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...

Bookshops? Brilliant things. I could live in a bookshop quite happily. Mostly in the map sections, though just about any of the reference sections would do.

I'm about to show my ignorance now, but would you not read a novel? if not why?

Novels. Hmm...thinking.... If we're talking about me, rather than all people with an ASD, I read the Terry Pratchett ones because he is just SO funny and writes in a very clear and 'overdone' way that is much easier to follow. I can read children's novels, because the story lines are easy, and there's often pictures. I'd read them as a child, over and over again so that I knew what the story line was and there were no surprises. My sort of ASD is very visual - my brain works in pictures not words, so reading something that is pure words is a struggle unless it's a subject I know really well.

Most adult novels are a total mystery, because my brain also can't store personal details about people that easily. Suppose you have a murder mystery in which there are ten suspects. By the end, I still won't know what their names were, which one of them is the tall dark stranger or the short menacing newcomer, or why on earth they were or weren't motivated to kill anyone. Romances are a mystery because it's lots of people talking about love and relationships, whereas clearly they should be discussing the finer points of science or cars or some such thing !! Give me a nice book on theoretical physics with some accompanying photographs and diagrams and I'm happy for hours. (never a good topic of conversation at parties, I've found...)

I love murder mysteries . The 1920's or 1930's or older ones for preference and Agatha Christie's and Sherlock Holmes arethe best. Very plot driven, very clear cut, explains things very easily and only very loose dealings with things like relationships or character development.
Terry Pratchett books are good as well, I like spottin all the references in them (eg Albert being Albertus Magus, unsure of sp).

wow Amber. I find it amazing to read your descriptions of every day events - it really does give me more of an understanding of what it is like for DD1. Sometimes when i am busy and need to get on, I get so frustrated and angry with her for reacting to something - I feel as if she is being naughty but I think she is just overloaded. I know she hates noise and lights but didn't realise why. She is too young to explain what is happening for her but you have done so very well.

One thing I would like to know (if you can help), is that her headteacher says that in a group situation such as assembly, DD acts as though she and the head are the only ones in the room. She doesn't seem to hear or see the other children and acts as though it was a one-one meeting. Any idea why and what could help??

I can try...

I can only 'see' one person at a time. If there's a group, I have to completely 'unload' all I know about one person, switch to 'all I know' about the next person, and then carry on the conversation with them, then painstakingly unload it all and reload for the next person. It's totally exhausting. Imagine having a knitting loom in which you're knitting one pattern, then having to totally stop, load a complete new one onto the loom, then carry on. That's the amount of effort it takes to switch between different people. No wonder your DD1 prefers to keep attention just to one head teacher. The alternative is about the same as a mini epileptic fit from total overload in trying to work two or more 'knitting patterns' at the same time.

This is a very interesting thread, very enlightening.
It certainly is helping me understand my 5 year old ds2 and my 3 year old ds3. Ds2 appears to be much higher functioning than ds3 and can almost have a conversation but has alot more sensory issues and is much more defensive. He hates hugs unless I ask him if I can give him a hug, he accuses people of hitting him all the time, and is completely oversensitive to the slightest knock. Ds3 appears to not fell pain at all. They both seek out shiny glittery objects. Ds2 says it is for art, ds3 has just learnt to ask for '....ta', but they both love it.
I can also see something in myself, and have an extraordinarily high pain threshold, and can stand boiling water[i.e. tea] spillages on my hands. I am very clumsy aswell, and am forever knocking into furniture and even walls, and I constantl spill drinks when trying to drink them and somehow miss my mouth completely, puring the drinksome distance from my mouth so it spills in my lap, iyswim. I have never understand social conversation, and now live a very solitary life that I have sort of chosen, because it is all i can handle. I find it extremely stressful if I 'bump' into anyone when out and about, and will keep replaying the conversatin again and again in my head and out loud. I have done this my whole life, it is exhausting, but I have never been able to stop. I can't wear heels either, and hate shoe shopping, I always wear canvas shoes in the form of (....oooh have for gotten what they are called...with the star on the side )them. I have been known to go out in slippers on particularly difficult days. I very rarely give eye-contact, but now try to make a pretence of it rather than look in the opposite way.
In fact I suspect I may have had a diagnosis as a child, but my mother never told me as such, since I regularly saw a psychiatrist, and I never really spoke until I was around 4, I remember my nursery teacher being shocked when I said my own name and read it for her .
Interestingly I also studied Law, and in late years economics/history.
I always felt a freak growing up, a bit of an outsider. Only now, I understand myself, and through helping my children, I have learned to just accept myself.
I love reading your threads Amber, thankyou!

