Please help - my 'gut feeling' is that something is 'not quite right' with DS - but what?

[abitworried]

Hello - AngryWasp kindly directed me here, after seeing my post on the main board...
I could certainly do with some support and advice.

DS is 7. Aug-born boy, so youngest in class, and he seems to suffer from many of the issues associated with being youngest i.e. low confidence/self-esteem, 'late' developer/babyish behaviour relative to his peers etc.

However having just spent the Easter hols with him every day, I'm begining to observe traits and behaviours which are worrying me more and more. I don't know whether this is 'normal' development stuff, or whether this is indicative of some more 'deep-seated' issue?

So, for example -

• he does lots of 'sniffing' of fabrics and soft toys.He'll come and bury his face in the hem of my top, even though we've told him this is OK for bedtime/at home, but not really in public/at school.

• he seems obsessed with his 'collections' of stuff - cars, models, cards. He lays stuff out in 'exact' orders and gets extremely distraught if someone alters the order, or tries to suggest alternative forms (e.g. for Lego models)

His attitude to 'stuff' has left me in tears over the last couple of weeks, as we have been trying to tidy his bedroom (lego models COVERING the floor....) and every time I have tried to suggest tidying/breaking up/ storing stuff he has ended up SCREAMING at me and becoming hysterical...

• he seems very, very pessimistic about everything. Won't try anything new, for fear of being teased/ laughed at. He imagines all sorts of 'worst case' scenarios about everything. (There isn't any suggestion from his school that any of his fears are based on any previous happenings, such as bullying etc)

• Has seemed very tearful and emotive every day this holiday.

• He defaults lots to very 'babyish' behaviour - squealing, babytalk etc

• Academically he is OK at Maths and some other subjects, but behind on literacy. He can read, but refuses to. He often muddles up words such as 'was' and 'saw' or 'that' and 'what'. He often seems to get 'lost' on a page when reading, saying 'where am I?'.

His written work is very slow.

I know none of this sounds particularly serious in isolation, but overall it makes me feel that something is 'going on' with him that I just don't understand, but I have no idea what?

Does any of this sounds familiar to you, or am I just worrying unnecessarily?

Lots of it sounds familiar.

DD1 we feel has a lot of aspergers traits. Nothing is ever enough iyswim for a full AS dx, it is never enough to make much of an impact on life, but at the same time she is "different".

We tend to treat her as though she has an AS dx, her teachers know how we feel and have pretty much gone with following our lead.

It doesn't help much I know, but I didn't want you reply-less.

There are traits there, but lots of kids can have these without having full ASD. But you describe your son as unhappy and thats what would worry me. I would talk to your school and GP and ask for him to be assessed because he sounds anxious. Also if he is even slightly on the spectrum then you will gain a better understanding of why he reacts to situations and then you can help him adjust to these better. Children often bottle things up at school and then let them out at home so don't let the view of the school overrule your own instincts. Its easy to doubt yourself and want to be reassured by others, but although I knew nothing about autism before DS came along, pretty much every one of my instincts about him and what works best for him have been proved right; so this is a time to trust your instincts and push for a referral until you are satisfied. Often on here people say concentrate on the concerns rather than any diagnosis or label eg the literacy, play routines, anxiety / low mood; and I think thats good advice.

I would definitely have a look for more information on Asperger's syndrome. The National Autistic Society website is a good place to start.

I have one DD going through a diagnosis right now and DD2 (who is 7 too) has similar traits although possibly (hopefully) less serious. She shares your DS's self esteem issues and lack of perseverance and reverts to babyish behaviour when the world feels too challenging. She struggles a great deal with the social environment in school - just wants to be on her own.

Both my girls have the smelling obsession - DD1 knows exactly what perfume/washing powder everyone we know uses.

Although they may seem like small issues at the moment you are clearly worried if you are asking these questions. I'm reaping the benefits of being told that DD1 was fine for years and accepting it. I would love to go back and get her the support she needed aged 7 because she is having enormous difficulties now.

So don't be fobbed off by anyone. If you have concerns then take him to your GP and ask for further assessment. Keep asking until you are satisfied by the answers.

