'm almost certain you would still have found it hard, if you hadn't known about your AS. Yes you are more aware of it, but because you are more aware of it, you can start to put in place "coping strategies" and rationalise what will help. Its still very new to you, so don't be too hard on yourself. The self-recognition of what is wrong gets easier with time as you become more aware of yourself and your needs.

Welcome Kladdkaka, can I ask what your name means please?

fuzzpig Mon 23-Apr-12 08:29:57

I think I can get used to it, but it would be a lot easier if some people on my Saturday knew about the AS. Just so I could say "this is difficult"

ThePinkPussycat Mon 23-Apr-12 09:37:12

fuzzpig I think you're bound to go through an information gathering stage where you notice stuff because of your diagnosis. I reckon the next stage might be that you process this and it actually becomes a bit easier. Trust your process on this.

Kladdkaka Mon 23-Apr-12 09:54:12

I'm glad you've had a diagnosis, and that it's made a positive difference. Has it been at all upsetting though (sorry if that's a rude Q)? I feel happy that I've got an explanation but I am struggling with other aspects of this realisation - the fact that it is forever, and the anger that nobody picked this up before.

When I first had it confirmed I was overwealmed with relief. I think, because I knew that all my eggs were in that basket and the diagnosis process was such that I knew the answer would absolute. Then I went home and cried for a week. Grieving I suppose for the 'normal' that had died.

Now I've found a level or peace and contentment that I'd never know before, although there's still a long way to go. At the same time there is a raging anger at the failure of all the professionals I met along the way who failed me and at all the terrible situations I went through that could have been prevented had I been diagnosed.

Welcome Kladdkaka, can I ask what your name means please?

Swedish sticky chocolate brownie cake. grin

devilinside Mon 23-Apr-12 10:02:24

Welcome Kladdkaka, are you actually Swedish?

One of my closest friends is Swedish, I think the people are great - so direct, you always know exactly where you stand. I fancy living there myself. Can't seem to connect with Brits at all (expect my fellow aspies, of course smile )

Kladdkaka Mon 23-Apr-12 10:07:44

No I'm not Swedish, although I do live there. Sweden is much more aspie friendly. Not just in the extra services and support available, but just in the day to day way they communicate and socialise.

MaryBS Mon 23-Apr-12 17:32:28

Even with a diagnosis though, people do not always respond supportively, and won't always take what I say just as I mean to say it. Like the time when I said "I don't understand" and someone got snarky with me because they thought I was being snarky. Then there are the ones who don't believe the diagnosis, or think you are exaggerating how you feel, even when you are only outwardly showing 1% of what you are feeling inside.

fuzzpig Mon 23-Apr-12 19:34:16

I've already got an idea who I will tell based on who I trust. I am (surprisingly perhaps?) quite a good judge of character. Maybe because I had to learn it. I tend to pick up the tiny details and nuances in speech because I have to use them instead of the overall tone I think.

I know a few people who I won't be approaching about it as although they are nice people I just don't get that vibe from IYSWIM.

Today was ok, I am annoyed at myself for not talking to my line manager about Saturday. Not that there's anything we can do, I will just have to get used to it, I don't know how to though.

I picked up 'genius in the basement' and 'Stuart - a life backwards' today as they are supposed to be about ASD.

I've also been looking at stuff aimed at children/parents but I don't know if I want to read it yet. I don't know if I would be reading it thinking "why did nobody realise" - especially as I know why already, and the reason really hurts.

devilinside Wed 25-Apr-12 09:52:24

how is everyone today?

I have a very stressful weekend coming up that will push my aspie self to the very limit!

I'm off for a sailing weekend for a friend's birthday (without DP), and whilst I'm sure it will be great fun, a couple of things are really bothering me:

I will have to share a cabin with other people (I sleep very badly anyway, and can't stand the thought of people seeing me asleep).

I have a severe sickness phobia (have stocked up on anti-sickness medication).

