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...

BUCKETS.....Hmmmmm...I ponder..... is that why i always wear my bag diagonally over my body...so it never slips off my shoulder??? (as it did once in a cafe- causing me to tip the tray- and the plate landed on someones dinner!)

...or is it cos i cannot trust myself to pick it up at shop tills when i put it down!!!

Also at cashpoints I always count 3 when the money comes out...1 is for my cash, 2 is for my receipt and 3 is for the card.....

several times in the previous-to-doing-that years.... I have 'donated probably in excess of £300... (£50 maximum at a time)...to whomever used the cashpoint next....and millions of times, taken the cash but left my card!!!

I'm finding this thread totally facinating. I feel this is a real insight into my DD2's brain. If it's ok I have a couple of questions. When talking about your conference you said the road works started at the same time as the speaker, everyone else could still hear but it cut across your hearing. Do you mind explaining more about how it sounded to you, as this is DD2 to a tee!

Also, how does it feel to you when you make eye contact? You said you had to make yourself as otherwise it's rude.

Thankyou so much for this, I agree with the blog or book. I'd love to read it.

I'll be rude then. I can't make eye contact easily as it's uncomfortable and I lose understanding of what's being spoken. I'd rather be seen as rude and still understand and be able to reply than personally nod and look along without a clue.

do you need to look at the mouth to still understand or away from the person completely?

Bullet123, well said! but alas in some of the work I'm doing, it takes a long time to explain to people, and they have NO clue about autism and can come out with some extraordinary ideas if I start mentioning it, so it's easier to do the eye contact, which I do in bits, whilst doing tasks as an excuse for not looking at them. Or I unfocus my eyes so it looks like I'm looking at them when I'm not really. Or I stand so their back is against the light so I can't see their face. It works. If it's people who know me, I can drop the eye contact completely.

Eye contact - they now think ('they' being the scientists) that it's because eyes constantly flicker. They do - they're always making tiny movements, and our eyesight is often so sensitive that it's like looking at a strobe light for us.

Roadworks: Most of us with an ASD can't filter out sounds. This is SO easy for other people, as I understand it. If you're in a restaurant and there's guests all round you and a load of people on the other tables, there'll be 20, 30 voices to hear. But you can still listen to just the person who's talking to you on your table. How?! Seriously, I've no idea how you do that. To me, it's one huge sound. With things like roadworks or air conditioning units or noisy computer fans, they compete for the same airtime as the speakers, so whatever's being said is just a mystery to me. I have to put superhuman concentration into listening to just one person in those sorts of situations, made worse if it's a group and I have to switch between people as I need to 'retune' into a different voice which means I've missed the first bits of what they were saying.

I also had to write to a colleague afterwards, to apologise that yet again I hadn't realised that she was Person X. I've known her for years and still can't recognise the poor lady!

Me? I can understand fine if I hear things most of the time. Very rarely (about once or twice a day or once or twice a month dependant) I lose understanding regardless, but apart from that, no trouble.
It sounds as though you struggle more with things Amber, than I do, partly because you do care what others think about you and you do try and fit in as much as possible. Whereas with me, I'm not looking to be very social (a little social in small doses is fine), don't care what others think of my appearance andavoid difficult things and situations as much as possible.

Bullet123, yup, I'd agree that it sounds like me .

Just wondering, while we're having a Q&A, is it at all common to have a problem with reading under pressure? Like say to lose the ability to read/concentrate on a menu in a restaurant? I ask as I've been watching my FIL with interest since my DS got DX'd and he seems to lose certain skills when anxiety hits. Wondered if it was more evidence for my own (private) theory about him.

I could never handle telephone enquiries at work - I'd try and write things down and just get random words, writing any kind of reference number was awful. I used to get things so wrong, I think it was a combination of anxiety and really hating the telephone - bit like amber was saying when she doesn't know what the other person is going to say in a conversation. I once told my Boss his ex-wife had called and he had to ring her back...it wasn't his ex-wife

This is very interesting and I appreciate your posting. My little boy who is seven and has AS seems so different though.Sleeps heavily, loves hard pressure, hugs, rough drying, being squashed, has no issues with clothes (barely notices what he has on except doesn't like stuff round his neck, but I'm like that too. MY NT three year old dd is much more picky, has far more rules and is more likely to strop if things aren't just right! So funny.

