24 hours in the life of Amber

[amber32002]

Yup, another entry, just in case it's ever useful to anyone.

A Meeting with one of the Big Disability Charities.

What's the difference between an NT going for a meeting, and me going for a meeting?

NT: Looks up location/plugs it into their sat nav. Goes there. Meets someone. Has meeting. Says goodbye. Goes back to work. Probably has another meeting. Then goes out with mates in evening.

Me: Two weeks beforehand, start gathering info for the meeting. Satellite pictures, journey times, alternative routes. The people send me pictures of the venue, the car park, the people I'll meet.

On the day: Get up feeling sick with anxiety after not sleeping very well. Get out checklist of things to take: all possible medication in case I feel ill, water, food supplies in case there's nowhere to have lunch or I can't eat what's on offer. Maps, plans, photos. Check directions three times. Check weather forecast. Check travel reports, twice. Check car tyres, water, oil, screen wash.

Check outfit, hair, makeup...this takes a long time if your brain won't 'see' what you look like all at once.

OK, we're ready to go. I leave an extra half hour early, just in case.

80 miles later, I'm there. Note that the actual driving is the easy bit. My music, my car etc etc.

Get to the building, park the car, and re-read the instructions for what to do now. Check my phone for messages, send some texts, check emails. All of this allows me to calm down a bit. Ah yes, it says "press the buzzer" and someone will meet me. They did, too! But then I realised I needed the loo . Well, it was a long drive, y'know . They direct me to one. Oh heck, sensory overload from the perfumes in there, and there's a wet handtowel. Germs, cold, arrghh! Can't go near it. I cope, just.

The executive comes to get me. She takes me upstairs to meet the Chief Exec. A handshake? Heck! And three chairs to choose from. And a map on the wall. OK, think quickly, Amber. You know what you're like with maps - you can't have a seat where you can see the map! I pick the one near the window.

Oh, the other exec wants to be in the meeting too? That's unexpected. And a problem. Now I'm going to have to switch attention between the two of them . She volunteers to leave if I'd like her to, but I think I'll cope, just.

Someone brings us a cup of tea. In a mug! Hooray!!! No hard-to-balance cup and saucers!

We discussed how to get me involved with the charity. They want someone who knows about a particular topic and ASDs, and can explain it. They suggest they could set up a large meeting with people from all over the country as a brainstorming session (which always sounds a bit dangerous to me - do you actually get a storm in your brain??). I said yes, they could, but then I couldn't be there because I can't do brainstorming meetings - they're too random and too scary.

I'm also having huge difficulty in concentrating on looking at the people. There's a chart on the wall, and the blinds are a good pattern of stripes, and my eyes SO want to just look at those fascinating things. But I know that I have to look at the people. No idea if they're happy, sad, angry, puzzled or otherwise by looking at them, but it's polite.

They started to realise they really didn't know a lot about ASD, so then we spent half an hour talking about me, and there was lots of "well I never!" and "really?" and "who'd have guessed that!". And then they realised that half the things I was talking about were things they've never even thought about with the children they help who have an ASD, because they didn't know they were often a big part of ASDs (sensory issues, etc). They'll try to do the meeting in an ASD-friendly way. Hooray!

Left the meeting. Yup, nowhere for lunch. Good job I brought my own, eh? Can't afford that much of a change of routine, or else I can't get home again because I'd be 'shut down' in the car.

Drove back.

Got home. Collapsed into a state of non-communication for the next two hours. No other meetings, nothing. Can't do more than that.

Thanks Amber. I am always so enlightened by these threads
(no wonder my DS collapses in a heap at the end of the school day!)

Day Out at the Countryside Show

Yup, you've guessed it - I'm the one who's checked every plan, map, diagram, weather forecast and detail for it. And packed all the usual things for every conceivable emergency or disaster.

Off we go, my dsis and I. No problems on the drive to the event. We get there, a man wants money for us to park our car. That's ok, I'm used to that. I only panicked the first 10 or so times that happened.