Other than that, hoping it will be a blast - lots of drinking and fun!

MaryBS Wed 25-Apr-12 10:29:29

I've got the book Stuart - a life backwards. I never finished it because I found it quite distressing. "A friend like Henry" is a good book, I enjoyed that.

devilinside, sounds like an exciting and eventful weekend! Hope it all goes well. I usually find my fears are greater than the actuality, as I think through and overprocess every possible eventuality!

I am wondering, does anyone else have a wheat intolerance? Seems to go hand in hand with ASDs sometimes, but for many years I kept having stomach problems and tiredness problems, and giving up wheat has really helped!

fuzzpig Wed 25-Apr-12 10:33:36

Ooh I can totally relate to both those worries. Am emetophobic and I hate people seeing me asleep. I was always the last asleep at sleepovers and I don't even risk falling asleep in front of my lovely stepchildren when they stay over. I probably seem really antisocial as I go to bed early.

I hope you have fun though - a change sometimes can be a good thing. smile

SystemofaDowny Wed 25-Apr-12 14:00:53

I just got back from my educational psychologist appointment. I took nearly 3 hours and i am exhausted. I only expected 10 mins like at a doctors appointment. Think I started to do badly towards the end because i just wanted to get out of there quickly.

only4tonight Wed 25-Apr-12 15:32:51

Oh system I don't think you CAN do badly with a psycologist. I think the results his are.

Can I recommend the book "look me in the eye" its a great book about life as an aspie.

SystemofaDowny Wed 25-Apr-12 15:55:52

I mean I wasn't trying as hard to get the answer in the end, just saying i don't know when maybe I could have got the right answer if I had thought about it for longer. I think the whole length of it was too long and especially on the reading parts i was too tired to read it all and just guessed the answers.

I will get a copy of the report in 2 weeks, but she said I scored low on language and social, average on processing, and high on maths and logic. Not sure why it cost £400 for that when I could have told them the same thing for free!

fuzzpig Wed 25-Apr-12 16:46:22

OMG did you have to pay for that? Or was it funded?

I will look up that book. There are advantages to working in a library grin

SystemofaDowny Wed 25-Apr-12 16:48:51

No I didn't have to pay but the university did. I had to sign a form with my details on so it could be paid though so that's how I know how much it cost.

TheLightPassenger Wed 25-Apr-12 17:17:19

fuzz - I've had about 8 years to get my head round all this, so I am v chilled about it mostly, but when it first hits you, that you might be on the spectrum, it does affect you deeply.

mary - yes I like A friend like Henry, as it shows the long haul aspect of parenting a child with social/communication issues, that although the dog was a massive help in getting the lad to communicate, it wasn't a miracle cure,

devil - hope the weekend goes well.

system - wow, that sounds thorough, hopefully you found the format of the tests more helpful than a q & a conversation

Kladdkaka Wed 25-Apr-12 18:00:41

I've been at habilitering (health service for autism) for 5 hours today and am utterly knackered. They've finally got round to explaining how the system here works and what help and support I can get and how to apply for it. I'm very excited and feel quite positive about the future. If I manage to get even half of the support that's available, I'll be a very happy bunny. grin

SystemofaDowny Wed 25-Apr-12 18:31:46

After 5 hours I would have been curled up on the floor crying, but it is good you are getting support that you need. Is that a normal thing in Sweden because I don't think that it is like that in the UK?

Kladdkaka Wed 25-Apr-12 18:43:13

I confess that I did have a cry partway through when it all got a bit overwealming. Break and a cuppa sorted me out again for the next stint.

Yes it's normal in Sweden. We have child habilitering and adult habilitering. It's a one stop shop for conditions from birth (as opposed to rehabilitering which is for ones you aquire along the way).

