Support thread - adults on the Autistic Spectrum :)

[fuzzpig]

Hello!

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. :)

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. 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 . 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.

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.

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) :o.

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."

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.

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!

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'.

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.

Blimey fuzzpig you can post and walk? Being 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.

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.

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?"

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?

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!
and

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'

I'm glad there is somebody who knows Latin here :o 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.

Occultation?! I meant occulta.

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.

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.

we wasted a whole term making and icing a Xmas cake

And yes I'm very interested in ancient Greek too! :)

In general I have a very high need for cognition. It is annoying at work because I want to know and do stuff that technically I'm not supposed to do. I find it so hard to do nothing even though physically I'm quite lazy at home (whereas at work I am hardworking). That's why I struggle with the task I got pulled up on yesterday - when it's quiet my brain starts thinking so I think of bad stuff and don't feel safe. I need distractions. I wish I could be happy in my own head IYSWIM but I don't think I ever will.

Thinking about the inconsistency at work also made me think about inconsistency in general and how I struggle with it. That's why I don't feel as comfortable with some members of staff - including the one I mentioned a few posts back who hasn't spoken to me yet - they are unpredictable. I think maybe they are just more affected by their moods than others and I can't complain really because I do that (though I keep my temper well), but it freaks me right out that one minute they'll be very short and brusque and the other they'll be joking around. This is also true of somebody who just got promoted and has definitely changed. I can't tell in advance what mood people are in so it's always a shock. I now know why I take comments to heart - because to me if somebody thinks badly of me once, that's it, they will hate me forever - so I now try and tell myself that the problem is with them, not me. I try and tell myself they are just in a bad mood.

DH is like that too - very changeable - these days, I know it's not his fault as he's in constant pain but it means the one person I can usually rely on is just as unpredictable as the rest. And we can't even snuggle up for more than a few minutes as it hurts too much. :(

I second crochet. It's so much easier than knitting and, in my opinion, whatever you make just looks prettier.

I love counted cross cross-stitch. I do the pictures ones and frame them. My walls are covered with ones I've made.

Oh no two things to choose from! I always wanted to knit but don't know what crochet is. Some people at work said it is more difficult maybe it depends which you learn first?

I think I should try both :o

I'll try and find a introductory book for crochet as well.

Overexcited now.

I've got an O level in Latin :)

I can, sort of, knit, but as I am left handed, it caused a lot of problems with various people trying to teach me. And I don't really enjoy it. I do love cooking though, I just wish my family were more adventurous!

Fuzzpig crochet looks far more complicated and difficult than knitting. But is isn't. What you will find it that with a newly aquired basic ability you can create stuff which looks like you're a genius.

There are lots of really good instructional videos on youtube that you can use.

Should add, I used to be a brownie leader and we used to teach the girls to knit and crochet. We got the ones who were less able to crochet.

Thanks. I will have a look at books for both, though I may try knitting first as there are lots of people around me who can help (colleagues/friends). I get really distracted when I'm working in the crafty section at work, there are so many amazing ways to create things and they all look so great, I wish I could do all of them!

I love that an Aspie support thread (incidentally is everyone here an Aspie, or does anyone have HFA? Although it seems there is controversy about the distinction between them anyway) has turned into a knitting vs crochet debate :o

There hasn't ever been a diagnosis called HFA. There's 'classic autism', 'asperger syndrome' and 'PDD-NOS'. 'High functioning' means an IQ of 70 or above. So strictly speaking asperger's IS HFA. I think the different terms pre-date the understanding of autism as a spectrum. Which is why they won't be in the next DSM.