Ah yes, the knocking into furniture is something else I do all the time. Doorframes, door handles, misjudging where the corners of tables are. And mostly I don't notice, which isn't helpful. Other people say "Oh I bet that hurt" and I'll say "Er, what?". I guess that's one of my hyposensitivities, because if I'm moving, there's no space to think about pain as well. And I do have a 'drink problem' namely missing my mouth with a cup of tea if I'm not very careful,!!

At least I have a sense of humour. Well, most of the time. I guess what keeps me going in the worst bits is the knowledge that we're all people of equal worth, no matter whether LFA, HFA, PDD, AS or otherwise, and no matter what our particular abilities or inabilities. One of my proudest possessions is a card which was made for me by a younger LFA friend, K, who's in her early 20s. She's drawn what I am reliably informed by her is an aeroplane and two people, and it took her so long to be able to do that and she was just SO happy at the result. Me too. More precious than any Old Master anyone could give me. And another young LFA daughter of a friend, who communicates only through picture cards, but taught me everything I know about how beautiful autumn leaves are.

I guess they've taught me that it's ok to be me.

This is such an insightful thread for me.

I have learned that although I don't have a diagnosis, I certainly have some common traits - the shopping thing - I either buy far too little or far too much unless I have a thorough list. I have anxieties about cash - my partner can add the shopping up in his head as he goes round the supermarket. I can't do that at all so never have enough cash on me and end up using a credit card. I need to organise a debit card, but even that's stressful, in case, I can't understand what the staff in the bank need me to do - ridiculous really!

Decision making in shops is difficult at times as well and then I just get cross and have to leave.

Nothing you haven't heard before!!

Anway, I look upon DS2 now a little differently, definitely in a more logical light - I understand his stress better and am managing it in a different way and that is purely down to this thread. It's made me think clearer about what he needs and what he doesn't need. I'm thinking about stopping going to the Beavers, he doesn't enjoy it and finds it stressful - it's a no, no.

Thanks.

Interesting thread. I feel I have bagfuls of traits - more social anxiety than sensory. I do struggle in supermarkets/crowded shops - if there are too many people blocking exits I feel trapped - if I am in a busy situation I feel more comfortable if I am near a window so have a view out. Eye contact is hard. I've never been able to contribute well at DS's assessments when they ask me about his eye contact!

Eye contact is definitely a tricky one! I am so aware of it, because DS2's is so variable that when I am talking to people, I think that I sometimes stare which is intimidating!

We are off out to a Halloween Party - should be fun - DS2 is dressing up - although, he doesn't have to if he doesn't want to. He is comfortable as Scooby Doo. Fingers crossed it goes ok. I'm sure it will have its moments.

i can only relate to bits but i really must get my dh to read this, cos i am sure he will be able to relate to it. the barrier things i panic about, stuff i know i should know at 42 but never needed to know lol. amber just wanted to say thanks, and yes i defo think write a book or at least a blog aswell, its been really interesting reading it and i have just realised that it isnt finished yet lol. have to say hun, you are amazing!

fab, read it all now, thanks for sharing your experiences and loads of luck with the book, make sure you let us all know.

Can I ask a question Amber? Ds is 4 and suspected ASD. He is verbal and enjoys cuddles on a day to day basis. However this weekend he had two big meltdowns and we had a tantrum for about half an hour each time (felt like longer ). When he is in one of these I don't seem to be able to do anything to calm him.
Cuddles are rejected and he will hit out. Can you remember being like this (maybe you weren't) and what would have helped you in that situaton.
Thanks

Well, again, I can try...