Another man signals for us to park in a particular place. He's in a 4 wheel drive buggy thing, with a huge rottweiler dog on a lead. I get out of the car and go straight up to his dog to make a big fuss of it. The man seems alarmed, but it's obvious to me that the dog's friendly. Apparently he's not supposed to be . Oh well. Dogs tend to like me. I speak pretty good dog.

Brilliant - blue skies, countryside, trees, fields, bluebells. Apparently there are people here too, I notice after a while. Don't usually notice the people, other than to avoid bumping into them. I notice the horses, and the dogs, and things to buy that are arranged in attractive or interesting patterns. We find the schedule of events that lists every detail. There's tables, statistics! Yippee!

We decide to walk round the cross country course. Horses are my 'thing'. Have been since I was tiny. I can tell you every breed of horse, their likely height, their characteristics, and identify everything about horses and their equipment and mannerisms. I speak better 'horse' than English.

I nearly go base over apex down one path, because it's not very level. This is a big hazard for me, because I'm just not very well balanced. And when we get to one part of the course, there's a big drop down and we have to find a way round it. Others can handle it, I can't. No way.

We find a couple with some huge Leonberger dogs. I chat to them about the dogs for a while, to my sister's horror. I have no problems chatting to people about animals at all - that's one of the great things about animals for those of us with an ASD. It's a great social thing. The male dog is absolutely huge - even bigger than our Bernese Mountain Dog used to be. Unfortunately, all this chatting means that I'm not focusing on where I'm supposed to be standing, and the fence judge has to remind me to step out of the course . This is why I don't go to events like this alone, in case I lose concentration with all the input and do something silly.

It gets to lunchtime. Back to the food stalls, where I manage Not To Drop My Money Everywhere! Great! But the cup of tea doesn't go too well. I forgot to put it down carefully enough and spilt a good bit of it. Dsis volunteered to get me another one, but then I'd have to drink all of it and I'm suspicious of the country event portaloos. Very suspicious indeed, to be honest.

Eventually, after a really nice time watching the horses and dogs (and the antics of some of the horses, including one that reacted very badly to a man waving a large blue water bottle towards his rider. The horse bolted. I'm not surprised. I would have done too. The sunlight was behind it and it must have looked like a tidal wave of sparkly water aiming right for his head, silly people. I guess having the same sort of visual system as horses is handy for me, but not handy for people that don't have it.)

We watch some of the horses whilst chatting with a mum who's brought her daughter with CP out to see a friend ride her horse. Lovely young girl, very cheeky and independent. Her mum tried to stop her going near the horse, saying "They'll find you too scary, dear!", but of course the horse didn't. They can tell when a child is just being friendly. He stuck his nose down to her so she could pat it.

Dsis realises she's left something behind, and goes off to find it, leaving me alone. An Amber left alone is a very worried Amber. I sit down so I can't do anything wrong, and concentrate on watching the dogs round me. I also try watching a group of people as they meet each other. I guess they must be friends, because there's a lot of high-pitched "hello!"s and handshaking and air-kissing. One of their children has a small dog on a lead who is thoroughly fed up of being run round in very small circles, but is putting up with it as graciously as he can, whilst looking at me in a "please reason with these people" sort of way. The mum notices, thank goodness.

We get back to the car, but they've not marked how to get out. Dsis assures me we can go left. I can't see how to go left, so I have to go the long way round, whilst no doubt she rolls her eyes in some despair, bless her.

Back home we go, and with a big grin on my face.

tclanger, thanks - I've told them to find someone to talk specifically about low-functioning autism too, since it's good help for me to have someone else there, and it's only reasonable to get someone who can talk first-hand about that end of the spectrum. Not sure who we'll find, though.

Amber, these are fab, so enlightening. Please put them in a book.

Although I have to say that a fear of portaloos at country shows should be considered entirely reasonable whether you're NT or otherwise!

Amber, fab post; thanks for that.

