Setting Boundaries for my son who has symptoms of Asperger's.

[swanriver]

Ds2 (yr 4, 9 years) has been seen by CAMHS who told us he needed help with social difficulties, but was not Asperger's [yet] although they warned us he might well be diagnosed this year if he was sent back for reassessment. Asperger's rated a 7 on the assessment scale, and my son only received a 6. Autism rates 10 points. This was initially flagged up by the school who perceived him having problems in the playground in year 3, licking and kissing people and handflapping, and violently responding to being teased, out of all proportion. He also invites teasing by his odd behaviour in the playground. He can kick, bite and scream when he chooses, but can be as polite as anything when he also chooses.

As he has not been formally diagnosed or statemented, we have been given no special help with his behaviour, other than the promise of a SAFE team meeting (this is due in next few weeks). Initially I was okay with this.
His behaviour in the classroom is fine, and better than some of his contemporaries.

However now that he is 9, a lot of his behaviour which was excusable when he was younger (toileting issues, shouting, tantrums over little things, angry response to being accidentally hurt by other children, dwelling on past wrongs, not listening, lack of organisation, inability to get ready, brush his teeth, sort his school bag, get dressed) are beginning to cause friction in our family. We have always adored him and tried to help him, and tailor what we did, to suit his needs. He sleeps well. He plays lots of football. He does lots of lego, he loves being read to. He has a twin sister he gets on well with sometimes and an older brother who sometimes teases him mercilessly.

After the holidays where all this behaviour is even more evident when he is with peers and relations, and cousins, I'm beginning to wonder whether he needs a firmer set of boundaries. He hates to be shouted at or told off, but does a lot of screaming himself, and takes offence immediately when asked to do things he objects to.

Any advice from parents who have successfully used a set of firm but gentle rules to suit Asperger's type children.

Sorry, I haven't really got any advice, but bumping this for you as am in a similar situation and could use some tips myself

Hi

My ds is 9 and was dx with Aspergers in January this year. We are seeing a significant worsening of his behaviour just at the moment and the holidays were frankly, hell.

Self care and organisation has always been a huge issue for ds, but having managed to go on a recent school trip for a weekend without our supervision, we realised that he is actually capable of more than we give him credit for and I think some of his behaviour could be frustration. (That said, he didn't use his toothbrush once in three days and came home with the same pair of pants on that he left in. )

We have drawn up a home schedule for him. It just lists all the things he needs to do in the three main parts of his day, so when he gets up until he leaves for school, after school/homework tea etc and finally evening routine and bedtime.

We've attached it to a clipboard and hung it up in the kitchen and significantly also included a column for his younger brother (who is 7). We are only on day three, but it does seem to be working. They are both checking what's next on the list instead of not getting ready or expecting us to prompt them and seem to be enjoying ticking it off and seeing how many ticks they have. We're hoping that the 'tasks' will eventually become habitual, so he can manage his own routine better and as this happens we can start adding in more responsible things, like teaching him to make simple meals and using the washing machine.

In addition, we had a family meeting and drew up some new 'house rules' the main one of which is 'no hurting - ever'. After drawing that up we talked about consequences for bad behaviour and bad choices and made sure he is aware of what will happen if he breaks the rules. For most behaviours we use the ask, tell, do type system. For most rules he knows he will get a warning - then has to make the right choice or their will be a 'known' consequence. The exception is hurting - for which there is no warning and an instant consequence.

I have to go and fetch the boys from school now, so have to dash, but will pop back later.

moosemama, that sounds very helpful
starcharts have tended to founder in our house, as there are so many things to put on the chart, and his brother and sister had different charts. I think maybe taking the rewards out and just concentrating on the list itself may be the key. He loves ticking things, and he still loves getting stickers.

Like your ds mine magically does a lot of things when I'm not there to help him, but once his father or I are around, hands responsibility for most things to us

One of the issues is of relations just thinking that ds is spoilt, and I'm now wondering whether there could be an element of that in his behaviour, as well as genuine inability to perceive normal ways of doing things.

Swanriver your son sounds very like my son who is now 11yrs old. Star charts worked for a little while but then he started drawing them up himself and wanted everyone who came through the door to conform.

After years of trying different things we now have become a very strict household and this seems to have worked for us. Things like rules are explained over and over again and also our son has to explain them back to us as we found a large part of the problem was we thought he understood and he did not.

We also found that not "giving in" to him when we knew he could do a task himself helped. For instance at the weekend he did not go out until he dressed himself. We didn't have the pressure of school etc. It took weeks but now he asks for help only when really neccessary like buttons on jeans etc. I would also suggest tackling one or two tasks at a time or you might drive yourself mad.

Just got two minutes while the dcs are stuffing their snacks.

