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Original poster

Please talk to me about dd1(3.7) and ASD/Aspergers

37 replies

DragonsDoHiccup · 09/02/2015 23:02

I've talked to her preschool, HV, And now seen the GP and not really got anywhere.

I get the impression they think I am being over anxious and just an incompetent parent. This is not helped by the fact that I do, indeed have a history of mental health problems -EDs, depression, self harm, and more recently, anxiety.

I really think there is "something" and I want her "labelled" before she starts school in September as I think she is going yo really struggle unless they give us an awful lot of leeway with settling in and stuff.

But preschool (which she attends very erratically due to mostly fuck knows reasons - but helped now by goin in later to avoid the playground crush etc) say she is fine. And on the days I can get her willingly there yes she is. But if I've forced her then afterwards she is wired, aggressive, doesn't sleep...

An example - please tell me if this is normal 3yo behaviour. She had a birthday party to go to at the weekend. This is very rare as she doesn't play with other children yet so doesn't really get invites.
She was very happy and excited to go. Got eagerly out of the car and walked happily yo the venue. Then refused point blank to go in the doors, screaming, crying, kicking. So we backed off. Looked through the window, talked about all we could see etc. still wouldn't go in. We spent nearly an hour looking happily through the window for her to kick off any time we went near the door. So I took her home.

Is that normal?

I haven't been able to potty train her. She won't walk anywhere she has to pass people on the pavements. She's obsessed with dinosaurs and space exploration. I can't get her to dress/undress herself. She won't draw or try to write. She has a very limited wardrobe that she will wear and kicks off at the suggestion of dressing up.

What do I do?

OP posts:
Original poster
DragonsDoHiccup · 10/02/2015 13:01

I tried taking her every hour in the hour lat year - and it jut made her refuse to EVER sit on the potty or toilet - something that continues. I don't know how I'm supposed to toilet train her is she won't even sit on the damn thing without restraint! Even chocolate doesn't work!

Well 6 months from now takes us to August. She starts school in September...

OP posts:
strawberryshoes · 10/02/2015 12:51

The school would need to be aware of your DDs abilities (toileting and dressing) but would need to accommodate her, its her legal right to an education.

Its not unusual for children to need help dressing anyway, and toileting might be sorted by then. My friend had the best results with taking her DD on the hour every hour until she clicked with an awareness herself. If it isn't sorted by Sept I am sure your GP will take you more seriously on this point alone.

Original poster
DragonsDoHiccup · 10/02/2015 12:45

HV and GP want to wait 6 months. They were most firm about it despite me insisting on a referral....

OP posts:
Original poster
DragonsDoHiccup · 10/02/2015 12:44

But what if I still haven't toilet trained her? Or taught her to dress/undress put shoes on etc? Coat?

She's extremely verbal and can tell you all about different dinosaurs, but won't tell you if she's done poo in her nappy, or if her trousers are soaked because she's weed in her pants again, or her nappy has leaked.

We have the playful parenting book and I've tried lots of things from it. We also have the Beyond Worry book which has been extremely helpful. We have done love bombing, but not read the book.

OP posts:
OhGoOnThenDoris · 10/02/2015 11:33

There are red flags for ASD there, so the health professionals should be taking you more seriously. Thing is, some ASD traits are quite normal in toddlers, its just most develop past them.

Can you book another GP appointment and make a list of all the things concerning you and present it, no holes barred, finishing with "I want a referral to a developmental paediatrician please". Then, go into broken record mode on that request.

However, don't panic on primary school. If you get a decent one, they should accommodate her needs with or without a diagnosis, just make sure when choosing schools you meet the SENCO and talk about her, her needs and her preferences so you get a feel for how well the school are equipped to make her happy. My DD is without diagnosis at the moment but her current class teacher and the SENCO are really good so it has not been an issue.

Itsgoingtoreindeer · 10/02/2015 11:22

This reply has been deleted

Message withdrawn at poster's request.

Original poster
DragonsDoHiccup · 10/02/2015 11:17

One weird thing - she won't point with her index finger but with her second - which looks a bit like her flipping the bird sometimes - is this an ASD trait?