You give fantastic accounts Amber and a lot resonates with myself. Thank you for putting them on.
If it helps this is an account of a party I went to a little while ago.
Several months before get given invitation. Immediately look up hotel where party is being held. Check train times. Visualise journey down in head, realise I can manage it as I can picture it as a rough rectangle in my head. Realise it will be by the sea and I like the sea and most importantly I like the person giving the party. Phone up and book room. Explain I am there for the party. Feel proud of self for making phone call.
Hotel rings back to tell me I have got the wrong date. Rebook with proper date.
Two weeks before recheck train times. Revisualise journey.
One week before, repeat as above.
One day before repeat as above. Go into town with DH to choose party clothes. Hatre shopping, order DH not to offer advice or suggestions and apologise in advance for behaviour.
Do shopping. Apologise after for behaviour.
Make up food for the weekend. This is not because DH can't cope, but because I will rest easy knowing things are sorted. Write list down for DH, again really for me than for him.
Morning of party. Get dressed. Comb hair. Forget to brush teeth and wash face. Realise as about to leave about the teeth and quickly brush teeth. I can not spit the paste out (I mean physically I can, just not emotionally) so I do what I do every time which is to swallow the toothpaste. I do liek the taste, though. Pack bag and check and recheck and triple check. Get coat on and check I have cards and mobile phone and printed out directions for train and from destination station to hotel.
Arrive at train station I'm setting off from. See other party member on platform getting onto train. Am sociable and say "hello" and sit next to her on train. Then get out book to read. Finish book then start doing puzzles. See big town approaching, automatically think this is my stop. Leap off train when it stops. Have got off too early. Luckily the train I wanted also leaves from this station in 4 minutes time. Am mightily impressed at my quick thinking as I board the train.
Rest of journey goes ok, minor problem when there is a bus replacement (I hate buses) but I knew about the bus already, so problem is just finding it. Once I get help though it's easy enough. Arrive at destination station and look at directions from station to hotel. Oh yes, this will be easy. Off we go, tum te tum, yes, going the right way, oh yes, piece of cake, la la la.
Where has the landmark gone? There's supposed to be a named building here. I am seeing a building but it's not named. Oh god, what do I do? I am in a town I have never been to before and I don't know where to go. Ok, look at the map. Concentrate and just think logically. Oh, I can't think logically. Right, well, I'll head up here and see.
It's the right street, there's the pub named in the directions. Oh thank goodness. See, I knew I could do it. No problems, go into the hotel, check in, upstairs in lift to room. Go back in lift and downstairs.
Where has everything gone? I'm lost, nothing makes sense anymore. Aah, that's it, I got off at the wrong floor. Go down to other floor. No, I was right the first time. Bck we go. I am still lost. This is a small hotel, how can I be lost in it already?
Find way back to bar about three seconds after I have decided I will be lost in the hotel forever and will end up a la The Shining. See other party members in bar, head over and sit down. Ha! Sense of direction AND sociable, to boot.
Oh bloody hell, there are so many here. I can't do it, I can't join in. Sit smiling inanely. Latch onto group going to get food. Say about three words in the couple of hours. Desperately trying to start talking but feel so tired and overwhelmed. Go back to room to lie down before the party, feel headachey and need quiet.
Get changed, sort make up out, brush hair but don't style it. Can't style it, but as logn as it looks tidy that's the main thing. Realise my party dress and matching tights do not have pockets. Get shower cap from bathroom and empty money and hotel keys into it. See, versatile as well!
Head down to party room, host says "hello" and introduces me to a family member. I politely say "hello" to family member then sit next to her and say nothing at all. It is very noisy, very bright and so many people, none of whom I recognise at this stage.
Aha! I see other party members I do know. I move over to them. My head is better, I am being sociable and organised and there will be no problems.
Except I can still barely talk. Everything is so overwhelming. Manage a few replies to people but any attempts at actually initiating or expanding on covnersations are a virtual no no. Never mind, here's some decorations on the table, I'll sort them out. Nice and tidy, get them all in a nice orderly manner. Thank people who have passed me more decorations. I shall just do this for a while. There, sorted, go and get another drink.
Back I am, back to my nice ordered decorations. Oh no, no, nooo, I must have knocked them. There's pieces missing, it's all wrong. I can't cope, I can't do this, I need to put the decorations back. No, I'll be strong and realise it's not the end of the world. I need those decorations though. I can't manage to talk, people are sitting next to me sometimes and saying things and I think I reply but not with any ease. I'm silent for the vast majority of the party. Listen to music, watch Karaoke (brave singers).
Five pints later make decision to dance. Am still too sober though. I'm aware how unco-ordinated I feel, but I have a semi solution.
I don't move my arms.
Still so much noise, so many people, need to go and sit back down. Can't though, can't ggo in the middle of the song, need to hold on and act as though everything is ok. Things building up, need to stop this, get hand and start scratching at inner arm on other side. If I keep scratching I will concentrate on that rather than everything else.
Party over, go back upstairs to room, don't say goodnight to anyone. Look at arm, curse self, no real injury but it looks obvious I've done something. Go to bed. Wake up and put jumper on over shirt I wore to bed. Get dressed. Forget to wash face or brush hair. Go downstairs to breakfast, Much quieter, much calmer. And the party was good, nice to see people, managed to cope with it, could do it again I think.

