Another day in the life of Amber

[amber32002]

Amber goes to the Doctors

It?s a reasonably simple thing, going to the doctors to get a repeat prescription, isn?t it. Not if you?re ASD it isn?t.

Thought long and hard about what I needed to say to the receptionist. Phoned the doctors. The receptionist told me that my usual doctor was now working from another site. Panic set in.

I asked if I could transfer to that other site as a patient. The receptionist didn?t know. She said I had to go to the surgery and look on the map to find out if my address was ok for that other doctors surgery site. I asked her why she couldn?t just look, but she kept repeating that I had to go in and look, so I gave up, rather stressed out and confused. I accepted an appointment to see a doctor I haven?t seen before (urk).

Checked several times to make sure I had the right doctor?s name. Turned up at the surgery on time (I have to be on time ? can?t be late or else I panic). Went to the reception desk, and told the lady who I was and who I was there to see. She was also dealing with a colleague who was trying to contact someone in Australia, and started talking to me about area codes for Australian phones. I have no idea at all. This is extremely strange. I hadn?t prepared for that conversation, so now I?m having to improvise and feeling even more stressed.

She gives me a yellow circular disk on which someone has written the word ?orange?. I?m not sure what to make of this either. It isn?t orange, it?s yellow. Goodness me, I?m puzzled.

OK, have to choose somewhere to sit down. So many seats to choose from. Can?t sit right next to someone if there?s other seats further away as that?s Not Done. Ok, chosen one. Phew. Trying not to get eye contact from anyone...

Notice there?s at least four more people to be seen before me, but my appointment time is 11.15 and it?s already 11.15. Oh no, it?s going to be late. More stress. I can feel the need to start tapping my feet or hands but I?d rather not because we're in public. Try counting the floor tiles, Amber...anything to concentrate on...

Eventually (20 minutes later, arrghhh!) the bell goes for my appointment. I now have to find the right room, which has an orange square on the door rather than a yellow circle. Oh well. Really nervous because a door with an orange square doesn't match what I've been given.

In I go, and the doctor asks me to sit down. I explain to her that I need a repeat prescription. All goes extremely well until she decides to ask about holidays. I wasn?t expecting questions about holidays. I have to improvise again. Drat. More stress. Out I go.

Back to the office. I know I need to sort out some faxes, and the next thing I know I?ve got my head on my desk , with my brain just totally cut out. Heck, can?t afford to do that?must carry on?so I take some time to just sit and listen to some music on the headphones for a few minutes.

Thank goodness there?s no other meetings planned for that day.

Thanks for your input amber - I don't think it's just a polite thing when out and about - as he will flock to the screen - say if we are in argos, he will go over to the screens - so I feel he goes to the screen as a stress relief.

I do too . a) They move. A moving object is very, very fascinating. b) there just might be a programme on that I like, in which case I might get the equivalent of a "gasp of air" before being submerged into the next instalment of the NT world. But I wouldn't dream of asking anyone to change the channel when out somewhere.

Even at a friend's house last week, they had the TV on for one of their children and I was continually having to stop myself from focusing solely on the screen instead of what was being said to me and it wasn't even a programme I like or understand (some soap opera where all the people look the same and speak in idioms). It was moving. That was enough.

Amber and the Tricky Subject of Personal Care

People are terribly polite about these things and probably wouldn't dream of asking, so I'll say anyway. And I never mind people asking things.

We're not good at looking after ourselves. As with all statements to do with ASD, there will be exceptions to every rule. But generally we just aren't.

It took me 22 years to have enough self-awareness to know what I needed to look like in order to fit with an NT 'normality'. It's taken another 20+ years to refine it. Even now I know how much I have to concentrate to get it right.

Bathing: first, as we know from my previous ramblings, it hurts those of us with sensory problems/the smell of soaps etc is overpowering/even soft towels are so rough we might as well ask for a roll of barbed wire to dry ourselves with.

Secondly, I'm not at all sure that I know exactly where my body is in any way that allows me to clean it effectively. No, really. My mental 'map' of my body is not good. Yes, I can see I'm here, but if asked to do something like moisturise the whole of my skin, I'll miss out bits and be completely unaware of it. And having another go means I miss out other bits instead. I just cannot co-ordinate eyes, hands, body map in any useful way.

