A day in the life of Amber

[amber32002]

I wonder if it would be of any use to people to occasionally see what life's potentially like for a child with an ASD when they grow up? It'll only ever be one example (mine ) but it might help to explain how each day 'feels' for me...and bits would help explain life for anyone on the autistic spectrum, whether LFA or HFA or any other sort.

Today, 5am. Oh no, I'm awake again. Always been a very light sleeper. Try to get back to sleep for a little longer, but it's difficult because my brain automatically starts downloading all the info and planning for the day ahead (grr). Must have got back to sleep, as it's 6.30 when I next look at the clock. Attempt to pick up dressing gown from floor. This takes three attempts, since I'm not focusing on what I'm doing the first two times. Get downstairs and let dogs into garden and do the whole dog-feeding-kettle-on-dog beds-tidied-computer-switched-on routine. Feed dogs. Make cup of tea. Am feeling rather brave, so decide to try a new breakfast cereal as part of my "For goodness sakes try something new once in a while!" plan. Sit down at computer, take a bite of the new cereal, yuk. Urk. Horrible. Crunchy, too sweet, rough, strawberry-smelly, urk. Dogs have most of it. They seem happy. Answer some messages on the computer.

7.30. Better wake hubby up. Son's on half term now so at least he can sleep in. I now have the shower challenge. Showers involve water, which is wet, and the shower hurts. And the soap tends to get away from me. And my sense of balance is not good, so I take my life in my hands in any shower with a wet surface to stand on. Then there's the rough towel hazard too, even the ones that I wash in extra softener feel like sandpaper. And don't even talk to me about the toothbrush and toothpaste thing and how overwhelmingly minty and painful that is, but it all gets done.

Next really big challenge, the clothing. What to wear. I tend to have ten tops all the same but in different colours as that's easier than choosing different tops. And lots of the same trousers. Everything has been carefully felt and examined in the shop to see that it's very soft and non-scratchy as possible. Which colour...arrghh...can't wear the same colour every day, as that's Not Done so I have to choose one. Then, the hairbrush hazard. Hairbrushes hurt. Makeup next, which at least I can choose for being the right texture and non-smelly ones, though it's taken years to practise putting it on without having to take it off again because I've made a mistake with it. Get a hug from hubby, who's an absolute sweetie (he's ASD as well). I don't trust a lot of people to touch me, and unexpected hugs are always 'painful', but if I know I'm going to hug, it's fine.

Shoes...hmm. I have a 'blind spot' about shoes. I can't wear heels as I fall off them, so that means I have to wear flatties or boots, and any new shoes pinch, dig and hurt, so it takes ages to get the courage to wear a new pair anyway. OK, boots it is today, old familiar ones, polished to some sort of standard.

I'm exhausted, and it's only 8.15am. Now for the rest of the day...

Amber thank you so much for sharing your morning routine, it must have taken some courage, could this be one of your "try something new once in a while"?

Glad you can enjoy hugs from DH!

Definitely something new on mumsnet for me, yes! And hugs from hubby and son are fine, thank goodness. I can even cope with hugs from one of my friends without too much need to hide afterwards.

It's now 9.10am, and I'm in the office and strictly speaking am supposed to be looking at the accounts, but since I've got a meeting to go to in a few mins, I'll do this instead. Have had my half hour of relaxation in the car by playing my absolute favourite music on the way into the office. If it's just me in the car, I can play the same track ten times if I'm lucky. It took AGES to learn to drive, as there are SO many rules and people do very unexpected things, but I learned after 5 years, and I love it. I can't recognise people, but I can recognise their cars and number plates. It gets awkward if someone else is driving their car, of course...