sounds fun

the non com crash after going throiugh any ordeal, is very familier, after work i crash myself. worse it ordeals you dont see coming or things that catch you out.

still i enjoy the psots.

Bullet123, that nearly all sounds SO familiar from my experiences of social events - brilliant.

Amazing what we experience and endure to go to see our friends, compared to others, eh? But as you say, it's worth it if we can manage it somehow.

Did any of them know that you have an ASD and try to do anything to help? If so, what would have helped? This is something I struggle with myself - who to tell, who not to, what would happen if I did. It's so variable.

Amber and the History Lesson

I've been trying to do some courses on history from time to time through the local adult learning centre. They know I'm Aspie, and are lovely people, but it's been an experience:

Get to the building. I'm familiar with the room and where the loo is, so that's a relief (in all sorts of ways ). I've met the people on the course about 20 times so far, so you'd think I would know who they are and what they look like. Nope, not really. I think I've memorised about half of them, now - as long as they don't change their hairstyle or clothing style too much, that is.

I help put out the chairs. A task is of course exactly what I want to do, rather than sit and wonder if I'm supposed to be saying something to someone. I exchange a 'hello' with a few people. I hate the bit before the lesson begins - almost anything could happen, really.

We're ready to start. The teacher is talking about Charles II and what happened in England. She's using lots of pictures, and also talking at the same time. As ever, I can't swap between looking at the pictures, and listening to her, so we've invented a system where she gives me copies of all the pictures and slides beforehand so I can know what's going to be said and done. Or afterwards would do, so I could catch up a bit. I try making notes, not very effectively since my handwriting is fairly awful. Really should bring a laptop next time.

She wants us to discuss things in groups. Absolute panic sets in. A group? Which group? We have to pick people to be in a group with?? And discuss things??!

Just about manage it. Now very stressed out. She asks me to read out what the group decided. This isn't easy either, but I manage that too.

Tea break. I hate this. I have to wrestle money out for the donation for tea supplies, and balance the cup and saucer without spilling any, and deal with the challenges of what to say to people. I tend to put the tea down somewhere until it's nearly cold and I can drink it all at once, and then make an excuse to go to the loo or check for phone messages. Anything rather than cope with the sudden echoey noise of all the voices talking about totally random things and making eye contact with me. If there's resources out, I'll look at those instead. I do like everyone on the course, but I just don't know how to cope with the socialising in groups. It's too much for me.

We get into the second bit of the session. We have to examine some poetry and some political cartoons relating to the Stuarts. Poetry makes no sense to me at all most of the time, and I tend to misread cartoons by thinking literally. This is quite a challenge. I get it very wrong.

It's the end of the session. I've made it all the way through! I help stack the chairs, in a rather unco-ordinated way, and totally forget to say goodbye to people in the rush to get out of the building.

They all know (well, not everyone in the party, but everyone I know) and were all very helpful and understanding, which is one reason I was able to do it. I had a crisis of confidence several days later about how anitsocial I was and they were marvellous about it.

Amber takes the history group to London for the Day

Look, it seemed like a good idea at the time, OK?

All I had to do was get me and 10 other people including the lecturer to London and then into the Banqueting Hall and St Paul's Cathedral. Plus coffees and lunches. And a train journey there and back. How did I end up organising this? I've actually no idea at all. I think it was because the lecturer is worse than I am at directions and planning and said "Amber, you're good at maps and buildings - you can help do this!".

