Please give me some advice on whether we should do anything

[crazycrofter]

There are various things in the family - aspergers, OCD, bipolar - so we are quite well informed although all these have been in my/my husband's generation, so the individuals were never diagnosed. We suspect possible aspergers (or something else?) in ds (5.5) - the question is whether we need to get a diagnosis?

I started thinking about it after two disastrous Christmas performances - during the school one, while all the other children sang, he was in a world of his own, facing backwards at one point and often talking to himself in a whisper. He did occasionally sing a few words! The Sunday school one was worse - he went up reluctantly, in a strop and roamed around on the stage/lay down on the steps while the others sang. Towards the end, he was given a tambourine and joined in. After this event I was talking to a Sunday school teacher, who felt we should get him diagnosed. He seems generally unaware of expectations on unusual occasions like this - although apparently at school his behaviour is fine.

Other issues are - obsessive behaviour. When he was 2/3/4 he was obsessed with the film 'Cars'. He had to watch a bit each day - once he'd watched a bit he could then get on with playing with his own cars/re-enacting the film. Now it's lego, especially Star Wars lego, plus the lego games on the X box.

He often seems in a world of his own - running around fighting with a lightsaber or just generally talking to himself, quite loudly and without embarrassment.

He struggles to get to sleep at night - he spends about an hour and a half bouncing around in a Stars Wars world and then lies there talking loudly to his 'sisters'.

He is very sensitive to loud noises and strong smells, and often cries at loud noises. However, he can't seem to control his own voice at all - he always speaks too loudly and often shouts and screams.

He gets angry very quickly and frequently - and often, it seems as if he's missed out the normal communication stage, where he just needs to tell us what he wants/what's wrong, eg 'I can't reach x' or 'I need y'. He just resorts to anger straight away, as if we should just know his thoughts.

He struggles to understand the concept of fact and fiction and films not being real - although there are real actors. He gets very confused by film plots too and if he's seen the same actor in another film, he can't grasp that they have a different name and character in this one!

He can be quite bossy and outspoken - he often tells much older children off at the park without any thought of the consequences!

Sorry for the long post! The problem is he seems to be doing well at school (I spoke to the teacher today) and there are no behavioural issues there. What would be the benefit of getting him diagnosed (if there is an issue)?

Also meant to add that his attention span's not very good either!

Friendships - not sure really. He says he doesn't like the boys at school, although his teacher thinks he socialises well! He does play with one particular boy every day, although he often complains he is mean. When I asked him what games they play together he said 'I don't know - x doesn't tell me'! At church he loves to hang round with the older boys - aged 11-16 - who think he's cute so don't seem to mind.

He is learning well this year. He complains about school though and doesn't seem to enjoy it.

I think that's what's confusing sometimes - he doesn't have all the traits. He enjoys being round other kids generally - he's not anti-social. Also he doesn't do the funny walk or monotone voice all the Aspergers websites mention. He does go through stages of blinking a lot though, especially when nervous.

How long did it take you to get a diagnosis?

The routine, structure and predictability of school may be masking problems - school plays break the normal routine so show up problems.
The not sharing problems / fears could be because of a social communication deficit. This is much more pronounced in my son who for eg will lie in bed at night vomiting and it will not occur to him that he should tell someone else, he doesn't make that social connection.
The problem with films could be he takes things too literally.
Schools are not always that clued up on milder issues. My son has moderate autism with severe speech delay and whilst he gets good input from his 1:1, his class teacher spends no more than 5 minutes with him a week.
Which is probably also true of my two non SN children who are well behaved and with many of their teachers I have found they don't know their personalities at all, they just don't have the time to get to know the quiet well behaved ones. So just because a teacher hasn't noticed does not necessarily mean there is nothing going on.
I would go and observe him in the class, when I see my son with his peers thats when I notice the differences the most. Your own child's quirks become your normal so often its when you see other children the same age that it stands out.

A lot of the traits that you mention sounded like my DS1 - who doesn't have classic autism, but dyspraxia and SPD. That is why you need to try to find a diagnosis. Spectrum disorders are often co-morbid with sensory issues, communication issues and dietary issues. Finding out where your child is within the spectrum can help in working out which professionals or services can offer the greatest help.

I think you should look into things a bit more.

A lot of what you have written there (apart from the coping fine in school as mine isnt) is exact replica of my DS who is awaiting second opinion for ASD/AS. He also has SPD.

The film thing/game thing is uncanny. DS shuts down in game mode in his head after watching films. He calls them his "games" also in the context of a computer game even the film enactments have levels. For example if I say bed time or I am trying to change his train of thought onto something else he says he cannot stop till he has finished "this level".

We say things are not real and that they are stories made into films and sometimes briefly he understands that, but its only brief. We had 6 weeks of parcel tongue from Harry Potter, we have recently had Chronicles of Narnia enactments, star wars, he played the training camp bit of Tomb Raider, the idea was because he was so frustrated and lacking in self esteem and joining in with his sisters this part of the game was a skill as in leaping and jumping and maze control. Good you think? NO He was good at it but then became Lara Croft at school, home, playground. He played it twice 11 months ago and it has never left his head. If any music on the radio so much as hints as having the same tone of the theme music his eyes glaze over and he is lost in this world where he feels good.

This part of his issues breaks my heart as it is this that I am unable to free him off at the moment no matter what he watches or plays be it supermario or Harry P. It stops him in his tracks from frienships.

Hi, thanks everyone for sharing your experiences. It sounds like we should probably start the process, if only to make sure we have support in place in the future. Would we need to have support from the school though in order to get anywhere?

