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Just feeling really glum

(10 Posts)
thinkingaboutdrinking Thu 17-Sep-09 19:41:18

The nursery where my DS 3.7 goes regularly told me 3 moonths ago they thought he was autistic.
I disagreed, but stressed a lot about it so went to GP who gave me appt with paed. Appt was today. I have gone from yes he is through to no he isn;t in the last 3 months numerous times, but either way I now over-analyse every thing he does to try and work out whether he is or isn't and it's driving me mad. I have some experience of ASD children as do many members of my family and we all agree that we don;t think DS has ASD. Difficult - yes sometimes, stubborn - absolutely (like both his parents) shy - yes (like DH) but social/ communication/ eye contact/ imaginary play no problems.
Anyway, paed today I was fully expecting to say, no he's just being awkward. She said that No he isn't autistic but just displays some autistic behaviours. and that these might go away, but might get much worse so he gets DX in future. wtf???
So perhaps its actually aspergers she said. and then gave me a website address that turned out to be wrong.
And also said we need to see a child psychologist, consultant paed and SALT to get DX and that she would start that process for us.
So I am just a bit glum. I don't thing he is, but get really upset that he might be. And am angry with paed, and with DS who of course was very awkward with paed (ie didn't want to sit on the chair at the table and wouldn't say goodbye etc etc ) and just generally depressed at everythig because I thought today would be the day I could say - yes someone medical has confirmed that there is nothing wrong with my son, but instead we have more uncertainty.
And I know in the grand scheme of life that a possible mild aspergers child is very minor but at the moment it seems like so big and I just want to scream at someone.
Sorry this is so long

misscutandstick Thu 17-Sep-09 19:52:31

you have every right to be glum <<<hugs>>>, today you had stolen yourself to be in the know whatever the outcome, and you are left even more clueless. Its upsetting and frustrating, after all how hard can a 'yes/no' answer be?

However, on the bright side, she does seem to get the ball rolling on having the right people involved. Thats always good.

Im not sure if this is going to help at all, but DS4 is Apergers, and it really only started to show to me at around 3.6yrs. Hes 4.4y now and symptoms have not increased but kinda 'matured'. So its easier to have in my mind a 'yes' rather than maybe so/ maybe not. Perhaps (and I know that this doesnt help) give it a few months and it will become clearer to you whats going on. If you are having doubts at this age I would say that there is definately SOMETHING going on, but to what extent is the question. Perhaps both you AND ME wont get to know for a while yet.

To summarize and conclude: get yourself a bottle, a box of something yummy and snuggle in for the evening - even a week or 3 if it helps, and be kind to yourself.

thinkingaboutdrinking Thu 17-Sep-09 20:35:04

Thank you missuctandstick.

What you say is very reassuring. I don't quite know why. Perhaps because its just so nice to have someone else having DX for DC round about this age.
and symptoms maturing seems easier to cope with than increasing!

I am cheering myself up with (small) bottle of beer and a cheesy, girly film (DH is at a work thing - typical!) and trying not to think about it.
This I think is why I'm so upset:
"after all how hard can a 'yes/no' answer be?" and yet I know that it is better to have more professional people deciding, and therefore good to be referred - its just the not knowing.

And also the dreading going to places/ seeing people if it gets worse and them thinking what an awful child I have... and I know that shouldn't matter.
but it does.

Aynway, I shall go back to my cheesy chick flick, and try not to think about ASD/ ABA/ aspergers/ paeds etc etc !!

waitingforgodot Fri 18-Sep-09 10:46:39

He is still young therefore if he is on the spectrum then early intervention is key.
He is still your boy-nothing has changed and as misscutandstick says then he is now in the system and they are working towards giving you a dx. Paed cant say yes or no there and then as it is such a complex process with other professionals involved. You are doing the best for your child and if he turns out to be on the spectrum then you will deal with it and get him the help he deserves. Keep posting on here and keep us updated.
Big hugs x

mysonben Fri 18-Sep-09 11:31:05


I hope you're feeling a bit better today.
It's always a big shock to find out your child is/could be on the spectrum.
It will get easier, remember he is still the same little boy you've always known.
I was just like you only a few months ago, after been told by paed that my DS who was 3.4 at the time, has mild asd. I was frantic looking for every bit of material i could read about asd. I was too constantly analysing my DS's behaviours. I must confess i still do sometimes but much much less wink

After a while all this bad feeling will ease, i promise.
And on a good note, it is better to know and get the help needed for your DS now that he is young, he will have the best chances of making fab progress this way.
Take care, and keep us updated. xx

thinkingaboutdrinking Fri 18-Sep-09 12:53:06

Thank you all. I have also done the same mysonben and trawled the internet looking for info. Constantly thinking "does he do that? does that prove it?" and its so tiring.
I just still really think he isn't on the spectrum, but don't know whether that's just denial.
Refusing to sit down to eat lunch (which is one of nuresry's main issues) just doesn't seem to me to be a huge red flag. Bloody awkward yes but ASD? Yes I'll admit he can be sensitive to loud noises, and he gets grumpy at nursery when they unexpectedly change things but we have routine changes at home with no problems, and everyone comments on how sociable and chatty he is. He plays well with younger & older children and his peers, and frequently instigates conversations with children and adults. I thought that ASD kids had problems with communication and social stuff.
The paed asked about obsessive stuff and we have none. I still can't see it. Obviously I over-analyse everything now and get worried if he doesn't immediately speak to people who come to visit us - but why should he? if he is busy why should he stop what he is donig to speak to my friends?
and of course I forgot to ask how long the wait will be....
sorry long again, I just want to talk far too much about it.

waitingforgodot Fri 18-Sep-09 13:14:43

thats what this forum is for so talk away. Remember its a spectrum and the paed says he is showing ASD behaviours but is not necessarily on the spectrum if I understand you correctly? Does he have speech and language difficulties if she is getting a SALT involved?

thinkingaboutdrinking Fri 18-Sep-09 13:28:57

Yes waiting that's what she said. exhibiting behaviours but not necessarily on the spectrum, but then she said it might be aspergers if he gets worse - which I didn't quite understand. Surely he either is or isn't, rather than becoming ASD.
And we (and nursery) have no concerns re speech and language at all. I just presumed that SALT would be involved as part of the standard ASD assessment process.

cory Fri 18-Sep-09 17:00:20

not all ASD children have problems with communication in the sense you might be thinking

my goddaughter was an absolutely charming little girl, very open and sociable and linguistically very able

what she did not have was a very good understanding of social boundaries, so would often be too much in other children's face, or fail to pick up on their social cues

so she would come across as a little too social/too young for her age rather than anti-social iyswim

dazedandconfused Fri 18-Sep-09 19:48:25

My DS was diagnosed this year with Aspergers (aged 5). One of the staff at nursery last year had suggested to me that he might have Aspergers and I was extremely upset and outraged at the time. The symptoms seemed to reveal themselves gradually, and are hard to distinguish from typical behaviour of young children at first, ime.

That's not to say your DS has Asperger's, but if he does, you know that he will still be the same wonderful boy that you love. My DS is very communicative and loving, imaginative and bright, and the diagnosis doesn't take away from any of that. But it does help us access extra support at school etc, which is vital for him.

Having said all this, I know I spent a while in total denial, followed by a period of grieving and feeling really sad and angry that my child has these extra difficulties to deal with in life. From talking to other parents, I think it's really normal to feel all those things. Mild aspergers presents extra challenges, and it takes time to come to terms with that.

Good luck - it may be that you find your son is not ASD but if you do, get as much support as you can from other parents and NAS - I've found that a huge help.

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