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

[DragonsDoHiccup]

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?

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?

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!

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.

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'

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.

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?

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.

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.

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

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.

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...

Agree with doris, the school will support her with or without a diagnosis and will look at how she presents in school and what she needs help with. Because in the end you and they will still need to manage your DD's behaviours, no matter what diagnosis she ends up with - if any.

I also agree that how the school manages SEN is crucial. Some are brilliant, others not so much. Do you know where she'll be going in September?

In my LA the school nurse service runs an enuresis clinic but you can't be referred until age 7, so clearly it's still considered within the normal range of development up to that point.

DragonsDoHiccup not much advice but just wanted to say I hope things will get easier for you. My dd is pretty quirky and I always felt there were more issues there. As she got older she mostly calmed down and coped better. She was diagnosed with dyslexia a few years back and knowing that helped.

Please do not give up getting her the help you think she needs but do also enjoy the bits that go well and try and not worry too much.

Some of the things are normal (IMHO) e.g. not wanting to write at 3, and some might simply be you are more patient (looking through the window at the party) - some mums or dads might have given up long before an hour and gone home or might have bundled their little ones into the hall despite protestations. Lots of people think it is easy to get kids to do stuff by badgering, bossing and carrot and stick! But when you meet a child who really does resist stuff you find that no matter how much you badger you will not get your own way! We had this especially around clothes and I think dd has some mild sensory issues around clothing, nothing tight or uncomfortable etc.

You've got a second child not having these issues so I am pretty sure it is not you! Be confident in your own abilities and PLEASE do look after yourself and your own mental health in all this.

I think one thing to remember is, your child is your child, who you love, whether they are on a spectrum disorder or not, have an issue or a disability of any sort etc, they are still themselves. I needed to remind myself of this when dd was very difficult.

I also feel (IMHO) that one day or week or one action or whatever is not the whole picture and not to stress over every bit. But all the 'bits' together do help you to build up a picture.

Maybe keep a record or diary of behaviour, you could include in that things like food eaten as well to see if any foods (sugar or whatever) affect behaviour and also bedtimes etc to see if late nights have a negative effect.

This will help with remembering behaviour when you talk to professionals because it can be daunting and we can always forget what has happened.

If I were you, I would also record issues as and when they happen, what works or does not, just for you. Remind yourself of successes as well as problems.

For all the things you want to encourage her to do can you try sticker charts? With a small 'prize' you can afford? Extra TV, present from the charity shop, trip to the park etc? We did this for potty training and it worked well.

Try not to stress three is not old to be still potty training, IMHO. I know a few kids who were really not ready at three. You can make clothes easier to dress in and to get off for toileting by avoiding things with buttons or zips/fixers, just pull on trousers or skits and simple tops, not too tight.

For dressing with ds (4) we've tried races to get dressed, mummy against ds and just lots and lots of praise when they get it. You can see as you go along what works out. If she gets dressed herself could you give her star of the week or take her photo and put it up on the wall or whatever.

Some kids will find these things work.

Or at weekend you could say, once we you are dressed then we will go to the shops, into the garden, put on the TV, get out the game etc, but Mummy is only going to help a bit.

Really three is still so little, ds is quite bright but still needs help to get some things off or on and he is almost four and a half. All kids are different and they all feel the need to do things in their own time.

DD was very happy to dress herself at three but my friend's boy, although a year and a half older than my dd, was happy to be dressed by his mum when they were both preschoolers.

My dd is 10 now and I love her more than ever but she has challenged me a lot over the years, pushed me away and made life hard, she is just her, and part of my role as her mum is to get her the help she needs. It is not easy.

Good luck.

DragonsDoHiccup you said HV and GP want to wait 6 months.

What do you want to do?

Just an idea but could you compromise and offer to wait3 months? If they are confident all is OK they may expect to see some significant progress within that 6 months so 3 months sounds fair. If after 3 things are changing and going well you may feel more confident and if there is little or no change they may see your point.

You could set yourself two or three simple targets, toileting, dressing and maybe one more to see how you do on those areas in three months and then review?

Or you could ask their advice, two or three things to work on. If they can see you are taking their advice or at least listening to their ideas they may be more open to listening to you.

