New here, daughter awaiting asd assessment, advice from mums with experience needed

Hi all, 

So my daughter has been diagnosed with ADHD and now being assessed for autism, she is 7 years old and was born prematurely but other then that has been a healthy child,
We have attended the sleep workshop and her bedtime routine is not an issue as far as they are concerned (she takes a while to settle as she is very anxious and needs a lot of reassurance but she is normally asleep by 8.30 and wakes at 6.30 so 10 hours sleep (she wakes when wet and sleepwalks but generally sleeps for the majority) 
We have had an edpysch assessment who was not made aware of her diagnosis or suspected autism so concentrated solely on her academic strengths, she scored average for all areas but high average and low average means there is a discrepancy in her problem solving (high) and processing speed 
(Low), edpysch was happy with dd and said she held no information back, quite happy to tell the lady the ins and outs of her life, pets and family lol - talks a lot basically even to a stranger she will tell them everything 

We have an OT appointment this week as dd struggles with handwriting (also pointed out by edpysch) she struggles with buttons and tights - not sure how much of this is her struggeling or her ADHD meaning she takes the easy option and rushes as she is too busy in her mind to concentrate iykwim

We have the behaviour workshop also in June and seeing the consultant again for ADHD review and autism assessment in October 

Basically I'm being made to feel by some (including school) that it's just me she's doing it too as I'm too easy and she wants to wind me up
Hubby and I are normally the only ones who see her suffer and see the distesss she is in over changes etc.. 
Speaking to the ladies at he CDC they said this is normal for girls with asd as there symptoms come out abit later then boys (hold onto social cues longer) and when they are starting to come out it is normally in their safe place which would make sense as the past 6 months dd has got worse but mainly just at home with us and around her aunties house (my sister sees her at her mid-worst if that makes sense) 
Some family agree that she shows signs (they don't see the half of it) and friends with asd experience so I'm sure I'm not going mad BUT 
School are really not being much help and patronise me it feels at times 
Edpysch suggested that we share a positive book, something both i and teacher write in each day to build Dd's confidence 
Today's comment from teacher was - cried crocodile tears when coat broke but soon stopped when told to stop being silly'
The thing is, my daughter has only just stopped wearing an old big coat that causing weeks and weeks of trying to get her out of and causing her a lot of distress (basically winter coat that she needed to stop wearing as it was dirty and too thick) 
The new coat has now broken at school and dd was visually upset when I picked her up 
I mentioned to the teacher before half term that we've finally managed to get her out of the old coat so teacher must have known this was an issue at home (plus it was a positive on the day she finally agreed to stop wearing it!) 
It seems petty but to me she shouldn't have been told to stop being silly and teacher clearly does not understand what it's like
For us and the comment just seems like another dig at me for not being stern enough iykwim
The list below is what I showed to consultant on day of her ADHD diagnosis and this is what prompted him to do autism assessment 

• Issues with getting dressed – buttons/tights. Gets frustrated, wonders off onto something else leaving herself half-dressed or naked
• Will rush off the toilet without wiping/washing hands
• Needs prompting to brush her teeth – if left to it she will put her brush down in her room and start playing again
• Up many times after bed time, excuses such as – need toenails clipped, wants to talk, needs reassuring, wants a cuddle/kiss etc…
• Sleep walking during the night, wets the bed some nights. Changes her pyjamas even if there not wet or dirty just because (in her sleep?)
• Easily distracted when eating but eats amazingly well and a very varied diet, meat, vegetables etc... not much She won’t eat or try
• Tantrums if asked to do something she doesn’t want to do, doesn’t understand the warnings been given, i.e if you continue you will lose your ipad, tantrum then turns to I don’t want to lose my ipad, then tantrums because she continued and lost it and then goes round in circles despite losing many things in one sitting
• Darts around, runs in the house, up and down stairs. No spacial awareness it seems. Has falls and bangs
• No sense of privacy – will happily jump and climb over people even if they are people she doesn’t know very well, will happily tell strangers everything about pets she has or toys etc..
• Will sit on the sofa/in her car seat fidgeting, jumping and making weird noses for no reason. Likes to act like a horse/pony
• Obsesses on things being where they should be or how they should be. Major incidences when little brother has his hair cut. Physically shaking, crying and running upstairs under her duvet in what seems like fear. Same when a room gets moved around
• Very social and caring. Tells me she loves me around 100 times a day and loves her cuddles. Maintains good friendships. She does struggle with being bosy and not understanding that her peers might want to suggest a game too.
• Writes letters to say sorry to me/dad or letters to tell us she is angry with us when she has been told off. Given that it is difficult to get her to read/write she is happy to do this on her own accord.
• Obsesses about plans, needs reassurance we are doing x at x time etc... constantly asking if were still going, when we’re going, gets nervous about who is taking her where
• Runs out into the road if she sees me or someone/one of the cats in the garden on the other side of the street
• Struggles with spelling/handwriting but is very articulate and intelligent until it comes to pen and paper. Very good general knowledge
• Doesn’t appear to take in what you say. For example. She comes in from school and asks what’s for dinner, I explained that we needed to pick up daddy’s car from the garage so we will get a McDonalds on the way home, she replies to say mmm I will have a wrap
She then went into the kitchen 3 minutes later and got fish fingers and chips out of the freezer and put some on a baking tray. I caught her and asked what she was doing and she said she was getting dinner ready for her and Her brother – I explained that A. she was never to go near the oven and help herself to food and B. were going to McDonald’s like I just said
Her response was a laugh with “oh yer”
• struggles to understand rules when it comes to games and gets very upset and frustrated if she loses
• likes to play her games, everything has to be what she wants to do. She is very dominant and needs to be in control
• doesn’t not finish things such as braclet making etc.. she will go off and start a new project before finishing or tidying up a previous project
• loves spending time video recording herself discussing toys, dancing/singing