Buckets, not sure re the reading thing.
Seuss, I usual don't have have a clue who I'm speaking to on the phone if they don't say their name, not even if I've known them years. I wish people wouldn't say "Hi, it's me!" Yes, it is. But which "me" are you??!

Mabanana, your son is the opposite, which is certainly not uncommon. Instead of being wired up for hypersensitivity, some are hyposensitive and seemingly completely unaware of pain or sensation unless it's 'overdone'. Depends which bits of the brain got the superfast broadband wiring to communicate info about the outside world back to the brain's command centre, and which bits of the brain got the "yoghurt pot and string", I guess.

Evening: Spent some time looking a nice bit of research and the statistics about it, went home (joy! More of my favourite music in the car!), got a hug from teenage son, noted that my science magazine has been delivered (excellent!) made dinner (I tend to 'get stuck' on what sort of veg to use, so opt for the mixed veg packets so I don't have to make a choice...). Hubby arrives home. Read newspaper (share prices, court reports, interesting facts), exchange a bit of info with son and hubby. Hubby and I don't do eye contact. Think how often you look at someone else to find out what they're thinking and feeling. We don't and can't. We have to say really clearly how we feel or what we want to happen next. (It's a real problem if one of us can't speak because we're overloaded, as we just can't explain and can't see each other's expressions either.)

Hubby does washing up of pans (he hates it - water, dirty plates, clanking noises), son walks dogs (it was my turn yesterday), I stare at TV guide to find out what on earth to watch. Decide to watch a DVD later about the history of Venice.I look at internet and catch up with news and opinions on three autism support community boards (very handy for when I get really stuck on how to solve some social situation, as often someone else has solved it before), then check mumsnet and answer 15 emails from friends and acquaintances, some of them asking for info about autism things. Hubby's off doing some of his hobbies for an hour so he can unwind. He takes himself to the spare room so he doesn't have to do any social interaction for that time. Apoarently son had been talking to me for a few minutes, but I didn't notice. If I'm concentrating intensely on a hobby or interest, my other senses switch off, so it must seem really rude of me not to answer. I just don't hear him. I do it a lot. He's used to it. He knows to wave a hand in front of my eyes to get me to realise he's there.

A nice glass of wine is produced by hubby (yum!) and we sit down on the sofa together to watch the DVD for an hour. Buildings architecture and history is something we both love. Sometimes we'll try watching a soap on the tele, just to see if they make sense yet. Not a clue. Everyone looks the same, and uses the most bizarre expressions, e.g:

"Well, life ain't a bowl of cherries for us either, innit, and if your son's not back by eleven like he promised, I'll bl*dy murder 'im"

Apparently no-one is in the least bit worried that the person has just announced that they are going to murder someone. Why not?? And why would their life being a bowl of fruit? It's a mystery. Fascinating...but strange. I have a book of expressions people use so that I can find out what they mean. It's next to the books about body language and etiquette. Bowl of cherries.... - meaning life is good. Aha. I do hope she doesn't murder his son, though. (I remember us going to see that film about the WallE robot at the cinema this year. All around us, people in tears over the robots trying to hold hands. Er, why? I'd pay someone not to try to hold my hand. I understood his concern about the environment and justice, though).

Around us, bookcases aplenty, filled with factual or science fiction books, and not a single picture or photo of a person apart from one of son, not a deliberate thing, but noticeable. Pictures or ornaments of people aren't relaxing for us. We'll both choose pictures of birds or buildings or animals instead. Put dishwasher on (no, not literally, though that's the image my brain always produces - me wearing a dishwasher ), then tidy the house.

Bed at about 10.00 as we're both tired, having experienced the hazard of water, toothbrushes etc again. Suspect son was chatting to mates until much later, but it's the holidays. Woke at 12.15 and 4.30 (drat). Got back to sleep again eventually.