Think how many tasks are self-care related. Everything from bathing to moisturing to putting makeup on, to brushing and styling hair and sorting out a decent and clean set of clothing. Every single thing is a battle against my lack of co-ordination and self-awareness.

And we get stuck in particular rituals and routines no matter whether they are useful or not. If I've learned to brush my hair in a very ineffective way, I'll keep doing it that way and it takes AGES to stop myself.

As for periods, it took me a long time to come to terms with, and the extra sensory problems/pain that comes with that are Not Easy To Deal With to say the least. Having enough self-awareness to know exactly how to time things was very hard as well, and led to a lot of embarrassing incidents

Thank goodness I have a lot of determination and a good sense of humour.

Hmm, I suspect that even the days I thoroughly enjoy would seem rather different to people.

Today, I took over to the opticians with ds where I found a brilliant magazine on classic cars which we debated at length in the waiting area. Then the optician wanted to explain eye structure so we were totally fascinated with his diagrams and explanations. Into the sports shop to buy rugby boots for son and have a decent conversation about sports with the owner. (found someone else in there who knows me, but no idea who they were...). Browsed a bookshop for anything historic or map-like. Then back home so I could do the oil, water and tyres for the cars and give one of them a decent wash. And I've baked a cake (nothing fancy) and written another 5 pages of the book, plus rearranging most of the chapters. Oh, and looked at some more maps for an ancient city, started the washing and done the dusting. And cleaned the kitchen floor. (Well, tried to. I think it won ). Now I might have a read of the science magazines and find out which scientists are weeping over their disproved theories this week.

Tonight, over to friends for a meal in which I will have to manage several hours of polite conversation not including any mention of cars, science, rugby, maps or indeed AS, and absolutely not drop any food, cutlery or glasses . I like them very much so it'll be good, but very hard work.

Anyway, that's what a great day looks like from an AS perspective.

Amber, thanks so much for this. My DC are both NT, but I am the SENCO for the Preschool that I work in. YOur descriptions are really helpful to give me a little insight into your world.

Thanks so much for taking the time and effort - I really value it.

Strange expressions if you have a brain that works in pictures, not words:

"I'm all ears". Er, no, you're not. A person made of ears would be extremely odd.

"That's the elephant in the room" There is no elephant in the room - I've checked. But now my brain has an image of an elephant rather than thinking about the subject.

"Eat your heart out" No thanks, I'd rather not. Yuk.

"She's a big cheese" ( image of someone large-cheese-shaped )

"My ticket has run out" (brain creates image of ticket with little legs, running out of the door, being chased by the person)

Fascinating, but all very illogical

Having a brain that works in pictures rather than words as its 'first language' makes reading a lot of articles either very funny indeed, or a great mystery to me.

Amber, just found this thread and I really appreciate the opportunity to read how things affect you. Ds1 (5) has sensory processing disorder and I am finding that there is always something new for me to figure out that will help make his life easier.

I found your comments about knowing where your body is to be particularly interesting. I am a behavioral optometrist and I just did a talk on this for special ed administrators in my area. Yoked prism therapy has worked brilliantly for many patients with autism or sensory problems. We now know that this is where much of the stimming comes from. The constant need to remind oneself where the body is in space. Also rocking back and forth provides vestibular input for this when visual input is not up to the challenge.

Thanks again. will be watching this with interest.

I was asked about language on another thread, so thought it was maybe a good idea to put the answer here in case it helps.

I spoke early, but strangely. I could say "supercalafragalisticexpialidocious" at age 2 because I could repeat all the lines of the script on the TV. I didn't know anything about what I was saying though - I was repeating sounds. I annoyed all sorts of shopkeepers in the village with repetitive phrases and actions like "this shelf is dusty". Again, copied. Copying is good, but my use of language was 'copied phrases'. In any conversation I was absolutely stuck. No idea at all. I barely spoke to other people until I was in my 20s, because I didn't have the skills to hold a conversation. I could manage repetitive games with one person involving describing what we were doing, or very short conversations on familiar topics with one person. Or just talk and talk about a favourite subject, but that was more lists and commentaries, not any attempt to share something with someone.