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Original poster
DragonsDoHiccup · 10/02/2015 11:15

Oh and sleep sorted itself out last summer. She only wakes for a cuddle occasionally now, but we stopped pressing to get her in her own bed and just expanded our bed - so we have a family bed! I'm sure the HV disapproves but as far as I'm concerned whatever gets the most sleep for the most people is sensible.

OP posts:
Original poster
DragonsDoHiccup · 10/02/2015 11:12

Thanks for the suggestions.

We have Lulus loo book - and we have potty trained bears, dinosaurs and Dusty Crophopper to no progress. It's just not something she associates with herself!

Triggers are noise business and change of routine or clothes. So to get to preschool if needs be she stays in her pyjamas because if I battle about changing clothes then preschool won't happen. The party had music playing and obviously lots of children. So 2 things she doesn't like. She also can't cope with people touching her so other children jostling is a real problem for her.
Reward charts mean nothing to her. Nether does bribery really'

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IsItMeOr · 09/02/2015 23:46

I don't think it is inadequacies in your parenting either, btw.

Have you spotted any patterns or triggers for her behaviour? We've found it helps to identify a couple of things or times of day when you struggle and try to get some improvement there. Let everything else slide, if you can.

We found that a sun and stars gro-clock helped DS get a more reliable sleeping pattern when he was around 3. We tried CC - several times - but it never seemed to make any lasting impact. The supernanny style back-to-bed technique seemed to work (eventually!).

For DS, Pirate Pete's Potty helped us a lot. We thought we had it cracked, with him out of nappies completely at around 4yo. Then he finished at nursery a few months later and has rarely had a dry night since (but basically fine during day). We are waiting for a good time to try again on that one! The girls' version seems to be Princess Polly's Potty.

Have you tried a visual calendar for her? We have done that for DS for years, just for one week at a time. It gives us a way to talk to him about what is coming up, and when. It won't do any harm to try.

If you haven't already tried it, we found Playful Parenting had helpful tips - it's much easier to jolly DS along to do something if you make it more of a game (e.g. let's race, I wonder if you can get dressed in x minutes, etc).

Lovebombing also helped us, but I don't like what he says in the chapter on autism, so am vexed to recommend it...

Our bedtime routine is a frequent flashpoint. A way that is working for us at the moment involves me making up a new story about the currently popular set of characters of his choosing. It just seems to distract him enough that he doesn't get stuck/too stressed. When he was younger, I used to be able to get away with long descriptions of what they looked like, with loads of repetition. But he's got wise to that now, and expects proper plot points...

We have had some success with rewards - but it has to be more a positive thing rather than a sanction. So he loves us reading to him, and he can have 5 minutes extra if he listens and doesn't hurt us while we're doing the bedtime routine. We take away a minute for each episode of not listening/hurting, but he always has at least 10 minutes (however long the bedtime routine takes!!). Sometimes, he just can't manage it though - I think that's when his general anxiety levels are high and everything's more difficult.

A bit of a ramble, but hope that there might be some ideas for you to try.

Original poster
DragonsDoHiccup · 09/02/2015 23:21

Thanks for the reply. The HV assistant did say she was going to get back to us to help with the potty training. So I think she thinks I'm just clueless as I've told her what we've tried so far! She is also the person who suggested I do cc when she wasn't sleeping - at 3yo! But I will give her advice a try - as you say I've got to rule out that it's due to my inadequacies.

Although my 15 month old is using cutlery, trying to dress /undress herself, and happily sits on a potty and trots off to play at toddler group. So although I had my doubts, now dd2 is here I really don't think it's me!

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IsItMeOr · 09/02/2015 23:15

That sounds like hard work for both of you.

It's not immediately obvious that these wouldn't be things that a NT child would do, which may be why pre-school, HV, GP are taking what sounds like a "wait and see" approach.

But they do also sound very like behaviours that DS would have shown at that age - he was diagnosed with ASD at 5.6yo.

In our experience, we did have to rule out the possibility of it being down to inadequacies in our parenting, before it became clear that something more was going on. We also had to insist that he went to school every day in reception to really show that he couldn't do it without additional support.

It's tough, isn't it? Has the HV offered you any sort of support?