At a loss with ds1 (long - but desperate for advice/perspective)

[moosemama]

Sorry this is a massive post - I just need to get it all of my chest, as I'm tying myself up in knots. Huge thanks to anyone that managed to read it all.

I don't really know what I'm asking for here, I suppose I just need some perspective from people who aren't in the middle of what's going on here, as I can't seem to see the wood for the trees and neither can dh.

We are having some real problems with ds1. Its all so confused though and I'm not well so handling it all rather badly.

Since he's been on the omega supplements (a month now) he's been generally more centred, no mood swings - which is a big improvement on the terrible swings to the depths of despair and sudden reactive anger we were getting before. He has also seemed to 'get it' when he has it explained to him that his actions/words/behaviour has upset or hurt someone else and how they are feeling. We've had a handful of notable instances when, after having someone else's feelings explained to him he has been in real distress at having caused them to be so upset.

When he does get upset however, he is totally overcome by his emotions, as if they are too strong for him to cope with and he's unable to regulate them and get himself back on track.

My feeling is that he has been brought abruptly back to a more conscious state of being in 'our' world and its all a bit much for him to handle. Long term I see it as positive progress, but I do think its hard for him while he's going through it. We've talked lots and had plenty of cuddles and I've tried to be really positive and supportive through it all.

BUT - over the holidays we have struggled with him. He appears compliant when we ask him to do something like brush his teeth, or go to the toilet before bed, but then he bareface lies that he's done it - even to the extent of going and standing in the toilet room, not going, then flushing and coming out - even when he desperately needs to go (he will do this every time if we don't check and will not go to the toilet at all unless prompted).

Last night he did this, we didn't realise and he then went straight up to his bedroom - pulled down his pjs and weed on the floor! It then transpires that this is not the first time he's done it. This explains the horrible smell we have been trying to track down in the boys' bedroom for a couple of months now. The carpet is going to have to be ripped out and replaced - I had almost given up looking for the source and decided it must have been coming from the wall that is waiting to be replastered after a roof leak last winter.

Obviously dh was furious with him when he caught him in the act and asked him why he did it, when he'd just been in the toilet. He said he couldn't help it, it was an accident and he just didn't manage to hold his wee in. So dh asked why he had time to pull down his pjs if it was an accident and ds said he thought he'd be in trouble if he weed on his pjs ( but obviously not if he weed on the bl**dy carpet!). I went up to talk to him and ended up - much to my shame - completely losing it with him and shouting a lot. Mainly because he simply wouldn't accept that he'd done anything wrong and kept reiterating that in his view he couldn't win, because if he'd weed on his pjs I'd have been cross with him, but he took them off and I was cross anyway. He couldn't understand that by lying about going for a wee in the toilet before bed, then going straight upstairs and doing it on the floor - he had been disobedient, had lied and then had weed on the floor as a result. I'm not even sure I believe him that it was an accident - something doesn't sit right - its almost as if he did it in defiance - he obviously thought he wasn't going to get caught and has definitely done it before - more than once. Dh was the one that caught him and he said it didn't look like an accident to him.

In addition to that, I've also found out that he's been telling me he's reading upstairs on his bed, but actually playing on his DSi and quickly closing it when I go upstairs.

I've also caught him stealing sweets from the treat jar and yesterday he was caught out lying to me that his brother had punched him in the back when he hadn't. (In actual fact his brother had banged his head badly and ds just stood there and watched him curled up in a ball screaming in pain, so ds2 yelled for him to fetch me and he didn't move, so he shouted 'why aren't you doing anything - get Mum quick' and put his hand out to shove him towards the door'. When we discussed it, ds1 actually was perfectly aware that the shove wasn't a punch - he just wanted to get ds2 into trouble.

On top of all that, I've found out he's been threatening ds2 to keep secrets for him and not tell us what he's been up to.

There's more - I could go on for pages. All of it seems to be about getting one over on either me or dh, by doing something he shouldn't or not doing something he should and then lying about it. Its as if he wants the power of knowing he's managed to pull the wool over our eyes.

Fundamentally, if his lips are moving - he's 99% likely to be lying and I can't trust either his word or his behaviour.

I had a chat with mum this morning, as she is a clinical psychologist and told her I am so confused. I don't know what is AS related, what is 9 year old boy related, how the two are connected or how to handle it. We talked it through and she felt it was probably a dominance/power thing. That he might have got away with lying once, realised he could do it and liked the feeling.

