We have always known there was something different about DD

[FriggFRIGGYPudding]

Shes 3 now and the 'differences' are becoming more apparent.
I guess I just need somewhere to write them all down,and to see if they sound like something,or nothing,to anyone else.

She gets very angry,or frustrated when something doesn't go EXACTLY as she planned it to,she also finds it impossible to accept she has limmitations,things she cannot yet manage.

She does not listen-in one ear,out the other.
ie she will hit her brother or pour a cup of water on the floor,get punished,feel sorry about it,apologies,and then just do it again!

She never finishes what she starts,she will have wandered off to do something else by the time youve sat down to help.

She never stops moving
She never stops talking
Even when she's asleep
She wakes up at 5am

She bites herself
Pitches herself
Screams at herself for not getting it 'right'

She doesn't like to make eye contact
She will not give hugs if asked,but is very loving ,sensitive and empathetic on HER TERMS.

She does not seem to understand that her actions have consequences
ie if she jumps on daddy,it will hurt him,if she pushes her brother,he will fall down and hurt himself and if she won't stop doing something she is asked to stop doing,she will be punished.

She finds it hard to understand 'turn taking' or waiting in a que(sp?)
She reacts very very badly to any criticism for example,if I ask her to calm down,she will scream at me " NO, YOU CALM DOWN!"
She is always the one causing trouble just by being loud and bolshy,she is bossy too,she doesn't mean to be, I'm sure of it,
at the end of the day she often asks if she is naughty "yes or no mummy?"

it breaks my heart.

Any advice would be appreciated,
I would obviously be over the moon if I'm told there is nothing wrong and she will grow out of it all,but I don't want to do nothing and let her suffer either,I really don't know what to do.neither of us can control her effectively anymore.

thankyou if you managed to read by humongous rambling post!

the not feeling/noticing temperature and pain are also things you should note and mention.

if there are any behaviours in particular which concern you, you could start filming them - it can be easier to show people what you mean, rather than trying to describe the behaviours (and then sit there thinking that they are thinking 'but all young children do that!'). this would also be useful if further assessments are recommended.

good luck with the gp. your dd sounds fab, and she is lucky to have a mum who is switched on and ready to (potentially) fight her corner.

You commented a while back that you wondered if you were the wrong parents for her. You are the right parents, you just need support! It's tough.

When we finally got DS a Dx for AS we had to recount his early years. I told them that when he was 3 and a few months I heard him run I to the front garden while I was feeding DD upstairs. My first reaction was, must get DH to fetch him as there is a busy road other side of our drive, second thought was

If he gets run over life will be liveable again.

Obviously his dad did fetch him and all was fine, but it just showed me how hard I was finding life at that point.

The Drs who were trying to diagnose DS told me that what I had recounted was quite normal and they had heard similar. It's tough

He is now 13 and life is so much easier, the changes started when he could read on his own and devour fact books

Hi Frigg, I know you have already had loads of advice and stuff from others but I read your thread on my phone last night and wanted to come on and tell you about my experience.

My Dd's 1 and 3 have always been different, your description of your Dd has elements of both of mine but all very familiar things.

You just mentioned snacks, I can relate to that with Dd3 who is 9 and finally has a Dx of ASD [although she is high functioning and could prob have been Dx'ed Aspergers]. From day 1 she only ate tiny amounts but really often, she can't bear to feel hungry and goes ballistic if we try to make her wait for food or drinks.

Maybe you will gradually be able to manipulate her eating times so that some of them coinside with mealtimes IYSWIM.

Another thing I totally get is the touching everything, it is a sensory thing but that doesn't help.
Dd3 has to touch everything in shops it makes me very nervous because she is very clumsy. We tell her to look with her eyes not her fingers. It hasn't worked yet but it might one day.

My Dd1 is 23 now and I never managed to get a dx for her, she nearly got an ADHD dx when she was 9 but they decided to blame my parenting instead.

You might have a battle on your hands to get a Dx for your Dd but please dont be put down by the proffs, your Dd sounds lovely but she may well need some support later and it is difficult to access without a Dx.

Sorry that was so long, good luck and keep coming on here.

TBH things like not noticing cuts, bruises is not unusual with children who have sensory processing difficulties (which is often/usually part of the ASD profile). Thats significant when you are talking to an OT/SALT/Paeds Physio.
Is there some sensation that she really likes/ e.g. some kids love pulling on blu-tack, some love stroking a piece of cloth, some love twanging an elastic on their wrist, some love bouncing etc. If you can find what it is, try to use it for times when you need her to 'behave' for you e.g. shops, GP
You sound lovely and very switched on..dont dismiss yourself as the 'wrong' parents for her...realise that in the school of parenting you have been asked to take on extra classes.

Thankyou, it is usefull to know some of the things we have always thought are just 'her' quirks may be usefull in a diagnosis.

If someone could clarify the acronyms that would be very useful,I think I know most of them but I'm not 100% about the meaning of ASD....

Thankyou.

You have described a range of behaviours which, while individually quirky, add up to a picture that would make sense to a Paediatric healthcare professional.
You have described:
difficulties with eye-contact
sensitive and empathetic on her own terms
rigidity re routines and activities
sensory seeking behaviours (touching) and sensory registration issues (cuts)
difficulty (possibly) grading movement (hence why she doesn't understand how much force will hurt Dad or brother)
ASD does mean Autistic Spectrum Disorders but I wouldn't dream of labelling her from here.
Movement difficulties, sensory issues will often co-exist with ASD but are also features of other conditions. There is no way to know until she is seen by Paediatrician and an experienced Early Intervention team.

i agree with wannabemegmarch

Well said wannabe I was trying to think how to say that without writing a book.