I agree with Hethbell, we are in constant dialogue with ds about rules, behaviour and consequences etc and often find he has misunderstood a rule or been unable to generalise the rule and apply to a new situation. We have been guilty of assuming that because he knew the rule he should have known better, but when we've analysed the situation, we've realised that where we would automatically adjust the rule to fit the circumstances, for him the rule is set in stone and there's no room for flexibility. He isn't able to be discerning from situation to situation, iyswim. It is exhausting but repetition and consistency are the key - he really does need to be told for the 100th time and he really does need it all explained all over again in relation to the recent context.

Also agree with the not giving in when its something we know he's capable of. There is nothing on his task list that he can't do. For us, the list is more about getting him to take ownership for self care, hygiene and organisation. I often find that he seems to use my brain instead of his own for the minutae of life, whereas he is perfectly capable of thinking for himself, he just can't be bothered and its easier for me to do it for him.

I think this came out of the fact that, as AS is a developmental delay, it did take him a lot longer to get the hang of things his peers were able to do at a young age, so we got into the habit of helping and ended up doing it all for him. I am very impressed with how well he's taken to the list so far. We have had two school mornings with no tantrums or arguments (if you turn a blind eye to the objection to his shower "because it will make me wet" ) and he has been ready early enough to play with his brother for half an hour before we go out on both days. Dh and I are subtley keeping an eye and making sure he actually does do everything on the list and so far (touch-wood) he hasn't tried to buck the system or fib about doing something he hasn't done - but its early days and it still has plenty of time to lose its shine for them.

Right - homework time ...

SWANRIVER wot ar the points based on if u done mind me asking, i am starting dx process for my 4.7 ds

Well, I am now liberally covered in red, white and blue glitter - as is my kitchen, thanks to the school Royal Wedding commemorative plate competition that both boys had to do an entry for for homework.

I meant to say, Swanriver, we don't receive any help with ds at all, despite him having a diagnosis. CAMHS refused to see him, despite him throwing up and suffering migraines and reflux due to anxiety - apparently he wasn't bad enough!

The - taking offence straight away when asked to do things he objects to - thing, sounds just like my ds1. It used to really bother me, but I've realised its because he always has his own plan of what's going to happen in his head and if I ask him to do something that isn't on his plan he can't cope. I'm hoping the task list will help with this, as it sets down everything that is his responsiblity, so he's aware what is expected of him every day. If anything changes, say we are going out or having people round. I explain what's going to happen and what I expect of him in advance and then if there's something I've forgotten I have to either accept that he's going to react badly, or that I can't ask him to do it - depending of course on what I'm asking.

It all sounds so straight forward when I'm writing it down here, but it isn't and both dh and I get it wrong regularly. I suppose we just have to put it down to a learning experience and move on. Its such a steep learning curve and in our case a lot of it is very new, as ds was much easier when he was younger, but fell to pieces on transition to juniors and completely changed.

moosemamma thanks for articulating what i was trying to say. We don't use a list at home however maybe we should. We do use several for school. DS has a list of equipment that should be in his P.E. bag (this list is sewn on to the bag). The school have let us put a big box in his form class for his books, school jumper, pencils etc with a list attached to the box so he knows what he needs. He also has a school timetable written down in words, pictures and colours which the senco did and works really well for him.

Hethbell, ds1 also has lists for school and I fill in his diary with him every day so that he knows what he has to hand in and bring home. Unfortunately, he never looks at them. He also has an equipment box in class with a list to remind him how to get started on a piece of work (write the date, write the question etc) he also ignores that and its a huge bugbear with his teacher.

I am wondering how long its going to take for him to start ignoring has tasklist - although at home, we can answer questions like 'what shall I do now' with 'go and check the list' and if we see him being idle when he should be doing something we can prompt him to check the list as well. Unfortunately the school says they are unable to prompt him to check his lists as its too time consuming.

Lenin makes a good point. Intermittent, unexpected reward is a powerful behavioural tool - we do this ranging from an extra couple of minutes on his Nintendo DS to being allowed on my laptop for half an hour if he does something spectacular. It sounds terrible to say it this way, but its the same theory training a dog. Reward regularly at first to pair the behaviour with a reward, then move to an intermittent schedule with the occasional jackpot, then fade the reward but really rarely reward an exceptional effort. If it all goes to pot, go back a stage think about why it went wrong, adjust the task or the expectations and start over from there.

lisa I'm not sure how the assessment works, just that different behaviours/observations from the Ed Pysc/parents/school/Occupational Therapist add up to different scores or ratings. I'm just repeating what they told me about the 6, 7 and 10. It may be just something in that CAHMS department in our area... I found it quite useful because it showed me where Ds2 was on the scale of SN.

moosemama our CAHMS asked if we wanted a Asperger's diagnosis, because they said then they could access help etc, but without it, nothing...it was all school's responsibility. I decided that if he wasn't Aspergers's he wasn't..but maybe I was wrong not to push for diagnosis. Anyway, to us he seems quite normal even delightful most of the time but maybe that's because we are used to his behaviour

moosemama and hethbell I can't see our school, nice as they are to ds, dealing with playground stuff etc, nurture groups, ever in my wildest dream sticking to a list or encouraging ds to look at a List. They just haven't got time, unless he had his own personal TA which he never is going to have.