The thing is, I am not in a good way myself at the moment. I am in full ME/CFS crisis, with really bad brain fog and am much less aware than usual. Because of this, he's managed to get away with little lies about things like, whether or not he's burshed his teeth properly, or washed his face, or changed his pants and socks (I found out too late that he'd been wearing the same socks day and night for 4 days, when I was ill and dh was looking after them) or one day he said he had got dressed when I asked him, but was still wearing the tshirt he slept in. I didn't notice at first because I was exhausted and barely managing to get through the day myself. I found out at lunch time when he was whispering about it to his brother and laughing at me.

There has been much whispering from him and ds2 has told me that he keeps whispering things and telling him not to tell. We have always had a big thing about not-lying in our family - I have real issues with lying and he has always known how I feel about it and that I won't tolerate it.

The thing is, I honestly don't know what to do about it. He has lost his DSi for today as a result of last night's weeing 'incident'. But then this afternoon he asked if he could have it, because he felt he'd earned it back. This despite me catching him out in two more lies this morning!

The thing is, he never used to be like this. He used to be the most well mannered, sweet little boy, everyone used to comment on how polite and well behaved he was and he never put a foot out of place. Now I feel like I can't even recognise the little boy I had up until he was in year 2 and between him starting juniors in September 2009 and now, he has become a totally different child. Yes he had issues before that, but we managed his behaviour and we were ok. Its almost like he's became more autistic at around 7/8 if that's possible?

Dh and I have been going back through his schoolwork for the statementing evidence and noticed that around June 2009 - so just when they starting transition to the Juniors/year 3 his work took a big nosedive, handwriting regressed badly and that's also when his teacher for the first time ever acknowledged there might be a problem that needed proper assessment.

Is it possible for children to regress this late? Do children with AS have regular regressions as well as developmental leaps? I just don't know anymore, I feel like I don't understand him and can't help him anymore. God knows I've tried everything I can think of to help him over the past two years, but nothing seems to work - he seems to be getting worse and developing new problems all the time.

I am worn out, ill and feel like I haven't the fight left in me to deal with this, especially as it seems to be all pervasive through every aspect of our homelife, but if I don't do something, I seriously fear for his future.

I don't know what else to say really. I'm sitting here in tears again and all I can think is HELP.

Moose, go and get yourself a cup of tea if you can, or get someone to make you a cup with biscuits.

Now, there is absolutely tonnes going on in your post. You can't deal with all of this at once, so break it down into more manageable and less overwhelming pieces.

I have broken it down into 4 - main pieces:

1. Now, not sure what age ds is but "being brought into a more conscious state", yes things could be massively overwhelming when he has insight into his behaviour. Sounds like he doesn't have an off switch which I don't think is uncommon with asd. What would help him to feel less overwhelmed and out of control. We have tried a doodle diary (for de-stressing doodles, def don't need to be arty); google, "feelings faces" get ds to show you how he is feeling - this works no matter what age - these faces are visual and engaging even if they appear childish. Theraputty, coloured playdough (ds's fav colour). Punch bag. You will find something(s).

2. Not going to the toilet and being defiant - has this been worse since he's been off school, for example - or could it be to do with above, ie is this way of showing how he's overwhelmed - by being defiant.

3. Playing his ds,stealing sweets - all of my dc's do this - I'm not saying it's right just that both my nts and ds2 with asd love this pasttime.

4. You say that you aren't well at the mo - does your ds understand this? Is he worried about you Moose? I'm not mentioning that to upset you. It is something to think about perhaps.

As for the future, like me I worry massively but try and stay in the here and now, things are very tough and you need a break. Have you any plans for a few hours to chill yourself, can someone babysit for a while? x

Ok, so I just had a chat with ds2 and it gets worse. Apparently, when ds1 weed in their room last night, he just walked in, walked up to ds2's bed, p'd on the floor laughed then got into his own bed. It was totally deliberate and deliberately on his brother's side of the room.

AND

He has just come running through saying he needed the toilet, then come out of the toilet room covered in wee and told me that he forgot to 'hold it' so it went everywhere. His pants were dry, so it definitely wasn't an accident, he just didn't bother to aim and weed all over himself instead.

