Nephew's behavioural issues!!!

[BuzNuz]

Hi everyone,

Nephew is 11 and is due to start secondary school in September. His behaviour is more like a 5/6 year old. For example, he doesn't understand why he cannot do certain things and gets told off for them, yet when his baby sister (18 months) does it, she is not getting told off. An example is that he is told not to go near the gas fire and not to put on the gas fire! Yet when his baby sister was getting close to the fire, she was swiftly removed from the vicinity and his question is 'why did she not get a telling off?!!!

There are so many things like this that are beyond his comprehension and he is not 'putting it on' or playing naive. At school he is disruptive, he annoys others (at home and school) by again doing things that you normally associate with a younger child, such as constantly following them around in order to annoy or persistently laughing in their face!

The way he does these things is not malicious, but extremely difficult to deal with as it is so 'childish' even for his age!

Just now, we were playing cricket and he declared how he would love to hit his baby sister with a cricket bat on the tummy - because she is funny!!! The thing is, he absolutely dotes on her too! His behaviour is like this with most people, he doesnt just single one person out. i initially thought it was ADHD but his GP said he has to go through school to get some help with diagnosis and hih mum doesnt want him to end up going to a SN school if he is indeed diagnosed. He himself says that he doesnt have behavioural issues!

Sorry this is long, there are so many things i have missed off in this post, so please ask relevant questions and i will answer to the best of my ability. Please help me - what should we be doing????

He needs to be seen by a child development paedetrician.

He does not need to go to a special school, if his parents don't want him to. TBH they're incredibly hard to get into even if his parents do want it.

What does school say? His parents should be talking to the SENCO.

I don't know why the GP won't refer him to a paed. In some places schools can refer and in some they can't. But I'd certainly be going back to the GP and asking for a referral - after asking the SENCO if she can refer him.

He may have learning difficulties. He may have ASD. He may have any number if things I dont know about. But he (and his parents) need help.

Otherwise, what'll happen to him when he's 16 and has to leave school?

Personally, I would go back the to GP and demand a referral. Schools can refer, but in my experience are generally unwilling to do so unless they feel the child is academically behind or causing them enough problems to warrant them bringing in external professionals.

That said, I would also be asking for a meeting with the SENCO at the school and asking what they can/can't will/won't do. So as Indigo says, perhaps do this first and then approach the GP again.

Not all PCTs have Developmental Paediatricians, so he may get referred to the Community Patediatrician, who can then refer on to whoever he thinks is best qualified to make an assessment. In our area there are different specialist assessment units for ADHD and ASD, but I think we are pretty lucky with that. Waiting lists for assessments are often massive and his mum really needs to get things moving now, as its not unknown for children to be waiting 18 months before they get to the top of the waiting list.

He wouldn't end up going to a special school unless his parents wanted him to and even if they did, they would first have to apply to have him assessed by the Local Education Authority with a view to them supplying him with a Statement of Special Educational Needs and even then places can be very thin on the ground. (Obtaining a statement is another thing that is a long-winded and lengthy process, often with the odds stacked against obtaining a statement at the end of it all.) Its more usual for children to be kept in mainstream education and given additional support, with or without a statement - although this support is often hard won by the parents.

My advice would be that if she feels there is definitely something wrong, she will have to be persistent and not allow either the GP or the SENCO to fob her off. Also, get straight onto getting things sorted out now, as things are highly likely to move very slowly and if there is an underlying issue, your nephew is highly likely to need a great deal more support at secondary than he has at primary school.

Thanks for your advice indigobell and moosemama. I just spoke to nephew's mum and she just told me that the SEN teacher has 'discharged' him some months ago and said that he is doing just fine. His mum says that he has made some progress in education, but to be honest it is the level of naive behaviour for his age that concerns her more than educational level. It might be worth adding that nephew has CF and is on constant medication and physio day and night.