The actual support services are mostly provided by various other agencies but habilitering steer you through it all. So they will be making all the phone calls and come with me to all the appointments with social services, LSS (council disability services), job centre, county court, student financing, DSS, county dental board and ... SUPPORT ANIMAL SERVICES!!!!!!! They're going to see about getting my bubba (pic of profile) upgraded to the status of assistance dog. That's the bit that made me cry and that I'm all excited about. grin

fuzzpig Wed 25-Apr-12 22:10:32

That sounds amazing kladdkaka envy smile

I ordered that 'look me in the eye' book. I also found one called Aspergers, the universe and everything, which was by a child. Lots of biography type things to look through, don't know if I'll actually read them though as I don't often read that type of book.

Today was good as I got lots of alone time. It was a bit trickier in the evening as Wednesday is youth club so lots of rowdy teens! It gets very noisy and sets me on edge. I did meet somebody who is going to be on my next OU course though, hopefully we will be in the same tutor group. As soon as I said I was on the same one I flushed really red because she and my colleague both looked at me and that always makes me blush really badly. I hate that.

Work again tomorrow, I have to see my manager so I am going to attempt to bring up how hard I found Saturday, if I can work the conversation that way.

Kladdkaka Wed 25-Apr-12 22:14:00

What are you studying at the OU?

fuzzpig Thu 26-Apr-12 10:30:35

I'm doing ed209 (child development). In sept I'm doing children's literature which I'm really excited about. Just doing an open degree and it's a real struggle now but I'm determined to graduate eventually!

Kladdkaka Thu 26-Apr-12 10:37:17

Same here. I've been to regular university twice before but couldn't cope and ending up dropping out. I'm in my second year with the OU. It's easier this time as I have my own personal tutor on tap 24/7 (my husband).

Habanera Thu 26-Apr-12 11:51:32

I'm dropping in to say hello after a long lurk, I have no formal diagnosis but I know I and DD2 qualify-no doubt there. Maybe DD1 too but she makes more effort to appear NT.

I just wanted to ask can anyone explain processing issues for me, what are they and how does it affect you? Is it sort of like taking a long time to get or do some things, but they come out well when you finish, if you ever do? Or more like going blank, like math phobia-if you can keep your head you can do it fine but more often than not you freeze?

Anyway my best wishes for everyone in their daily struggles-you are not alone and that's a fact. smile

Kladdkaka Thu 26-Apr-12 12:50:00

'Processing issues' can mean 2 things, Executive Function deficit and/or Weak Central Coherence.

Executive function covers 4 main areas: planning, inhibition, generativity and mental flexibility. Take the example of cooking dinner:

Someone with a planning deficit will struggle to sort out all of the steps necessary and follow them through to completion. They struggle to sort out in their head that they need to shop, decide a menu, prepare the food, lay the table etc. For some they may cope fine with the high level stuff but just have problems following the recipe. Or they may cope with all the steps individually but can't cope with them all together. Others need even simple tasks, like laying the table broken down into much smaller chunks. Eg 1. take the table cloth out of the cupboard, 2. spread it over the table, 3. get out 4 placemats etc

Inhibition deficit would be that they go to do their shopping but get distracted by the cake counter or spend hours reading the magazines. Or go off and loose themselves in something else and forget that the food is in the oven until it's on fire (my daughter is particularly skilled at creating fires this way). Also things like loudly asking questions during the film at the cinema.

Generativity deficit would mean that your mind is blank when thinking about what to make for dinner. You want something different but you just can't come up with anything new. So you have beans on toast. Again. As you do pretty much every night.

Mental flexibility deficit would mean you can't move easily from one task to another. So you would have problems coping with leaving the vegetables half peeled while you check the pie is ok in the oven. And if someone were to knock on your door half way though, your brain might explode.

