I want to help DS and I don't know how

[Babieseverywhere]

I always knew my beloved DS was wired differently than his siblings. I worried a lot about his lack of eye contact, even as a breastfeed baby he wouldn't look at me. But I pushed my worries aside and told myself he was fine.

He hates school and recently had a massive melt down on the way to school, I spoke to a teacher (senco ?) about my concerns all 4 x A4 papers worth. I said I understood many/all of my concerns can be seen in NT children, but is it normal to have all these concerns in one child.

After listening to all the concerns, she told me though she couldn't give a dx, it was clear our son is on the austic spectrum but so mild he won't get a dx.

This has me very conflicted. Relieved that his behaviour is not due to my bad parenting, sad as I want his life to be easy, cross as without a dx he'll continue to be labelled negatively by other teachers, children and parents.

She said potentially she could refer him to get help to make friends. He has no friends but doesn't seem to notice or care. As DH said I care more than he does.

This evening I picked him up from a school party, he was crying, melting down, really upset, as he hadn't won anything. Despite being nearly 6yo his melt downs are similar to a 3yo. Teacher with him, seemed cross with him. :(

He loses dinner time and frequent times out, for behaviour out of his control, like fidgeting in class and not playing playground games properly.

How do I help DS cope better with school ?

Babies just noticed what you said about other people reassuring you that everything is ok. I got this with my ds speech. Friends like to be reassuring and I suppose it would be quite a thing to suggest that there is something wrong with someone else's child - so many avenues for falling outs! You must rely on your own instinct here. You are concerned so follow it up with GP/peadiatrician to start with. They won't diagnose if there is nothing.

Errr... What moosemamma said
And he is already getting labelled as a naughty child at school isn't he babies ?... Much better to have a 'label' that might actually help him?
The senco isn't qualified to diagnose or to decide whether or not he is likely to get a diagnosis. I'm sorry ... But that just irritates the hell out of me.
Perhaps he can't actually help some of the behaviours he is getting into trouble for at school
A good example of the signpost in action was that yesterday ds was in hospital and when the anaesthetist read his notes ( Asperger's syndrome) he said " right ... So,his responses on waking may also be different or delayed or unusual"
The signpost protects your child and alerts people that they need to take a minute and think how to deal with him.

Well I did say a lot - as usual.

Everything thatmoose said. The school only picked up Ds2's "difficulties" when he was in Year 3, before that I was constantly told his behaviour was good and he was fine, and just a lovely quirky boy.
From Year 3 it took a further year to be diagnosed by CAHMS, and my referrral by GP was thrown out once for not meeting criteria for referral. After finally making it to CAMHS- First ADOS he was thought not significantly bad to be diagnosed, a year later, behaviour had worsened (due to social communication deficits making playground a nightmare for him) but behaviour in class still fine.... FINALLY aged 9 he is diagnosed with ASD/HFA. He is on SAplus at secondary and was on SAplus at primary and in every way it made a difference for him to have the "label"because they responded to his needs rather than his failings ifysim.

My husband is now completely onboard with the whole autism angle, yet when Ds2 was 8 he told me I was making the whole thing up, and ds had nothing wrong with him.

Just for your information, the friends thing can be deceptive. Ds1 definitely does not have autism (although he has dyspraxia) yet he has is quite shy and not especially good at attracting friends. He is much better at reading social situations though. He understands to what extent he should and shouldn't barge in on other groups. That is what makes him shy. He realises he might not say the right thing. Ds2 definitely has autism but he has friends, and always has been an attractive charismatic personality. Friends and lack of friends is not the only consideration. It is just that he doesn't discriminate and tunes out when friends come round or suddenly loses interest in them.

It is a triad of impairment so sometimes your child can meet some criteria for autism but not all..

The other thing is you will find that all the people who keep saying he is just doing what other boys do at that age, will turn round when he is diagnosed and say of course when he was 5 we noticed something different about him, x y z reports from his peers. I realise there was a whole group of people who tactfully refrained from telling me that ds2 was considered quite odd 3 years before he was diagnosed... Even at nursery there were a few parents who didn't want him to come round and play with their children. At at the same time they are saying, oh yes all boys are like that...

Ds struggled with friendships in the infants and spent most of his time alone in the playground, but had a best friend in the juniors - built out of common interests (and the fact the other lad was a saint and so supportive of ds, bless him).

He now has a new best friend at secondary school, again borne out of common interests.

As Swanhilda said, they do need to have difficulties relating to all three areas of the triad, but they don't necessarily have to be of equal weighting, iyswim. I was listening to the tape we recorded of the meeting when we were told about ds's diagnosis the other day and at that time it was clear he had difficulties in all three areas, but seemingly more difficulties with social interaction than with communication or rigidity/inflexibility. To be honest though, the balance shifts as he develops and matures, at times he will appear more rigid and inflexible, sometimes he struggles more with effective communication and at other times he struggles more with the social side of things than the other two, but he does consistently have problems with all three and that's why he fits the criteria for a diagnosis.