I never look at pedestrians or drivers - just at the cars, road signs, patterns, lights etc. Often people say "You drove straight past me the other day!" Oops! Luckily I'm one of the women who can read maps and has a sense of direction, so that was a huge help. (Lots of us can't drive as there's too much to see/hear/think about/co-ordinate. An automatic car helps). And I get to open the office in the morning, which means I get some time to myself, just me, to plan what's what and put the kettle on for the staff teas and coffees.

thanks for sharing that with us amber.

i thought it was only me that had a phobia of showers and i have same tops in different colours too!!!!!!

my sistes have never understood why i leave the house without make up on,i will wear it for special occasions but i dont like the feel of it on my face it feels "not right",i have been wearing the same eyeshadow colour since i was 15-why change it i like it,!!!!!

amber thank you for sharing its helps me understand ds more when he starts to paddy that he dosnt like the way i put his coller this morning

Amber your posts are always a huge help to me in understanding my own aspie DS who has just turned four. Especially when your child is young, it can be so hard to communicate with them about whyy they are upset, how they see the world, especially as many of our AS children have communication barriers too. So thank you soo much.

Have you ever considered writing a book of your experiences?

I am also noticing the more I read up on it that I have a lot of aspergers traits myself!

im learning to drive as well,and im finding it very confusing,my instructer tells me im too busy wondering what is going to happen next or waht the car behind me is doing--hmm wonder why that is then!!!!

Im usually a bit reluctant to read 'diary lives' it always seems a little intrusive...

But you never fail to give me a peek into something thats never occured to me. And how right was i to shy away from anything other than soft t-shirt tops and comfy jogging bottoms for DS5, although he doesnt cope well with trousers and they dont last long on, but dungarees must feel like a straight jacket!

Incidentally, i have problems in the shower too, if i have my eyes closed then i cant really tell which way is up and wether or not im leaning if that makes sense - i usually stick my feet firmly at the corners so i can feel where the bath is... that probably doesnt make sense at all.

Amber, can you please explain to me a little more about sleep? DS wakes up at full speed too, several times every night, and I just can't get my head around it! I do get up in the morning though and immediately start 'being busy' - but not in the middle of te night/early hours!

THANK YOU! sammyk - yes this was the part that was really interesting for me too - i think if i'd read this a couple of years ago, i might have had more sympathy for ds's waking at 5.30 every day! and at full speed too.

this morning he came crashing and banging into my bed, i had no idea what was going on! he had brought his laptop in to snuggle

amber thanks

I have always touched my friend's dd's shoulder and thought that was ok now I know better

And I appreciate it triple as much that she now hugs me. I stupidly thought that she somehow got 'better', now I know that she is just working really hard to play by the '''''normal''''' rules

thanks again x

Amber, I found this really really helpful in trying to understand DD2, she's tactile defensive and has auditory processing issues along with a host of other things. I found the shower, clothes and towel issues very interesting and can now understand why DD2 reacts like it's so uncomfortable for her. Luckily she's very cuddly, but that's only since doing the deep pressure brushing and joint compression.

Thank you for sharing your day, I feel quite tearful now that I've been putting her through all this discomfort and thinking she's just being silly.

I think you should write a book too.

I sahre a lot of your aversions- showers (house with no shower ehre- heaven LOL), 4 pairs of trousers of which 3 are black cords and despite having trained as a make up artist its special days only too- I also need a structured routine to remember things like hair / clothes tidy- there's simply no imortance for them in my mind design iykwim.

But then its no surprise that a mum of 2 asd has these traits is it? C'est la vie!

Thanks Amber, have you thought of maybe starting a mn blog? It would be great to reed about your evryday life and how you cope with different things.

A lot of that is similar with my own experiences Amber, but I have some differences. I frequently forget to do things like brushing my hair, cleaning my teeth and washing my face, in fact I have never managed a day in which I've remembered to do all three. I hate the feel of water on my face, but toothpaste doesn't bother me, in fact the stronger the better (I think I'm addicted to Euthymol ). I also eat the toothpaste as I can't stand the sight or sound of spitting it out. Makeup and hairstyles beyond a bunchie in the morning are too much for me to manage. I've tried hairspray in the past and it was too much for me.
I do not notice a lot of things around me because I hyperfocus on a very small area around me. I have the same little routines and rituals that I've followed for years, if I'm doodling for example there has been the same drawings (a shaded box, a vase, a profile of a face and a tent/house) all drawn in the same way since I was 13. I daydream frequently. I find myself "shutting down" if visually and aurally things get too much for me, to the point where I can't even make the decision to move away from the commotion. Clothes shopping is a nightmare for me, I have just been given some clothes by an online friend and I'm extremely grateful for her as I was down to one pair of trousers and three skirts, all of which were getting very worn.
I think I have self imposed a very regimented, very quiet, very restricted lifestyle for myself. Like you I don't like changes so will avoid them as much as possible. Ironically my self care skills have improved since having the lads. I can allow for some of my difficulties now, for example. Eg I will have mass baking/cooking turns so that I can build up a stack of things to defrost from the freezer, rather than having to make the meals all the time.
I'm hypersensitive on my skin, but only to the extent of being touched by other skin. Clothes rarely bother me, beyond a few fabrics and I prefer to be covered rather than have bare skin.