This is a child who was toilet trained from the first day I took his nappy off aged 3 and has never had an accident. He did used to wet the bed until we took him off gluten, but since coming off it he hasn't had one bed wetting incident either.

I did wonder if he might have a water infection, but its sounding less and less likely to be that and more like deliberate acts now.

oops x posted Moose!

Thanks for reading all that and replying HelensMelons. We have tried getting him to doodle, but he seriously hates drawing or any pencil/pen stuff. He has a feelings faces flip chart by his bed - but we aren't really using it effectively, so that's a good idea - I also just realised reading your post, that he doesn't have a feelings diary at home, but does at school, so perhaps he's struggling with not being able to record and deal with how things have gone each day. I think I will definitely set up a home feeling diary for him to start using.

I do know the sweets and DSi thing is fairly normal, but there's something about the way he does it that seems worse.

He does know I'm ill, but its hard to explain ME to him in terms that he will understand. I used to just tell him was tired or exhausted, but its so much worse when I'm like this, because I am struggle to get words out, or saying the wrong words and having to pause to find the word I need. I have explained that its not a really bad illness that means anything will happen to me and I don't need a doctor or hospital, just lots of rest and peace and quiet (ha ha). He may well be worrying about it.

If I'm honest, I'm quite worried about it all myself though - my symptoms aren't typical at the moment and have been escalating. I do have it in the back of my mind that this might not actually be an ME crisis at all, I know what I think it is - but I can't get to the GP with all three dcs and if I'm right its going to mean a referral and lots of appointments for tests.

Unfortunately, dh is in back to back meetings all day and my Mum's car has broken down, so I'm completely on my own today. I've been pretty much sofa bound for most of the holiday - apart from taking ds2 to the hospital on Tuesday, which of course made me a lot worse.

I have a dvd on for dd and ds2 has come down to watch it with us. I've sent ds1 to bed for an hour and asked him to have a think about his behaviour.

I need chocolate!

Hi moose. Sorry you're having such a crap time. I'm afraid I don't have any advice because my DS2 isn't so canny or self aware as your DS1. Just wanted to say hi and pass chocolate.

Thanks Ellen

I am at a loss with him. I'm even starting to question his diagnosis. Is it even possible for him to be this manipulative and dishonest if he has AS?

Hi Moosemama,
just read your post and felt i had to respond because your ds sounds just like mine. just like what we are going through. i am appalled at the dishonesty of my son i cannot trust ANYTHING he says at all anymore. My ds2 is 12 so a bit older than yours but i cant get over the things he does. i always seem to suss him out but he still does it ! He has recently joined facebook and had it de-activated by me 3 times . He lied the other day when i had said he could go to the ice cream van but get a fruit lolly only as we had ice cream already, he came back with ice cream and some tall tale about the man getting it wrong !
i wanted to ask how old your son was when he was diagnosed AS ? we havent had any diagnosis yet and i am wondering whether its NOT AS with ds2 but more manipulative and sneaky behaviour !
im sorry i havent any answers for you but sending you some kind thoughts and sympathy.

Hey moose sorry your feeling rubbish at the moment.

Some good points already been made..:)

yes in our situation here it does seem to be 'normal' to have things get worse around your ds's age. There is a LOT going on for him at the moment ( think I'm correct in saying he's year 6?)

he's got SATs going on, transition to secondary, and there will be a few hormones whizzing about. He is likely to not feel he has any control over any of it.
Holidays are often worse because although home is a nice place, there a lot less structure and routine generally.

Lieing is quite a big developmental step, not a good one, but still a step and it needs navagating.. But it's not totally out there.

My ds found yr6 basically awful and his behaviour ( reactive) had me just about wanting to pull my hair out and giving up... But it does pass , with a bit of help.

I too have a mum who is a psych and boy did I seriously bend her ear

okay things that you can try that may ( or not) help the situation.

Get a White board ( or paper) and write down in little chunks what your doing that day..
I would go something like :

breakfast, face and teeth clean, mum check face and teeth, get dressed in clean cloths, mum check, x activity.

When that's been done do the next section of the day.. It gets easier for you when you get used to it.

The mum check bit, if done well and your happy he earns something small but instantly ( five mins on his dsi to save up, or a small treat, or 10 minutes 1-1 time.. Just for example.. But it has to float his boat).