I don't mind parents who minimize my concerns out of kindness. I get upset when friends tell me I am wrong to worry. as they know proper autistic children and they are nothing like my son.

TBH he passes for NT until things don't go as expected and then I am told he is just playing me and he is being a baby. :(

I have read a little about this area, trying to find evidence that this did not apply to my son and if I was being honest with myself and I can not bring myself to say this in RL to anyone. I am pretty sure he is Aspergers or high functioning mildly on the spectrum of austic child.

Which is why he does not look or act like any of the classic austic children currently in the school, which can be spotted a mile off by any lay man.

I still afraid that even if DH agreed to look into this further, that I would have GPS and other professionals telling us how wrong I am, a big told you so from them and the school...bit panoriod but that is how I feel.

Which is why I am tempted to watch and see what happens over the next half term.

Is he likely to grow into his school ?. Will his behaviour get easier when he matures ?

He rarely goes on reins now. If he learns a few moresocial rules about playing, taking turns and coping with losing, that would help him at school.

The day after my ds got a diagnosis of autism (Paediatrician, Speech Therapist, Educational Psychologist in agreement), I attended a playgroup and told two of my mummy friends there who responded with a laugh and a 'Don't be silly. He hasn't got Autism!'

One of them worked with disabled children.

What struck me as even stranger, was one of the other mums who I didn't know that well came to my defence and said 'No, he really does. I had been wondering for 6 months whether to mention it and sought advice from my ASD group who told me not to'

again.

'Is he likely to grow into his school ?. Will his behaviour get easier when he matures ?'

By design and understanding, both of these things could happen. By accident the odds are against him I'm afraid.

You'll be doing a lot of watching and waiting and seeing even if you pursue an assessment. Best to be doing it ON the waiting lists than off. You can always cancel at any time.

One of the things I asked the CP leading the team that diagnosed ds was why things had come to a head when he moved into the juniors, even though it was a primary school, so there had been no school move, no change of staff, still the same classmates etc. They explained that the demands on pupils increase as they go up through the school, both socially and in terms of how much of their learning is play-based/self-directed - as opposed to being expected to sit at a desk for prolonged periods and concentrate. The social side of things changes a lot in juniors, as children decide they are more grown up and form firmer friendship groups over the more fluid friendships they had in the infants. It's all a lot to cope with for nt pupils, let alone children that can struggle with change and the social/communication side of things.

That said, I do know of people whose dcs with AS have coped better in the juniors (post y3) because the lessons are more organised and structured, there's less movement and chaos in the classroom and the parameters of what's expected of them are more clearly defined - BUT - they tend to be at schools which are very supportive and do things like allow them access to the library to read at break/lunch, so they are effectively opting out of the social aspects of junior school life.

I'd agree with RaRa. Better to get onto the waiting lists and then cancel if you feel you no longer need the appointment, than be left in the position that he still isn't coping or things are worse and having to go to the back of the queue then.

Fwiw, we only told one set of Grandparents about ds's diagnosis a few months ago. (They were wondering loudly about why he wasn't going to school in our local area and had also asked around and discovered he was going to an independent/fee paying school.) With the evidence of our LA paying for him to go out of area and us explaining all the intervention and support he's had they had no choice but to accept that the diagnosis was correct, whereas before they would almost definitely have poo-pooed the idea of him having ASD. They have actually been very supportive ever since and helped us with some of the equipment costs etc for his schooling. It absolutely wouldn't have been the right time to tell them when he was first diagnosed and there was no reason for them to know - to them he is their lovely gc. We knew that him getting a diagnosis wouldn't change that, but we had to bide our time and choose our moment to talk to them about it.

I just re-read your original post and what struck me was the last line.

It should read. How do I get school to cope better with ds? not how do I get ds to cope better with school.

Whether he has autism or not, he hates school. Ergo, they are not actually doing a very good job. You should be asking them how THEY can help him enjoy school. It might be that he needs the lunchtime supervisor to be especially aware that he cannot judge nuances of shared playtime, and to keep an eye on him before trouble brews. It might be that he finds sitting still difficult and needs to have regular "motor" breaks. It might be that he cannot understand some tasks and needs them to be broken down into smaller stages, or be encouraged to do things at a lower level of ability and praised for that, not criticised. Maybe he needs to come in a bit earlier than everyone else so he can settled in the morning before the noise of the cloakroom starts. Maybe he find the stress of deterrents and rewards overwhelming and counterproductive, and a different motivational approach is better.

