We had DS assessed for Asperger's today. Can anyone talk to me about our results?

[myredcardigan]

Hi. I've been worrying about DS (5) for a while now and today we had him assessed for AS. It was a private assessment by a clinical psychologist recommended by NAS.

Anyway, he was observed in school this morning then at home this afternoon. So the verbal feedback is that yes, he has traits, a few severe (social) and others mild (mildly rigid play) but not enough to diagnose. He basically said to get him assessed again in 18mths. I just don't know where to go from here. I'm emotionally shattered as it's almost as if the uncertainty is worse than actual confirmation.

The psych gave us a run down of the traits he displayed and then points which as positive and I just don't know what to make of the information.

Has anyone else been for assessment and had such ambiguous results? Can anyone talk to me about our results as I'm sitting here in tears not knowing where to go from here. Ok,rundown;

Worrying points: (as mentioned by psych)
-No interaction with peers whatsoever at school although much better on a one to one play date.
-Covers his eyes and retreats to the corner when pushed to join in at school.
-Seems unable to initiate conversation.
-Excellent long term memory.
-Hand flaps and hand wrings when very distressed.
-Although his play is very varied and imaginative he always wants to be in control. Friends/sisters have to follow orders.
-Horrendous sleeper.
-He struggles to ride his bike and does not enjoy team sports.

Positive points:

-No ritual behaviour
-No need for routine although he does do better socially if prepped.
-He has no sensory issues.
-Lots of joint attention. He shares/shows what he has done. Points things of interest out. He pointed before his 1st birthday BTW
-Lots of original pretend play. He enjoys dressing up, having tea parties etc. It is imaginative rather than copied.
-Always wants to play with others at home rather than by himself.
-Enjoys board games and has no problem taking turns or when he loses.
-He enjoys rough and tumble. Also running/walking/climbing. He loves play centres and is not distressed by them at all.

The clinical psychologist couldn't even give me an indication of whether it would get worse. In fact he said sometimes it does, other times the symptoms subside.

I just don't know what any of it means and what to do now. Sorry this is long. Thanks for reading.

I'm so sorry - you braced yourself for this and now you're still uncertain.

Will you get a written report? Could you ask him/her to include some recommendations for specific inputs at home or nursery to achieve specific achievable goals. eg when they push him to join in are they being counterproductive?

Hi Lingle,thanks.

Yes, we will get a written report but of course I was desperate for as much initial feedback as possible!

I did brace myself, expected the worse, hoped I was wrong and now I just don't know. He picked up on traits I hadn't which made me feel guilty.
I'm just so emotional tonight and don't know how much more uncertainty I can take.

Sort of been in your shoes - DS was assessed for ASD last year - as he has a glaringly obvious language problem. The outcome was that he "probably" didn't have ASD but they wanted to keep an eye on him to see if his social commununication skills improved as his language improved. Like you, I felt rather shaken by it all. TBH I had so psyched myself up for a DX, I felt as if the rug had been pulled from under m not getting a DX. The hard thing is that there is no crystal ball - you don't know whether to expect things to be easier or harder in two or three years down the line.

My very first thought is - do school agree with the psych views on social skills etc. SALT told me that DS didn't interact with his peers, but this was rubbish, she must have just got him on a bad day - these visits can as a snapshot, not alway quite get our kids right.

Without a definite diagnosis, there is still plenty of self-help type stuff you can work on at home, if you read around the more practical type books dealing with sensory issues and social skills. (jessica kingsley publishers and winslow publications have a wealth of useful material).

Thank you Tclanger and Totalchaos.

He didn't mention anything about an OT assessment, maybe it will be in the report. What would that involve?

His teacher does agree with the social assessment as he is like this every day.
Though he loves having friends round to stay and will interact quite well though he is very easily led by both children his own age and DD1. If she is naughty, he will copy her.

He doesn't have any language difficulties and even the psych agreed that he spoke like any other 5yr old albeit very articulate. He is very bright but doesn't speak 'professory'.

The psych said the absence of ritual and routine was one of the main reasons why he wouldn't diagnose. That and no special interst or narrow interest. Of course this is great for James but makes the whole process fuzzy. I've had a glass of wine and stopped crying at least for now.

Oh you poor thing, inconclusive has got to feel worse than an actual DX I'd imagine.

So did he do the ADOS play test and ADI-R parental interview? Google them and ask him to do them if they don't look familiar.

