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Can anyone offer me some advice? School want ds1 (7) assessed re possible ASD.

(12 Posts)
moosemama Thu 18-Jun-09 14:55:26

Sorry, huge post.

I have a bright, funny, intelligent, extremely articulate, stubborn, forthright little boy who is just seven years old.

He has always been strong/single minded and has always stated his views and needs vociferously.

He tends to speak to adults on an adult-to-adult basis which tends to put their backs up and in the case of teachers and other schoolworkers they perceive him as rude.

He does struggle when mixing with his peer group as he tries to relate to them on an adult level as well, which means he often comes across as bossy and controlling. That said, he has had the same small group of friends since nursery and they all rub along together with no more disagreements than the average group of children. He also plays regularly with other children in both his own year and others.

At parents evening earlier this year his teacher raised his 'lack of respect' for teachers as and issue. She said he had taken to shouting out in class, not allowing other children to answer questions and shouting people down when he considered they were wrong. She suggested that if he didn't settle soon he should be seen by the SENCO to be assessed. The decision was taken to wait a few weeks until the Easter holiday and see how he went and if the school still perceived there to be a problem we would have a meeting to discuss what to do next. There was a feeling that his worsening behaviour could be down to stress, as he had had a turbulent few months. His younger brother (to whom he is practically joined at the hip) was rushed into hospital with severe pneumonia and was seriously ill and not responding to treatment (at that point he started asking what would happen if his brother died). I had to spend the entire time at the hospital with ds2 in a quarantine room and ds1 was not allowed to visit. Then I had dd1 afer a difficult pregnancy and at 5 weeks she stopped breathing and was rushed to hospital by ambulance (this was a week before the aforementioned parents evening). After the Easter holiday the school did not instigate a review so I asked his teacher (who coincidentally is head of KS1) how she thought things were going and she said "Oh fine, he seems to have settled right down".

Life at home has settled down, he adores his new little sister, his brother is back up to full strength and I am finally back in charge.

I really thought things were going along nicely - until yesterday.

I went to pick him up from school to be told that his teacher wanted to speak to me. Then I was stood for half an hour in the pouring rain while his teacher told me (in front of him) that he had been rude to and upset a girl in his class at lunch as well as the dinner lady who got involved and then in the afternoon he was rude to the teaching assistant that was covering his class. She said he is socially dysfunctional, won't or can't share with other children and is very rude to adults but appears to have no idea what he has done wrong. She then said (again in front of him) that he is going to have trouble in the juniors and we need to get him sorted now. (He is already worried about moving up to junior school and really didn't need to hear that.)

She wants the SENCO to see him in the first instance to suggest some things (like sticker charts etc) that we could do to modify his behaviour. She also wants us to consider having him formally assessed for ASD.

Since talking it through with several people, some who know him personally, some who don't, nearly everyone agreed that although he went about it the wrong way he was actually in the right in both incidents and most probably lost his temper as the situations were quite obviously unfair towards him.

I have read the 'triad' on the NAS website and it is true that he could be said to have some issues from each category. However, my husband and I have always bought our children up to think and not just do without questioning, my husband in particular is quite a radical and although I agree with a lot of his values etc he does make me mad by discussing these things with ds7 who now has a thing about what is right and fair as a result.

Anyway, I'm digressing.

Basically, I don't know whether to go down the formal assessment route with him or not. DH is definitely against it saying he feels a giving him label isn't going to help him so why bother. Whilst I think if they do find he has ASD and can come up with some strategies to help him cope through his school years and beyond, as well as help the staff in his school/s to handle him appropriately then surely that is a good thing?

The only thing is I feel gripped by panic, I can feel this huge wheel starting to set in motion and feel like once its started it will gather speed, I will lose control and things will be taken out of my hands.

Sorry its such a long post and I'm probably not being very clear as its all just swimming around in my head at the moment and I feel so confused as to what is the best thing to do.

I would really appreciate any advice from people who been through something similar with their dc/s.

Thanks for reading.

daisysue2 Thu 18-Jun-09 16:19:01

It depends what you want out of it. If you just want some new stratagies then you can put those in place yourself with the school. Strong boundaries and an understanding of what the consequences are if they overstep. My friend moved her 7 yr old son from one school a rather wooly independent school into a top state primary with very firm rules so the child knew exactly where he was. He actually sounds very much like your son. Highly intelligent but with some social problems, he's not ASD but these firm boundaries worked for him. It took a while. Basically the school has a three strikes and you are out approach so there is no arguing. The first time they do something wrong name goes on the board next time its circled third its crossed out and they have detention. After a few weeks of detention every week he was intelligent enough to realise what he was doing wrong and where he needed to conform. Why are they allowing him to behave in a way they find unacceptable and not dealing with it.