The nearest example would be me three weeks ago when I attended an event where there was supposed to be support for me there, but they'd forgotten it, and I had to cope with a load of things that I wasn't expecting. I managed to get home again, but I had gone into 'shutdown', which is like meltdown but different. Instead of screaming and shouting, I can't communicate and need to get away from people. Hubby (bless him) decided I needed a hug. Bad plan. I literally wrenched away from him and just ran upstairs and locked myself in the bedroom, shaking and crying. If I hadn't managed to get away, I would have been screaming and fighting him, even though he was just trying to help. I get under the duvet and hug it round me, in the quiet, and just rock for a while until I start to calm down. The duvet means there's constant pressure on me, whereas a hug is different pressure on different places which is WAY more sensory input somehow. And if it's a hug, people often want to speak to me too, and I just can't handle it when overloaded.

So, quiet safe place for him to be. No eye contact, no talking, get something he can wrap himself in, leave him to it if you can. Then afterwards 'unpick' what happened to cause the overload, and see if the family can plan something to help stop it.

Er, does that help .

Thanks Amber. It's just so hard to watch someone in such obvious distress and not do anything. It goes against all my motherly instincts to just watch. I will definitely try wrapping him in a duvet next time and just leaving him in a cosy place (with me in the distance). He did crawl into bed with me in the early hours of the morning for a snuggle, love that.

Yup, it's the opposite of first aid, instinct etc. If we're making the decision to hug/hold hands/touch, that's easier because we can set it at a sensory level we can cope with. Much, much harder when someone else does it to us, especially if tired/overloaded/not expecting it.

I've just been reading a paper which talks about how the overiding emotion for those with ASD is fear. This makes me feel very sad for ds - and fear can often come out as anger I have no doubt.
But I wondered what you think of this Amber and what can others do to alleviate fear. I suppose that is why visual timetables work so well with ds at school - fear taken away by being secure about what is happening next. I wonder if Amber or others can contribute ways they have found to get rid/alleviate fear.

Nikos, I have definitely found visual stuff of benefit and lots of pre warning when we are about to do stuff or go somewhere. Social stories, etc. Timetables provide very secure structure so they are great. I don't always get it right though, so learning is an ongoing process!

I was just wondering how you and your husband got togther. I am the mother of a child with ASD and i can't imagine him ever having a relationship. Sorry if this is too personal.

Not sure I'd agree that fear is the overriding experience in my life. Around people I don't know and trust, I'm fearful, yes. I have to disguise it, but it's always there. In situations where the unexpected could, or does, happen I'm fearful too. What gets rid of fear is knowing what will happen. It might take years for us to work out how to handle each new social situation, but then when we do, that one is no longer scary. It might take months for us to learn a new routine, but once we do, again the fear goes. There are certainly people who use medication to help with fear, and that might work for some if the doctor agrees.

Mostly it's easier if we are allowed that balance of 'our time', versus 'interacting with people' time. Even here on mumsnet it's pretty scary for me, and that's a difficult thing to articulate. I don't know what people are going to write, so I have to risk looking to see who's got cross and who hasn't, and see if I have any way to work out why they're cross if they are. It's often far from obvious if you have a brain that can't work out why something is rude/should have been phrased differently. Whilst others can take unusual reactions from people 'in their stride', to me it's like stepping on a landmine.

So, I'd say familiarity really helps. I plan things very carefully, I invent my own 'social stories', I accept plenty of help, and I pace myself very carefully. I also don't try scary things alone.

Hi Dunleth, sorry, I think I cross-posted with your question. No, I don't mind you asking that at all. This is complicated...Hubby had a good friend from university who he played board games with/shared a love of stamps and science fiction with. I had a very very extrovert friend who enjoyed being with me because I have such a silly sense of humour, and she was very tolerant of all that I am and how I need life to be.

Sheer fate was that her brother and hubby's friend knew each other, and they planned to get their single friends together as a matchmaking exercise. So they did. With a huge lack of subtlety, my friend simply pushed me towards hubby. We liked each other immediately. He didnt do the scary eye contact thing, neither did I, and we had so many hobbies that we shared, and he had a silly sense of humour as well.

Left to my own devices, I was unable to pick anyone even remotely appropriate, I'm afraid to say. And I was a target for any passing nasty individual.

So, in our case, shared hobbies and determined friends were what did it. It often is the case with aspie marriages.

Has it been easy? Heck no. But that would be a whole chapter. Has it been worth it? Yes.

Thanks for that. Its a lovely story.

Not a problem - you might have asked me many more personal things than that