He seems to be working to a stereotype IMO. My DS has a DX of AS (he's 4 tomorrow) and has no sensory or routine issues, no stimming, loves to tell you what he wants to tell you (could be construed as pointing things out/sharing his work.) Rough and tumble play can be very popular with ASD kids actually, helps them get their stress out - not all of them have touch issues. My DS will play physical stuff with other kids much more than say toys. Climbing and no sense of fear/danger is also a trait - my DS is a nightmare for hiding at the top of climbing frames!

I didn't think ASDs get worse if the child has the support it needs from parents, schools etc. Your DS already has a head start on all the millions of ASD folk who have struggled through the ages because he has you trying to understand and help him. Don't feel guily - when we had our ADI-R interview, we came out thinking we'd made our DS sound completely normal!

Forgot to say, you can always use the same approach for handling any difficulties that you would have done if he'd been DX'd anyway. The spectrum traits can all be approached by seeing them as coping mechanisms for an overactive brain - just carry on as you'd planned to when you were expecting the DX.

Hi

I just wanted to add my sympathy!

I can completely understand your frustration/bewilderment. I think it is hard to conclude that there might be something 'not right' with your child and then go through all this waiting for someone to tell you how you can make it better. However, you've effectively been left no better off and that must make you feel very anxious.

I have no experience in this but I know that you need to keep on asking questions of this psychologist, your GP, SALT until you can get this straight in your head. However, at the moment, it maybe that the answer at the moment is - maybe. That is tough to deal with

Thankyou Buckets and Debs.

Buckets he did do a play assessment. From this he said DS's play wasn't rigid enough. He said he was happy to take turns and adapt the game. Would this be the ADOS? He also asks DS to talk about something he was interested in (after 2mins of shoulder shrugging DS started talking about dinosaurs)then he (psych)steered the conversation in another direction and DS was happy to talk about swimming.

I had to fill in a form called SCQ. Is this like the ADI you mentioned?

Sorry you were left in limbo. I feel this is where we will be - DS has a contradictory range of behaviours too. TBH I have become used to not knowing. We have just started the referral through GP. I suppose I have also had the Ed Psych saying for some time to me that AS is often not diagnosed until 67 so I am a bit prepared.

Just googled ADOS test. I can just find references to it being a play assessment so I'm unsure whether this is what he did. Does anyone have a an example of things done in this test so I can see if this is what he did.

Mumfun, please tell me that was 6 or 7 rather than 67 as I cannot wait til I'm practically on my deathbed to have an answer.

It really is a postcode lottery how it is assessed Do sign up to support the Autism Bill while you're feeling cross.

Our ADOS was for pre-schoolers so might have been different - the psych and SALT went about doing this hilarious silent comedy routine with lots of different types of toys to see how he reacted/joined in etc. The ADI-R was about 90mins long interview for us, apparently it takes longer for older kids as there is more for parents to remember. It basically prods you to tell every peculiarity he's ever had and when, if you can remember. Things she was writing down were not things we realised were strange and wouldn't have written them down ourselves - like he makes up his own names for things eg midi-sleeper bed = 'clubhouse', sleeping bag = 'slug costume.' The fact that he burst in during it shouting 'My rocket has got a superstructure!' helped too

It does sound a complex mix of symptoms and doesn't immediately jump out at me as ASD tbh. Key things that he does is show joint attention and use creative play.
My health visitor, when we were going through dx, said she sees a fair number of very bright little boys who just have delayed social and emotional skills. It's like a part of their brain is in superdrive during development and the social stuff has to catch up.
How bright is he and how much are his symptoms interfering with his school life? My ds has an asd dx and he plays really well at home with his siblings and now to an increased extent at school. So asd children can be different in different settings (sorry that just confuses matters again!!!).

Thanks buckets, very helpful.

The SCQ thingy didn't last that long and it was more a questionnaire than an interview. Yes, DS makes up words too. I always thought it was due to excellent imagination.

Can I ask what prompted you to get your DS assessed? I was concerned about his complete lack of social interaction and then school became concerned too.
He is only 5 so maybe the preschool ADOS test would have been used despite him being in school.

I have to say, your posts are really helpful but are now making me worry that our assessment was not thorough enough! I have decided to contact the HV and get 'in the system' too.