Remember to 'reward your other dc's too, it saves them feeling left out.

If he has screentime just given, it's that that can be removed as a consiquence, but keep it small, because if your ds is like mine taking everything away in a big hit sends him into overload of his persective of things and he just yells I don't care.. But small chunks can be equaled out by what he earns. ( earnt time stays, tbh if he's being a pain, he won't be earning much anyway so it's generally not an issue).

The peeing thing, tell him you want to 'hear him pee in the water '
if you hear it, there can be a reward up for grabs.

Also try and add in some regular 'blow out time' not just for when he does blow, but a regular schedule of trampoline or punch bag time.
It's like letting a little steam out regularly.

Make sure rewards are visually shown, write a list of absolute no nos with his help in a family meeting.. So all totally agree.

I'll leave it at that as this is an epic post.
Be kind to yourself as it will pan out.

Thanks for the kind thoughts and sympathy cheeryface. He only got his diagnosis in January this year, but the lying and manipulation is very recent. The professionals had no doubts about his diagnosis. He'd been working with a very good and highly respected EP on his school related anxiety for a few months and she was part of the final assessment, as well as providing the assessment team with reports and observations etc. The ASD inclusion team also said they had no doubt he would get a dx of AS. The only wobble was the huge gap between his verbal and non-verbal comprehension skills and whether that meant it should be NVLD, but as soon as he did the ADOS the Clinical Psych and Ed Psych were sure AS was the right diagnosis. He was completely unable to play with the toys or make up a story using props and didn't get one of the social pictures even vaguely right.

I guess I know it is AS, but perhaps there's something co-morbid or perhaps a mental health issue that's not being dealt with as its been overlooked due to the AS?

He was so much easier when he was younger. I taught him to verbalise his feelings from a young age and he was able to say I am happy or sad or angry from very earlier on, so it was much easier to handle him. These days its like he's not in touch with his emotions and when he does reach them they are too big and scary for him to handle.

He appears to not care about how other people feel or whether he hurts them, but when he's told he has, he gets very distressed, with much sobbing and wailing about how he doesn't want them to be upset because of him. Then two minutes later he'll do exactly the same thing and upset them again. Its exhausting.

I said to my Mum that some of the things he does are similar to children with attachment disorder - only not as severe. She said she wondered if it has anything to do with him not connecting with me in the same way as an nt child and also because he seems to operate at arms length from his own emotions. Its true that he doesn't believe that I love him - he's told me several times and he's convinced I love both of his siblings more. No matter how much I do with or for him, he's always wanting/needing more - I swear its like trying to fill a black hole.

Oddly, this morning I chucked both boys out in the garden to play. Ds1 did his usual - "I don't know what to do out here" and "there's nothing to do" chant for a while, then dug a big hole (which he knows he's not allowed to do) chucked a toy for the dog for a bit (because she was harrassing him with it) and then the boys started playing a game together. It involved ds2 being a baby monster and ds1 being his dad. The dad put the baby to bed and then the baby had some nightmares. Whatever he dreamed, the dad acted out - so there was a roller coaster dream and a zombie's coming after you dream etc and then a non-nightmare eating lots of party food dream. It struck me that I have never - in all of his 9 years - seen ds1 play like that before - he was actually using his own imagination to add to the game scenario and continue the game. I was stood at the kitchen window with my jaw dropped I was so surprised!

Carrot, no he's year 4. Still two years of juniors to go.

Thanks for your suggestions. I will definitely give some of them a go.

I have written up a schedule for him this morning, along similar lines to your suggestion so, teeth, face, brush hair, clean undies, dressed in clean clothes etc and am going to laminate it so we can tick it off and re-use it. I will add in the 'Checked by Mum' column and tie it into a reward. I think 5 mins on my laptop would be the most attractive reward for him at the moment - he's desperate to get onto Nitrome and Woodlands Junior at every opportunity.

Hearing the wee in the water is a good idea - having spent half an hour on my hands and knees in the toilet room with a bottle of bleach this afternoon - I'm willing to try anything.

We used to have a big list of family/household rules that we'd drawn up together on the fridge, but they were being ignored so I took it down - we could revisit that.

I have also been thinking about the impact of my being ill on all of this and actually, my illness does impact heavily on my parenting ability - I'm just not able to be all things to all people when I'm like this and like most mums I suppose, I seem to be the linchpin around here, so when I'm not working right everything seems to go to pot. It is possible I suppose that its just a combination of unfortunate events and developments and really bad timing.

