Jimjams, Davros and anyone else who has a child with ASD...

[Clary]

Well two things I wanted to say really. Both arising out of a visit this afternoon to a school for autistic children (at the non-verbal, learning difficulties end of the spectrum).
First - I came away with tears in my eyes, muttering "you don't know you're born." I just wanted to say to all of you dealing with an autistic child - hats off to you. This school has 40 on roll and a waiting list. It's wonderful and the staff are amazing but my goodness they have got a lot to deal with. And so have yo all, so have you all. Makes my worries seem so .... nothing in comparison.
Second - I could use a bit of help. I was visiting the school to do a piece about one of the teachers (and the school in general) and I wondered if anyone could help me with writing it. What I wanted to do was simplify the issue ad bring it down to a level my readers could cope with - I was going to use the example of my 5yo (NT) DD, for who "last year" and "yesterday" are approximately synonymous - but imagine if that was so for your 15yo. Or my 3yo will still have a tantrum in Sainsbury's if I won't do what he wants - but imagine if that was a young man of 19, furious because they had moved the rice, and unable to express his anger in any other way.

Is that too simplistic a way into it? Would that kind of thing offend you as parents of autistic children?

Apologies if this is a crass and stupid post. I know you know you have it hard. And I also know I don't know the half (or even the 36th) of it.

Who is the piece aimed at? I think sensory issues are important to mention if you can.
the rice thing, I still find that hard to understand. Ds1 comes home from school and every day checks that the living room and kitchen lights are on, the study light is off, all windows in the house are shut, the cupboard doors are shut and our and ds2 and ds3's bedroom doors are shut. If something is "wrong" then he howls and cries and gets really upset.OIh and the calendar has to be on Jan 2005. Its quite new for us, and I'm not sure I fully understand why he gets so upset if one of those is wrong. It's not a compulsive thing (which most of the things he insists on are), it seems to give him security, and without that he goes to pieces. I guess the rice thing is the same, it's not only the rice that;s moved, it's the man's whole understanding of the supermarket......

Donna Williams has written some stuff about autism and sense of time, her website is worth looking at, you'll find it on google.

Well you could use the example of my son last summer when we went to a playpark. the slide had sand on it and he shouted at all the children to get off the slide while he cleaned it. He even pushed at a boy a good 5 years old than him to get off. I let him go along with this and the slide was cleaned. However he then insisted on removing the sand from the bottom of the slide and again said no-one could use it at which point we had to leave and he screamed as I dragged him away.

A year later he is much, much more sociable but in a way this is more difficult in a more subtle way. He is nearly 7 and high functioning, very verbal and keen to have friends. At the beach today he told me to go and ask a group of children if he could play with them. That was Ok and he then borrowed a spade but then started dictating to the others how the hole in the sand should be dug, shouting when someone else their spade in the way etc. It is maddening because on the one hand he wants to have friends but then just starts controlling them and of course they get pissed off with this. I had to spend a lot of time negotiating with the other children what my ds should be doing and trying to be fair to everyone.

A good example of not understanding something was when my ds asked me what I meant by the 'school holidays'. I told him it meant that he didn't have to go to school. He still didn't understand and said "but I don't want to go on holiday with the school!" many autistic children take phrases such as this totally literally. His sense of time is muddled too - despite the above discussion he has no idea we are off school for 7 weeks and showing him on a calendar doesn't seem to help either.

Message withdrawn

Donna Williams - and phoebe Cauldwell write about what happens when everything starts to fall apart (this is what I meant by the rice- and I think what tobysmums is referring to).

Phoebe Cauldwell refers to this process as fragmentation. It stems from overload- when 2 or more messages conflict (so there should be rice here , but there isn't) then can crash. Fragmentation involves a number of very unpleasent sensations "a constant shudder" (Gerland) "cold steel down my spine" (gerland), the Big Blach nothingness... death was here....it was amazing how many times a day I could be dying and still be alive" (williams)

Fragmentation can involve loosing a sense of where you are in the world, losing a sense of say how your feet attach to your body. It's supposedly terrifying and a lot of autistic behavioural "problems" are believed to be as a respinse to trying to avoid fragmentation.

So the lack of rice causes fragmentation. And for ds1 if any of his checks comes back "wrong" then ditto.

That's brilliant feedback ladies.
JimJams it's aimed at joe blow, reader of a local evening paper, so needs to be fairly basic. Thos are great examples to use, thank you all very much.
tobysmum, yes, I was going to talk about bewilderment as well as fury, I guess we can all sympathise with that in a way, it is annoying when the supermarket stuff is not in the same place (it happens to me when I go to a different Sainsbury's and don't realise lol).
ANy more thoughts very welcome.

How can you explain this to an Autistic 7yr old?
my son had recently been complaining that his eyes were blurry or in his words blind. I took him to the optician to get him checked. Callum behaved very well, and was lapping up the praises of you are doing well, and you are a real star from the optician. At the end he was told he had perfect vision and did not need to wear glasses. He went absolutley ballistic, very aggressive, and abusive. HE WANTED TO WEAR GLASSES, HE HAD BEEN A GOOD BOY FOR THE OPTICIAN, DID AS HE WAS TOLD, but didn't get the glasses?????

Frustrating isn't it?