Just an idea.

"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?"

My ds (ASD) still points with his middle finger, which can look a little unfortunate sometimes.

For toilet training I had to use different approaches for my two, and neither of them 'got' it until they were 4yrs old.

Ds1 was open to bribery with stickers and could eventually be persuaded to sit on a potty chair, before eventually ending up with one of those toddler seats that fits under the toilet seat.

Ds2 had a lot of sensory issues with clothes, so part of the struggle was finding underwear that he could tolerate. He had a social story to explain what it was all about, and that was followed by around 6 months of gradually building up the amount of time that he spent in pants.

Dressing also needed different approaches.

Ds1 had a strip of laminated card with pictures of the clothes, in order, that he needed to put on. That helped with his need to always know what was coming next.

He also had physical difficulty with dressing so I had to gradually build up the amount he was able to do. With trousers I would do everything but the final pulling up of the waistband. Once he'd got the hang of that, he would pull them up from his knees, then from his ankles. Eventually he reached the point of being able to put just his second foot into the trousers, and finally he learned how to do the first foot too.

Ds2 was more a case of being able but extremely unwilling, mainly because he hated the feel of clothes on his skin. If we ever found an item of clothing he liked, we would end up buying at least three of them at a time. The OT suggested trying to de-sensitise him a little by doing things like wrapping him in a towel.

The lack of drawing and writing is definitely very normal for this age.

DS gets on much better with M&S pants than the (cheaper!) ones I tried from Sainsburys. So it might be worth trying a range of options clothes-wise (suspect you will already have done so!).

Thanks for all the suggestions - lots for me to try!

I've actually bought her boy pants as they look more comfortable but I've yet to get them on her and we've had them 2 weeks.

Oh and she is perfectly able to dress and undress herself given the clothes we get her - joggers and long sleeve t shirts is all she will wear. She just won't try, or does try a little bit then give up all stroppy

Is there anything she really enjoys doing?

DS has always been screen obsessed, and his entire morning routine is structured around how much screen time he can get - so the quicker he gets through brush teeth and getting dressed, the more screen time he has.

Did I mention not to try to "fix" more than 1 or 2 issues at a time? So you could work on getting dressed until she gets that cracked.

And yes, I have always sourced DS's trousers on the basis that they are just pull on/pull off - Boden are good for that, for boys at least.

She goes through phases of being iPad obsessed. I could use that as a bargaining incentive tool, but sometimes she's not bothered by it either.

She has 4 identical pairs of joggers from jojo

I think dressing is the thing to work on first. Then potty training. Then walking. The buggy is becoming really difficult to steer as she's not a small little thing any more!

Thank you everyone. I was having a little despondent moment

Ah the memories of the rows of identical clothes all in a row. :o

Good luck, Dragons. :)

Without wanting to derail can I ask if anyone knows the difference between Autism and Aspergers, please? And also what the difference is for a girl as opposed to a boy?

Hope it is OK to ask this, OP?

My DS (mild ASD) is nearly 6 and I still end up doing most of his dressing for him in the morning before school. He can do it but avoidance techniques are well developed and I've learnt to pick my battles to keep him in a good mood so he cooperates with more important things like with the teachers.

Toilet training is more tricky with our DS still having occasional accidents now. He does better when his self esteem is high, other times he doesn't bother to (makes no difference in his eyes). In the end I resorted to bribes of sweets for toilet training, as they were a rare treat they did the trick.

I would strongly second what another poster said above to ensure the physical side is kept tip top with healthy home cooked food, low sugar, loads of sleep. When DS is tired everything is a battle. Take supplements, Mindlinx, fish oil, magnesium, vit C.

Don't know why HV and GP won't refer you now, but not sure it make much difference to wait another 6 months anyway. Does she make any giveaway ASD gestures such as flapping hands when excited or hands out to the side when running? Walking on tip toes, etc. Write it all down and book another visit with GP for referral. Choose a nice gentle nurturing school, single form entry if possible, or small infants with great Senco and sympathetic head. It will make a massive difference.

Actually if you google Early Intervention for autism it seems more important that you do push for an early referral and diagnosis now. Take some articles with you to GP and insist.