Can I ask about aspergers - worried

[GooseyLoosey]

Seen a similar thread but did not want to butt in, so hope you'll forgive me asking something similar.

Ds is just coming up to his 5th birthday. He is without doubt a bright child. He can read and write slightly above the age norm but can also explain gravity and global warming to you. He is very articulate.

Problem is with social interaction - and I have been concerned about this for years. He just does not know how to get on with other children. He buts into games in inappropriate ways, has a very literal interpretaion of rules and is incensed by any transgression of them, can be agressive when he perceives unfairness and has difficulties in understanding how other children feel.

By way of example, was at a birthday party yesteday (ds gets invited to very few . Everyone ignored ds and he did not know what to do. He was confused when the party games were explained and just sat there (he said the noise was too loud and he could not focus). Later, they were told to form a train and not to break it. Ds got hold of a boy who did not want ds to hold him and told him to let go, ds however was focused on the "don't break it" bit and would not. It ended up in a brawl on the floor (as I was sprinting over).

These are all very vague things and I don't know if I am worrying about nothing, but it is breaking my heart to see ds being left out of everything by his peers and ignored in the playground.

If you have got to the end of this, thankyou so much and I just wondered if this sounded familiar to anyone out there?

The national autistic society has useful guides that will help you understand aspergers and have more of an idea if this is what your ds has. It certainly sounds like some AS behaviour, but you would have to write everything down and take it to your gp asking to be referred to a paed who could help confirm it or not.
As I understand it AS kids have to tick some boxes in all 3 of the triad of impairments that make up the autistic spectrum.
Does he have obsessions, 'stims',issues with food, fixed routines, problems with change of routine - anything like that- I would write it all down and take it to the gp.
Your ds may just be a bit different, but if he has AS then I can honestly say that my ds's dx has helped him because school and friends are much more understanding and helpful.
I know how heart breaking lack of invites can be - my ds1 keeps asking why he never goes to someone's house for tea despite the fact that they come here

meant to say NAS website has these guides / tick lists.

thanks lucklady. I have read the guides and I can tick enough in each of the three categories, I am just a bit wary about doing this as I can also self diagnose with about every disease known to man from internet guides. I thought maybe asking people with experience might shed more light.

He doesn't really have any obesessions and is not fixated on routine, but from what I have read these are ancillary characteristics of AS.

Glad the diagnosis helped you. I had been worrying about whether taking any action which resulted in him being labelled might be worse for him.

I hate this all so much and would never of believed it could be so hard. I love ds so much and the hardest thing can be not letting him see that it upsets me and I think something is not quite right!

thanks lucklady. I have read the guides and I can tick enough in each of the three categories, I am just a bit wary about doing this as I can also self diagnose with about every disease known to man from internet guides. I thought maybe asking people with experience might shed more light.

He doesn't really have any obesessions and is not fixated on routine, but from what I have read these are ancillary characteristics of AS.

Glad the diagnosis helped you. I had been worrying about whether taking any action which resulted in him being labelled might be worse for him.

I hate this all so much and would never of believed it could be so hard. I love ds so much and the hardest thing can be not letting him see that it upsets me and I think something is not quite right!

You son sounds a lot like how my mother would have described me, when I was 5. I don't have a diagnosis, but I'm currently reading Tony Atwood's guide to Asperger's Syndrome and I can see where I fit, but also there are things that don't fit.
Your son is still young, so intervention could help - getting help is another matter. Social Stories and Comic Strip Conversations may help your son to understand social situations and the feelings of others.

Thank you so much for your reply. I do have problems determining whether I am being oversensitive or not. I don't want to drag him off to the GP if he is just quirky but equally I don't want to overlook something that might help him.

I will have a look at your link. Would the book you mention be helpful?

I understand what you mean about labelling - I want my ds to be him not a dx.However, I am so pleased that the school understand he is not naughty whn he's having an anxety based flip out and they avoid so much potential anxiety because they know to warn him about everything.
Your ds sounds like mine with regard to not understanding other's feelings, but different with breaking the rules - ds thinks that's hilarious - it's such a unique condition and every child is different within it.
I agree with nannynick - you can address these elements of his personality as if he has as even if you don't get a dx.