Well, I am indeed good at maps and buildings. I planned and planned. Every detail. Train times, mobile phone numbers in case we lost people, where to eat and drink, where all the loos were, opening times, entry prices. All checked and double checked.

Won't mention the train journey up there - I'm sure you can guess my views on that by now (!). Managed to get to the Banqueting House, only to find that it's closed.

Well, not exactly closed, but it's being used for a Save the Children Fund fair - a very, very posh one, and the entry fee is double what we thought. Oh goodness me, why can't places tell us these things before we turn up! Want to see an Amber in a complete panic?

We decide we've really got to go in there. We combine financial resouces and buy 11 tickets to get into the fair. Goodness me, it's posh! We were offered a glass of wine on entry, and got to choose from seven different sorts - "a frisky little Sauvignon, or would Madam prefer a fruity, rich Merlot?" Madam had no idea at all at this stage. They could have been offering me Poison De Jour and I would have had a glass of it quite happily .

Now to get me and 10 other people to look at the historic features whilst seeming to be buying things. Trying very, very hard to shut out the echoey bustlingness of it. The wine is helping, I have to say. En masse, we group together and do a circuit of the banqueting hall, all staring at the ceiling and muttering things. This is clearly not quite what the organisers of the fair were expecting, and it's attracting some unusual attention from people. We decide to split up and try to look more casual . Unfortunately, I've now seen the stall with books on, and the ones with scarves in all sorts of different colours and patterns. I...can't...stop...myself! I have to feel the scarves. Wonderful! I guess this means I'd better buy one, since the lady on the stall is looking at me in a Funny Way

Scarf purchased (That much! ), we exit the building. I note that many of my group are now carrying bags of goodies of one sort or another, and a couple of the more elderly ones are no longer walking in a very straight line and seem a bit giggly! I suspect they may have had more than one glass of Pinot Extraordinaire whilst we weren't looking!

We head for a restaurant. The group don't get another word out of me for the rest of the lunchtime session. Goodness me, I'm exhausted, and we haven't even done St Paul's yet! The restaurant has a tiled pattern on the floor. I busy myself counting them all. Several times. It helps.

St Paul's was actually really good. Quiet, not many people, lots of building to look at. People said they'd enjoyed the day, even if it was a bit unexpected in places .

Got on train home. Fell asleep on the lecturer's shoulder. I don't think she minded

lol Poison du Jour!

Going out for a day sounds extremely stressful even with tremendous preparation!

Enjoyed all posts, very insightful.

Well, that serves me right! (Another interesting expression)

Was so busy thinking about all the genetics debate stuff that my shopping trip to get the lunches for people was rather more interesting than usual.

a) Dropped items all over floor in chemists
b) backed into a display in the chemists and knocked everything over
c) Panicked in shop when they couldn't get the security tag off an item and I thought I was going to have to go through the alarm scanners with it still on. I don't cope with the alarms

But the very nice lady and man in the shop spent 15 minutes solving it for me (phew).

I think I need a cup of tea now. Maybe quite a large one.

.... and a lie down.x

re: the idea of making this into a book - they'd HAVE to let you put in the emoticons if you made it into the book... I too, really enjoy reading these posts.

Emoticons? Brilliant idea!

Meantime...

Amber goes to the cinema.

Step 1 - check online entries for times, all possible reviews for film. I know the cinema really well. Won't go to one I don't know without experiencing huge, huge fear. We tend to choose quieter performances where there are less people about. If there's background noise, I can't hear anything on screen.

Step 2 - get there with dh. He gets the tickets, though always worries about what to say. We queue for the popcorn. I always have popcorn. It's a ritual thingy for me....except the display has flickering failing lights on the soft drinks dispenser and over the popcorn, so I can't look at it or get the drinks or popcorn myself and dh has to do that too

Step 3 - find the cinema room it's showing in. There are ten of them, and we're in one we haven't been to before. Oh heck...new layout, new chairs, different seating angle! Scarier than scary! I cope, just. The seats are all very slightly squeaky so I try to stay very still indeed in case it squeaks again. Praying that other people stay still too.

