I'm feeling really down about DS1 today. I wish I could understand him.

[Pinkchampagne]

I am really struggling to understand his behaviour. He is so different from other children his age, and it is starting to stand out more and more, but we still have no idea what the real problem is.

Just had all the paper work back from child psychologist & we are still no clearer. He ticks some boxes for ASD, but not others. His socialization skills have been put at an age equivalent of 2.9 years (he is 8.5), the WISC test showed signs of ASD, but he passed the Sally-Ann test & his empathy and ability to read emotions came out as very good, which went against ASD.

Children his age who come to the house tend to play with his younger brother because DS1 never wants to play what they want to play. Unless they want to play playstation games he doesn't want to know. I feel sad that there will come a stage where children just won't bother with him, and there has already been signs of bullying going on with other children in his class.

I find him so hard to really understand. He can be very frustrating & is very hard to reason with.

I am a lone parent & I find it hard to cope at times. It is really really getting me down today & I am feeling very tearful. Sometimes I just don't know how to cope with him.

It's an Autistic Diagnostic Observation test, where they basically assess your child through observing him playing, interracting etc. I think we had something similar via a two-way mirror as part of DS's assessement for autism. If you put "ados test for autism "in google, you'll find more info.

Pink
Hi. Your DS sounds very much like mine who can empathise until the cows come home and is very good with emotions. He, like Peachy's Ds, has a complex set of difficulties some of which have only been recently diagnosed. I think it is the mixture of stuff which makes it problematic to diagnose because, apart from the dyspraxia, he doesn't have anything really really badly IYSWIM. So yes he has Aspergers but not as badly as some other people - if he didn't have the other stuff he wouldn't need as much extra support. He does have dyspraxia pretty badly and dyslexia but the Aspergers has compounded these. Likewise he has a S&L difficulty but no one apart from a SALt would know.

Perhaps your fellow has a range of difficulties which 'muddies the waters' if you see what I mean with reference to diagnosis. I have to say everything you have written about him rings bells for me. It may be that you get your diagnosisis in dribs and drabs. OTs are very good at spotting dyspraxics as well as audio and visual perception disorders (mine's got those too poor love).

I always find the holidays compound emotions regarding DS's SEN. I suppose it gets thrown in one's face just that bit more and you see other kids out and about on their bikes or walking to the sweet shop and it just seems a bit bloody unfair.

All the best.

Your last paragraph summed up just how I feel, flyingmum, and I have had a bit of a cry again.

AMAM - thanks for explaining the ADOS test to me. I was unsure of what it all meant.

Pinkchampagne .

I think this kind of "now you see it, now you don't" situation is just insanely difficult - knowing that something is not quite as it should be, but being unable to establish what exactly it is.

Hugs.

I am finding it very difficult atm, SSB. I have really been noticing DS's differences recently, and not being any closer to understanding exactly what the problem is, is very hard.

I look at him sometimes, when he is standing out amongst his peers so much, and I worry about what the future holds for him.
He doesn't appear a happy child. He can get very distressed over the simplest of things, and as he is getting older it is standing out more & more. I fear he is going to be a prime target for bullying.

It's just a thought, but reading through your messages I wondered whether the social activities you / the school are encouraging him to get involved in might be a little bit too stressful for him at the moment. If his social skills are similar to a two or three year old, joining in activities that are very structured (e.g. swimming lessons, beavers, organized games) might not be appropriate yet. (Bit like asking a beginner reader to read War and Peace.) It might be better to focus on really simple things like sharing (e.g. sharing pens / scissors) or turn taking (e.g. taking turns on games on the playstation). Also modelling negotiating, giving compliments etc. It may need to be closely supervised by an adult with maybe only one other child. As he gets better, increase the number of children involved and reduce adult prompting.

If that is way off the mark (and I'm obviously not aware of all your circumstances) feel free to ignore. It must be really horrible to see your DS unhappy.

PC, im in a similar postition to oyu. My DS is nearly 8 and it is obvious he is not 'normal' IYKWIM.
My DS is undergoing assessments at the moment but can function and appear normal if he has a high level of adult support, this was the case in the last assessment he was with 14 adults and 3 children and showed only small ASD traits. CAHMS who assessed him said he was good at being flexible and some other things from their observations which are just not true in real life. My DS is in a unit at the minute after being kicked out of his 2nd mainstream school and slowly but surely we are getting to find out what is wrong with him.
Ds has an intelligence age of 10 but emotional age of 2. he has no social ability and lots of asd traits BUT he communicates well. he doesnt recognise his own or other peoples emotions and is very aggressive.
All i can say is keep pushing. I have piles of evidence of my sons behaviours from different schools and proffessionals and im finally getting closer to the ASD diagnosis that we feel DS meets.
We currently have a diagnosis of ODD but that doesnt explain all DSs traits!
Be strong and keep smiling!