Your child may well be ASD but the school still need to bring in firm boundaries to deal with him. Ask them what their approach is and tell them how you deal with him at home. Don't be defensive with them but work with them to put in a better more effective way of dealing with him.

Ask the school if he was Aspergers how would they deal with him and what difference would it make. Remember there is no magic tablet to take once you have a diagnosis that cures autism it's really all about behavior management.

moosemama Thu 18-Jun-09 17:23:56

Thanks for your reply daisysue2.

DH and I were saying pretty much the same thing last night. He is not allowed to behave like that at home, he knows what the boundaries are and what the consequences are should he overstep them. This then begs the quetion, why can't the teachers at his school set firm boundaries with clearly identified consequences and then stick to them? If it works at home, surely it can work at school. I don't really understand why they don't already do this, as its pretty basic stuff and seems obvious to me.

I think, after spending the last 24 hours thinking about nothing else, that am leaning towards not going for the assessment. Even if he was diagnosed, my feeling is that he would probably be on the outer fringes of the spectrum (sorry, don't know the correct pc or technical terms) and if we can work with the school to modify his behaviour, I don't think a diagnosis would really benefit him.

Most adults he meets think he is bright, articulate and charming and 99 percent of the time he is very polite, much more so than his peers. Its only when he feels there has been an injustice towards him (or occasionally his brother) that he ends up being rude and confrontational. As far as I am aware, the last time he got into trouble at school was prior to the parents evening and that was back in March, so its not like he has these problems on a daily basis. That is unless the school hasn't been keeping us informed, which is unlikely as I speak to his teacher at least once, if not twice every day.

Unfortunately, he finds the school environment challenging because he doesn't accept that he should obey a rule just because he is told to, he has a real need to understand the reasons behind the rules and its this sort of questioning that gets him into trouble time and again. He will never accept someone who tells him to do something "because I said so" or "because those are the rules".

To be honest, in a lot of ways, strange as it may sound, some of the tendencies he has that could be construed as ASD can be beneficial to him. He is obsessively interested in computers and science and has a memory like a computer, he is a sponge for information and loves to learn and is a whizz and chess and other strategic games.

I'm not so worried for him in the long term. My husband manages a team of computer developers and is quite sure that many of them are on the spectrum and it has helped to make them successful in their particular roles. My feeling is that he will do very well in his chosen field and that will most likely be something to do with computers or numbers. He will certainly work hard and fight for whatever it is he decides he wants to do. Its his school years that I worry about. Schools are just not set up to handle free thinking, tenacious children and there are always going to be those individuals, like ds1 that don't just fit the mould that they are trying to shape the children into.

AttilaTheMeerkat Thu 18-Jun-09 19:12:47

Hi moosemama,

I would urge you to reconsider not going for a formal assessment as a "label" should be seen as a signpost to getting him more help in school. A "label" should not be seen as a "bad" thing; it helps other people, particularly school, understand. No "label" means no real support in school.

It won't change who he is and you will still love him just as much - but knowing why he is as he is will help both him and your family unit. There are advantages here to knowing why. Knowledge too is power.

Some children with social and communication difficulties (and I have such a child, your DS does not sound totally dissimilar to my own in some ways) can find it difficult to cope with the rigours of school life, particularly socially, as they progress further through the school system. Juniors is a different ball game entirely from Infants and you should be listening to your gut instinct here. You have already read up on the "triad" of impairments on the NAS website and you write that he does fit into the overall profile of what is on those pages. Even the children who are at the lesser end of the autistic spectrum (and I would also think that your DS is somewhere on there) can encounter considerable problems within school if their needs are not being met. No "label" will certainly not help him get his additional needs met.

Your DS also has a fair number of years within the school system yet and no firm support will make it increasingly harder for him to cope within it. Some children can bottle up all their frustrations only to take it out on the parents when they are at home.

Re your comment too:-
"This then begs the quetion, why can't the teachers at his school set firm boundaries with clearly identified consequences and then stick to them?"

Many schools do have not enough time and money let alone the expertise to effectively work with children with social and communication difficulties and the gamut of special educational needs. Many teachers as well only have scant knowledge or understanding of ASD: its not a subject readily taught at teacher training college. Some schools don't often want to acknowledge the problem either; the parents are the child's best advocates here. Infact they are often the only ones. At least in your son's case they are interested in getting him further assessed.

At the very least I would be speaking to the SENCO. I would also make an appointment with your GP for your DS to see a developmental paediatrician. You - and your son - need to know more.

It is one hell of a scary, not just to say frustrating, ride at times but this is one I would urge you to undertake. Not undertaking it is not an option for you given what you have written about your DS.

moosemama Thu 18-Jun-09 19:53:37

Thanks for your response Attila.

I think I am swinging wildly from one extreme to the other. Mainly through fear of the unknown.