Weak Central Coherence is where autistic people can see things in much greater detail than others but have problems with seeing the broader picture. I have this problem. Someone else might clean their living room in an hour. They see the broader picture, so clear away the clutter, flick the duster round, quick vac, job done. I am so focused on the detail that I spend that hour dusting the mantle piece and making sure everything is back EXACTLY where it came from. Therefore it takes me 2 days to clean my living room. Alternatively I sometimes can't follow what is happening in a film or book. I can see details that others don't (can't bear it sometimes if the lips are a nanosecond out of sync with the audio) but I have trouble processing the immediate information to create general overview of what is happening.

Does that make sense? (In a waffley aspie way)

fuzzpig Thu 26-Apr-12 13:01:02

Hi Habanera smile

I think processing issues are a sort of partner problem to ASD? Not so much a core part of it. It can mean a whole bunch of different problems I think <helpful>

For me, I think I am probably hyperlexic. I was reading very early and was fluent and fast. But I cannot understand what I read. It just doesn't go in. I got by at school because I was good at picking out the answers to specific questions. I can read whole books without being able to describe the plot.

My other issue is with auditory processing, I think that is also known for accompanying ASD. I have issues with too much noise anyway but I really struggle with understanding speech. DH has to repeat things often. Or he will comment on something we've just heard on tv/radio and I won't have a clue what he means because although I heard the words I didn't get any meaning from them. I can't imagine using audiobooks. It's a wonder I got through school (top student, grammar school etc) but it's all come crashing round my ears now, I always thought I was clever but I feel more stupid every day.

Kladdkaka what course/degree are you doing? I am enjoying the child development one but the last assignment was really difficult, there was so much ambiguity and it threw NT people as well. I am really behind on the reading as it just doesn't sink in.

fuzzpig Thu 26-Apr-12 13:06:35

Kladdkaka's explanation is much better than mine! Weak central coherence definitely rings a bell...

Kladdkaka Thu 26-Apr-12 13:16:49

Fuzzpig, what you are describing in both your examples are Weak Central Coherence.

Weak Central Coherence and Executive Function deficit are not partner problems of ASD. They are a couple of the main psychologial explanations of the core problems of autism. The others being Theory of Mind, Hobson's Social Development Theory and Empathising-Systemising Theory (ES).

I'm aiming for a law degree, although that may be wishful thinking. I've done the level 1 60 point law module, which I really enjoyed even though it made my ears bleed. This year I'm doing the other allowed 60 points at level 1. I've just completed Understanding Autism and am part way through English For Academic Purposes and Contempory Wales. I'm hoping the English one will help me survive next year's level 2 law one.

ThePinkPussycat Thu 26-Apr-12 13:38:08

I am hyperlexic, but the meaning goes in! I can study from books very quickly because of this. But there is a down side. I can't switch off reading! I get the auditory overload too, but see a word, in any orientation, and it goes straight in. I hate all advertising and t-shirts with words on because of this, and one time when it got very bad I had to turn all the shampoo bottles and things round so I couldn't read them.

devilinside Thu 26-Apr-12 13:38:11

A lot of the processing stuff rings bells with me too. I always thought my inability to complete tasks / concentrate was because of ADHD/ADD, now I'm realising it's probably down to ASD.

I struggle to understand complex blocks of speech. DP knows he has to get to the point very quickly. With others I usually hide the fact I have not understood by just agreeing with them

SystemofaDowny Thu 26-Apr-12 18:39:31

Kladdkaka the living room thing is the same as me, it takes me forever to clean plus I have 2 young kids so its always needed to be done same with the rest of the house. Also the part about breaking it down into smaller steps I have to do. i have to right it as a list with timings. Just writing that probably takes me more time than normal people would to just do the cleaning. Its the same with most things actually e.g I can't just do the washing as to me its not just 1 job, its lots like 1. sort different colours 2. load washing machine and switch on 3. put in dryer/hang on line 4. take out of dryer/off line 5. iron/fold 6.put away.
the whole thing just takes me so long especially if I get distracted by something else in between steps, but if I tried to explain this to people they would think I'm mad or not capable of looking after myself. I am its just harder for me than most people.

