Should I worry about my DS?

[BumptiousandBustly]

DS is 3.9 - he had a significant delay in interacting/playing with other children - Which was commented on from 2 onwards (by nursery/pre-school etc) - though recently he as actually started to interact with other children and play with them, which I am really pleased about.

He does pretend play - a lot - though he does always have to make it very clear that its pretend.

He is very clear on the rules - e.g. we told him that we don't say "I don't care" - and he makes me not sing that line in a song we do together because "we don't say that, do we mummy"

He can get very upset if people don't follow the rules. (which is not to say he always does what he is told, but once he accepts something as a rule he ALWAYS notices when anyone breaks it, and doesn't like it) - so for example in "go diego, go" he will not (Cannot - as in gets really upset and has to leave the room) watch any episodes with Swiper in them - because swiper is naughty and steals things. - This is a pattern that is repeated with other programs/books etc.

He is unbelievably verbal - several years ahead and good with puzzles, jigsaws etc as well as a very good memory.

He is not terribly physical at all - i.e. he has only JUST started being prepared to try and climb things in soft play.

I am just wondering if we should be worrying about him? (He has an uncle who has aspergers) - or if this is all perfectly normal?

If you are worried about him it wouldn't do any harm to speak to your GP and mention the things you have mentioned on here.

Even if your GP refers him that doesn't mean he will get a diagnosis, it can take ages for that to happen and you can stop the process anytime.

My Dd3 is 9 now and has ASD but when she was younger she used to get very upset about people breaking rules, she still doesn't like it but has had to learn to live with it at school.

There are lots of people on here who have a number of people in their family with ASD's, my family is littered with them.

That doesn't mean I think your DS has ASD, just that he seems to be displaying some quirky behaviours that might be worth checking out before he goes to school.

Good luck.

Ineedchristmascake - many thanks for your response. I guess I am just trying to understand if I am justified in thinking there is something there that is a little bit off kilter or not.

We have actually been referred to the paediatrician as DS is not growing - so and when we see him again in six months time - he said he will have a look at the other stuff - which is great - but its not what we were referred for IYSWIM - so I am still wondering if its just me imagining things. I also find that if I try and talk about it professionals seem to think that I am on this whole - my son is so bright - thing - which is not it at all! - the being very verbal etc - is just part of the overall thing - and actually is quite out of kilter with everything else too - but I feel that because of that perception I get dismissed.

I'm afraid you need to worry - because no one else will.

It's very common for health and educational staff to reassure you there's nothing wtrong, when they don't have a clue.

I think you should go to the GP and askfor a referral to a child development paed.

Lots of things you mention could be symptoms of aspergers.

Indigobell - OK, thankyou - interesting that you say that lots of things I mention could be symptoms.

I agree about health professionals - one doc actually wrote on DSs notes - "mum thinks he is a genius because he can read and has no friends!" and when I made a formal complaint she said - oh I didn't think you actually wanted to do anything about it, most people don't at this stage! (so why did she think I came to see her then?) but still didn't refer him.

You say we need to be referred to a child development pead - so the one we are seeing for the growth will be no good for the other stuff then?

My Dd1 and Dd3 both talked very early in sentences, neither of them babbled.

But they talk at people and have very little understanding of social communication.

They ramble away talking about what interests them, Dd3 used to give checkout staff a complete rundown of our family and if I dared to tell her to stop before she had finished she would have a meltdown.

They also have issues with taking things very literally and not understanding the finer subtleties of language.

Sorry cross posted then.

Yes, only a child development paed can dx aspergers (or at least that's true where I live). I don't know what kind of paed you're under but they do tend to specialise I think.

Maybe google your county and you'll find out.

If it's a different paed then you should ask your GP to refer you.

And being very bright often fits in with aspergers. For example mrz's son was Reading the financial times at 18 months :)

my son is not that far ahead - but he's certainly and without doubt 'very bright'

My son (3.9) has recently been dx with asd... he talk very well, using some complex words, however he also uses banks of phrases over and over and has little understanding of conversations and how to interact with speech. He also has problems with order of speech for example, he gets very upset if I don't say the goodnight routine to him in the correct way with the right tone!

Based on the info you have given, I would certainly be looking for a referral to the relevant paediatrician, at least you will then be in the system.

My Dd3 was Dx'ed by a Psychiatrist[sp].

In my area the developmental paeds are handing all the possible ASD cases to CAMHS.

CAMHS people told us that they don't really want this to happen but can't see it changing in the near future.

Meant to say that Dd1 was reading before 3 and Dd3 wasn't much after that. But they were only really decoding the words they didn't really understand what they were reading.