Anyway I did a List again this evening (I feel like I am endlessly doing Lists for ds2, maybe I'm just not a very good list person myself) and we ticked a lot of boxes together. I think it is the violent anger I need to work on, and perhaps as you say once ds finds himself more in control of his life he'll feel better when external things don't quite go to plan...

Thank you very much everyone for your words of wisdom, and Moose I feel so sympathetic to the hellish bits of your holidays, though luckily we had lots of lovely bits too.

It is very interesting to hear about intermittent rewards working better than expected rewards - I think it is part of gaming part of our brains - I remember reading that somewhere, and sort of explains why star charts with rewards don't work as well as we might think, as children get bored of them. Even when they like consistency in every thing else.

I suppose as parents we also get a lot of intermittent rewards from our children, which motivates us; I don't expect my children to be consistently nice, but when they are it feels like heaven A hug when you are not expecting it, that sort of thing, a lovely chat, watching your child do something for the first time.

Moosemama I love your glittery plates too!

Warning: Mega post (written in retrospect after ranting on for half an hour )

swanriver, your ds doesn't need a diagnosis to access help at school. If his additional needs in any way affect his ability to access education and achieve his potential then he should be on the school's special needs register. The process usually starts with him being placed on school action and given an individual education plan (IEP) which sets out targets for the things that need working on, how they are going to be addressed, what support the school will offer and how the results will be quantified to show achievement or progress. If a child doesn't make progress on school action, they can be moved to school action plus and at that point external sources are asked to assist (so Ed Psych, ASD teachers/team, OT etc). To be honest if he has already had input from all those people, he should already be on school action plus.

Its sad to say that unfortunately neither school action or school action plus are legally binding and are IEPs are often not worth the paper they are written on BUT - its still important to push the school into taking the appropriate steps to get your ds the support he needs. The only sure fire way to get educational support is to go for a Statement and despite what they will tell you - you don't actually need a diagnosis to get one. You might have to fight a little harder to get your ds's needs recognised, but Statements should be allocated on a need basis and not simply for children with a specific diagnosis.

Its not a case of the school being too busy to support your ds - they don't have a choice, they have to ensure that all children have equal opportunity to access the curriculum and achieve their potential. If they don't, they are failing in their duty of care and in contravention of the SEN Code of Practice (SENCOP) and the Disabilities Act.

I know I said my son's teacher claims she is too busy to remind him to check his diary and lists - but I don't let her get away with that and raise it as an issue at every opportunity. Some schools and some teachers will try and get away with doing as little as possible to support children with SENs and it shouldn't be like that. Your ds has the right to his education and to his school making any reasonable adjustments in their structure and teaching methods to enable him to effectively access the curriculum.

Sorry, bit of a rant there - it just breaks my heart every time I hear about kids not being supported and parents being told they can't/won't get help without a diagnosis, its all flannel and smokescreens. No-one tells you what you support you should be getting, how the system works and what should be happening and no-body helps you make sure the school does their job properly. It makes me sooo mad!

Anyway embarrassing rant aside, you are bang on about the intermittent rewards and gambling. If you think of a one arm bandit - it wouldn't be anywhere near as addictive if you knew you were going to win, say 10 p, every time you went on it - eventually it would just get boring BUT given the opportunity of winning a huge pile of coins unexpectedly if you keep on trying and suddenly it becomes worth sticking with it in the eternal hope of winning the jackpot.

You are so right about kids being intermittently rewarding to their parents as well! They can be little so and sos all day, but then give you that big sloppy kiss and bedtime and you just melt - its no wonder we're all wrapped around their little fingers.

Mumslife, we got off lightly there I think - ours just have to wear red, white and blue.

My ds1 hates doing anything crafty, so there was a lot of, er ... helping involved in getting his plate done. Ds2 is the polar opposite, highly creative and jumps at half an opportunity to do anything even vaguely crafty - he was however, responsible for much of the glitter explosion. Tut! These creative types are sooo messy.

moose ds2 is on the SN register at school, and has an IEP, and I meet regularily with someone (is she SENCO?) not sure. I suppose I sometimes feel it is my fault, not the school's if he hasn't remembered what he needs, and if I haven't reminded him to learn his spellings etc. I think in a funny way, they are a bit kid gloves with him academically, whilst supportive pastorally. They know if he behaves badly, kicks another child for example, they need to use special techniques to solve problem not just give him a detention. Which is good.
On the other hand I wonder whether they let him drift academically, can't be bother to chase up his progress, for fear of upsetting him. Anyway, a lot of work is needed at my end I fear....He is fine academically and not frustrated particularily in classroom (except that people sometimes don't want to sit with him), although that may change, so I am grateful for that, for now.