Kladdkaka Thu 26-Apr-12 19:03:38

Yeah, that sounds like me. I read threads on here where people are asking 'what should my cleaner do in 2 hours'. Then everyone says what they can get done in that time and I'm like shock. I couldn't get it done in a week.

SystemofaDowny Thu 26-Apr-12 20:12:46

About the hyperlexia thing, i think I have that too. It sounds exactly like the problem i was explaining in the test i had yesteday. I could read all the words fine, and spell them quite well too, but when it came to the part where I had to explain what they meant I had difficulty. I did know what most of them meant, but translating it from a meaning in my head into words to speak out loud was almost impossible. Some like appl i could manage but other words like fortitude and audacious I couldn't explain even though I think I do understand them. The same thing happened in the general knowledge part for the question about Martin Luther King. I know who he was etc but couldn't turn that easily into words to explain within the time. she did actually understand all of this (the first person who ever has) and why this is part of the problems I am having with completing university assignments.

Kladdkaka Thu 26-Apr-12 21:05:17

I'm a bit funny. I fully understand my university course materials but I can't turn them into assignment answers either. Strangely though, if someone asks me what the answer is, I can turn it into words. It's like the signals that go to my hands go like confused. I try to speak my answers and then write them down, but it still just won't work. One of the things habilitering is going to do is sort me out with some magic software for my computer so I can talk my assignments and the computer will then turn what I say into words. (I'm such a technophobe, I'm still not convinced such a thing is possible blush grin)

SystemofaDowny Thu 26-Apr-12 21:39:32

It sounds like some kind of voice recognition software. I mean I can actually try to say something in answer ( if I am given enough time) but it would come out as random words not proper sentences with meaning e.g for the Martin Luther King question it would be rights.....I have a dream.... That is why I found my recent exams so hard because they were long essay type questions which I find impossible yet in previous exams when it is multiple choice or short answer questions I get 90-100% everytime.

Have you heard of something called alexithymia? I have read about this since I started researching ASD. Its a difficulty in understanding and describing emotions, which I think I have too. i think it is also kind of linked to the other problems I described but talking about feelings is definitely way harder than anything else.

Kladdkaka Thu 26-Apr-12 22:53:45

I didn't know the word but I definately know the problem. To me everything is either happy or angry. The rest I'm lost with. It's the same with a lot of physical feelings too. I can't properly recognise hungry, full, thirsty, pmt. The signals the body sends out just don't make sense until they get extreme. eg I can't tell when I'm thirsty so I don't drink anything other than my morning coffee for days. Then I get a brain crushing migraine and that's when I remember to drink.

fuzzpig Fri 27-Apr-12 07:39:00

All this is so familiar. It is exhausting feeling and thinking all the time.

One problem with the housework etc is that I am a very 'all or nothing' person. No grey area just black and white. I can't just do part of a job but to think of it all at once is overwhelming so I never start. Same with things like self care and study.

I've also been wondering - though I understand if it's too difficult to talk about - about self harm. I read it's more common in Aspies. I guess usually it goes hand in hand with depression, but lots of people have depression without even considering hurting themselves - so why is it apparently more likely for Aspies? I self harmed for a few years in my teens - still have awful scars. It was like an addiction. It started after I told about the abuse but I feel I would've done it at some point anyway. It's been a real struggle not to do it lately.

Kladdkaka Fri 27-Apr-12 08:38:42

I don't think self-harm does go hand in hand with depression in autism. I think the medical profession think this because that's what it looks like to them, as outsiders looking in. But as an insider looking out, I see it differently.

I spent half my life having anti-depressants pushed at me because of my 'depression' and suicidal thoughts. They never made an iota of difference. I now know that the problem is/was anxiety. Anxiety so extreme that it becomes unrecognisable as anxiety and looks more like depression. Depression is the bottom of a spiral where the body slows down and down till you can't move and you feel lower and lower and more and more hopeless.