Again, this is very interesting to see the hurdles you face each day, that others totally take for granted. I'm afraid I have another question. Please tell me to bog off if it's getting on your nerves. Re the tooth brushing, I've never been able to brush DD2's teeth as she's tactile defensive in and around the mouth area (she's 16 mo), and has only really had teeth for 2 months so not too dire, but really need to soon). I've been given facial massage and songs and silicone brush for her and it just doesn't work. What does it feel like when you brush your teeth and have you any advice on how to get a brush or even my finger into her mouth? Sorry, that's my last question!!

I'm happy to answer questions on just about anything at all . What does it feel like? A bit like someone brushing my gums with a wire brush,to be honest. And the toothpaste smell and flavour is awful, too. Tried different brands, but with little success. Sheer determination means I'm very careful with my teeth as an adult, though.

Not sure what else to suggest re your DD2, alas. Have you tried different flavour toothpastes to see if she likes any of them? Persistence and encouragement will work eventually, which is the only consolation. Someone needs to invent the human equivalent of the tooth-cleaning chews they give dogs, so youngsters can nibble on them and clean their teeth at the same time and it'd be safe to eat. Unless they have, and I just don't know about it

Anyway, people might be pleased to know that I'm not writing more about my days on here unless there's questions, but there is a book being written

mumgoingcrazy- our son always hated having his teeth cleaned by us to the point where we couldn't, but was (weirdly) fine with an electric (child's) toothbrush which we introduced when he was about 3 or 4.

She's a bit young at the moment maybe, but might be worth a try when she's older.

Interesting...reading this I've just realised that I have several sensory/touch issues that I've never really thought about - can't wear wool, can't BEAR being "bundled up" (can't wear shirts as the collars make my neck ache, can't wear too many layers of clothing). DD has never liked wearing trousers...I thought it was to do with being girly but now I think it's actually to do with preferring the feel of tights and skirts because she has more freedom of movement - I don't think she likes the way trousers bunch around her legs. OTOH we're all very touchy feely, but I think DD seeks a lot of sensory stimulation and gets real reassurance out of being cuddly.
DH will often take himself off to be alone or will go and play on his keyboard with the headphones on, and we could all happily go for entire evenings without speaking, so sometimes it's not SO much of a surprise that DD is quite self-contained!

Thank you Amber and Jimjams, I'll keep going with all my facial massage etc. I did get my finger in her mouth the other day but she looked so stunned and looked at me as if to say "you can get the hell out of there". We'll get there in the end.

I like the idea of the electric toothbrush, I wonder if she'd actually like it. Anything is worth a go.

Thanks again

Amber, brilliant - good luck with the book.

DS2 flicks the toothpaste off when he thinks that I am not looking but I always find it at the bottom of the sink. I might try the electric toothbrush - you never know!

Have been given a copy of a book by a guy called Marc Segar: Coping, A Survival Guide for People with Asperger Syndrome. It's excellent and really informative!

Many thanks

Ds1 has always been fine about having his teeth brushed, he keeps asking to do it and will sneak toothpaste if not stopped. He gets through a toothbrush in less than two weeks, but they are the bog standard soft bristle ones, so I'm wondering if the tougher bristled ones would last longer or if they'd also meet the same quick fate.
Ds2 used to hate having his teeth brushed, until I let him have a go himself. He makes a complete mess of it, but he now tolerates me brushing his teeth for a bit and then happily has a try himself.

Our paed said it is quite common for ASD children to be much more o.k with electric toothbrushes. When someone is brushing their teeth with a manual toothbrush there is no rhythm or pattern to when they are 'stabbed' with the toothbrush. With an electric toothbrush at least the vibrations are regular and predictable. The working of the ASD mind never cease to fascinate me.

bullet it sounds like he brushes either very hard or very much or both. my dh has just been told by dentist that he must use a soft brush as he is busy damaging his enamel with the medium one.

so maybe not a great idea to swap to a tougher one?

i have seen 10 packs of cheap brushes, forgot where, think my local pharmacy. Maybe a better deal in the long run.

I must say I find the idea of the electronic toothbrush fascinating, it does seem to make sense in a way.

www-users.cs.york.ac.uk/~alistair/survival/

That book, the one by Marc Segar, is available online from that link if people want to read it.

Ooooh, one last thing, because I know how many of my friend's children have gone wild in supermarkets, so I wondered if the Amber's Handy Guide to Going Shopping might be useful, as people can always not bother reading it if it isn't...