I want to thank you all so much for listening/reading. I feel a bit better now. I just felt so alone and it all seemed so big and complicated, I didn't know where to start.

Aw, dd has just come and thrown her arms around my neck and said "I love Mummy - look I'm smiling on you!"

Awwww good on your dd :)

sorry for getting his age wrong moose ( doh).. The reasons may be a bit different as to why then.. But at the end of the day the issues need managing for your sanity and health anyway.
( oh and don't be suprised if you do this again in yr6!).

Might be worth having some ( say 2-3) daily targets that are new each day and written down for him, just pick a couple of the rules for the day, so the rule don't get forgotten :)
and extra rewards for achieving them ( stick with the 5 minute laptop).

Your health is going to suffer if your constantly battling with ds, there no two ways about it.

Big cuppa sent your way though, it's a tough old time x

Hi Moosemama,
Skim read first post, but got to go out tonight so haven't got time to read the rest, but will try to later.
Just with the weeing thing - DS1 did this, it was about 3 years ago so he would have been 6 I think (but he was potty trained completely by 18months). We had made him a bed with high sides to look like a tractor, with gaps to walk in and out as doors. The smell in his room was getting bad, eventually realised he was just weeing over the side of the bed by the wall , needed new carpet, underlay etc, fortunately there was an old plastic side of a bouncy castle stuffed down between the side of his bed and the wall that had caught loads of it, or I think the damage would have been even worse. It was a completely deliberate act, looking back I don't know if it was a literal thing "you must stay in your bed at night" and he didn't go to the toilet, or if it was all completely deliberate - at the same time for a couple of years he would always wee in peoples gardens when we went to play, even though he knew he shouldn't. After we went ballistic he never did it again. Not sure what we would have done if he did! I have no idea if this is an AS thing or not, but you are certainly not alone.

Thanks again Carrot. Am going to go through it all with dh tonight and get something up and running by morning. Unfortunately, we have visitors tomorrow (ds's cousin, who he idolises) so it might be difficult to get going properly until Saturday.

LittleMissGreen, thanks for replying. I did do a search on MN last night and there seem to be a fair few similar situations around the age of 6. Ds was 9 last week - although I suppose, we need to adjust for the developmental delay and I often say that I think he is at a similar developmental/emotional stage/age to ds2 - who turned 7 this week.

It seems other children both nt and ASD do do it, but is the pretending to go in the toilet bit that I can't get my head around - and why walk in the bedroom - up to his brother's bed wee on the floor then laugh and get into bed.

my ds2 doesnt believe i love him either. In fact hes adamant that i hate him. makes me so

I know cheeryface, I try harder with him than I do with the others. He is my pfb and I love him so much, even though he makes it really hard sometimes, but he absolutely doesn't believe I do. Its soul destroying and heartbreaking.

Don't have anything useful to add as mine is still a littley, but just wanted to send you good thoughts moose. my sis has CFS (and OCD) and I really get the 'brain fog' stuff...

hang in there..

Moose I hope that maybe getting back to school next week will help him get back on the "straight and narrow". You sound like you have so much to deal with with your own health and 3 DCs. I have only 1 and have been off sick for months. I admit that I have been giving in when I feel rough and the TV, PS3 and DS have been on constantly.

Thanks for the sympathy sign and Ben10.

I'm actually dreading the next fortnight with all the bank holidays, royal wedding and polling day - ds1 will almost certainly be all over the place.

He's pretty much lost all interest in the TV, but did watch a dvd today. I can't let him have more computer/ds time though as he's totally obsessive about it.

My ds1 is year 4 and as. We were at an outdoor pool today, I'd told him he could not wee outside earlier and then I saw him (in distance) wee in a bush next to tennis courts and laugh to himself about it. This is typical for him. He has always been obsessed with toilets/afraid and interested in them, also always wants to wee-like marking his territory/anxiety as well. He has killed plants in our garden and will wee in front of anyone. Will stand there with his willy out, tantrumming whilst i say no in most public places!