No, I totally agree with you, neolara. It is my mum that keeps pushing for him to do things, and I tell her that there is no point as he doesn't enjoy them.
She booked him into Beavers, despite me telling her I didn't think it was a good idea, and took him along. He only went the once as he couldn't cope with it at all, and sat on his own for the entire time he was there.
She booked both boys into swimming lessons without me knowing about it, and apparently DS1 said he wanted to go, but the first morning was just awful. He really really didn't want to go, but he went in the end, although he refused to go in the water until 60 seconds before the lesson ended. He got a lot better by the end of the week, but I really don't think forcing him into these things is a good idea at all.

Sorry to hear you are in a similar position, bonkers. I hope you get some kind of proper answers soon.
It is so hard isn't it?

PC - so sorry. (it's me, Blu - and you know who 6spot is, don't you?)
It does sound complex. But ever sionce you have talked of DS it has been clear that if anything he has been super-sensitive to emotions, and what makes people feel what they do.

But then Aloha's little boy - originally dx'd with a dyspraxia-like condition - was eventually dx'd with AS. I have met him, and he is very sensitive and perceptive about emotions - but like your DS has certain socialisation issues at school.

It seems frustrating because perhaps if they could pin dpwn a dx they could suggest specific and effective strategies to help him.

Gorgeous boy that he is.

All these name changes! I had figured who 6spot was.

It is frustrating, Blu. Sometimes I look at DS1 & feel reassured because he has had a bit of a breakthrough (like joining in with the after school football this week!), and other times it stands out a mile that he has problems & is so different from other children his age.

Anyway, have managed (with a little help from school SENCO) to chase up both OT & speech therapist, and he now has his first appointment with both next month!

Hi, I really feel for you. It's hard if all you want is some answers and you feel like there is no-one in this world who is actually helping you. It's the revolving door again...

Re: the Sally-Ann test, it's another autism myth, here's something that I found interesting.

Hope the OT assessment will shed some light. Once we found out about DS1's (ASD) sensory processing issues many things started clicking into place.

Well, I guess having breakthroughs like joining the football club are re-assuring in that he is capable of progress ..but it would be good to have a more pin-pointed dx of his difficulties, wouldn't it?

I'm pleased you have got those appointments, anyway.

How is he emotionally...it's nearly a YEAR isn't it?

I know, I can't believe I have been in this house nearly a year! I should have an anniversary party!

He is a deep child, but school say they have noticed that he seems happier in himself than he did earlier in the year, which is good to hear.

It is hard not to have answers. There is clearly a problem, but we have no idea exactly what it is yet. Hopefully the appointments may get us a bit closer to a dx.

DIL - thanks for the link - I will take a look at it now.

That article was interesting, DIL. I didn't understand an awful lot about a lot of these tests that were carried out on DS.

The phsychologist didn't recognise DS's concentration problem at all. She thought his concentration was ok, but it is far from ok. On a 1:1, lots of DS's difficulties weren't noticed. She was fairly sure there was a learning difficulty of some kind though. Hope this will be looked at in more depth with the OT.

Hi PC. We got a lot further with paed than with ed psych, and further still with Camhs. DS (9, AS + dyspraxia+ a few other bits and bobs!) Swimming groups were awful; but if you can afford it, 1-1 swimming with SN trained coach is great - he goes whenthe pool is very quiet, and she follows his mood - sometimes he does lots of lengths on his back with his eyes shut - looks like an alligator!!
Football was good until he sat in the goal because the ball wasn't coming his end enough - didn't have a clue about his team winning.
DS goes to archery now - quiet, focused, and competitions are held through internet, so you never actually meet the opponent - fab!
It's so horrible waiting for assessments - hope you get some answers soon.

Thanks, catok. My Ds will be 9 in September, so a similar age to your DS. The 1:1 swimming lessons sound good. Not sure if anything like that is available near me.
He is ok with his swimming lesons now, but geting him there that first day was just awful. He is in a class with much younger chidren though, to build up his confidence.

We have seen the pead twice, and go back in July, when hopefully we will be a bit closer some answers.