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AIBU?

to think just because I'm coping doesn't mean DD doesn't have autism?

34 replies

livvielunch · 12/12/2015 22:47

DD is 3; she has delayed speech and many traits of autism which are under investigation by a paediatrician. For example:

She is sick over strong smells so can't use public bathrooms
She has a very limited diet and cannot eat out
She carries a bag with her 24/7 and checks the contents around 15 times p/h
She plays in the corner turned away from others at nursery
She won't eat, drink or go to the toilet unless told to by me
She absolutely breaks her heart if she thinks she's been told off
She regularly completely blanks everyone but her baby sister and I
She hates loud noises and things coming towards or behind her so struggles to walk outside
She has never played with another child
She has complicated routines which must be followed to the letter including reading the same book and making the same comments about the story/pictures 10x daily and an exact script for bedtime
She has never hugged or kissed anyone besides her baby sister
She has 17 hour days and is still up 3/4 times per night

I could go on. To an outsider she's a happy little girl who only wants to play with her mum and baby sister and particularly family members have commented that because she and I are so happy they don't think there's anything to worry about or investigate. Aibu to think that just because I am coping and DD is mostly happy, it doesn't mean she doesn't have autism?

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AnotherTimeMaybe · 13/12/2015 05:32

YANBU
And you are coping amazingly. I have ds1 3,5 with asd and find it particularly hard psycologically some days -but doing biomed so we do have some good days as well
Overall though it's a journey and it's pretty tough so well done for copying!

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wannabestressfree · 13/12/2015 06:27

My son is now 18 but diagnosed really early (2) and went to a fab education preparation unit. I honestly think I coped - I was really young- as he was my eldest. It was all 'new' but nothing for me to compare it to.

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ProudAS · 13/12/2015 06:59

Definitely sounds like autism.

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Youarentkiddingme · 13/12/2015 07:20

I understand Flowers at that age it was just DS and I (well still is and he's 11 now!) so we could make life as easy as possible for us both. So we coped on the outside. he still has ASD!

You sound very in tune with your DD which is going to serve her well. My advice would be investigate and carry out interventions yourself - a diagnosis doesn't always bring all the support you are led to believe it will.

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PicaK · 13/12/2015 09:18

Steppemum - thank you for teaching me about scaffolding, it's a useful term.
OP - you are going to hear this again and again (that there's nothing wrong) and you need to think how you deal with it. Are you going to try and educate or just avoid discussing it with them. No right answer btw. Have you got someone close who understands those comments will some days wash right over you and some days pierce you to the heart and will reassure you when they do. Can you ask for help for you? Most professionals i talked to made a real point of writing 'this is not picak's fault' in their letters because i told them how hard i found it - so when my mil insinuates again that it's my fault or there'd nothing wrong and i'm making it up i have something to reassure me.

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CornishYarg · 13/12/2015 10:14

YANBU. DS exhibits/exhibited many of the same behavioural characteristics. He's been seen a couple of times by a paediatrician and on the waiting list for an ASD assessment. A lot has changed in the last year, though (he's now 4.3), and a number of our concerns have receded.

Like you, DH and I have learnt how to scaffold him so the issues aren't often apparent. When we first raised our concerns with the HV, we were brushed off and told young children do funny things and there will be "difficult days" Confused It took me breaking down in front of her (it had been a very "difficult day" and another brush off was the last straw) for her to take me seriously. It was such a relief when the paediatrician agreed it was worth investigating further as before, I felt like I was just being treated as a rubbish mum who couldn't cope with normal child behaviour.

One of my relatives is still very sceptical about it all. Whenever I tell her about something he's done that he would have previously struggled with, her response is always "Make sure you tell the paediatrician that. There's clearly no issue." It's like she thinks I need to prove there's no issue so I can get him off our back!

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livvielunch · 13/12/2015 22:32

Thanks for your reassurance everyone.

It has just been DD, her baby sister, DH and I today. She hasn't spoken to DH once, even when I had to do the ironing and cook she sat drawing or playing alone rather than interact with him.

I know it's difficult to accept and they're trying to be positive but all PIL comment on are 'she's trying to talk more', 'she doesn't freak out quite so much if we touch her now' etc. The underlying add on is always that there's nothing wrong.

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LyndaNotLinda · 13/12/2015 22:55

People don't want there to be anything 'wrong' with your child - it's misplaced kindness.

You're the poster who wants to take the children to Disneyland aren't you? Do you think your DD would enjoy it? It doesn't sound like she would :(

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teeththief · 13/12/2015 23:13

You seem to have a lot going on at the moment OP judging by your other posts this weekend. Do you really think taking your DD to Disney with all those issues is a good idea?

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