A big part of me feels like it would be a relief to know for certain. As you say he would then be able to access appropriate support to help him through his school years.

I/we haven't made a firm decision about what we are going to do, although obviously all we really do want to is whatever is best for our little boy - whatever that may be.

As far as the question about why the school doesn't set firm boundaries and consequences, I mean this in general rather than just in relation to my son. His school are terribly inconsistent, with some children having consequences for their behaviour and another child doing the same thing just getting a ticking off. For example, my son has been bullied on several quite serious occasions by a known group of bullies in the school and the children concerned just get a talking to (despite one of the occasions involving them surrounding him a circle pushing him over and laying into him, kicking and punching etc, they had to be literally dragged off him - and that was in reception year. Coincidentally he didn't used to lose his temper until after this incident had occurred). A further coincidence is that I have had to go into the school to report the same bullies for a couple of incidents over the past couple of weeks.

We are planning to meet with the SENCO as soon as we can get an appointment, but noone has explained to us what is likely happen next or what we would need to do if we want to get formally assessed. I feel like I am floundering around in the dark with only snippets of info gleaned from here and there.

Thank you for your advice about taking him to a GP, I didn't even realise I could go through my GP, for some reason I thought it had to be done through the school.

lingle Fri 19-Jun-09 09:29:56

Hi Moosemama,

I have two sons. DS1 displayed autistic traits which he has outgrown at 6.5. DS2 is 3.9 also displaying traits and we have declined to enter the diagnostic process whilst appreciating the help we are getting in nursery (principally with language).

I have just borrowed a book called "Talkability" published by the Hanen Foundation which is squarely aimed at assisting children with social communication difficulties (whether diagnosed with ASD or not). I'd recommend it for your situation (there is a UK distributor if you don't want to pay the eye-watering full price but usually Hanen books are worth every penny)and, as it is so well written, (prose as clear as a window pane) you may even find he can read it too. It explains all the subtle cues and etiquettes that he may be undersensitive to.

Once you've read around and got a firm sense of the kinds of changes in the classroom that can help, then you ask "can we achieve those changes without a label?". If the answer is yes, you don't need a diagnosis (unless he wants one for himself when he's older, or unless you think it would make the teachers more sympathetic). If the answer's no, then you'll need to think about it harder I guess. good luck! It's horrible when school aren't seeing the child you know isn't it?

Sounds like you have already pinpointed a key problem area for him which is flexibility in accepting rules and tolerating variations by others to those rules that he has accepted. My brother had this issue and couldn't join in ball games in the street, etc - is now an immigration officer! As you say, as a computer programmer this will be a strength!

In my area you can see a paediatrician without formally consenting to a diagnostic process. I did this. She suggested that we enter into the process and I said "what could it do for him?". She answered "at home, nothing, at school, it may help you get a statement and the services of the autism outreach team that your LEA provides". You and your DH may feel better able to decide whether you want a diagnosis once you've got a sense of what it might lead to in terms of support at school - can you discuss this with the Senco who should have experience of different kinds of help they've received in the past?

moosemama Fri 19-Jun-09 11:39:41

Hi lingle,

Thank you for your message.

We spoke at length with the partner of a friend last night, who is a psychologist for CAMHS in a neighbouring area.

She felt that a lot of his behaviour at school is fairly typical for a boy of his age, but maybe somewhat exaggerated and could do with toning down. She felt it would be good for us to meet with the SENCO, which we are now arranging to do, in the hope of working out some ways the school can work with him to help him develop his social/communication difficulties. I will definitely try and get hold of a copy of that book - thank you for recommending it. If it is as clear as you say it is it may well be helpful for him to read it himself as well, as he is a total bookworm and seems to absorb information really well from the books he reads (we have to get 8 out of the library at a time and he's read them all within a couple of days!).

Interestingly she also pointed out that if he was attending school in the area she covers he wouldn't even appear on the radar let alone get any help or involvement from the SENCO as being rude and talking back to teachers is the par for the course! shock

We are still considering a more formal assessment, probably with the GP as a starting point. As you said, a diagnosis wouldn't be that important in relation to us and home as he would still be our little boy and we all get along fine at home so obviously something is working. It may however help him to cope with the many years of school he has yet to come. I think we will wait until we have had our meeting with the SENCO and take it from there.

As you said, its so upsetting when the school doesn't get to see the lovely little boy we have at home. Obviously he has his moments at home as well, just like any child, but fundamentally he is such a sweetheart and if a diagnosis is necessary in order for the school to be able to implement the changes he needs to shine then we will definitely go down that route.

lingle Fri 19-Jun-09 13:27:32

great.

good luck!