Shopping. Not my favourite thing in the world, but as a mum with a teenage son and hubby and two dogs to feed, something has to be done. Hubby is No Good at shopping. He brings back bizarre things, bless him, and then needs hours off to recover from it.

Early morning is the best time, as it's quieter for me. I get in the car, armed with a variety of recycled carrier bags, and drive to my local huge supermarket (whose name shall be nameless). I drive into the car park, and brake, much to the alarm of the driver behind me. I realise there's about 400 empty spaces and I don't know which one to choose. Oh no...which one...arrghhh. The man behind me is waving his hands around in a way that I don't think fits with the Highway Code...better get moving again . I pick a space. It's the same space I parked in last week, even though it's about 100 yards away from the entrance and there's loads that are nearer. I know how to park in that space. I tend to wear pink for shopping. I find that people are more helpful if I do.

Into the supermarket, and into a wall of noise. Announcements, fridges whirring, people chattering, tills beeping. The smells hit me as well - bakery, fish, meat, veg, fruit, new clothing. And the sights, too: Everything is stacked high with colours, patterns, flashing lights. And there's a cleaning machine somewhere, beeping noisily. I'm rather scared of them, to be honest...Then there's the people. Loads of them. And I probably know loads of them, too, since I've lived here for years, but I can't recognise who they are.

Sometimes people say hello, so I use what I'd call 'standard conversation bits' to get through the situation, e.g. "Oh hello, how are you?" I can't go down the aisle for pasta as there's a flickering light over it, so that's something I'll have to do without this week.

Shopping trolley filled, I go to the checkouts. Which one?? Oh no, more choices...I pick one. The man in front of me has left some things on the end of the conveyor stand...Oh no, what shall I do? Does he want them put onto the conveyer when there's room? Is it rude to move someone else's things? I'm completely transfixed by the problem. Daren't speak to him - haven't planned what to say. Phew...he's moved them. Packing is not something I'm good at, as I can't co-ordinate what I'm doing or go fast. And asking for help is scarier because the person helping always wants to chat to me, and I don't know what they've packed where, and at this stage I am thoroughly 'out of spoons'. I cope, though I wish I'd taken along bags that are all the same shape, as I can't calculate what goes in which one.

Paying: Arrghh! I hate paying. I either drop the money, or put the card in the wrong way. And I have to remember all the social stuff too - the thank yous and the 'no cash back for me thanks' stuff, whilst smiling. The smiling is important. Well, it is for me.

Now to get back to the car. I get to the exit, and the alarm goes off. Someone please just put me out of my misery right now... I've had enough. I want to go home The alarm has gone off and there are security guards striding towards me, and I suspect the silly checkout person has left the bloomin tag on the bra I've bought. Yup, she has. Security guard wants the receipt. Here we go with another 'amber drops her purse contents everywhere' moment. SO many people now staring at me. I want to hide, or run, but of course you can't do that if you're in a shop with alarms going off as they'd think you were a criminal. It's sorted out. He's a nice security guard. The alarm stops. I'm shaking now. I need to go home, but I've still got to get back to the car, and put the shopping in it, and drive home and unpack it and etc. It takes me a long time to recover from shopping if something unexpected happens.

I even try a delivery service sometimes, but they deliver things I'm not expecting, or don't deliver things I really need so I then have to go out again anyway, or they squash things into shapes I wasn't expecting, and I have to answer the door to people I don't know, which is almost scarier than shopping. And it often costs more, too.

Apparently some people like shopping. I'm amazed. Next time I see a toddler screaming in the aisles, I'm tempted to join in

I am going to thank you again for this thread amber, and I am so pleased there will be a book!

There are loads of things on this thread that both me and ds do, helps to know we are not the only ones.

4 out of 5 adults on the autistic spectrum have never been diagnosed. I mention this just for interest, not because I'm saying anyone else here might be. But most of the women have never been found.

Madmouse, he chews on them .
I hate and abhor shopping. Anything other than food shopping I put off for as long as possible. With the exception of going to my favourite bookshop which is always very quiet and like stepping back in time. With the food shopping I have a list and just get the items on that list. I keep my head down because if I try to look around everything gets too much.