Step 4 - people pushing past to get to their seats. Awful. I tend to fall over in the dark - balance problems - so standing up to let them past is a real problem unless I remember to balance the popcorn with me trying to grip an armrest too.

Step 5 - The Trailers. There's going to be a new Star Trek film! Oh joy!!!

Step 6 - interpreting the film. Well, there were some actors and actresses, and things happened. Some of the actors looked the same as other ones, so no idea which they were or what the film was supposed to be about, really. Recognised the most famous two actors as I've seen them many, many times before. . No idea who dunnit, or why, but it makes it more fun to watch the film again since I never know what's going on. But I particularly enjoyed the scenery, the necklaces worn by the actresses, counting the lights on the ceiling in their building, and the bit where one actor was trying to hide from another one in a very illogical way

Meantime, I noted that the popcorn had been baked in three different batches and they'd mixed them together assuming no-one would notice. Huge huge difference in flavour and texture, but others don't seem to notice/mind/care. Oh well.

The bit where Amber's coping mechanisms failed.

Is life always navigable for an adult with an ASD even with support services and years of painstaking learning? Nope. When it crashes, it really does.

You know how it is when you sit down to a computer that was working just fine yesterday and today you load one extra program on it and get a load of ERROR!!! warnings and your printer produces a load of weenfcowehrfnxoihr*&$%$ tkwep&&&^odshjxjnpojd instead of words? And nothing you do seems to make a bit of difference to it - not switching it off, not giving it a good whack with a Microsoft manual?

Catastrophic thinking crashes are similar.

People on the autism spectrum can't cope with change very well. I can be panic-stricken if my breakfast cereal has changed, let alone anything else. So have a look at the stupid things that I've tried to cope with these last few months:

A dh with an ASD who is still recovering from a brain haemorrhage where he nearly died three months ago, and still needs a lot of support
A ds with sn who is doing GCSEs and needs a lot of support
A business to run
A school governorship to care for
All the voluntary work associated with autism spectrum advice including national and international roles and memberships plus conferences and speaking events
The death of two dogs including one that was providing autism support
The death of two friends
A business that has to move to new offices because its landlord has gone bust and we have to get out fast
The absence of my autism advocate, whose child has died
A brain that only sees words and numbers in pictures
A brain that can't bear making mistakes
A brain that drops every bit of info about someone if their name changes or they meet them in a slightly different place, then can't remember what the right thing is to say to them
A brain that obsesses about things that it's got wrong for days and weeks instead of getting a grip on itself, and needs constant reassurance from support people to know if a situation is something they can handle or not.
A brain that doesn't have a common sense centre at all, just row after row of filing cabinets of facts and some clue which order to display them in.
A brain with no people bit to it - all the people info is stored (without my permission) in spare corners of my brain where I have to crawl over the debris to get to the info, very slowly and with limited results.
Trying to say the right thing to all my lovely friends without upsetting anyone.

Result of total amount I was trying to handle - crash. Not very surprising when I list it out, I guess.

It's taken a huge number of people a long time these last two weeks to get me refocused. I'm dropping some of the work I do, because I've realised it's pushed me too far. Far too far. And I'm taking on more support, too.

glad your taking step back and giving your self some time to recoperate

Nice to 'see' you amber.

glad you are feeling better. but do not do too much.

Thank you so much for sharing your experiences Amber. Wow. I really do feel privileged to read them, to laugh with you and cry with you. I definitely agree you should write a book, complete with emoticons, but only when (if) you have the time and things feel more settled!

really good to see you back amber glad your taking the right steps to make you feel better

That's a hell of a lot for you to cope with . I've said before that one reason I think I personally cope as well as I do is because I live a very restricted life and keep to what I'm comfortable with.
Not sure if I do the words and numbers in pictures thing at all. See, if I am thinking of a word (to spell it) I see it written down in my head, which makes spelling quite easy, and if I'm thinking of numbers I think of them written down in a line. But I don't think, for example, of the number three represented by a three leaf clover.
If I'm just thinking, then everything appears in my head like a film, so I do "see" pictures then.