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Starting to suspect that ds1 (10y) has AS

3 replies

HighFibreDiet · 06/05/2012 15:46

I have wondered for a little while if ds1 is on the autistic spectrum or has AS. Ds2's issues were far more pressing and ds1 seemed to be managing so we let him be. I look at the Asperger's descriptions and he fits some of the criteria and not others. For example, he doesn't seem to be bothered about physical touch and he was always good at bringing things to show me. But he doesn't make eye contact much, he can do some pretty impressive monologues about stuff that he's obsessed with (currently Pokemon), he has various mild sensory issues like having to wear 'soft' trousers, he can take my instructions very literally and is terribly pedantic in conversation. At times he's had some nervous tics, he has food sensitivities, toilet trained late and still has enuresis (which we thought was over but has recently returned). He can get very angry in certain situations and the 'Explosive Child' book has been very helpful but we still need to work on some issues. In fact he's also been to a psychologist with regards to anxiety, at first, and then anger. She used CBT and it seemed to make a difference. He always grumbled about going to sessions but was quite good at working through the activities with her.

The main thing at the moment (which I may actually have mentioned here before, a few years ago) is problems in the realm of fault, accidents and intent. If someone accidentally hurts him, he attributes intent to them. But in the reverse situation, if he does something by accident, he can get very angry if anyone suggests the accident was his 'fault' and that he should accept responsibility. It's as if by accepting responsibility he is accepting intent too.

Also if I say we are going to do something, and then an unforseen event changes my plans, he thinks I was lying in the first place - even if I could not have anticipated the change of plans.

On and off, he's had problems with being bullied and fitting in at school. He's not very good at changing his behaviour for the sake of fitting in. When he was younger he would often come home and say 'no one would play with me at lunchtime' when further questioning revealed that actually it's because they were all playing a certain game and he wanted to play another one. He doesn't seem to acknowledge that if he changed his plans and joined in with their game, he would have had lots of people playing with him.

Anyway, these are just a few examples. As I said before, I've suspected he might be on the spectrum but thought he was coping and I didn't want to fix what was working. Recently he hasn't been coping so well and I wonder if having a diagnosis will help (a) the immediate family to understand where he is coming from and (b) possibly give us access to more services and support.

I suppose I'm wondering if other mumsnetters have children who were diagnosed 'late'. So much of the information seems to be about early diagnosis and intervention. But at 3 or 4 yrs old it would have been hard to pick up many differences between him and other kids.

I'm also wondering how to broach this subject with dh, who is far more suspicious of labels than I am. I would love to find a story about a child with Aspergers and e-mail it to him, saying, 'look, don't you think this child sounds a lot like ds1?' So far I haven't found one that quite matches, although many of the stories on the internet have bits that seem very familiar.

Anyway, if people on here have comments or suggestions I would love to read them. (I'm not up to date as I haven't been on mumsnet for a while. I used to post about ds2 quite a bit. He has epilepsy and sensory processing disorder. Thankfully, he's thriving at the moment.)

Thanks in advance

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kittycat68 · 06/05/2012 17:16

my ds was diagnosed late. and that in itself is a challenge. we suspected aspergers at about five but getting a diagnoise was along hard slog TBH your first port of call has to be the school to see if they would refer to educational phycologist, but be warned long wait, you could try gp ask for a CAMHS referal who can also diagnose, but long wait here too.
it will depend on your area as well. often by the time they are ten most will say its parents worrying about nothing as he would have been picked up before if he was on AS.
I too have older child with problems, went private for phycologist report in the end and it was done start to finish in four months but then you have to go for statmenting which took another year! private costs about £2000 ish.

my ds diagnosed aspergers when he was 11.
It is important that you go with your own instinct here, as you say alot of as traits your describing. i ask for a diagnoses asap, because secondary school is a whole different ball game to primary! plus puberty! ( nightmare!)
in my area nhs diagnoses would have taken about two years! and i didnt feel my ds could wait that long. ds now in special school and much happier with his friends are mostly on the spectrum as well.

suburbandream · 06/05/2012 19:45

As kittycat said, the route to diagnosis can vary from area to area. Personally, we went to the GP first but DS2 was younger - 5 at the time and the school kept on saying "wait a while". Initially we didn't get a definite diagnosis, but he was assessed again at 7 and then we got a diagnosis of Aspergers. For us, having a diagnosis meant being able to explain to people, find out more ourselves, and get help from school and outside. Personally, I'd rather DS2 was labelled as "Aspergers" than labelled as "weird/geeky/odd/awkward/rude/etc etc" Smile. I found this book really good here and also this from the National Autistic Society it's free!. The thing is, with Aspergers and ASD that because it is such a wide spectrum, not every child has all the attributes. DS2 doesn't mind being touched, does good eye contact etc but like your DS, he has trouble realising when he's done something to hurt someone else although he is very good at playing the victim when he gets treated unfairly! I'm sure someone else will be along soon to give some good advice

HighFibreDiet · 07/05/2012 13:29

Thanks for your replies. I can understand the push for early diagnosis but I think it's a shame that it means people can slip through the net because their observed behavioral differences are mild. Just because they have developed their own coping mechanisms it doesn't necessarily mean they are the best ways to cope. I know at least one person in my rl who wasn't diagnosed until adulthood.

Anyway, we're not in the UK and so I guess we'd have to go for a private diagnosis in any case.

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