I don't mind people asking any questions they like. If they're not something I can answer, I'd soon say so.

There are blogs?? (shows extreme ignorance of mumsnet on my part). Are the blogs searchable by the internet, though? .

Sleep...hmm. For me, I tend to wake up and immediately my brain starts planning the day ahead. Who will I meet, what do I need to do to get there, what do I take, what do I say, what strange things happened yesterday that don't make any sense at all so far and how do I find the information I need to solve those. I don't get any choice about it really - this is just how my brain works, like a computer switching on and loading all the different programs it needs to work itself. Often that's it - it just won't go back to sleep again for another hour and a half (grr). Meditation etc makes no difference at all. Much worse if it's a change of bedcovers to something scratchier, as that'll wake me up. Or if hubby's snoring in which case it's the spare room for one of us .

So...drove to meeting for an hour. Wonderful. Countryside, birds, beautiful colours in the hedges, favourite music playing, just me. The meeting is with a very familiar person who knows I'm ASD and who adapts it so I can cope really well, and it's in a familiar room. She'd even sent me photos of it and her before we first met so there were no surprises (bless her). I have to remember all the eye contact and body language to be polite, though she doesn't mind if I forget it for a while. She's trying to understand how my mind works, and always has loads of questions about how I'd react to this situation or that one. Much puzzlement from her, because it's so very different to anyone else she's worked alongside. She has learned to ask short questions as I 'lose the plot' with long ones. I remember to ask her about her and her holidays, too. (SO tempting just to talk about me, but it really is rude to do that. I am interested in other people, it's just that I don't know what they're going to say, which is scarier. If I'm talking, i know what I'm going to say ). Another hour's drive back again. First 20 minutes fretting about what was said in the meeting - did I say all I needed to say? Then I relaxed the rest of it. Well, not during the bit with the big lorry, but that's another story...

Back to the office, where one of the overhead lights is flickering. Engineer called. I'm trying very very hard to ignore it, but it's like being on the front row of a fireworks display. Can't switch it off as it's too dark today. Might go in the conference room to get away from it. Lunch: Tuna salad. My usual. I won't do a lot of talking to people this afternoon - so I'll be doing some work with cashflows. This is where my brain is very handy - I can spot patterns in figures that others find much more difficult, and I can work immensely long hours without tiring if it's something familar. Because it's our own company, I can set a working pattern I can cope with. Don't ask about what happened when I worked for a council...

Great Amber!

I have picked what i identify with and why!

You said "Always been a very light sleeper. Try to get back to sleep for a little longer, but it's difficult because my brain automatically starts downloading all the info and planning for the day ahead "

I wake very easily all night at the slightest thing- aware i am awake at least every 2 hours...once my mind starts 'thinking' i cannot get back to sleep.

You Said: Attempt to pick up dressing gown from floor. This takes three attempts, since I'm not focusing on what I'm doing the first two times.

I often go to pick things up off floor or from high shelf- and have 2 or 3 attempts! (i also pour boiling water OUTSIDE of mugs!!! Or when tipping sugar into jar- it flows over the side. But the key bit you said is the not being focussed...as when i do these things i often don't realise for a second or 2...meanwhile sugar is all over worktop....sometimes putting the lid on a bottle is a challenge too!!!