Tony's book I am finding very hard going, it clearly is not designed to be read by a lay person, aimed more at medical professionals I expect. Anyone agree/disagree? I've not read it all yet, taken me 3 weeks to read 7 chapters. So not sure how much of a help it would be. However the more you read about the subject, the more you will understand and thus be able to help your son and try to convince your GP, the LEA etc.
Getting a dx is giving your son a label, which can open up access to resources - such as help within school - though you may find that it is a battle to get any help even with a dx... LEA's are not always that keen on committing the funds. I would suspect that there are negatives to having a diagnosis as well.

Thanks, maybe I'll hold off on the book then.

Does what I have described ring any bells with anyone else? Or does anyone think I am making mountains out of molehills? (Either perspective welcome)

We have a verbal dx of Aspergers for our 3.5 year old and he didn't do any of the things like obsess with routines, foods etc. I have certainly noticed that his behaviour and interactions have improved since diagnosis. I think a diagnosis allows everyone - us, grandparents, nursery - to learn to interact with him in a special and different way so that subtly his anxiety decreases and his life is better.
I think dx is always a good thing - I'm on a communications course to learn different techniques,wouldn't have happened without diagnosis. But perhaps I'm niave still. I do think with AS that little changes can make a big difference to their lives.
Also even if he is not AS, a lot of the strategies would help him with his social skills.

And sorry, I didn't answer your question - I definitely don't think you are making a mountain. I would go to your GP and get a referral, no harm done. I assume you have dialogued with school? Do they think there is any problems?

From what you've described, he sounds more like a bright boy with a very male brain than a boy with aspergers. If he were 8 or 9 and still behaving like that, I'd be a bit concerned about his social skills (although still not necessarily thinking of aspergers), but he's still only 5 and boys generally take an awful lot longer to grow up, particularly on the social side, than girls. Also, I don't know enough about the criteria for diagnosis of aspergers, but I thought that special interests/obsessions/restrictive patterns of behaviour, whatever you want to call them, were part of the diagnosis.

However, I don't know your son, I've just read a very short description of him, based on one situation. That description doesn't sound abnormal for a 5 year old boy to me, but it's only one example you've given, and you know your son better than anyone. If you are concerned, you should seek professional advice, or it will continue to worry you.

Thanks both of you. Hels, dh thinks along the same lines as you but he almost never sees ds in a social situation and tbh is very "male" himself in social situations.

Nikos, I talk to his teacher a lot but have never specifically mentioned AS (and have been reluctant to do so in case I make things worse somehow). She describes him as a very bright child but acknowledges he has social problems. She tells me they are getting better but this is not what I see. The other children really do not like him, I have seen them get up when he sits down next to them and when I go into school they run up to me and tell me about what he has done wrong. I think the improvement is because he is modelling behaviour he sees as successful in other children but does not understand that sometimes it is context dependant.

So far he does not really seem anxious about what is happening. He seems to be unaware of what it means most of the time.

O.K.- I would start with a play date, invite one little boy round for tea. Now imagine that you are teaching your child to play just like you would teach them to read. Break it down into small chunks and literally show your child what it means to play.
Rehearse what games you will play before the guest comes round. Even rehearse the words your son might say. At this age, with any child (SN or NT), when they have been for tea they will be best friends next day at school. We have seen so much change in our ds from this painstaking teaching of social interaction. Some children just need it, like some people need loads of help to learn to read.

And by the way, your ds sounds like a wonderful boy. Bet you have some great converstions

I agree with nikos. If your son is having trouble learning how to deal with social situations, then a certain amount of "teaching" appropriate behaviour might be helpful, and giving him opportunities to try his skills out on a one-to-one basis. Even if you have a hard time finding a "friend" to invite over! (My son is 4 and still has no friends - he plays quite happily with his brother, but has no interest in other children whatsoever, so all his "friends" are my friends' children). The only trouble I have with doing that is that the other children don't tend to behave as well as one would hope - there I am telling my son not to ignore the other child when he/she comes over and to ask them what they would like to play, to take turns, etc, and they come straight in, ignore him, find one of his toys and start playing with it without saying hello or letting him join in, and basically doing all the things I've told my ds it's rude to do... But then, they're only 3 or 4 years old, and most children that age have pretty poor manners and little consideration for others when it comes down to it!!!

My ds has unusual social skills, but he is also exceptionally bright. He has learnt intellectually what is appropriate behaviour in public and what is not, and some of what other people may be thinking when they behave a certain way, even if he hasn't learnt it instinctively. As his cognitive abilities are rather superior but his motor skills and social skills rather less so, I've played on his strengths and taught him those things that do not come naturally to him in the intellectual way he responds best to. If he didn't keep telling me out loud in front of everyone what he'd done right (eg said thank you to someone, or not kept counting to 500 when someone was trying to talk to him), you'd think he was doing it all instinctively!