The lies have only come recently with ds1 too- he was never engaged enough to lie, now he connects getting in trouble with certain things, he will lie to avoid trouble. Hw will deliberately upset his siblings and dh and I, particul;arly when changes are happening , so really naughty on the day dh went away last week and the day he came back this week. I feel his autism is much more pronounced because his peers are maturing and often seem very adult and he is at a stage that his 6 yr old siblings have passsed-eg ds2 lied a lot age 4.

Ds1 will hone in on the thing I find most difficylt (you find lies difficult) and obsess/be deliberately provocative about them-he was vile about my dad being dead for a long time. It's like he senses the stress about a certain thing and he finds it disturbibg/facinating/confusing and keeeps bringing it up for the excitement/stimulation.

He gets more upset when he realsises he';s upset us now too-lots of tears and snot, but it doesn't happen very often.

He is very well behaved at school, very poklite, but lets it all hang out with us at home, or whereever if he's with me, I wish he didn't feel so relaxed with us !

I tryh and find the joy with him-magic moments like seeing him kick a football with a peer or when he hugs me, but it it is hard.

Howevr, in short I would say, that in my experience, none of those things are at odds with an as dx- indeed i'd say a lot of it was the classic lacking in empathrthy and so on-ds1 recognises emotions/reads facial expressions, but doesn't feel them himself iyswim.

Sorry it's so hard for you with your health.

define me can i ask , if you showed your ds pictures of various faces like a sad face , a confused face etc would he be able to say what emotion they were showing ?
we are still very confused as to whether or not ds2 has AS or is just badly behaved and has low self esteem.
why do they think we dont love them when we so clearly do ?

Cheery ( sorry for butting in), ds (12) can only do the big emotions, but he is face blind, whoch I think makes a difference to the whole thing, as I do know that others on the spectrum don't find it so difficult.

I think ( I could be wrong) that the 'you don't love me" thing stems from not being so good at seeing the world from a perspective other than their own.
Ds thinks I only love him when he loves me :s but that does sort of make sense when you look at the world from his eyes.

Sort of like the sally Anne test in a way.

I don't have any helpful suggestions for you moosemama, all I can do is sympathise. My DS1 has ASD and is now 21, so we have been through some interesting times over the years. I do know what you mean by filling a black hole. Even now, DS1 needs just soooo much attention and love and I never feel I can give enough, however much time I give to him.

I hope that what you are going through is just a bad phase that will change - that was our experience anyway. DS1 used to go through obsessional behaviour that drove us crazy at times. Then eventually he would move on to something else.

defineme, thanks for sharing that with me. It does help to know we are not alone in this.

Cheery, my ds only gets big emotions too. He knows crying/tears = sadness, shouting = anger and laughing = happiness but anything in between and he just can't get it.

We were given face-snap to play by the EP and for every picture he said either happy or sad. The faces were clearly depicting everything from fear to despair and he didn't get any of them.

If I say to him, when I think I am clearly giving off certain signals/body language 'ds1, how do you think I am feeling at the moment?' 99.9% of the time he can't tell me.

When dh went up to him this evening he had flipped his feelings calendar to 'neglected'!

We have had a long talk this evening. There seems to be several things going on.

1. He actually does seem to be having some sort of problem with his waterworks and has been avoiding going to the toilet regularly because his lower abdoment hurts when he wees - apparently this has been going on for a couple of weeks. He did mention lower abdo tummy ache last week, but then not again and I put it down to a one off bad stomach. (Typically I find this out tonight on a bank holiday weekend, when the GPs are shut. )

1. Because its been hurting, he has apparently decided to 'disconnect' how it feels - hence not realising he is busting until its too late. He always uses the word disconnect when he is ill but can't explain how it feels, but it seems he is able to choose to disconnect his feelings from a part of his body if its bothering him. Actually I do kind of understand that, because I used to do a similar thing as a child and still can to some extent, I can push through pain by blocking it out and telling myself it doesn't hurt - I have made quite a few injuries much worse doing it over the years.

1. From talking it through, it sounds like what seemed like a deliberate act from his brother's perspective was actually some sort of dissociation. He can't actually remember weeing, just that he suddenly knew he was going to have an accident and became instantly stressed and panicked quickly pulled down his pjs, then all he remembers is having done it and being embarrassed and knowing he was going to get into trouble if we found out. Doesn't exactly tally with his brother's story, as he says ds1 laughed - but I guess we'll never know for certain.

