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.

Oh Nikos, your post was very helpful. It's just that I swing back and forth and it'snot as if the psych came and blew the AS suggestion out the water; he just refused to confirm it!

You're right, it is pretty much aa social but still severe. There's no special interest either as he's playing with something else every 15min or so.

2yrs ahead probably is quite advanced. The psych also said he was interested to hear from DS's teacher that his comprehension is on the same level as his verbal intelligence. I'm not sure what this means. DS understood very early and could foolow simple instructions like go get your shoes at about 11mths.

I just feel like I'm in some strange nomansland.

Tclanger, thats interesting, you are right, that could be sensory though he tells me he does it because he is frightened of people.

Language developed fine and he has no problem with literal interpretation that I'm aware of. We use expressions like splitting headache and get your skates on all the time at home. Of course, he could just be used to those.

He's been to football matches with DH and wasn't at all overwhelmed by the crowd or the noise only when the man next to him started talking to him!

You know how you can understand everything your toddler says but it takes a while to tune in to other people's kids? And vice versa? I think that explains the social interaction being different at school, it's quite hard work if it doesn't come naturally. My DS is fine with people and places that are 'on his list,'.

Myredcardigan, I honestly don't know if this will help, because you have a long path ahead of you, but your little boy sounds like me aged 5, and like my DH aged 5, and like all my friends and colleagues aged 5.
I work in the (bigger) university in the UK's hotspot for AS, and seriously, a very high proportion of the crusty old dons here would be borderline AS (I include myself in the crusty old dons, I'm 32). Traits of AS don't matter at all in this context - we are happy, have fun, lead fulfilling lives, know when to give each other space, and don't do the things that might bother us. SO, even if your little boy does have some difficulties, and does have some sort of ASD... in the right context it's not a handicap at all.

This really isn't going to make his life a breeze in school though. Does he like music? That was always a fantastic escape for me and my DH in that we were doing something collectively, but were doing our own thing independently at the same time.

Thanks again. I didn't know there was an AS hotspot. If it's an old university town could that possibly be because those affected flock there rather than it be environmental? DS is def an academic!

Gosh, didn't know there was an AS hotspot. Please tell us where it is so I can buy ds his future student flat there (he's 4 by the way).

There's an old joke that if you visit an engineering college it is easier to spot the people who don't have Aspergers.

tee hee at nikos...

Cambridge is the AS hotspot... partly because people flock here because the services for kids with AS are very very good, and partly because the academic lifestyle is absolutely perfect for (borderline or mild) AS.

That said, organisational difficulties can make life hell, particularly for students with AS. And as a don I have to do a fair amount of social kind of stuff, which I wholeheartedly loathe.

I think life is good here because it's a small university town - I had the academic lifestyle in London, and NHS/social services are good in london, but I hated the sensory overload of the place. So that gives you a choice of Oxford, Cambridge, and quite a lot of towns in Scotland....actually probably quite a lot in England too but I am not from here so don't know what they are...

and at buckets too

Southampton has a new adult diagnosis centre as well as the excellent kids assessment programme. And a sciency university. Who knows, maybe in 10 or 15 years time it too will be proudly waving the flag.

excellent.. so that's somewhere I could go when I don't get tenure at Fenland Poly then!

I really feel for you and my advice would be 4 things:

1 - Pursue for clearer diagnosis as to what the issues are through your HV and GP

2 - Treat the difficulties as if it is ASD i.e. the gross motor problems - requires support from OT so ask for referral

3 - Ask for support from Portage worker who can provide help with social skills and interaction with peers at school

4 - Keep a diary of behaviours so you can start seeing how they behave in differnt environments as although you may think there are no sensory issues the fact that there is less interaction happening at school may be because the environment is to "busy". It will also help stop you going mad as you won't be repeating the same information over and over again.

Deal with each area one step at a time.

Thank you. Yes, of course his problems with interaction at school may well be sensory though it has never occured to me because he loves going so much. He doesn't seem stressed out by either the physical environment or the other children in general, just very stressed when they try to speak to him or get him to join in.

I sooo need to get some sleep but my head is just so full of worry for him. So instead of going to bed, I'm trawling the internet for clues one way or the other. Almost wish we'd never had the bloody assessment as all it's done is confuse me even more.

I hope I haven't done damage here - I wasn't trying to make light of AS/ASD or to say that all academics/tactless people have it. As someone who probably has a mild case but didn't know AS existed until long after a diagnosis wouldn't have made any difference, I do understand some of the suffering, and in particular the sensory difficulties. I do also see features of AS in something like 1/4 of my colleagues here in this particular university. My original point was simply that it is not considered a problem here, it is common in adults in this university, and it doesn't stop us from doing what we want to. I sincerely hope that gives Myredcardigan some glimmer of light at the end of the (very long) tunnel.

No,Svalbardy. All POV very welcome. Your post gives me hope that even if we do get a diagnosis, there's hope that he can have a good quality of life. My biggest worry by far is that his life will be horrendously difficult.

Tclanger, as that very person who was told that very thing, I can indeed confirm that it was entirely inappropriate in my case.

I guess when looking at the future for a child, it's one of those situations where people can either be very positive, or very negative. I will not for one moment pretend that my life has been easy, or is easy. But neither would I want to lose having an ASD. How I see the world, how I encounter it, has great meaning for me, brings me great joy. It can bring problems, yes. Huge ones. But those are largely because of the way society works.

Imagine this: If you are a fish, how would you like living at the top of a tree with a flock of birds? Is this fish a broken bird? Is its quality of life always going to be dreadful....?

....or could someone just put it into some water somewhere and solve the problem for it?

Our lives are fairly fine if we're in the 'water' - an environment where we cope ok.

Our lives are not fine when we're bunged into chaotic highly social highly sensory-stimulating environments. They hurt us.

The knack is to realise what the enviroment round us is doing to us. Solve that one, and you've got a much happier child. Not perfectly happy - there's no such thing. But happier.

Every child needs someone to fight with them for somewhere safe and appropriate for them to be.

I use a lot of support. I have two autism advocates, I use an autism support network, I have a very good autism psychologist who helps guide me from time to time, and I never, ever work alone in situations. I know that I need to rely on other people to tell me who's safe and who isn't, and to interpret body language etc. If I'm not sure what something means, I've learned to ask. Often I find no-one cares and no-one helps, but sometimes people do.

I've set up a system that works for me and allows me to lead what appears to the proverbial naked eye to be a life as normal as anyone else's...for a while. It can be done. Not easy, but it can be done.

Totally understand the limbo land of non diagnosis.

Hope you don't think this is cheeky, but how much was the hire of this clinical psychologist?

Tclanger, shame..I was looking forward to learning a new word , and thank you for your kindness in caring. It was certainly an extraordinary debate in which that comment happened.

PS lovesdogsandcats, clinical psychologists cost around £500 to £1000 for a full dx and around £90/hr to get extra advice, I've found. Not a cheap option