My initial feeling was a flippant question about if he likes/has liked Thomas the Tank Engine.

However as people have said he could be ASD. HOWEVER he could also have another problem, perhaps depression? (Children do get depressed and its even harder to pick up as they don't have the language to expression emotions, ways of thinking etc.)

Whatever, go to see your GP and ask for a referral to a paediatrician.

Good luck!

Mummytime - what's the link with Thomas th Tank engine? (Yes, he was obsessed with it, when he was younger, but is now into Lego Star Wars)

Thomas now Lego you say.... Sorry I am being flippant too.

Your DS sounds like mine OP, has is on the autistic spectrum (high functioning, possibly aspergers).

I would go to GP and ask for a referral to a developmental paediatrician. My town has a 'multi agency autism panel' I asked to be referred to a paed at this centre.

(Thomas and Lego very common obsessions for children on the spectrum) My DS also loves Doctor Who but I know another child whose passion is Star Wars.

Your description of your ds could be the same as i would describe dd1 (the only difference being that dd1 enjoys reading).

Dd1 loves her lego and is obsessed with collecting GOgo'S (she often lines them up or groups them in order of size or colour) she also has collections of other things such as dinosaurs (she knows all their names), shells and marbles.

Her writing is good but she's struggling to keep up (writes slowly).

She cries a lot (is very sensitive), she won't try anything new (activities and food), if someone upsets her she finds it hard to forget and move on.

Dd1 was diagnosed with Aspergers at the age of 4.5.

Sorry to be so ignorant (this is all very new to me..) but what are the advantages of getting a diagnosis?

I worry that trailing him round scores of clinics & paeds will make him feel even more 'different' and more anxious?

I mean, what practical difference can it make, versus, say, me just reading up a lot on the subject and beginning to 'coach' him in coping strategies etc?

He is in an independent school, not state, so things with SENCOs etc work a bit differently (i.e. I expect we'll have to pay!)

aSilverlining - surely obsessions with Thomas/Lego are common with young boys in general though, or else all of DS2's class must be on the spectrum?!

abitworried- TBH a dx has been no help for dd1, at the moment she gets no help at school, no therapy ect.. but on the other hand her aspergers is starting to show more as she's getting older so the dx may come in handy if she needs extra help.
It also depends on the school, do they know anything about Aspergers, are they willing to use strategies to help him cope at school?

www.mumsnet.com/Talk/special_needs/947165-aspergers-pre-schooler-where-next-and-what-support-do-you

Abitworried Click on the above link as there is someone going through the exact same thing as you and there is advice there that will also be helpful to you.

Marne - so far the school haven't made any suggestion that they have any concerns, as far as they are concerned he is progressing fine. It's a small class, and the school is quite academically focused, so he is probably above national average.

Any 'issues' e.g. nervousness to speak up in public or babyish behaviour tend to get attributed to his young age relative to his peer group (many of whom are Autumn born kids).

I'm really confused as to what to do, and I don't really have DH on board either. He just thinks DS is 'young' and that it will all sort itself out with age/maturity. He thinks that DS 'hold his own' OK with his friends, whereas I think he lets himself be bossed about and put down.

I can't decide how to proceed - I don't want to 'create a problem' if there isn't one, but nor do I want to ignore one if there is one, IYSWIM?

I also wonder whether the long (3 week) holiday just makes these things seem more intense, as we've all been getting on each other's nerves, and things have also been rather unstructured.

Getting a wrong diagnosis of asd is very VERY unlikely so don't worry about that.

The thing that stands out to me in your OP is that he is suffering from low self esteem (as my DS was pre DX and still at times post). This could be because he is an August child and up to a year behind developmentally and becoming increasingly aware of it, or it could be something else. The word muddling up when reading also stands out to me.

The school are never going to be concerned if your son is academically able (or even just average) and is not disruptive, but for your own peace of mind, I would ask for a referral from your GP to a developmental paediatrician. Good luck.

Dd1 thrives at school, she struggles making friends but loves the structure of school, academiclly she's 1 year + ahead for her age, she does get upset easily at school but her teacher now knows how to deal with it (letting dd1 remove herself from the room to calm herself down), dd1's traits are more obvious at home.