This is what I've added to it since the appointment as consultant asked me to watch for certain things and dd has got worse as I said earlier:

- recently says she washed 3 times to make sure she was clean
- Picks and bites her toe nails down until the skin is raw and sometimes infected before she will tell me there's a problem 
- Struggles with direct eye contact even if she appears to be looking at you she will be looking below your eyes 
- Worries about her skin 
- Hoards everything and hates clear outs, gets very upset and angry if I tidy her room and put stuff in different places 
- Hates new clothes, strops about wearing anything new
- Won't have her hair cut and will kick up about a little trim when needed
- Only wears her hair in a pony tail and refuses plaits or buns etc.. (as this is what horse have according to her)
- Must sleep with big light on and 2 lamps 
- Sits to watch an Ipad but changes what she's watching every 5 minutes never seeing an episode through 
- ripped off her toenail completly when there was a little bit sharp 

I have also video recorded her having meltdowns when the garden changed, rooms changed around and things tidied up 

Sleep workshop told me to refer her to chums who have since come back and told me that they feel it is more appropriate I get in touch with the local autism charity based on her symptoms 

If your managed to read all of this then what are your opinions on her symptoms, how I deal with the school on this and if I should carry on being stern with her but understanding at the same time 

I'm going to be contacting the local autism charity also but I would appreciate other experience parents view on this 

Many thanks

Parents
  • Thank you,

    been to ot appointment this morning 

    daughter is not balancing very well but not a major concern

    things like buttons, tights and handwriting is all to do with her attention and not pysical which is what I thought anyway 

    she would not put on the shirt the ot gave her to do buttons with and I explained that

    clothes is a big thing for her, nothing in particular as yet but just anything that is not hers and she not used to wearing - makes clothes shopping really difficult!

    no signs of dyspraxia as she is very good at problem solving when it comes to obsticales 

    her clumsiness is because she's rushing around too much so her ADHD 

    she did say she would go back to school and report that she needs movement breaks, something to fidget with and a gripped pencil rather then a straight one as she does have bendy fingers and wrote better with them

    no statement as yet but this is something I will ask about, she is already on the Sen register but I'm not sure what the difference is 

Reply
  • Thank you,

    been to ot appointment this morning 

    daughter is not balancing very well but not a major concern

    things like buttons, tights and handwriting is all to do with her attention and not pysical which is what I thought anyway 

    she would not put on the shirt the ot gave her to do buttons with and I explained that

    clothes is a big thing for her, nothing in particular as yet but just anything that is not hers and she not used to wearing - makes clothes shopping really difficult!

    no signs of dyspraxia as she is very good at problem solving when it comes to obsticales 

    her clumsiness is because she's rushing around too much so her ADHD 

    she did say she would go back to school and report that she needs movement breaks, something to fidget with and a gripped pencil rather then a straight one as she does have bendy fingers and wrote better with them

    no statement as yet but this is something I will ask about, she is already on the Sen register but I'm not sure what the difference is 

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