My sister's best friend has a son who sounds very similar to yours. He was rather unpopular at school at first, a stickler for the rules and seemed to rub the other children up the wrong way. The school did pick up on it and, with a group of other children, he did have what you would probably describe as social skills lessons for a while. This certainly seemed to help and he is much more considerate of others now he is 7 than he was when he was 5, he no longer seems to need the extra help, has friends in the class and is a much happier boy. Even children not on the autistic spectrum (or not diagnosably so) need a bit of help with their social skills, sometimes, just as some children need a bit of extra help with motor skills or reading for a while without being dyspraxic or dyslexic.

Thank you so much! It has been such a relief to put this down in words and was actually crying as I typed the first e-mail.

Hels - he sounds much like your son, I do try to teach him how to react, but maybe will formalise it a little more. I always explain before people come round what he should do to be nice to them. His motor skills are also not great so he is terrible at most playground games which does not help.

Nikos, you're right he is wonderful, it just saddens me that so few people, especially his peers seem to think so!

Problem with the playdates is that half the children refuse to come and he rarely gets invited back and from a purely selfish perspective, I find the whole thing rather difficult (ie dealing with the refusals). But you are right, I shall persevere.

Hels and goosey - I don't want to cause unnecessary worry but just to make you aware that poor motor skills are a symptom of Aspergers. I think there is nothing to fear in a diagnosis but that is up to you. Diagnosis to me seems to bring all kinds of advice and compassion out of the woodwork and has really helped my little boy.
I would say that if children are refusing to come to your house that this is probably something that needs more proactive intervention. Your class teacher might not even be aware that Aspergers exists. I would have a meeting with her and try and get more action.
Sorry - might not be what you want to hear but these things need to be sorted out when they are young.

Hi Gooseyloosey,

My DD1 is also 5 and was Dxd with AS in september of last year.

She also started school last september. Having a Dx for her, has been a positive thing for us, she is no longer a little girl on the outside looking in .

Because of her Dx her school have given her lots of help building up her social skills, and she will now happily on a one to one basis. Her play skill are still a little imature, but she is definatley improving all the time.

Getting a Dx is not the be all and end all, your DS would still be the same wonderfull little boy, just with a better understanding and a reason why he finds some things difficult.

I would ask for a referal to a child development centre (if you have one locally), it can take ages for an appiontment to come through (upto 12mths). Its a very long drawn out process to get a DX (in most cases) you would have plenty of time to change your mind should thing improve naturally in the mean time.

It a really hard/emotional position that your are in at moment, i actually found the not knowing much harder that getting a DX IYKWIM.

Trust your instinks here, if you beleive that there is something not quite right, then act on it, after all you know your DS better that anyone.

Hope this helps and good luck xx

I actually would advise you to read Tony Attwood's book Goosey. There are many things which are part of Asperger's which you may not even realise unless you are aware iyswim. Many children are dx at the age of 5 or 6-it is when their difficulties become nore apparent as they try to fit in with school routines and social situations. Do not be afraid of a diagnosis. It means your DS will get the help he needs if indeed he is on the spectrum. (I have two DSs with a dx of AS).

You are all so helpful! Thank you.

It is sounding more and more like I should do something about this in a formal way. How did you all go about it and what actually made you make the decision that a DX was necessary?

The best way to go about it is to go to your GP and explain your concerns. Ask for a referral for assessment at your local Child Development centre. In my experience schools are often pretty uesless at setting the wheels in motion, so don't rely on them for help-much better to go the GP route. Teachers are often not good at picking up on the problems of children with AS-my DS5 was dx at 6 years old and his teacher and SENCO were both very dismissive of the possibility of his having AS. It was only once he had his dx they accepted it and began to work with him more appropriately.

Hels - if your son is counting to 500 when he is expected to respond to people, this would ring alarm bells for me.

Not sure how seriously the GP would take me as I have anxiety related depression and I wonder if he would think this is a manifestation of that (I can assure you that it is not!) - am also guilt racked that my depression may have caused this in some way.

Is there any alternative ways of doing this - money would not be a problem if it would help ds?

Don't worry, nikos, I've always thought my son is on the autistic spectrum, but at the very mild end. I just wouldn't think the same about Goosey Loosey's son from her brief description, although as I said, she knows him best so should go with her gut instinct.