Anxiety is the opposite, the body speeds up and you become more and more agitated and can't slow down and relax or sleep. But when anxiety reaches extreme levels it exhausts you so you can't move (ie get out of bed like with depression). You also get self-harm thoughts, not because of feeling hopeless and low, but just to make the flashing and banging and crashing and jumbling and chaos and noise going round and round and round in your head STOP!

ThePinkPussycat Fri 27-Apr-12 10:03:05

fuzzzpig I was like that with the housework - and it stopped me doing anything else, so I was in a messy house not doing anything. I am a lot better now, used Flylady but highly adapted. Beware, one legacy I have is repetitive strain syndrome in my right arm, from when I did get started and had to scrape and rub layers of gunge off the cooker.

SystemofaDowny Fri 27-Apr-12 10:13:07

Yes to the hungry/thirsty thing. I don't know what it feels like to be hungry. I only eat when it is a meal time. If I miss that time (like when i have late lectures) I don't eat until it gets to the the next meal time. Also something which has always confused me is pain. i have been asked before to describe what kind of pain I have. Words like stabbing or aching were used but I don't know how to tell the difference. To me pain is just one thing, something that hurts, I don't understand how to tell the different types.

About self-harming, I have done this too at 2 different times in my life. I can't really explain why though only they were times when i wasn't very happy about things that were happening at the time. i don't really understand depression either. i have been told I have depression many times, even now, but I don't think I would agree that I am depressed. Definitely anti-depressants don't affect me and if I read about symptoms of depression I can't see how they apply to me. I sometimes get really annoyed with the saying 'feeling low' because I can't work out what that means. To me low is a description of position of an object. I don't know how it is possible to feel it unless maybe by laying down on the floor, but I also know that this is not what it is used to mean.

Kladdkaka Fri 27-Apr-12 10:50:46

I got an eating schedule from the hospital. It specifies times of eating and amounts. This has helped me tremendously. Prior to this I would only start to eat when I started to feel dizzy and weak and would only stop once I felt sick. It's still a struggle, but I feel more in control.

I use an adapted version of flylady too. I have lists of what should be done in what order. Lots of them. I even have lists of the lists. blush The worst part is that I can't step outside of those lists. eg I'm working down and am on number 3 - clear the table. Then the dog pees on the floor. But sorting out the floor is number 6. I have to jump from 3 to 6 and back again shock. I can do it, with much angst but non pee stuff has to be left, no matter how small (like picking up a dropped tissue). If it's a major change, like having to ignore the lists to do an assignment, it's like end of the world stress.

SystemofaDowny Fri 27-Apr-12 11:59:19

yes lists and lists of list! Cleaning lists have to be completed in order so cleaning kitchen list is number 1 then cleaning list for living room is number 2. If I clean the kitchen one day then I should do cleaning living room the next day. But like now kitchen got messy again so I need to do list 1 first again before I can do list 2. If this happens every day ( and kitchen gets messy alot because of doing cooking/ washing up etc) then I can never get to list 2 so living room always stays messy. Lower down lists like bedrooms hardly ever get done and things that are a bit random and I don't have proper lists for like garden or car almost never get cleaned. i am quite happy that I can finally explain this to someone because I worry about it alot and this means that I have even less time for doing it which makes it worse.

Kladdkaka Fri 27-Apr-12 13:04:42

Yep, that's me. Room number 1 is spotless, room number 5 is an utter dump. Now that I have a diagnosis I can get social services to come in and take over from room 3 or 4. I'm so looking forward to having a clean bathroom (room number 6) grin.

Of course, this will mean a whole set of other 'control issues' popping up. "No, no, no, you can't wipe the mirror that way. It has to be wiped this way. Look it's number 56 on list number 22."blush

SystemofaDowny Fri 27-Apr-12 13:25:48

yes and also just the idea of people in my house touching my stuff would make me freak out- this has happened before and is a reason I pretend to other people that it is ok and I can handle it when I know I really cannot.