The reason I'm feeling so crap about the inconclusive outcome is that although in my head I'm sure it's there, I do continually read description of AS and fail to see DS in any of them (other than the social bit) I filled out 3 online checklists (one was the Tony Attwood one) and got a no answer each time. Of course this means that DH is completely in denial and he was even surprised when traits were confirmed at all yesterday.

I wonder if there's lots on kids like DS with lots of traits but not enough to diagnose. I was just so geered up for it, expected it,practised how to take it without crying. How pathetic is that?

Do you know if the HV would refer me to a Paed? Wouldtheir assessment differ from the clinical psychologist we saw yesterday?

Sorry for all the questions. I just feel back to square one.

Oh Nikos, now you've got me in tears again thinking I'm trying to label him as something he's not. Thanks for your advice though, all input is really helpful.

It was mainly the joint attention thing that kept stopping me seeking an assessment earlier and seemed to be the main sticking point for the psych yesterday. I mean, when he'sin the back of the car with his sisters, he'll point to things out the window to show them or us. If I don't turn around to look, he'll say something like, 'quick mum (or DD1)look' The other thing the psych pointed out was when DD2 was crying he went over to her and sshhhed her and got her a teething ring.

Nikos,he's quite bright but I wouldn't say gifted. According to his teacher,he's about 2yrs ahead across the board.

Ok, just spoken to the HV and I'm going in to see her tomorrow morning. Not sure whether she will just refer me or tell me I'm mad!

myredcardigan, don't forget it is a spectrum. He might still have the extra sensitive brain, which would explain why social skills weren't top of his Do List as a baby/toddler. Maybe he's just low enough to have worked out coping skills for himself (and with your help.) It's good - it means he can learn new things and will learn to fit in with all the boring people in time. But he'll always be your eccentric little boy and that's part of what you love.

BTW re your two examples, the pointing out could be classed as egocentric speech and the baby pacifying could be because he hates the noise and has nothing to do with empathy!

My DS was always different, even as a baby I felt he didn't need me. I used to play with other people's kids at toddler groups because he was happy playing by himself. Had to teach him to do affection and eventually felt I'd reached the status of patronised old pet dog to him (high praise!) He was 2 when I aborted a disastrous trip out with the kids, came home crying and just thought, it shouldn't be this hard. Looked up autism and found this checklist. He is much more affectionate these days, loves his baby brother and pre-school have really helped with adult direction, he's good as gold most of the time now.

I didn't realise that making up words was an AS trait! DS1 used to do this when he was younger - wee-wee steamroller for loo roll, bogeysholes for nostrils and lady marmite for marmalade. I used to think that it was a sign of a quirky and original mind! Actually I still do - I think it can be both

MyRed - do you think you need the dx to get your DS extra help and support? If not then you could wait and see - which is what we're doing with DS1. Could school help with social skills, whether or not he has a dx? Someone on here said something very wise the other day - before dx, treat the child 'as if' they had the condition, in other words, help him with the things he finds hard and encourage his strengths (which sound considerable). But if you need the dx to get the help from outside agencies then it much harder.

yes age 6 to 7 sorry!

Thank you so much everyone!

Buckets, I've looked at that NAS checklist many times over the last few months and the only one he fits is that he doesn't smile socially. He does want tointeract and is always asking when he can have friends over. He is bossy but not completely rigid in his play and says to them things like what shall we do now?

He passed the CHAT test at 17mths with flying colours. Lots of spontaneous pointing from about 10mths onwards at dogs,cats etc and he used to turn around to check I was looking too.

He isn't at all independent and I've never known him to prefer to play alone at home. He always wants to role play with us all dressing upor make lego constructions with his Daddy etc. Yet at school he does not interact at all.

Thank you Tclanger,your blog is really interesting. I cannot find any sensory issues at all. He is fine with sound, not disturbed by loud noises, was never jittery,no problem with touch or lights etc, no food issues.

He's just come in to the study to invite me to penguin's teaparty! He's made a lego cake and the other teddies are there! That must be good, right???

You're right of course that it'sa spectrum. I'm just disappointed not to have got a definitive answer yesterday.

So sorry if I made you cry!!!! that definitely wasn't my intention. It's just that it sounds like your ds' only problem is the social interaction side of things, and that only in certain situations.
I would say working at 2 years ahead of his peers was pretty advanced. What was he like at preschool when play is much less structured? Did you have any concerns about him before he started school?
I don't think you are in any way wrong for investigating. We got ds dx before he was 4 and it has brought a lot of support in.