His mum says that his social worker (he has a SW in connection with his physical needs ie: cystic fibrosis and not due to any other reason or situation at home)
and all other teachers, SEN, doctors, nurses and consultants have never said that he may have ADHD/ASD or related behavioural problems. Then after the GP kind of shrugged it off his mum is wondering if really there isn't a problem after all and that she just needs to deal with his naivety and sometimes more challenging behaviour. She is also wondering if he is doing well considering he has such a gruelling medication schedule which pretty much takes up 1 hour morning and 1 hour at night, not to mention the frequent stays he has at hospital for weeks on end for further medication.

Basically, if he did in fact have ASD or something related, would all his specialists not have picked up on this and referred him on by now??? I am now confused in light of this further information. Another quick example is that he keeps calling a boy at school fat. his mum keeps telling him to stop it, and that it's not nice. His answer is 'but mum, he IS fat'. she says she doesn't know how to make him understand that it is not right. At the same time, my nephew does not lie. He always tells the truth even if he knows that it will get him into trouble because he knows telling truth is right and lying is wrong!

I am so confused and so is his mum.

Its a difficult one.

There's obviously no way we can tell you over the net whether or not your nephew might have ASD or anything else for that matter and it would be wrong of us to try.

I can quite believe that the professionals that have worked with him thus far have not picked up on the signs, as they weren't looking for them and his behaviour wasn't their main focus. That said, having a lot of medication and physio etc, plus hospital stays etc must have an effect. The not telling lies and rude comments could suggest AS, but then some people are just very blunt and don't mince their words and it doesn't mean they all have ASD.

My own ds was only diagnosed with Aspergers at the age of 8, despite me highlighting the red flags to every teacher he had and the SENCO pretty much from when he started school. They all picked up on things that could be red flags themselves, even commenting on these behaviours in his end of year reports, but still insisted there wasn't a problem. In his case it was when he moved from infants to juniors that he just couldn't cope and at that point we went to the GP for a referral (I didn't know we could go through the GP before and now wish I had done it a lot sooner).

My ds is a high achiever academically, we have very few, if any, concerns about his academic progress, yet he has just been through Statutory Assessment and we should hear this week whether or not he's going to get a Statement. If he does, it will be purely based on his social, emotional, organisational and communication skills, plus anxiety management - not his academic ability or progress. So schools are able to support what appear to be non-academic additional needs if necessary, its actually part of the curriculum for children to learn about social skills, appropriate behaviour etc.

It might be an idea for you to come and post on the MN Special Needs children board. Just wondering if there might be other parents of children with CF, who can share whether their own dcs are similar - going down the route of all the medical intervention etc perhaps having an effect?

He could well just be a bit emotionally immature and will catch up in his own time, but if his Mum is really worried about him, she can still push for an assessment or a visit from the Educational Psychologist. If she really can't get anywhere with the GP or SENCO, there is also the possibility of paying for a private assessment - again people over on the SN board would be able to recommend some good professionals.

If she does go back to the SENCO and/or GP. I would recommend writing a list of all her concerns and taking it with her, as its better to talk specific concerns than a general feeling that something's not right.

He has worked out that in your house, younger behaviour is rewarded and mature behaviour brings constant criticism.. sort of.. and he probably gets a lot of attention behaving in this way. Start telling off your youngest a bit, or explaining why she shouldn't do things, and reward and welcome 'older' behaviour. If he feels you are telling him off all the time and being nice to your youngest, he will feel lonely and unloved and WILL seek attention.

WorriedBetty, the OP is not the boy's parent, she is asking for advice about her Nephew. She clearly states this in the OP and title.

She isn't just talking about his behaviour around his younger sibling. His mother has wider concerns about his behaviour both at school and at home.

I agree that rewarding appropriate behaviour would be a good strategy, but given the information the OP has provided about why they are concerned, obviously neither she or the boy's mother feel its as simple as that.

Thank you again moosemama for all your advice.

I know that nephew's parents, especially mum need support and help in dealing with his personality/behaviour. She has tried rewarding and it gets to a point where he expects it. She has tried punishments and it gets to a point that you can see he is trying so hard to avoid his favourite games being taken away yet at the last minute it is as if he cannot help himself and MUST jeopardise it all and get them taken away. Then he looks so upset and resentful. He is confused too.

