Am I worrying over nothing!

[kyz1981]

My DS is 2 1/2 and has most probably ASD ( just wait on reports) Low tone, and a few other bits and bobs.

I am starting to have concerns about his big sister who is 3 1/2- but since I am looking through eyes that are looking for things, I am not sure if they are concerns or just typical behaviour- I have lost all clarity on knowing what is an issue and what is not- she is coping fine at the moment my worries are as follows.

She does not Like certain sounds such as Beeping, Fire Alarms, hand driers and blenders. If she hears a noise that disturbs her at nursery like the fire alarm she will go on and on about it.

She is frightened of the rain getting on her face and can be quite anxious about it.

She is devastated if somethings not right in her eyes - an example is that if she is peeling a banana and it breaks she is devastated and will get very very upset or if it does not peel in stripes.-This can apply to biscuits or a few other things.

She can't handle being told off - if Nursery tell her off say for messing around and tell her that her table will get there pudding last, she is in bits so much so that nursery have to tell me when they pick her up- she just can't cope with it.

Yesterday when I picked her up she had made carrot cake and went to the bit where you collect it - The lovely cook said to her -- in a jokey smiley way - you did not make a cake did you ... she got really worried and upset and needed lots of reassurance from me and her key worker.

She likes Routines but can change and some of this may be because we have to live by my sons routines and rituals.

However:

She loves to please and will do anything for a bit of praise or a sticker- but if she looses that sticker there will be tears.

She is so good at nursery - every time they pick her up they tell me how she has helped, sat still does as she is told.

She is always Happy or Upset - never in between but 85% of the time she is a very happy girl.

She can pretend a biscuit is a boat and has a very good imagination.

She will point things out of interest to me, cars, tractors etc.

She likes to do everything herself - so much so that if you help her without her explict permission - for example putting her shoe on she will take it off and start again.


Now I am not sure if this is typical of a 3 1/2 yr old and she is maybe a bit anxious/ sensitive or if there is something subtle that may not present now but will cause issues with friendships and stuff as she ages, I guess its the anxiety that worries me more than her social side, However I just feel like I may be worrying myself over nothing.

[akaemmafrost]

Sounds very much like my dd who has just been diagnosed with ASD.

[akaemmafrost]

I was confused as you are because she was a girl. I also have a ds with ASD. I googled ASD in girls and there are a couple of videos on YouTube that I found very helpful, some made by parents of girls with ASD and one video of programme footage. I had been dithering about believing she had it and whether or not to get her referred and those videos were like watching dd. There was one that didn't even show the child, just her room and how she arranged her toys while her Mum did a voice over explaining how she likes to play. THAT was the one that convinced me.

Leonie is right it's very different in girls. With dd a lot of her issues are reversed.

Eg she behaves impeccably at school but melts down for hours and attacks me at home. Ds was opposite.

Dd will sit for hours drawing and painting and colouring but will become very distressed if she colours outside the lines or "gets it wrong". Ds won't even try and if you try to encourage him can get really stressed.

School didn't see any problems (why would they, she's an angel at school) so wouldn't refer. It was all driven by me. GP, referral etc. Got the diagnosis in 6 months.

My concerns are social for later. She may not need help now but as a girl it may well hit later, later in primary I have been told and I want to be ready, ie armed with diagnosis.

[kyz1981]

Thanks for the replies they have helped - still not sure how it will play out as she is only 3 1/2 and if I did not have my DS and been on Early Bird I would not have a clue.

When I have mentioned my worries to my mum and DH they have told me to stop being so stupid and that the above issues are because she is 3, so I would be put under stress if I was to try and push for referral now, she is also very articulate - this helps as she can tell me what she does not like, even down to the Peppa Episodes that send her in to floods of tears, Thunderstorm ones, Daddy pig getting stuck in the mud, she just can't seem to cope with these.

Can I ask what age your DD's were diagnosed as I still feel I would be laughed at by my DS team as she is so above his level in every way.

Not sure if I am going to do anything yet- just keep a mental note of concerns and use this board for Ideas and then I may get her assessed privately by someone who is very good at picking up HFA in girls as I think it would come across more as Anxiety related.

I am going to look on U-tube now.

[Handywoman]

kyz1981 it sounds to me as though she interprets language rather literally, is anxious and trying to fit in. More power to your elbow for recognizing this. Hope you are able to get people on side and a referral made (either via GP or nursery). The other thing to think about is your selection of primary school.

When language/other abilities are advanced, diagnosis can be a long, drawn-out process. Our first referral was age 4. We are still awaiting MDT assessment aged 8. With a bit of luck (and a following wind) you will hopefully get this sorted more quickly than me! Keep posting and always go with your gut.

[kyz1981]

Thanks she does interpret language literally but I put this down to an age thing, for example if I said come on sweetie, she would say I am not sweetie I am.....

HandyWoman that's what worries me, I am up to my eye balls with DS who is much much lower functioning, no language lots of sensory issues and immediate needs- a long drawn out process would be too much for me at the moment with my DS.

I am not sure I could cope with the NHS route as its brutal and has almost taken all my strength to get through it with any sanity remaining.

Who is good in the private route to go down - taking in to account no-one see's these as big issues with her apart from me. I will try and mention to my sons OT/SALT when I see them and get a feel of how Bucks are with diagnosing HF girls.

LeonieDelt the 11+ years are what worry me the most, I am really lucky as we have a very good small rural school in our village which will allow her to get the attention she needs (I hope) without having to act out or become anxious to get it, she thrives on attention- so from an early age I knew a small school would suit her as she would get emotionally lost in a bigger school.

It has only just hit me over the last few weeks and I feel completely lost, scared and overwhelmed.

[Handywoman]

Yeah, the NHS route is brutal. I hear you on that. It is very hard having to fight the fight for two kids. To minimize the impact on you, you need a referral sending ASAP. Waiting for things to go belly up will be even more stressful.

Ultimately, for the purposes of secondary school you will probably need an NHS diagnosis so if you just go private, you may only delay the inevitable. You can get a private assessment while waiting for the NHS wheels to move at their glacial pace. It is scary. But you can do it.

What helps my sanity most is getting really good practitioners on side, even if it costs ££££. Our private SaLT has literally stopped me from going mad, she has been our best advocate since dd2 was 4 and is always there for us with listening ears, years of wisdom, experience and common sense. So helpful while being buffeted about by the NHS and education system.

[kyz1981]

I am planning to book her a GP appointment for Half term as she has some odd health things going on atm some of those may be anxiety related but could just be health related, so I will mention my concerns and see how the land lies, it would be a pead that would diagnose in this area as she is under 5, and I am not sure if they would get her as she is very subtle, or I see her that way.

DS salt is coming to see him on Monday (NHS). I will put some of my concerns to her and see what she thinks the NHS will do if anything.

If I got a private DX It would only be so we knew ways to help her and I would then go down the NHS route.

I guess I am just worried I will be seen as wanting my DD to be labeled and people won't take me/ her seriously-I am not sure how I would cope with that at the moment, but I won't do nothing, I will look at getting her assessed even if at first it is only down the private route as I just feel I will get listened to and taken seriously.

[kyz1981]

Thanks - you guys have given me the confidence to move forward with my concerns- Just out of interest are there any things that I can do with her whilst she is young to try and ease some of the anxiety and help her with social relationships.

[kyz1981]

Thanks that has helped me gain some perspective, kind of a crazy question givedn my DS, but my Son is much lower functioning to her so tends to need more physical interventions to keep him safe and his sensory issues are massive- so just could not get my head round what I needed to do.