Sunday, 3 March 2019


Last May my eldest daughter was diagnosed with ASD after a two year wait on the ASD pathway.
I went along to the appointment sure I would be apologising for taking up their time and leaving the appointment without a diagnosis of Autism and if they went by the Questionnaires sent to me and her school alone we would have done because she doesn't fit the criteria for ASD at all by paperwork and the questions asked.
Luckily through out the appointment she was sat with a Speech and Language therapist while I spoke to the Paediatrician, If she wasn't sat with this lady we would have been none the wiser to her world and would have left this appointment being told she doesn't have ASD.

The thing with Autism is you hear the word Autism and instantly think Rain man, the girl in Hollyoaks or Pablo from Cbeebies but that isn't always necessarily the case. 
She isn't your 'typical' autistic person she isn't sensitive to light and sounds, She isn't clued up on one particular subject that she can throw numerous facts at you about, She doesn't flap her hands around or anything that stands out as Autism if you don't know a great deal about it.
She is very sociable, She will only wear leggings because jeans and even jeggings are to structured around the crotch and waist for her liking, She won't wear patterned socks because she doesn't  like the feel of the bobbles, off the shoulder tops/jumpers or shoes that don't go right up the front of her foot or flip flops that go in between her toes, she can't tolerate layering up and refuses to wear a scarf and a lot of the time even a coat and god forbid don't suggest any kind of bra that has a clasp, she will only wear her hair in two styles a ponytail or plait and her leggings so high they could be an all in one.
Each of these things don't stand out  to others but are a really big deal to her and any attempt to try and change these things cause a great deal of upset.

With a diagnosis taking so long a lot of what she does is just her to us it's only now after completing a Level 2 in Understanding Autism course that I see a lot of what is her ASD and not a pre-teen trying her luck a much as she can.
During my course a lot of what I was learning about was like someone had sat and observed Daisie while making notes, we'd been going through some challenges with her for a little while which stepped up a notch when her baby sister was born, Yeah I hear you middle child syndrome right?
At least that's what was suggested to me by a number of people so I shrugged it off a little more, questioning my parenting until her birthday came around and the day seemed really over whelming for her and this really stood out to me, it stood out to me so much once she was tucked up in bed I cried seeing how much a day of her being spoilt with presents, visits from family and a trip out that she requested had become so much she asked to go to her room and be left alone twice through out the day. 
Fast forward almost a year and we're starting the waiting game for the ASD pathway again, She ranked just a point out for fitting the criteria for an Autism diagnosis through the questionnaires we had been sent.  Daisie is the polar opposite to Issy she decided against coming bowling to celebrate her sisters birthday and instead opted to stay at home with my friend because she doesn't like the noise despite us successfully going before with the photo right over there as evidence, Can't tolerate busy shopping centres which on one occasion we thought was because she wasn't being bought the toy she had requested after her having a melt down in front of her school friend who was with us and everyone else in the shopping centre (how awful do I feel now) she's known in the past to tuck herself away under displays in shops while I've been waiting to pay for my purchases,  For awhile she described the bones in her head were dodging and would often have violent outbursts which she had said on occasions she feels better once shes had her outburst or confided in me that she had had a bad day at school, What I thought was her being hyper seems like it may be her stimming she will rock,bounce and often flap her hands quite a lot be it during dinner, watching tele etc, she's extremely anxious, noise bothers her I opened a can of coke beside her and got quite the telling off because of how loud it was, we've recently purchased some ear defenders to see how we get on and have started melatonin to help her get to sleep or shes awake until silly hours.
Which are working a treat for settling to bed and our evenings are no longer a what feels like a battlefield.

Our autism journey is fairly new to us so any suggestions/help would be great if you have any.
Since Issy was diagnosed in May 2018 I've completed a level 2 in Understanding Autism, Recently enrolled on my local BEAMS Cygnet course and trying to do all that I can to try and understand their world that much more. 


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