It's a birthday in our house tomorrow (mine actually) but it has had to be pretty much forgotten as Sam completely melts down when otehr people have a special day- he doesn't understand why it can't be him. Normally we carry on regardless but DH has to be at work in the evening and I willingly admit to being scared of Sam in violent meltdown mode. It's far more than a tantrum, ime. But what do you do if it's one of his brothers? Can't cancel that can I? Guaranteed overlaod. It's going to be DS3's birthday when we are away on the 27th, and we have packed the day with activities they will all like (eg steam train ride around the island), and we will continue this right up to when he takes his melatonin. We'd be too scared to head back to the campsite before.

Peachy, I find living under a constantly high level of anxiety is one of the hardest things (for me and DH I mean). And it sounds like you have the same. DS could be at his best or his worst or something inbetween but WE are anxious about problems, all sorts of behaviours including Challenging Behaviour.... and it isn't just a case of us worrying about something that doesn't happen, the problem is that it DOES.
Clary, I think you've had some good ideas here but I would be wary of comparing an NT 3 yr old to an older child with ASD because it really isn't delay, although the commuication issues could be compared, it is very different to NT. I have recently had to write loads of stuff about DS for Soc Svs, LEA etc.... 3 reports since November! If you want to read any then you're welcome. I've really learnt not to cover up, not to exaggerate but to be honest, its been quite interesting.

Yes, it's not delay. sam isn't delayed really, in fact in some areas (speech specifically, and physically) he's the opposite. It's about processing. Sam sees the same stuff as everybody else, but differently. It is like if you were in a meeting but every third word was in Arabic and everyone else was fluent. you might get the jist, but you miss the important stuff that links everything together.

But as AsD kids are so different, there's no easy answer.

SOmething that I think people often don't "get" with ASD, or certainly some kids with ASD, is you don't need to be on top of them, prompting them all the time. Certainly with DS and some of the other kids I know, far better to give them space and let them do as much as possible on their own unless it becomes necessary to intervene. I think there is a huge change due in the thinking about disability because most people automatically think of someone who can't do enough for themselves and needs help to do things, whereas DS is the opposite, he just doesn't know HOW to behave!

davros- such a good point about the anxiety. If we go somewhere open (but enclosed) we let ds1 go off, but one of us has to watch him every single second we are there, and you always have to be close enough physically to intervene if necessary.

Even at home you have to be one step ahead and constantly thinking through possibil;ities. I put ds1 in the car the other day, climbed in and realised I'd forgotten my phone- so had the dilemma- run back in for it ..... and therefore triggering meltdown, or leave without it. It's that sort of constant "do I do this resulting in this?" type anxiety that I find draining.

One of the things I'm finding hard at the moment is that ds1 wants to walk down the street independently (reasonable he's 7) but there's just no way we could let go anywhere near traffic, he's way too compulsive.

I don't know whether I should put ds1 in for swimming lessons. He had a meltdown today at the swimming pool as there was a huge inflatable thing but he wasn't allowed to climb on it. Some of the kids are younger than him but can swim so its getting confusing. However I worry about the beach as he'd probably swim too far out. He seems to think the sea is a huge swimming pool.

Oh yes remembered another good example and indeed it is about keeping one step ahead but of course completley impossible to do it all the time. Recently dh asked ds1 to get something off the shelf in the kitchen (thinking he would feel good about fetching something) so ds goes off to look for it. He comes back saying he can't see it. I go into the kitchen and dd (age 4 and NT) follows behind and looks up and she says "there it is" pointing. I encourage ds to go and get it but he starts crying and moaning "but I wanted to see it first!" and this goes on for some time and the whole point of the exercise is totally ruined.

And of course I can't undo dd having seen it first of tell her off because of course she thought she was being helpful. Maddening.

For me the obvious distinction is that with ds2 it is not a tantrum, his tears & screams are NOT because he is a head strong 3.4 yr who can't get his own way (if only).
His tears are pure fear & anxiety something in his world has changed, it may be as simple as road works so we have to take a different route to school or his sausage breaks in half before he takes a bite but to him it seems to mean everything else is not as it should be & it is just too overwhelmingly scary!

Yep, we had a huge meltdown last night because we ate dinner in the garden. We had to put sam in the living room in front of a Dr Who episode, he would come and join us for two minute intervals, in between which he'd overload and go back to the TV

yes I know the anxiety . Sam is six and a half now, and other Mums let their same age kids go to the play areas on camp sites and stuff but I can't, Sam might seem fine but overload can happen in seconds and then he is a very real risk.

I am constantly torn between which child do I keep happy. All too often its keeping ds1 happy at the expense of dd. Hard when you are supposed to be teaching them to be fair etc - I often just don't have time for that. Its easier when we walk out of a building to shout dd back if she runs ahead, and to allow ds1 to go first. I mean I am often standing there with ds2 in my arms, lots of bags etc and we are usually late too. And if anyone else says 'social stories' I will scream. All very well but I don't have time/space to do it and the school doesn't seem to either. So at the end of the day the autism often 'wins'.

Thanks for all of these thoughts everyone, some good examples too (well, not good, but illustrative I mean).
Stapo you put it very well, it's not about being a stroppy child, it's that the person's whole framework of reference is at risk (he feels) if one thing is different.
Anyway, thanks to all and as I said earlier, I am in awe of what you do, day in, day out.

Clary, what did you mean by 'you don't know you're born'???

I just mean that I have worries about my children and how well they are doing (of course we all do and they are still valid) but I was just stunned by what the teachers (and parents) have to do and the challenges they face to achieve tiny steps with the children at the school.
And how positive they all are. Just made me see the sturggle to persuade DS1 to read in a bit of perspective, really...