Indigobell - while DS wasn't reading the financial times at 18 months [shocked] he is, as you say without doubt - "very bright" - but you put that together with the rest and I think there are ASD indications.

Leningrad - I don't know if this is what you mean - but he can't watch ANYTHING were anyone gets anxious or upset - i.e. we were just watching a go Diego go where the butterfly is frightened by the baby jaguar - and he had to hide until that bit was over - and he is like that with anything.

baboos - interesting about saying goodnight etc - DS has to have certain words - in certain order - tone etc - part of his rituals - but I didn't know if that was just normal 3 year old or something more. (especially has to have this at bed time)

indeedachristmascake - will look into what kind of pead we are seeing and who does the diagnosis around here.

Yes, absolutely. It's the very bright with the other things that point to ASD - not on it's own :)

DS found Finding Nemo and Cars too scary to watch when he was 4 and 5. I remember walking out of them and thinking that was perfectly normal - that Cars must be too scary for most 5 year olds.

I don't remember a lot of rituals and repetitions when he was young - but now that he is 11 his bedtime routine is set in stone. For example his bedtime is 9:30 and 15 seconds

DSs main symptoms are huge anxiety. No eye contact. Not knowing if the kids at school are being friendly or teasing him. Finding it very hard to manage his emotions. Getting very angry or very distressed. Terrible handwriting and poor co-ordination etc. Being a bit fussy with food. Wanting everything to conform to rules. Having no patience or empathy for his younger brother. Wanting everything symmetrical...... Really not understanding social niceties. And of course - being very bright :)

Thankyou so much for all your input and suggestions, I particularly like the one about keeping a diary - and we are going to start documenting the things he does that make us worry - (and the things that don't). DH was saying today that whenever he takes him to a public toilet - he screams when the hand drier goes on!

We are starting to feel like either we are doing it all wrong, or that there is a problem there - not helped by the fact that his pre-school are telling me that everything is OK - which makes me feel more than ever that is somehow us that is doing everything wrong.

I feel like we are dealing with a teenager in someways - the negotiation, the tantrums (which are pretty grownup and get very childish) - the fact that he is constantly tired, he challanges EVERYTHING we say etc.

In otherways I feel like we are dealing wtih someone much younger than him - he can't cope with anything going wrong on (in books or TV_ - or anyone being cross (also in books or TV). He likes rules very much - and really notices when other people break them.

He can also get very manic on occasion - especially if he breaks the "rules" its like he has to psych himself up to do it - IYSWIM.

On the one hand i want to someone to tell me that everything he is doing is totally normal - but then I feel like if it is - then we are failing him by not handling it well.

Oh I don't know - I just want someone to tell me that my beautiful boy will be OK.

Yes, you do need to worry about him, but only because its your job!

The rules thing can be called 'scrupulosity' and can be distressing for adults and children.

I have a boy the same age who has similar issues. Lots of pretend play. things have to be done the 'right' way. Gets fixated with things on TV or in books.

we have a family history, like you, and we were taken pretty seriously because of that. no question of fussy or paranoid parenting, so quite lucky in that way, if you can call it that.

One thing thats different is my DS is not bright, or at least not yet! no recognition of numbers, letters at all. he's only just got colours. This is partly because he refuses to be taught anything which is to do with his issues around control. But I'm actually relieved he's not that bright, because I know being super bright can be a risk factor for things like OCD /ASD which is what I'm worried about.

He's currently doing well and many of his problems are improving, hope things turn out well for you.

BandB

You are not failing him.

You though will need to be his advocate particularly when it comes to education and school. This is because no-one else is better placed to fight his battles for him; this is also because no-one else will.

I would seek a referral to a developmental paediatrician as a matter of course.
His anxiety levels and being a stickler for the rules may well point to him being on the ASD spectrum.

Many preschool staff would not recognise ASD in any of its many forms as they are simply not trained to do so. I would also now think carefully about future school choices (he may well struggle at school with unwritten rules at school and socialability) and whether you think he will need extra support there in terms of a Statement. Infact I would look into statementing and applying for this before he goes into infants school.

Would keep a diary and try and film him at home playing as well. This will also give the paed clues.

When I read your initial message my inital thought was that your son is somewhere on the ASD spectrum, possibly AS.

Well I have spoken to my health visitor - who agreed that there was cause for concern and that we are not over reacting - she suggested I phone the pediatrician's secretary and ask for an earlier appointment (we are meant to see him again in March). Have done that and sec is going to email him - but she said, understandably, that the doc has to asses how urgent our need is versus all the others who want assessments - and that March is quite soon for them really! So just wait and see really!