In the meantime, If you have no label but just assume that he might need a few strategies, as if he has got mild autism, what has the school got to lose? His behaviour might improve and it is a win win situation. A good teacher might naturally bring the best out of him anyway, but there are always other moments in the day where he might need a bit more...

Ironically it was my friend who IS our school main playground supervisor, who left him with me kicking and screaming on the floor, telling me he couldn't cope with him :(

Apparently my son won't play the playground games properly, often siitting down and crying if he is it. The other playground supervisor has sent him inside several times as they can't cope either...However I don't know this offically. Offically the school are coping just fine, it is all in my head. Making too much of nothing :(

Wellmy son tells me he is sent inside, so I am assuming it is the other supervisor, maybe it is my friend :(

Maybe sending him inside isn't such a bad thing, if he hates playing competitive chasing games ( I used to find those games actually quite scary, being caught was threatening and upsetting, looking over shoulder etc) but it should be for a replacement break activity, not as a punishment. He should be given some opportunity to calmly relax, sand or water play, playground chalks, read a story, play with lego - a nurture break if you like. Sometimes you have to change the activity rather than force the child to do the wrong activity properly.

Yes, I agree he prefers to be safely inside. His teacher toldme last term that she had to punish him for bad behaviour and keep him in doing chores for her at lunchtime.

DS came home and said he had a good day and enjoyed staying in with teacher, lol. Some punishment :)

'His teacher toldme last term that she had to punish him for bad behaviour and keep him in doing chores for her at lunchtime.'

Surefire way of forcing him to behave badly just before break time then.

A better way would be to earn his inside minutes through good behaviour but tbh I would avoid any strategies like that until he has had his difficulties assessed and the school have accessed expert help otherwise you risk him not being able to earn clearly needed provision because he hasn't understood what is required of him.

With positive rewards, you almost always set the child up to succeed.

I agree with positive rewards. DS has been earning stars for good walking to school and back and school time behaviour...can earn up to three stars giving 30 mknutesnof screen time.

Therefore we have had 2.5 days of perfect 'shining good' behaviour...ignoring the evening school disco

Is he likely to grow into his school ?. Will his behaviour get easier when he matures ?

Tricky question. My DS is 15 and now he gets on fine at school without much support. But he had a huge amount of support through primary school, and without all that help in the past he wouldn’t be able to do what he can do now.

And his diagnosis still helps a lot. Knowing he has Asperger’s his school are quite happy to let him have fidget toys in class, for example, because they help him stay calm and focussed; whereas if he wasn’t diagnosed the toys would probably have been confiscated. Without these little allowances his behaviour would be a lot worse.

If he learns a few moresocial rules about playing, taking turns and coping with losing, that would help him at school.

Oh, the times I’ve said that about my DS! Those rules seem so simple, but he struggled so much to grasp them. Yet he has always done very well at schoolwork, loves learning, at the top end of the class for all academic subjects. So it seems impossible that he couldn’t get his head round these rules, but he couldn’t. Well, he did eventually, but it took years and some social-skills therapy that he got after he was diagnosed.

(One other book you might like to look at is The Unwritten Rules of Friendship: Simple Strategies to Help Your Child Make Friends; my DS matched several of the sections in the book.)

It’s very difficult when you aren’t sure yourself and your DH is not onside. I do not think the professionals would tell you how wrong you are, the most they would say is “well no, he doesn’t fit the criteria”. And one professional – the SENCO - has already you that you are quite right. But I also think it’s OK to watch and wait for a bit longer, take the time you need to get your head round it, and your husband too. Maybe keep a behaviour diary meanwhile so you can show it if you do decide to go for assessment.

DS came home and said he had a good day and enjoyed staying in with teacher, lol.

That's really funny! A lot of kids with ASCs do get on much better one to one with an adult than they do with other kids. Though my DS was different, he always wanted to be out playing - but boy, the trouble if a whole playground full of kids wouldn't do exactly what he told them to do!

PS I also remember years and years of games of tag in which we made sure my DS never ever got caught. It’s quite a common thing!

I am guessing the flapping hands when he is upset, might related to this stuff too ?

Yes. Make sure it is in your list when asking for a referral.

Video or diary evidence is always helpful too.

I have spent so long ignoring stuff I didn't want to see. It is hard to really look and see these things, sigh.

It IS hard babies and all of us here can empathise. This bit is the worst bit because it is unknown and frightening and there is an empty void to put your worst fears into. And though those on the SN Board are lovely people if you're anything like me you'll have absolutely no desire to join them in a shared experience right now.

I'm gonna say something which I heard when I was where you are and it pissed me off no end but I feel even if it pisses you off too it is worth hearing.

Autism isn't the worst thing.

The literature that exists on prognosis suggest it increases if the parents can accept it and then get on with learning about it and advocating for their child. It is MUCH easier to do that with a supportive partner and family.