What is SPD? Coff33, that sounds hard, I don't think ds is quite that extreme, although probably not far off. I can sympathise with not being able to get him out of his world though. If we try to discuss anything else - for example, we read the Bible with him at bedtime - he brings every scenario back to Star Wars/ compares characters to Luke Skywalker etc and gets completely distracted from what we're reading. But it seems he can concentrate at school.

Ds seems to only play Star Wars or Indiana Jones (this is another lego spin off!) at school with his friend - but I wonder whether his friend is actually playing something completely different! He's a little bit unusual too I think.

Hi you dont need to have permission from school to have your son asessed for anything.

SPD is sensory processing disorder. He hates the feel of certain clothes, hair cuts hurt, hates light touch only firm. Cant keep still so sensory seeking. Bright lights and noise he cant cope with or crowds. Also thrown in is auditory processing and filtering. Hence why school is such a difficult place for him to be but we have an occupational therapist helping with this so should see some improvments. He can concentrate and learn and work with no problems IF he is on his own in a plain quiet room with just the TA.

The sensory side is playing a major part in all of this but the ASD side is the games bit due to insecurity and being in control and refusal to let anyone else into his world when he is stressed. He plays these games along side others but not with others so as far as he is concerned they are playing with him too. He is in control in the sense he knows the outcome. With a different game with another child he wont know what happens next and so he wont play.

Bible wise there was a huge difficult time in school over christmas and a good few disgreements with the teachers. God is not real (his views not mine!) purely because he cant be seen so therefore is not fact. The Big Bang made the world as far as he is concerned because he read about it and is interested in space. Fortunately or unfortunately for a 6 yr old DS is very deep and only basis things on fact and what he can see. This makes him very rigid when it comes to trying to explain or request otherwise. He wasnt always like this. It has developed over the years the older he gets.

Hi coff33, that's really interesting and it sounds quite stressful for you! Our ds' sensory issues are not as extreme as that. Also, he does play the xbox with his older sister - they certainly interact. She's really good with him actually. She's a very sociable person and I think he may well be more insular and obsessive without her influence.

He does struggle with the existence of God. He had seen a film about a Bible story - because I told him that another film was fiction, he said that God must also not be real because he'd seen him in a film and everyone in films is pretend!

In terms of school, I just wondered if we'd be taken seriously if school haven't noticed anything?

Hi all

These posts all sound like my son, who is 5 and in yr 1 at school. Ever since reception, school has been nothing but a trial for everyone, he has been seen by a "specialist" (who did not believe in add/adhd etc as "it wasn't around in her day") which was arranged by the school.

We also have difficulties at home, but I can cope with that for the most part, im more worried about the school aspect of things.

My question is how would I go about getting an independant diagnosis/consultation?

Crazycrofter - It sounds like you are pretty well informed on ASDs etc, and he does seem to show lots of the signs of ASD. As for whether it's worth getting a diagnosis - I suppose you have to consider whether that will actually help him in any way or not. He will still be the same DS regardless of whether some professional says he's got X, Y or Z but if that label might help him access services or help at school that he otherwise wouldn't get, then that's what you have to consider. It sounds like he is doing well at school so I am assuming he doesn't need any extra help as yet.

My DS2 was finally diagnosed in March 2011 aged 7.5 although we had known for years and his teachers were very good at dealing with him. I initially went to the GP when he was about 5 years old because school said their policy was not to refer children before age 7. He hasn't needed much extra help apart from a bit of 1:1 so I'm not sure that the diagnosis has made much difference. other children in his class who are struggling also get 1:1 and as far as I know they don't have any definite "labels". If anything I worry that his teachers will have lower expections of him because he is "different". There has been lots of debate on these boards as to whether it's a good thing or not to have a label and I think it's one of those things only you can decide. I don't have any experience of the sleep problems but that's one thing I'd see the GP about.

I'm a secondary teacher who works with SN children extensively. I'd definitely recommend getting a diagnosis as unless you do, you won't necessarily get the support that your child needs throughout their schooling. As one other post pointed out, Primary School can be great at dealing with these types of issues but that is generally because they are a smaller setting with less children and so can put in place strategies that aren't sustainable once children move to secondary. It can be quite difficult to get a statement once children come to secondary if they haven't got one already. From what you've said, if it was my child, I would definitely start the diagnostic process. Good luck.

Thanks, so it sounds as if the main reason for a diagnosis would be in case of problems at secondary level? That seems a long way off at the moment!

Ambkad, sorry you're having problems - I think you will need to go to your GP and do it that way from what others have said. I think they would probably refer you to CAMHS, but I'm not sure? I too was wondering if any diagnosis would be hindered if it's not backed up by reports from school, but maybe that's not necessary?

Thanks, so it sounds as if the main reason for a diagnosis would be in case of problems at secondary level? That seems a long way off at the moment!

Its not that far off in terms of waiting times for getting assessment to end result of a diagnosis. Some people on here have been waiting years and some waiting lists are 12months long before even getting your foot on the ladder in some areas. Unfortunately a lot of people have had to pay and take the private route because the waiting lists are so long. Or the lengthy wait for a statement of needs if one is required and they are tougher to get once in secondary so it is beneficial to have one in place well beforehand. :)

It also depends on your current school and their understanding of ASD. DS school didnt and still dont really have a clue. They waver from patience and understanding one day to trying out new methods and because they have worked think its "all gone away now" and drop him back into normal school routine with huge consequences for them and him. So I think a diagnosis is important there and also the school can access things like Autism Outreach etc to come into school, along with SALT and OTs.

Thanks everyone for your help! I think I'm going to discuss with his teacher at the next parent's evening in Feb and then take it from there. We're already having to take him to the hospital every month because of a cataract in his eye, so I'm not exactly looking forward to the prospect of more appointments!