Tigerlion Mon 27-Jul-09 23:55:51

Lingle, do you know who the UK distributor is fof the Hanen Talkability book as I am really keen to get a copy

ZippysMum Tue 28-Jul-09 08:20:46

Hi Moose,

Don't know whether this will be of any use, but coming at it from a teacher's perspective (I used to teach Year 3);

The reason why the school may be struggling with your son's behaviour (esp. shouting out, questioning rules, 'shouting people down' etc.) is that he is not the only child in the class, and at home he can probably get one to one or one to two attention much of the time - I am guessing he is one of 20-30, but even in small classes, a child who demands so much of the teacher's attention and input can be a problem! Imagine you were the parent of a child in his class who was constantly 'shouted down' by him when they tried to answer a question! This sort of behaviour isn't fair on other children in the class and it sounds from your OP that you tend to support him in this behaviour (eg. by saying that adults perceive him to be rude, rather than that he is rude") On many occasions, the teacher may have the time to deal with your son one-to-one, but often the teacher may need to deal with other children and should be able to expect the rest of the class to follow instructions without a lot of questioning!

It is of little help to your son if you support him in the behaviours that seem to 'put the backs up' of the adults who are teaching him at school! Your OP seems to suggest that it is lack of understanding from other adults that leads them to perceive your ds as 'rude', but later on, you seem to suggest that it is the fault of the school for not having sufficiently strong boundaries (apologies if I have misconstrued what you said in your post). If your son is getting mixed messages about what is acceptable in terms of questioning adults, that is not helpful for him - an entirely appropriate level of questioning of you and DH about the rules at home may be fine, but a teacher with 29 other children in the class just doesn't have the capacity to explore this all the time. Maybe a chat with ds about how he can be considerate towards others and what a more appropriate way to ask questions in school might be would be helpful.

As a classroom teacher, I would also really have appreciated you coming to meet with me and talk about what 'works' at home, so that ds and I could be consistent with expectations at school, as well.

Of course, this doesn't help your decision about whether you should go for the testing, but whether you do or not, he does need to learn how to behave appropriately in social situations with other adults and children. I don't, of course mean that his spirit and sense of curiosity should be stifled, just maybe you and DH could go some way to helping him harness it in a way that is more beneficial for his, and other's learning in a classroom setting.

Don't know whether any of that is helpful - saw your post and had to respond. I do hope the Talkablity book is useful.

debs40 Tue 28-Jul-09 09:39:10

Hi Moose

I was going to add what Zippy had mentioned about large classes and the fact that what works at home in terms of boundaries and attention isn't necessarily possible at school. Teachers do need children at 7 to know when it is right to shout out and when it is not. This doesn't mean they don't like independent thinkers and I don't say it to criticise your son, but it does demonstrate why it is becoming a problem.

I understand your reluctance to investigate. My son, who is 6, had problems in his reception year. He is bright and independent and we too, although having firm boundaries, encourage him to think for himself. But I don't see this as an issue as I think the right sort of school encourages that in children too. Teachers, however, need to draw a line when the class needs to get on and when other children need to be respected.

Throughout my son's reception year,I spent an age investigating why my kind, thoughtful boy seemed to like to get into playground battles and wouldn't stop and tell a teacher if hit. Instead he would hit back and get into trouble. Nothing I could say or do seemed to make a difference.

Anyway, we moved schools and his new school is much better. Much calmer. So-called 'play fighting' in the playground is not encouraged. He knows where he stands. But, being more comfortable has meant that it has become apparent that he does have social and communication difficulties.

To me, and his teachers, we can see that he can have problems simply knowing how to deal with things in the right way.

It doesn't mean he doesn't have friends, or that he doesn't enjoy school, it means, that,left to his own devices, the social niceties we all take for granted are not obviously apparent to DS.

We are undrgoing assessment and I have to say that it has changed the way we all think about DS which, in turn, has made his life easier. Teachers will explain more and recognise his anxieties. It has just meant we understand him more.

DS also has sensory and routine issues too though and hypotonia, so perhaps it was easier for us to put these things together.

lou031205 Tue 28-Jul-09 11:08:53

Moosemama, I think the first thing to say is that this is a positive thing. Although your teacher is using words like 'rude', by asking you to consider formal assessment, she is saying that she doesn't think your son is
merely 'naughty'.

What you need to do is honestly ask yourself if your DS's behaviour is a result of your parenting, or whether it goes beyond that. An intelligent 7 year old should grasp that there are times to be quiet and times to speak up.

An ASD assessment is a very thorough process. The professionals from various disciplines are very good at picking up what is NT 'behaviour' and what is a result of ASD. A diagnosis of ASD is actually pretty hard to get.

What it does mean is that your DS might get additional help that prevents him getting into trouble, which is very frustrating if he doesn't realise that he is behaving inappropriately.

I take it you've tried telling him that he needs to let other children answer even if he doesn't agree with them?

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