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I am backtracking in my beliefs about DS'asd....

(13 Posts)
mysonben Fri 14-Aug-09 15:20:40

Here i am again at this point when i think my "gut feeling" could be wrong, that maybe i'm overworrying about DS (3.9, asd ???) and over-analyse everything about him , jumping to conclusion too quick about his "oddness".

The thing is both DH and i have always felt ds was sort of different, but never thought it could be asd until the begining of the year.
The "seeds of suspicion" were planted by ds's nursery, and finally by the paed ds was refered to back in april, i was told then ds had mild asd.
The more i then looked into it, the more i was convinced the paed was right about ds being on the spectrum.

Now ds is being refered to CAMHS to get to the bottom of this.

At our last paed app. last wednesday , i got the impression the paed was "slightly changing her tune", she said ds had made good progress with speech and is now parallel playing at nursery so it's an improvement too (true!), she said there were some behaviours that needed to be investigated further (ok!), she said a lot of kids with SLI can present with some "autistic traits" but that doesn't make them autistic (yes we know that), then she said "none of the autistic kids she sees in her clinic show the level of interaction that ds showed on that day" (he was quite good i agree).

His level of responsivenes has also increased *a lot* lately and he actually initiate small talk with us (i'm not saying whole conversations as he still has expessive/receptive issues), he now seeks out joint attention with us for fun (he ever hardly did that up to christmas unless it was for his needs).
OK he still has some problems with interacting , communicationg appropriately with his peers but could it just be just down to his speech difficulties?

So many questions, i don't expect anyone to know the answers (you'd need a crystal ball for that! wink).
I just really wanted to say i feel so unsure right now, is going throught all these assesments with CAMHS going to be for nothing because ds will be found to have sli and nothing else?

I mean ds is getting help already from salt and senco, and ed.psy will soon do an assesment regarding more support (statement? maybe?)

Would you keep the CAMHS referal going? Would you wait a bit longer to see if ds gets even better in a few months and by then it would be clearer as to whether he has asd or not? Or do we need to have the CAMHS assesments to be sure once and for all.
Should i ring the paed and call it all off?

Sorry for the long rambling post, I'm so confused at the moment, and don't know what to do for the best. sad

sc13 Fri 14-Aug-09 16:53:36

I'd keep the CAMHS going, but that's really up to you. I think what REALLY matters is
1) he's making progress
2) he's getting help/support/intervention on the areas that you all agree need intervention

On statementing, we've only just got the ball rolling, but many people will tell you it may be difficult to get one without a dx
Try not to get stressed, he sounds like he's doing so well

Marne Fri 14-Aug-09 17:40:00

Its so hard isn't it?

When i was first told dd1 had possible AS/ASD i started reading through the AS traits, dd1 fit most of them but then again so did most people and children that i know. Then we had the long wait (2 years) for a dx, during this time there were days where dd was clearly Aspergic but most of the time she seemed NT, as she got older the AS days got lesser and i was kind of expecting not to get a Dx for her. I was shocked when she got a DX of clear AS, the pead explained that she was clearly Aspergic because her speech was years ahead, she is very bright and she struggles to play games with others (likes to win).

Its almost a year since her dx and sometimes i'm still unsure about her dx, she can now share with others and understands that she doesn't have to win, she is over a year ahead with english and maths but i'm starting to think maybe she's just a bright sensitive child. We do still get days where we see more AS traits but whilst at school she comes across as NT.

I would stick with the CAMHS and i hope you manage to get some answers.

logi Fri 14-Aug-09 19:27:15

MARNE i found reading about your dd1 interesing ,this seems just like my son who is currently being assessed at CDU we will get the results in a few weeks,i read alot about ASD and see so much of my son in some ways but not others,my son can read well above his age (5) and is doing well with math,yet some days all he seems to do is quote comments off the telly which he finds funny ,he also likes to win games(most of the time )or play until hes won.also we could be out in the car and take a different route and this would lead to a massive tantrum with aggression lasting 1-2 hours,all i can say some days is i cant put my finger on it hes just different to my other 3 children.

mumslife Fri 14-Aug-09 19:39:07

Message withdrawn at poster's request.

mysonben Fri 14-Aug-09 19:58:01

I hate to admit this to myself but deep down i know that evn if ds does have asd it is mild, on that point everyone does agree.
So pursuying a dx at the moment with CAMHS , is it really for ds ? Or is it because Dh and i really want an answer?

I think it is both really ...and i'm not happy with myself for saying it! But i just cannot carry on like this, one minute he is asd, the next he may not be!

It's in my nature unfortunately, i need answers to finally accept (whatever the outcome), and cope and find the way forward.
I'm like this for everything i cannot stand uncertainty1 It brings the worst at of me like stress!
Even if ds does get an asd dx , i know there may be days when i will think "is this dx right?" hmm, but on the whole i will come to terms with things better with a dx.

I think i've answered my own question!... wink will stay with CAMHS.

Thank you for your advice. smile

mysonben Fri 14-Aug-09 20:00:42

Didn't type the first pharagraph properly !!! Meant to say the thing that i hate to admit to myself is: who is the dx for ? ds? or dh and i peace of mind! wink

Not that i hate the fact that if ds has asd it's only mild! grin

waitingforgodot Fri 14-Aug-09 20:07:07

I suppose it will alleviate doubts in your head either way if its a clear cut answer you are looking for? Sounds like ds is doing really well! Great stuff!

logi Sat 15-Aug-09 02:07:56

mysonben and mumslife my son can make eye contact,but doesnt like too much physical contact we took him out of school because his anxiety was so much that he would wake at night from dreaming begging not to go just kept saying it was too noisy and hurt his head yet he does go to indoor play areas ,we couldnt even drive past the school without him shaking and crying.since we took him out his anxiety has eased,this was the main reason for wanting a dx....and i feel i just need to know,i dont know much about stimming my son likes to run around in circles yet ive just took that as he may enjoy it, he just seems to find it fun, he gets my granddaughter to do it but she gets bored after awhile,he also gets possesive over a friend, very very fussy eater(toast,bread,chips, waffles, plain pasta)he also likes to be in control he even tells us to "sshh and just let me be in charge please" i think he thinks if he says please that we will say yes lol.

mumslife Sat 15-Aug-09 08:50:05

Message withdrawn at poster's request.

mysonben Sat 15-Aug-09 11:02:04

No my ds doesn't like physical contact much either.
He does like a cuddle from us (close family), although we often have to aks him for the cuddles he will sometimes come for a cuddle by himself.
However he hates other kids grabbing him on the playground or being very crowded by them,...he starts shouting "GO AWAY!!"

DS likes outside play at nursery, mainly the climbing frame and the tricycles, and he enjoys other kids "biking" alongside him, but he gets very upset if they suddendly change direction or go on a different path, he will scream "NO!!! That way!" and ends up in tears each time it happens. hmm
DS doesn't like group table activities at nursery.

mysonben Sat 15-Aug-09 11:10:16

I read the book "10 things a child with autim wishes you knew" , there is a paragraph where she describes thereport her son's nursery sent her.
It says: "B usually plays by himself. He is quiet and will observe other children. He has a hard time following directions. He doesn't like table activities or art projects. He has a short attention span, he imitates the other kids and will not interact during circle (carpet) time"
That is my ds at nursery 100%! It could have been written for him.

mumslife Sat 15-Aug-09 19:29:04

Message withdrawn at poster's request.

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