But I take heed to what you say, and particularily the statement info.

sorry that wasn't meant to be italics, I think I put the ^ in the wrong place...

ds2 is also not creative. Although every now and then he does a work of art for 2 mins, and is very pleased with himself.

Its good to hear that the school is interested in supporting him. Yes, it would most likely be the SENCo that you are meeting. In fact, if he has an IEP you should be meeting at least once a term with both the SENCo and his teacher to review his IEP and write the next one.

He may not need any additional support academically, but it is possible to get statement purely for social and communication reasons, if you feel he needs more support in these areas.

We are in the process of applying for statement for my ds on these grounds. He has always been a high achiever, but his progress stalled when he went into juniors, not because he couldn't do the work, but because his anxiety, social and communication problems and lack of independence and organisation were interfering with his ability to concentrate. He went from top of his year group, to not being able to get past writing the date in his exercise books. Unfortunately, because he came out of infants at such a high NC level, the school refused to accept he wasn't where he should be academically. I found out a couple of weeks ago that they are still assessing him at the same level he was at two years ago - so zero progress. How they can assess him at all when he's not producing any work is beyond me. Fortunately we have had help from a fantastic Ed Psych and more recently a really good ASD Support Team, who have been able to assess his potential and prove that he is nowhere near where he should be academically, so they can't shirk their responsibility anymore.

On creativity - I bought him a 'How to Draw Pokemon' book for his birthday in the hope of encouraging him to do some drawing (he needs to work on his pencil grip and the muscles used for writing). He drew one Pokemon, which took about 1.5 minutes, expounded its merits to anyone who'd listen, put it up on the fridge door and hasn't touched the book since.

That's awful Moosemama about the zero progress, I can see that a statement would be essential, especially for later at Secondary.
You have made me think a lot about many issues.
Ds has appalling pencil grip, but he can draw very elaborate technical drawings, not naturalistic (or even comprehensible to some at all, but full of weird details, and information which if you have time to listen he explains. I think a lot of the problem with school is that they are often expected to express themselves rigidly through pen and paper, and are assessed on that basis, not through words and other interactions, or other ways of showing their knowledge. Anyway, I must go to bed now, tomorrow is another day

that's what ds1 does. Draws weird diagrams with lots of interconnecting lines and a highly complicated backstory that will make your head explode. His speciality is to do them on his little sister's magna-doodle thing and then won't let us wipe them off.

He has hypotonia and is particularly weak in his core and upper body, which affects how he sits and uses his arm and hand for writing, to cap it all he's left-handed as well. He actually finds writing really painful. We didn't realise this until a couple of months ago when he had his OT assessment. We did know he had fine-motor issues, but I felt awful when I realised the extent of the problems that are involved with his handwriting issues. Fortunately he is now allowed to use an Alphasmart for typing longer pieces of classwork.

I think a lot of the problem with school is that they are often expected to express themselves rigidly through pen and paper, and are assessed on that basis, not through words and other interactions, or other ways of showing their knowledge.

Not sure this is true. I think they are very happy to claim the child has learnt something even if they can't demonstrate it in written work. ie they do count verbal answers.

This may or may not be a good thing. For example it's been very bad for little Moose who has been allowed to get away with doing no work while school still claim he is making progress......

My DS has also been allowed to get away with doing no writing..... Something I'm not at all happy about.

So watch out for this.

we are going thru the dx process at the mo for asp/asd he is already on school action plus at nursery he starts mainstream school in sept

swanriver, not much to add to the excellent advice, but maybe a bit of background info might help explain some of the behaviours.

All generalising:

New research into autism shows that we can't properly understand irony or teasing. We don't have enough brain wiring to the different bits of the brain to think, "Is this humour?", and we can't see the body language and eye contact that shows a difference between the words and the emotions for that person. So we might understand that something is funny if it's a definite joke, but irony and sarcasm are often totally lost on us. They feel like the person is just being really rude, and because our brains panic, they panic like mad over it.

Also, tiny bits of physical contact often hurt hugely. Again, wrongly designed brain wiring, so an accidental jogging of our arm can feel exactly like a huge painful punch to it, and we'll react accordingly.

Also, we tend to react to the event, not the reasons for it. So if something happens accidentally, we can't process that it was accidental. We only know it happened, and that a person made it happen, therefore they're at fault. The concept of 'accidental' is a largely social one and our brains need to learn it manually.

We need to learn why we react certain ways before we can learn how to stop it, I think. It might help him to know why he's reacting so extremely to some things, for example. But it's not an excuse for violence or bad behaviour - it's a way to start to understand its causes and work towards solutions.