You said: Sit down at computer, take a bite of the new cereal, yuk. Urk. Horrible. Crunchy, too sweet, rough, strawberry-smelly, urk.

Food texture- particularily crunchy things are very hit and miss for me....and cereals i prefer DRY unless i have remembered to get the milk out far enough ahead so it is room temp. However i do drink ice cold squashes.

You said: And the soap tends to get away from me. And my sense of balance is not good, so I take my life in my hands in any shower with a wet surface to stand on. Then there's the rough towel hazard too, even the ones that I wash in extra softener feel like sandpaper.

We tiled our bathroom floor - and when its wet I AM THE ONLY ONE WHO SLIPS ON IT (i actually have to watch where i put my feet and narrate to myself to do so...then i don't slip...the focuss thing again...i cannot walk on that floor and talk etc1

You Said: What to wear. I tend to have ten tops all the same but in different colours as that's easier than choosing different tops. And lots of the same trousers. Everything has been carefully felt and examined in the shop to see that it's very soft and non-scratchy as possible.

THIS IS SOMETHING I AM REALLY GLAD YOU SAID.... cos when i buy clothes...I WANT to buy every colour available- in the one style...i get very irratated when one size/colour is not available- and have oftened bought any if 1 colour missing. And when i stand there infront of my jeans....i tend to wear the same 2 or 3 which are very silmilar...yet i cannot throw away the others.....

You said:I don't trust a lot of people to touch me, and unexpected hugs are always 'painful', but if I know I'm going to hug, it's fine.

I often innitiate a hug...usually people look shocked...cos its probably not appropriate.... and i don't feel anything...and have been told i hold too tight....yet if somone touches me i feel trapped

You said: Shoes...any new shoes pinch, dig and hurt, so it takes ages to get the courage to wear a new pair anyway. OK, boots it is today, old familiar ones, polished to some sort of standard.

same boots and shoes for 2 years... slippers...well i have at least 10 pairs in action....all same style.....

Then you said but it all gets done.

and that is the key point here for anyone worrying about their child.... as an adult i am accutely aware of all my OCD/AS/ADHD behaviours...and the difference is as a child i hated myself- as i felt ODD...now i understand.... and have insight..... and function.
And amber saying about buying clothes in same colour just hit home- as i had never realised i did it really....and when i have noticed (at home) the same shirt in 3 colours- i have felt guilty!!! So Amber has LIBERATED me!!! I CAN where the smae thing every day...if it's a DIFFERRENT colour!!!! NO GUILT NOW!!!!

my head is like a 'flow chart'...every possible comment i can plan and answer to...every possible response to my words... remember to look at who is talking to me...remember to nod and use the appropriate facial expression

as a child always being told to 'wipe the smile off my face'...when something sad happened...or critised for not 'looking pleased' at something everyone else is enjoying.

This has been really interesting, I'm only back in from work.

The insight into an adult's life is totally fascinating! It fairly puts things into perspective for me.

I have loved reading all the stories.

Amber - definitely a good idea putting your before 9.00am routine down so that we could read it. What about evening time?

I definitely share some asd traits. I have a thing about clothes - ever since I was a child, clothes itched and I called them "friddy" - still do!! I can't wear makeup very often (except special occasions) because it feels foreign - like it is just sitting on top of my skin - horrible and I absolutely hate kissing people either a hello or goodbye. I also can't wear high heels because I walk ridiculously (knees bent the whole time, it's a horrible sight!) Anyway, enough about me!!

brilliant, am going to re-read this later when I have more time to digest it.
Amber, to echo the others, please write us a book. It's totally fascinating and enlightening to read!!

Can't do evening yet - haven't got there! Might have to wait until tomorrow for that one.

Can do "Amber at a conference last week", which might be vaguely entertaining/informative. The task - to get to a conference in central London, help set it up, listen to the speakers all day, then go home.
Sounds fairly easy, eh? I'd got someone else to do the speaking for me, so no pressure there.