Thanks for pointing me in the direction of the other board. I will look on the SN board and see if i can find similar stories there. I was struck by a comment that the social worker made to nephew's mum. She laughingly said that he has always been challenging from an early age and implied that that is just his personality. I just don't buy that!

I think when he goes to secondary school, it will reveal a little more about whether there are underlying issues or not. Many thanks again moosemama
Your advice has been brilliant.

Sorry, you are right, we should medicalise him as soon as possible
Regression is normal and fine, and not something to panic over - its much better to try to work out why - most often it is changes, particularly something that means a life stage change that trigger a backwards step for reassesment/consolidation before moving on - perhaps being silly helped him through the last stage but was hidden by his age.

Don't assume that behaviour type at home is the same as at school, and don't worry if the two don't match. Being annoying will teach him life lessons as much as being a conformist/boring spod.

WB - that is so uncalled for. There isn't even any medicine to help with ASD.

Getting a dx does not mean you need meds, nor does it mean you 'excuse behaviour'. It does mean its fractionally easier to get help and to understand how to help him.

The real crime is that this child has not had appropriate help and understanding up to now.

medicalise not medicate

WorriedBetty, your point may be more effective if you phrase it as a question for the OP to consider rather than a rather dogmatic assertion of your own. Maybe you're right and things actually are 'normal and fine' - but isn't there quite a significant possibility that you are, in fact, wrong and OP's nephew could benefit getting that investigated?

WorriedBetty, noone is suggesting we medicalise him, just that if his parents and indeed his aunt - the OP - feel there is something more to his behaviour then they can ask for him to be assessed.

If there turns out not to be a problem that's great, it means perhaps he's maybe just a little emotionally immature and will catch up/settle down in his own time. (I did actually point out that not every individual who is blunt and forthright in their manner has ASD.) If however an assessment does identify a problem that needs addressing, this can be be dealt with appropriately at the time.

Assessment isn't something to be scared of, it involves a lot of boring checklist and questionnaire filling, medical and developmental history and varying degrees of 1:1 interaction between professional and child. My ds actually enjoyed his assessment and wanted to do it all over again! Therefore, there is no reason not to go ahead and have the child assessed regardless of the outcome.

Professionals do not go round diagnosing children with developmental disorders etc unless they actually fulfil the diagnostic criteria - whatever the Daily Mail might have us believe.

Nowhere has the OP stated that the behaviour represents a regression, rather that his behaviour has always been of concern and that with the transition to secondary school looming, his mum feels that she cannot leave things as they are any longer.

worriedbetty, i am rather taken aback by your comments and do not understand what the problem is with a professional becoming involved.

Nephew is on enough medications already and his mum certainly does not want to add to that list. She wants to learn methods of dealing with his behaviour and she fears for him in 'big' school where children are often cruel on a different level. She would be relieved if his usual behaviour was to be categorized as 'normal' but she is afraid that he is so vulnerable and naive that he can easily be misunderstood or even taken advantage of by children and adults alike.

To get a diagnosis will mean that she has a direction and some sort of guidelines. If all is well and he just needs to catch up, then that will also give some direction rather than not knowing what is going on. If we cannot understand the issue, then how are we to resolve it? that is why we would have liked more from the GP and school. That is why we want to get the professionals involved. If his behaviour is in fact normal, then there will be nobody happier than his mum as she really cannot bear for her son to have any more issues than what he is already dealing with!

An alternative way to get help is via the team that is looking after his CF. I don't think you can underestimate the impact living with cystic fibrosis must have on his development and the family as a whole. The management of CF is gruelling and must be hampering his ability to develop emotionally and behaviourally, and must be a constant concern for his mum.

I worked for a short time on a childrens ward for children with cystic fibrosis and I think they all seemed a little young for their age tbh,I dont think its a spectrum thing I think its moree to do with having a life limiting illness and not being as 'streetwise' as children in better health.

I would imagine that there has been enough professionals involved in his care for any SEN to have been identified by now.