1. He is struggling with the lack of routine during the holidays.

1. He didn't understand all the reasons behind why we make him drink regularly, go to the toilet, wash himself and brush his teeth, change his underwear every day etc etc.

1. Again, with the "I don't think you love me".

We spent a good hour with him sat on my knee talking it all through tonight (in fact he only went to bed at 10.30 ) and he has worked with us to come up with a tick-sheet schedule for all the health and hygiene stuff. We've also agreed a loose timetable for the rest of the holiday. I have explained all the health and hygiene stuff (again) and he seemed genuinely interested in it all and said it made a lot more sense now. The talk about why he needs to get into a good hygiene routine because of teenage hormones and general teenage smelliness yet to come was interesting!

I - yet again - gave him the whole I love you no matter what talk, explained that I always love him, even when I am really angry with him and don't actually like him very much. Gave him the example of when I have told him off for something and he shouts and wails and is angry with me. Asked him how he feels, whether he still loves me then. He said yes. Asked him whether he 'likes' me then - answer - no. Then watched as the penny dropped and he said, he understood that it is possible to be really cross with someone, not like them very much but still love them loads as he always loves me even when I'm cross with him - phew!

We'll see what happens now. I have had big sessions like this with him before and sometimes they work - other times he says all the right things, makes all the right noises then reverts to type as soon as the conversation is over. Only time will tell I suppose.

Thank you to everyone who has come on here to sympathise and offer advice and support. It really helped to calm me down and get my head back in the right space to deal with it rather than running round like a headless chicken.

And now I am off to bed - where I should have been about three hours ago!

Glad to hear you had a big chat- onwards and upwards is our motto!

Cheeryface- if I showed ds1 faces he would get angry/happy/sad and possibly scared (not done it for a while), but when he's with real people experiencing these emotions he often finds it highly amusing/stimulating rather than empathising/sympathising like huis 6 yr old siblings might.

He has learned some behaviour-eg his classmate had lost his mum at the school fair and was upset, ds1 put his arm around him and said 'we'll find your mum don't worry'-the classmate is a very lovely boy who has modelled that kind of behaviour with ds1.

Ds1 doesn't really connect when he's sad/angry with what others are feeling-I don't think he realises that he experiences the same thing as others.
He gets angry when someone is upset because he's hurt them (accidently or deliberatley) and I often have to get him out of the way before I can deal with the child who's actually hurt. Or his sibling could be being naughty and if i'm telling them off ds1 will dance around clapping his hands/flapping with the sheer excitement of it all!

With the loving thing I think we have to hold it together and take the long view. Ds1 has particular problems with me-he finds all communal eating difficult, but eating with me often sends him to hysteria, he finds sitting next to me difficult, all sorts of stuff, I choose to believe that's because he finds emotions hard work and he's most emotionally connected to me. If someone who doesn''t understand love in the way i do says they don't love me, then i'm dammed if I'm taking that as rejection! Ds1 finds being with his grandad far easier/calmer than being with me-that'll be because Grandad has very similar traits to ds1! I'm hard for my ds1 to be around, but he'd be lost without me. The 'rejection' is hard though.

This thread has worried me because it feels like you're all doing stuff with your sons and i can't think what we're doing with ds1. He was dx at 4 and I have no doubts over the dx. We tried gluten free years ago and it seemed to have no impact, similar with omega3, we don't really do stuff like the doodle/playdo stuff-though he is enjioying the space hopper and yoga ball he got for his birthday. Maybe I should get soem playdo-he always enjoyed it, but ate to much of it. We attempted RDI years ago but it was to expensive and too full on for us. I ythink we're muddling along and now I feel like we need to be proactive. When ds1's stressing I send him around the block on his bike and we've been trying to get him to think of alternative topics of conversation (supoermarkets/relative tallness of stuff all gets a bit boring). That sounds pathetic compared to what you're doing!

Can't seem to stop posting! I think manipulative/sneaky behaviour is perfectly in sync with an as dx-as can be intelligent and no empathy so the result would be that behaviour. My ds1 is way down the scale academically and as a result we have overt naughtiness rather than sneaky, ie I don't think he'd have the imagination for the sneakiness. He does have the imagintion for honing in on what irritates his siblings the most and endlessly repaeting thsat!
On the other hand he's a lovely boy who exudes joy at times-must focus on the positive (I can hear him telling his younger brother that he'sd very smelly!).