Just heard back - they won't see him before March - but are sending a "socialization questionnaire" to his pre-school. So now we just wait (not something I am good at). Any suggestions about anything else we should be doing, books we should be reading, resources we can access?

also - Pre-school say that they have no worries at all - does that mean I am just being paranoid, or are they missing things, or is it normal for him to be OK at Pre-school but not at home?

They're likely missing things. Many, if not practically all, preschool staff are simply not trained enough to recognise many areas of special needs. Also I note from your original post that nursery/preschool have previously commented on a delay in DS interacting and playing with other children.

It is certainly not unheard of either for some children with additional needs to be seemingly okay in a preschool or educational setting only for them to kick off at home (where it is safe for them to let off their pent up frustrations). This can also happen because their additional needs at preschool or educational setting are simply not being met.

You think there is something amiss here; go with your gut feelings on the matter and pursue this further. You are truly DS's best - and only - advocate here.

Have a look at the National Autistic Society's website along with continuing to post here. Keep making the diary of his behaviours too and try to film him at home playing.

"DH was saying today that whenever he takes him to a public toilet - he screams when the hand drier goes on!"

I suggest buying him some ear defenders. I think the brand you want is called Peltor - it's Pel-something anyway.

Atilathemeercat - sorry for the confusion - his last pre-school said he wasn't playing with any other children, just sitting on his own. He was very unhappy there, and we moved him to the new pre-school saying that he had problems socializing at his last one.

I think for the new pre-school its almost become a point of pride - see how much better a preschool we are (which they are) and "he doesn't have any problems here!"

The tell me that he hasn't made any proper friends, but is managing to interact with the other children and that they have "no concerns about him". Which is great - but then makes me feel like I must be imagining my stuff.

but like you say - I have to advocate for him. I am going to outline to them my wider concerns and see what they say - but at least he is really happy there. I guess I just worry that if they say to the pead that everything is fine - then I will be brushed off!

lingle - will have a look - thankyou.

BandB - your post really hit a nerve with me because your DS sounds so like my DS (although my DSisn;t particularly brainy). I agree with others that you are right to be concerned and this is worth pursuing. We have also been told by DS's preschool that they are not concerned and he is just extremely shy. I also wonder if I am just being paranoid but I'm sure that is very common in HFA or AS when the difficulties are quite subtle.

We got a referral through our (lovely) GP and we have a second appt coming up next month (a YEAR later) so I would advise being very pushy and insisting on being seen (while of course understanding that there are other people who also need to be seen!). We were asked if we wanted to pursue diagnosis at the first appt and persuaded to wait 6 months - well the 6 months turned into a year and we are not much further so I would also say, take everything they offer and ask for more! (e.g. an ADOS, ADI. multidisciplinary assessment).

FWIW we have just spent new year with a good friend who happenes to be an autism researcher and she says she thinks our DS probably has HFA/AS and although it is in some ways an awful thing to hear, mostly it is a HUGE relief because I feel like thank God, someone sees his difficulties and maybe now we can actually do something to help him instead of us just sitting here powerless and worrying.

In the meantime, I would recommend two books:

George and Sam and Tony Attwood's book on AS - I found both really helpful in different ways (first one heartwarming/breaking, second pracical and helpful). There are also loads of good tips on here about managing difficult behaviour - will try to link to them in a minute

Good luck and hope you get your referral soon

Your post sounds lots like DS1 (now 9) when he was younger. He has severe AS. When he was dx-ed a year ago I told his school teacher who said "That is a proper dx through the NHS isn't it, not one you have paid for" the school were that certain that he hadn't AS as he wasn't like the other child they had had before with AS. DS is exceedingly text book AS, but being very rule based unless he is in a high state of anxiety is exceptionally well behaved. I think that the school were expecting him to be naughty therefore he couldn't have AS.
I think if you have concerns definitely get it checked out.

Well we had our first "you just need to show him who is boss - I had one like that, I just made it clear I was in charge!" and that was from the head of his pre-school! - I really have no words to deal with that - what can you say?

skidd - I am really just starting to understand what I even need to ask ped for - but will definitly push for progress/diagnosis/referal - whatever I can - when we see him next. I can really relate to it being a huge relief (though heartbreaking) to have something concrete and that someone else can actually see what you see - and the hope that you can finally get some help.

littlemiss - We are going to push - I am very interested to hear that your son was like my son as three and has severe AS - as I think we were kind of assuming (hoping) that DS is fairly mild - Do the symptoms become clearer as they get older?

and at your DS's teacher's comment littlemiss

BandB - and at the head's comment too, it is depressing that professionals working in education can be so ill-informed and insensitive. We gets comments like that quite a lot from various family members but at least they aren't actually working with children - would you think about making a formal complaint?