To me, language is pictures. Look at the paragraph above. My brain sees a picture of a script, a TV, a shopkeeper, a village, a shelf, two people talking to each other. It's like the old Generation Game on the tele where they had that conveyor belt on which there'd be a toaster, a cuddly toy, a set of crockery, etc. I see a stream of pictures.

But the trouble is, it goes wrong very quickly. It's why we often have a silly sense of humour - because phrases often create the most extraordinary images (red herring, elephant in the room etc).

"Filler words" are meaningless, I just know how to put them in sentences through long long experience of listening and being told off for getting it wrong and copying. Words and phrases like "to be" "it will" "love" "spirituality" are meaningless. If I can't draw them, or touch them, they don't really exist.

In theory I have an IQ of 135. Try me with a crossword or anagram or word puzzle and I score in the lowest quartile every time. I can't even do the tabloid simple crosswords. I can't think what alternative words or similar ones are. No, really. Not a clue. It's highly embarrassing but I have learned to disguise it by avoiding anything and everything that shows that inability.

I also copy what people say without thinking about it, especially if I'm not concentrating on it. It makes more sense if I say it myself, and sometimes it's just a delaying tactic until I can think of an answer.

If someone asks me something I'm not expecting, I am totally, utterly stuck. Can't think about what to say at all, and panic sets in.

Given a choice, I wouldn't speak. I'd write or use pictures every time. Email and message boards are my life, to a huge extent, and phone calls are manageable but much more challenging. Face to face conversations are hugely difficult because of the lack of time to think about what's said, but I have to be able to do them because of the jobs I do, so I've learned enough techniques to cope.

A lot of that sounds familiar Amber. I see films of things happening and pictures to describe every word as well, but I do know (mostly) what the abstract term means as well. I still stumble sometimes, I only found out last year that saving for a rainy day does not mean you are putting money in a piggyback to treat yourself when it rains.
I think my use of conversations etc is normal now, although I have been told I have a tendency to talk at, rather than with, people and once I get latched on a topic I will give a lengthy soliloquay on it.
I'm the opposite when it comes to word puzzles and verbal quizzes. I am good at them,I love doing them and am fascinated by the way certain patterns emerge with letters. I get caught up with analysing particular meaning and different synononyms for words. Reading "she should have gone to the shops" can see me pondering for ages on the differences between should, could, must and would. I'm pretty sure I have strong hyperlexic traits.

Forgot to add I will pause in odd places as well, which leads others to presume I've finished what I was saying and interrupt me. I also repeat myself a lot and have tangential speech, where I'll get distracted onto another topic and struggle to get back to the original one. The trouble with that is that I want to say what I originally planned before I got waylaid and others presume I've happily shifted topics. I used to speak extremely fast but have slowed down now. I also have significant difficulties initiating talking, but once I get going I can talk well.

many thanks for your detailed explanation amber, DS also did a lot of telly talk. I am OKish with face to face convos in small groups, but have trouble with the phone as I pause in the wrong places. (NB I don't have any sort of Aspergers DX, but clin psych I saw for OCD said "it had crossed his mind that I may have Aspergers"), so I think at the very least I have oodles of traits - I primarily have the social anxiety/social skills difficulties.

Saving for a rainy day doesn't mean you use the money when it rains? Well why do they call it that then??

Thanks for the insights Amber! I've been trying to understand DS's (2.10, no dx yet) behaviour along those lines. I can definitely see why things like patterns and sequences, which DS is very good at, make more sense (in a sense) than body parts - that would explain why he can 'read' numbers (he now position-reads hundreds, tens and units, he's tried with the thousands, getting them wrong, pointing and turning to me to see if I tell him the right way, but I've been resistant to teach him because I think hundreds are enough for his age), but not point to his stupid tummy when asked
What I'm not sure about is the sensory issues: other than not liking the hair-dryer and having his hair cut, he seems happy (big smile happy, dragging me along happy) in crowded, noisy situations as well as not crowded, not-noisy ones, and doesn't seem to have any rituals or routines either.
Sorry, I'm practically asking you to dx him here...