As for the babyish behaviour, yes i think a lot of boys his age act the same (boys take longer to mature than girls) so its not really a problem for him.

The way your DH is seeing things (ds is too young etc) is how most dh's see things, my dh has only just accepted that both our dd's are on the spectrum.

Both my dd's are 10x worse when they have been at home for 1 week+.

Its a hard choice for you to make but i would say it will be easier to get a dx now, when he is bigger and older it will be hard work getting him to co-operate and got to appointments (we had this problem with my step son so he has never had a dx).

Give it a few weeks, let him settle back in at school, talk to the school (see if they have noticed anything) and then talk it through with your dh. At the end of the day its you choice.

90% of the time dd1 seems to be a normal child and i forget she has AS and i think she's going to cope with life well and then we have the 10% where she suffers from anxiety and struggles to keep friends at school.

Okay! I am not a ASD parent (my kids are dyslexic) but I know lots of ASD kids, and am a trainee teacher. (Now flame me if you want.)

From my experience a diagnosis is good because: a) the label helps people see beyond the behaviour (not just naughty but ASD, not just thick but dyslexia). b) It gives everyone involved some strategies to try. c) If they are "different" it is a relief to you (and them) to know why. You can also tell them they are different, and concentrate on survival techniques. They will know they are different without you telling them. (Just as kids know which sets they are in even if given cute names, so they know that bluebells are cleverer than daisies).

Most adults with ASD I know think it was a relief to know what was different, also to learn the "rules" of everyday life (and understand not everyone else follows rules).

If it is ASD (or depression) it is diagnosed by a doctor not the school. Which can be a lot easier.

Hope you don't mind me interjecting, as I have no experience with ASD (although long suspected my DB is Aspergers). But I have many close friends and family with dyslexia, who find exactly the same problems with reading. Muddling words, not being able to scan or to find their place on a page. Would def be a good idea to push for the school to look into this (or through NHS via GP perhaps?) because the longer these problems go on, the more dyslexic kids get disillusioned with school altogether. There are all kinds of things that can help with different variants of dyslexia, so do look into it. Sorting this could help with self-esteem etc as well.

Sorry abitworried, it was flippant as I said, and yes all children have these as common popular interests. The difference being in children on the spectrum, well very much what you put here:

"- he seems obsessed with his 'collections' of stuff - cars, models, cards. He lays stuff out in 'exact' orders and gets extremely distraught if someone alters the order, or tries to suggest alternative forms (e.g. for Lego models)
His attitude to 'stuff' has left me in tears over the last couple of weeks, as we have been trying to tidy his bedroom (lego models COVERING the floor....) and every time I have tried to suggest tidying/breaking up/ storing stuff he has ended up SCREAMING at me and becoming hysterical... "

As for seeking a diagnosis, only you can decide on that, I only have experience of local authority run schools so not sure of the differences. I sought a DX (written of which is still being processed) as it opened doors in terms of support and on a personal level I felt a need to know. I appreciate not all parents choose to persue a diagnosis and that's fine, different families find their own ways of helping their child.

Is your DS aware that some of his behaviours are different to his peers?

"Is your DS aware that some of his behaviours are different to his peers?"

I don't think his self-awareness is so well-developed as to identify what is different, but I suspect some of his "I can't do it" comments relate to this i.e. what he really means is "I can't/don't do it the same" ?

I don't think his self-awareness is so well-developed as to identify what is different, but I suspect some of his "I can't do it" comments relate to this i.e. what he really means is "I can't/don't do it the same" ?

that would tie in with his age and birthday abitworried. As I said on your other thread, I've learned on here that children's language suddenly gets more complex, and they make more compex social demands of each other, from about 7 onwards. If he has some mild SN of some kind or another (the dyslexia thing sounds like a good lead doesn't it?) then he might be not just a chronological year behind some of his peers but 18 months to 2 years behind in developmental terms......but he is mature enough to start noticing areas where he is not yet successful.

Abitworried I don't know if you have seen it but somebody has started a thread about an online test you can do...

Am terrible at doing links but I will try...

www.childbrain.com/pddassess.html

Might be useful to you?