ThePinkPussycat Fri 27-Apr-12 13:47:44

Flylady had to be adapted as I can't do routine in any form. I used to try and work out the optimum order to do things, and not do anything, now I just start on something, or do all the rubbish in all the rooms, or do 15 min in one room, then another - whatever gets me started. It has to be Different - hence I have a large number of organisation books which worked for a week as each system was new, then stopped working as I began to find it irksome!

fuzzpig Fri 27-Apr-12 15:17:32

I cannot do flylady. I took a look at the website and it was too busy. Stuff like that freaks me out. I am very particular about what sites I use because some formats just do not work for me. Same with books - some textbooks are just awful and the outdated format puts me off. I know that makes me seem really snobby but I just can't process stuff if it is a bad layout. Unfortunately a lot of books about Aspergers are in a bad format. I found one that is good called 'Aspies on mental health'.

fuzzpig Fri 27-Apr-12 17:14:25

Had an hour long chat with the manager today and now feel completely wiped, and pretty tearful. I am raw and vulnerable.

She told me some senior staff have commented on a particular thing I'm doing 'wrong' and I explained why - it was a good opportunity to talk about the inconsistency of instructions which I (and some colleagues TBH) struggle with. She was really nice and didn't even mind me asking silly things like "am I in trouble" - the sort of needy, reassurance-seeking questions I ask DH. She was so lovely though and said they are really pleased with me (I do work my ass off most of the time, it's just this one issue I struggle with).

I feel paranoid and hurt about the other staff thinking badly of me but my manager said - at my request - that she will talk to the senior staff and tell them simply that I'm awaiting assessment for AS and that I find certain things really difficult. I find it quite difficult that due to illness/holiday they won't all know at once but I know that is just because I hate uncertainty.

I am proud because I managed to bring up the Saturday issue. I made it clear that I wouldn't give up and that I'll get used to it, but that it was a real struggle (I even told her my oven analogy!) and that it was particularly bad because there wasn't anyone there I could tell if I felt bad. She's going to talk to the other deputy (the one who knows about the AS but hasn't spoken to me) and say that she could check up on me.

We talked in general about how things are going and I had a little cry. I feel a lot closer to her since this started. She has a friend who was diagnosed with AS in middle age so she can relate a little.

It was a productive conversation as I actually handled some constructive criticism and I got out a lot of things I've wanted to say for ages.

I feel really wobbly though. I'm nearly home (walking extra slow from the bus stop) and as soon as I'm through the door I'll be Mummy and wife (DH is in a lot more pain since I started FT and he's doing all school runs etc) when I just want to hide and cry.

ThePinkPussycat Fri 27-Apr-12 18:15:56

Blimey fuzzpig you can post and walk? Being <ahem> of more advanced years it's all I can do to breathe at the same time as texting...

You have done amazingly well, managed to explain yourself, and what is more, take constructive criticism. It's a strain, though, holding yourself together for a meeting like that, don't beat yourself up that your nervous system is a bit jangly afterwards.

TheLightPassenger Fri 27-Apr-12 19:33:03

fuzzpig - glad you had such a productive chat re:work, sympathies re:criticism upsetting you, I find that hard too, when someone however nicely tells me there is something I need to correct, I go into defensive apologetic overdrive.

I also find it v hard to describe pain, and to distinguish a muscular ache from any other sort of ache. No particular issues re:food and drink, but then my issues are massively social rather than sensory.

fuzzpig Fri 27-Apr-12 20:43:49

I feel better now I've relaxed and watched telly etc.

I recognise the problems describing pain etc. I am actually a massive wimp now, I think it's because I am too scared to enjoy pain like I used to.