Wannnabe that was immensely helpful,thankyou so much.

Hi friggy your description is both of my girls to a T! Dd1 is 7 and has a dx of ADHD she's a non stop mover and talker. Dd2 is 2.4 and in the system awaiting an ados test for asd and she has sensory integration difficulties. First thing to realise that I've learnt is that girls are very different from boys especially with regards to asd, ADHD etc etc worth reading up on articles specifically for girls as they can present very differently.
It's a hard slog but worth it when you get the help your kids need. My dd1 is so happy now she's no longer miaunderstood

Friggy you are welcome..best wishes to your lovely DD and you for 2012

Thankyou Lenin,I put DDs meal into a ramekin,and separated the foods,so it was more like a tapas meal,or 'snacks' and she ate a good deal more than normal!

I have also noticed ( now that I'm looking,I suppose) that she is sensitive to light/ dark, ie if I turn the main light off in the evening and just leave the lamp on,she screams that she can't see anything! But is equally upset if it is 'too bright'
She also cannot stand certain noises,like the Hoover,and always plays up,becomes very destructive when it is on . The same Happens if her brother is crying .

She changes her mind very quickly...all the time!

The one that is most worrying me at the moment is that sheis picking at the skin on her lips.they got chapped about a month ago,but she picks at them all the time,pulling the skin off,especially just before bed.

We have also just discovered she is very fond of Blu-tack!

Do you think any of these things are worth mentioning to the GP?

One last thing- sorry for the rambling!-
her speech is quite good for her age,as is most of her communication,except for a few things she gets gets confused with,
(inside and outside,off and on,real and pretend)
people often comment, " she knows what she wants doesn't she!"

So I suppose I'm concerned this would rule out any investigation into her problems?! As most of what I have read over the last few days mentions communication being one of the biggest ' markers'.

Again,thankyou all so much for your advice.

Communication is absolutely not the only marker. In fact the defn of Aspergers is ASD without any speech problems.

What you have described are sensory problems which should all be mentioned to the GP.

All kids with ASD also have sensory problems.

The GP will probably not know anything about sensory problems, but they need to refer you on to the right person.

Thankyou,I think I was wobbling a bit about what constitutes a 'problem'

I made the mistake of speaking to my mother last night

Right off to make an app with the GP, she is really very lovely,and actually admits when she doesn't understand something,and will make phone calls for you or make referrals.
I have hyper mobility syndrome,and it's not a widely known condition but she made phone calls,did research,and got back to me she's the best GP I've ever had!

Frigg the extra info you've posted would all feed into the same type of picture IMO. Your GP may indeed not be familiar with the significance but any therapist with training in Sensory Integration would nod their heads at what you have described (usually an OT, Paeds Physio or SALT). A Sensory Profile is a questionnaire that most therapists would be familiar with.
Also many children on the Spectrum will as indigo described have excellent speech- but a SALT may find that they have significantly better expressive (talking) language than receptive(listening/understanding). They may also have difficulty with concepts that involve space e.g. in vs out, in front vs behind, over vs under, right/left.
Real vs pretend paly is also significant - sometimes not whether they do it but the quality.
And yes sensitivity to light can be an issue (a child who cannot stand photo flash yet terrified in the dark).
All in all, a picture that is significant enough to take to your GP and ask for a referral on.

Hi Frigg, the description of your DD is very similar to what my DS2 was like at the same age. He was eventually diagnosed at 7 1/2 this year with Aspergers. When he had just started nursery at 3ish I mentioned my concerns to the teachers but they weren't too worried, saying that he may well grow out of his obsessions etc, and it's true that he has changed in many ways (The problems we used to have with public loos!! He would scream at the hand dryers and those automatic flushes were a nightmare - he was afraid he'd be flushed down the loo!!) I had to smile to myself when you described her playing in the garden without a coat - DS is wearing his shorts today (as always) and I've got used to the sideways glances I get from people when we go out in the cold with one sensibly dressed DS and the other in shorts and sandals .
I'm not saying I think your DD has Aspergers, because she is still so young and so many "odd" behaviours can change over time. But I would definitely go to your GP if you are worried, and write down as much as you can beforehand, however small it might seem. Sounds like your GP is brilliant so I wish you good luck with your appointment

Oh, I meant to say have you looked at the National Autistic Society website? There is lots of useful info on there www.autism.org.uk/

We have an appointment with the GP tomorrow....fingers crossed I can actually remember what I'm trying to tell them....wish me luck!

Good luck!

Hi there - just wanted to say that this post has been SOOOOO useful to me. DS1 is 3.5 yrs and is being assessed for a statement for school at the moment. So many of the behaviours and traits mentioned here apply to him also although I'm not sure I'd have thought to mention them all - I did tell his paed about him not seeming to notice if he hurts himself or if he's hungry but she kind of dismissed it. I'll definitely put it in my list of things to mention. Thank you all xx

Sooo, I'm back from her drs app,the GP was lovely,I managed to remember about 90% of the things I wanted to say!
The GP admited she hadn't a clue really,but that it sounded like something she could refer,so,she is going to make some phone calls and have a chat with the other GPs at the practice to she who would be ,most appropriate team to refer her too,firstly though,we are going back in,with DD this timefor a full body check up,to rule out anything physical.

Thankyou all so much.

Good luck Frigg

your DD sounds very similar to my own, keep posting