Before conference ? email the conference centre, get them to check all the lighting for flickeriness. Get agenda so no surprises. Check the appearance of the building on Google, check plan of building, photos of building. Check train times and maps, recheck. Check again, just in case.
Get train. Sit next to window so I don?t have to find some place to look that doesn?t involve staring at people. Brace myself for someone sitting right next to me (arrgh). Get off into the hellish noise that?s Waterloo station. Crowds, noise, more crowds, more noise. Total overload. Yuk and more yuk.

Get out to taxi rank. Oh no, no queue. This means I have to think what I need to say really fast?practise it a few times?where on earth do I stand when saying it, though??! Phew, manage to get into taxi without colliding with door. Fail to close door (oops). Try again. And again. Taxi driver now rolling his eyes (subtext ? ?we?ve got a right one ?ere?.). Taxi is easier than extremely scary underground with packed people and whooshing noises and sudden breezes. Manage to pay taxi driver, which isn?t easy, as I tend to drop change everywhere unless I?m really really concentrating.

Oh no , I?m not outside the building I want. I?m two doors away. Ok?stay calm?can solve this. Find building. Go to reception, locate loos, locate room we?re in. Set up room, get everything ready (hooray!). Busy myself with tasks so I don?t have to make random conversation with people. I'm good at tasks, as long as I know what they are. Conference starts. So do roadworks outside, which means now I can?t hear the speaker. Everyone else can, but I can?t, as it cuts across my hearing. Half way through, the projector starts flickering. At this stage, only professionalism stopped me from running out of the room and hiding in a cupboard for a while. I shut my eyes instead.

Lunch! Get food. Not sure what it is. View it suspiciously. Not sure if I can manage a drink as well - might spill it. I really need a mug, not cups and saucers. But, alas, there are now a number of people who have realised I?m there and want to speak with me about Important Things, so no chance to unwind. Must...remember....eye...contact....!

Oh well?the journey home should be straightforward, eh? Nope. No taxi rank. I don?t know how to stop a taxi if there?s no rank. Never done that. Too far to walk....Oh no, the underground!! How do I buy a ticket for the underground? Watch other people really carefully, figure it out, get ticket (hooray!). Get to barrier, watch what other people do with their tickets. Lady in front of me puts hers in, barrier opens, she steps forward, the light goes green again, I put my ticket in?and she?s still not through the barrier in time, which is now trying to close on me and manages to eat my ticket. Arrghh. Now I have no ticket. What on earth do you do? You might know what to do, but I didn?t. No idea. Not a thing. No way to transfer useful information on problem-solving, as this is a New Situation and to my brain, no previous information applies. I was rescued from state of panic by a teenager in a hoodie (never let it be said that youths are bad people!) and a security guard. Now very, very overloaded and exhausted, I make my way to the platform. Scary whooshing of air, lots of people and echoey noise, crowded train?.yuk. And now I?m not sure I?m on the right one anyway?phew, I am. Get off, and face the Escalator Challenge. I fall off escalators as they?re totally hypnotising. The stripey pattern and light reflecting off it just stops my brain working. This could be very difficult. Just about stay upright at the end. Oh no, another barrier to go through?approach it warily, but this time it behaves itself. Find my train home, trying SO hard to ignore the huge noise at Waterloo and the crowds and the smells and the pushing and shoving. Find a quiet seat, get out a copy of a magazine full of car statistics to look at, and absorb myself with that for an hour and a half. Then a quiet walk to the house. Can?t manage to really say anything to family ? far too overloaded. Hubby volunteers to go out and get some food, as it?s clear no-one?s going to get fed otherwise. Get a hug. Very very quiet day the next day to recover from all of this. My life is never dull, that's for sure

Oooh, it's interesting how many mums are thinking "hey, that sounds a bit like me ..."

I'm loving reading what others say about their lives, too.

Always interested in your fascinating brain Amber, thanks.
I've got a tip for you (and anyone else) about cups and saucers - you are allowed to decline the saucer! Took me ages to realise this, now I just say "Oh no, I'm far too common for a cup and saucer thanks" with a smile and put it straight down. Then I can put both hands around the cup to steady it while I walk off. A backpack-ish handbag / changing bag is very useful if you're not confident with manual dexterity/focus.