Another thing I struggle with is left/right, and also temperature! As well as being very sensitive to heat and cold (I cry if it is too extreme for me), I also can't get my head around the numbers. It's very weird - I know room temp is about 22 or something but if DH says what the temperature is due to be I don't understand it. He will say "11" (eg) and I'll be like... Um, ok... I just end up saying "so do I need a coat or not?"

fuzzpig Fri 27-Apr-12 20:47:53

Oh and I'm quite excited because we were talking at work recently about languages and I mentioned Latin so I got a simple book from the library which should arrive soon. I will have a browse as I pick language up quite fast (at least I did at school!).

I also decided to take up knitting. I've found a good book and it seems like the right type of activity for me because it's repetitive. My colleague said she would teach me as well although I'll see how I get on with the book first.

I've been putting off new things for ages because I don't feel like I can but you know what, fuck it, I work all the time and I deserve something new and exciting right?

ThePinkPussycat Fri 27-Apr-12 23:56:16

Oooh fuzzpig am so excited for you. Two of the things I've been so glad that I learned in my childhood were

a) knitting when I was very small - used to knit tiny mats for my dolls house when about 8, and a pair of mittens at school when I was about 10!

b) latin - it really gives you an insight into the latinate posh English and the ordinary everyday English - and how what they are saying is pretty much identical. eg when the vet said the cat had ideopathic vestibular disorder I knew it meant 'she is falling over because there is something wrong with her organs of balance, and we don't know what's causing it'

fuzzpig Sat 28-Apr-12 08:04:37

I'm glad there is somebody who knows Latin here grin I did it in year 7 but while I enjoyed it I can't remember any (well except amo amas amat amamus amatis amant. And 'via occultation' because that's in the famous five!). There's no real reason for me to learn it so no pressure but at the moment my brain feels like a sponge. I soak up info quickly but under times of stress it squeezes everything out.

What do you mean by 'Latinate posh English'? I am particularly interested in word derivation and I like working out other languages' words by comparing them to what I know, for example two colleagues were saying Italian phrases and I could work them out because of their similarity to French words.

I quite liked embroidery as my mum is very good at that, but I'm out of the habit. As a teen I enjoyed making things like friendship bracelets and gods eyes because they were repetitive. We did hardly any practical stuff at secondary (very pushy grammar) which I didn't notice at the time, being very academic anyway, but now I do resent it when I hear what other schools were doing. Even when we did a practical project 90% of the time would be spent on paperwork. Lots of my colleagues can knit so I can ask them if I get stuck.

Anyway I looked at the book I'm going to use, it's very well illustrated and I love the patterns - lots of grids coloured in, it's heaven for me! I love squared paper - I also have a colouring book of patterns that I use to calm me down. Hopefully I'll get the stuff next week and I can start at lunchtimes or in the evenings when we have a DVD on.

fuzzpig Sat 28-Apr-12 08:05:12

Occultation?! I meant occulta.

TheLightPassenger Sat 28-Apr-12 08:15:59

fuzz - we did a small amount of practical stuff - sewing and cooking- as we were at a girls' grammar school. friends at the co-ed grammar I recall were quite envious as they didn't do that sort of thing. Unfortunately basic Home Economics seems to have morphed over the years into some sort of Design Technology, so all about project work and design rather than practical life skills.

you might like crochet as well - personally I find crochet easier, as you just have one implement to think about. crochet patterns are often represented pictorially rather than in words in international publications, that might appeal to you too.

I did Latin at school, agree thata huge advantage of doing Latin is giving you a head start on other languages. If you are interested in word derivations, I reckon you would also find Ancient Greek interesting too.

fuzzpig Sat 28-Apr-12 08:29:21

We did food tech for one term in year 8. In that time we did 2 projects. One was making a pasta dish. The other was making a sandwich. <facepalm>

TheLightPassenger Sat 28-Apr-12 08:30:44

we wasted a whole term making and icing a Xmas cake hmm