I think you should write a book Amber, I love your posts and find it facinating and again a good insight into DD2's potential issues. xx

SC134, you're asking the wrong person for sure - no way can I dx anything at all as I'm not a qualified Expert . Well worth getting an opinion from someone who is, though.

mumgoingcrazy, I am writing a book. Rather slowly at the moment but life's events have been fairly so that's not surprising.

Amber, apparently it's to save up money for when you have less coming in apparently. Say if you were made redundant. But I only found that out last year on another site. I still get an image of putting money aside and then colelcting it when it's raining though.
Do not ask me why they call it a rainy day though. Unless rain is meant to be miserable.

Sorry Amber , you're right. The wait for DS's dx is driving me up the wall

Amber takes her car for an MOT

As you know from previous ramblings, I love driving. Took me years to learn, but I love it. What I don't love is garages. They are filled with people who want to talk to you, for a start.

Today, the car's MOT. I know this garage really well. Been there for years, so I know the layout, the car parking, the seating, the loos, everything. Got there, found a car parking spot (hooray!), walked in purposefully straight past the receptionist (one less person to talk to) and over to the service reception. Short conversation with the service man, remembered to hand over the keys, was told to 'Go and take a seat' (where to?!) and 'do help yourself to a coffee'.

Well, I decided not to take one of their seats, since I reasoned they?d want them all for the next customers, and they look quite heavy to carry.

The coffee machine has no instructions on it. Drat. No instructions means no coffee for me because No Way am I having a conversation with the receptionist about coffee machines. I sit down in my usual seat and note there's car magazines to read. Joy! Apparently about an hour goes by, during which time I read every car magazine they have, including the statistics.

I decide to be brave and try using their loo. This requires considerable checking and rechecking of the locking mechanism (ok, we?re obsessional!), and being nearly suffocated by one of those automated perfume-sprayers they put in there (cough, choke, splutter, urk).

Back to the seating. Drat. Have now read all the magazines. Now trying not to make eye contact with the salesman who's dangerously close to the customer seating, in case they do what they did last time and come over to try to sell me something (always a bad idea).

The service man comes over to tell me my car is ready and doesn?t need anything doing. Hooray! I am asked to pay the bill for the MOT, and he?s just handed me back my keys. Now logically I should have put my keys down before trying to get my purse out, shouldn?t I. No such luck. Much wrestling of keys and purse later, I extract one card (phew). Now the Pin Number Challenge. Suppose I can?t remember it, suppose I get it wrong, suppose he talks to me half way through me entering it and I get it wrong then? Suppose the card is rejected for some weird reason and there's an Unexpected Conversation? This is very, very highly stressful, but I manage it. And remember to say thank you. And pick up the papers.

Unfortunately my brain is now so thoroughly fried that I walk straight out of the showroom onto the roadway without thinking to look . If overloaded, simple things like personal safety just disappear out of my mind completely .

Back in the car...safety...phew.

I hope you had a large cup of tea when you got home!

Thoroughly enjoy these threads Amber, it sounds so exhausting but so insightful as well.

I get a lot out of reading these, it helps me understand my DS2 a little more but I am now also working with adults with an asd and these threads have helped me enormously.

I hope you don't mind me asking but I'm wondering how hubby is?

He's doing SO well, thanks
Brilliant medical team got the right potions into him at the right time, otherwise he'd be dead. As it is, he's recovering nicely, and should stay recovered too. Phew...
But trying to navigate the total chaos and the hospital stress alone was pushing every skill I have past its limits and I'm still very exhausted.

Glad he's doing so well, Amber.

Hope you're de-stressing and resting as much as you can.

I'm glad it's sometimes useful .

I discovered this thread the other day, and just wanted to say thank you to Amber (and bullet!) for your hugely insightful posts. I am in the process of trying to get a DX of Aspergers for DS2 and it is so helpful to get more of an idea of how he feels. The language thing is really interesting - although he began to speak quite early and has never had any real problems with his language, he just doesn't "get" those odd phrases like "saving for a rainy day" that are such a part of everyday life. Our family does tend to tease each other quite a lot too (in a good way!!) which DS1 loves but DS2 usually doesn't get the joke so we are having to modify our behaviour so he doesn't feel left out or upset.