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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

to think that trying to obtain a diagnosis for a girl with ASD is like banging your head against a wall?

83 replies

Busybecca · 28/06/2017 22:37

DD is almost 5. She has struggled daily, forever. Her sleep is appalling. She hates affection or physical contact - screams throughout teeth and hair brushing and washing. She has a very limited diet and eats the same foods in the same order each day. She has never had a friend. She isolates herself. She has no tact whatsoever. One minor incident in the morning will mean the rest of the day is a write off. She won't use toilets anywhere but home and doesn't want to go out. She flaps and covers her ears at crowds and noise. She used to run into the road to escape if the wind blew on her. I have worked with children with ASD and am 100% sure that is why she's struggling.

Before she started nursery I went in to voice my concerns. I told them DD was under a paediatrician and handed them the autism questionnaire to complete and return three months after starting nursery. DD would come out of nursery and completely ignore the other children. She wouldn't eat, drink or use the toilet there. She said it was too noisy and the other children were irritating. A little girl took a particular liking to DD and one day was distraught because DD told her she didn't like her and to leave her alone. Her teacher told her off (which sends DD absolutely hysterical - even the slightest hint of wrongdoing and she cannot cope) and later I spoke to DD and she just couldn't see what the problem with being honest was, and thought it was good that the girl had been upset because maybe she'd leave her alone now. I organised play dates with friends DC and DD completely ignored them or actually ran away from them. Nursery completed the questionnaire after she'd been there for three sessions answering the direct opposite to anything that might indicate autism and wrote that DD presents as a completely normal 3 year old Hmm

When she started reception, again she wouldn't eat, drink or use the toilet for the first six months. She'd go to activities Then move away if other children joined her. She ignored her peers outside of school. She's always been reluctant to go and the morning is full of upset but it's nothing to do with leaving me. Her work was years above the average. Her reception teacher only filled in three questions and wrote that the rest weren't relevant to this age group Angry

So another six months to wait for a review and today I discovered what the new reception teacher had responded to the questionnaire. It only scored 50 so no diagnosis. The 'struggles to make friends' question was answered 'slightly agree' - she's only last week classed someone as a friend, before this everyone was too noisy end irritating. The 'struggles with changes to routine' was definitely disagreed with, even though she's come out of school inconsolable if the teacher or day has unexpectedly changed.

The paediatrician kept repeating that she's coping fine at school and doing really well in her school work so there's no need to worry. That she may well have traits but as long as it doesn't affect her schooling it's fine Hmm Have we tried sleep training? Have we tried refusing to let her be faddy with food? Have we tried punishing her for hitting and being rude? Apparently all her issues must just be coincidences because she's alright during school hours.

It's bloody ridiculous that I see her 1:1 in so many situations and how she struggles, and know how we adapt absolutely everything to her yet her teacher who has thirty other children to concentrate on holds more weight than I do. It's ridiculous that the paediatrician thinks that because she can hold it together for a few hours at school, the hours of misery at home don't matter.

I argued my way to a further review but honestly, I feel it's pointless and that as long as DD continues to be withdrawn and isolated at school then she's going to be totally ignored and unsupported. AIBU to think the whole process is absolutely flawed and frustrating?

OP posts:
imip · 28/06/2017 22:40

That's awful! Can you be referred to cahms? I had to contend with a lot of shit in getting dd's diagnosis. Our pead discharged dd with 'sibling rivalry', ah no, she does have autism Envy

toastandbutterandjam · 28/06/2017 22:44

I agree. My Dsis has quite a few of the problems your DD has. She was assessed when she was 3, but was told she was a 'completely normal 3 year old'.

She struggled all throughout primary school. No friends etc.
Only now are we being taken seriously. She is thirteen and her issues are much worse.
Her sleep is terrible, she constantly talks, she has no friends, always bullied, constant meltdowns, food issues, sensory problems, routine problems etc.

I hope things improve for you and your daughter soonFlowers

BlackeyedSusan · 28/06/2017 22:50

pmed you

PaddingtonLoverOfMarmalade · 28/06/2017 22:53

Agree. 6 years of mis-diagnosis here, we're still a year away from an official diagnosis but have been told she has 'significant autistic traits'. Her self-esteem is in tatters and her chance of a decent education is decreasing weekly. We've spent a fortune on private treatment (sold the 2nd car) and dp, ds and I are fed up and just about coping. It breaks my heart because she tries so hard every day.

ExplodedCloud · 28/06/2017 22:54

I'm feeling particularly bitter this evening but don't hold out any hope of a diagnosis being a bloody use whatsoever at school. Dd spent yesterday by herself after every group refused to let her join them and the teacher let them.

Busybecca · 28/06/2017 22:59

This is precisely why I worry - I don't want it to be irreparable before they'll diagnose and she can receive support. It's so wrong that if school were convinced it was autism and I claimed she was fine at home, they'd still listen to school but vice versa and the parents opinion counts for nothing.

OP posts:
Toysaurus · 28/06/2017 23:02

Schools and ASD diagnosis. I could go on for hours about it. If they'd been honest straight away I wouldn't have a ten year old who was diagnosed last year and is four years behind with reading and spelling. The piss take for me is that he is so stereotypical Aspergers he might was well he might as well be trying to find out who killed Wellington.

And now the same thing is happening to my six year old daughter.

Oh no problems at school. Except the talking about killing herslef because she finds the day so stressful.

I swear some professionals still don't believe girls can have ASD.

ExplodedCloud · 28/06/2017 23:06

Dd was diagnosed a couple of years ago but she's clever so no classroom support at all. Very little other support and no money for them to do any more.

TitsalinaBumSquash · 28/06/2017 23:06

I'm having just as many problems and my child is a boy, he's 10 and has just recovered from another black eye and cheek after a meltdown saw him fling himself across his bedroom and crack his cheekbone on his bed (his self inflicted injuries have been extensive) he's virtually mute around anyone that's not very close family and gets worryingly obsessed with certain people/places or things and I'm still getting told by CAMHS that they don't feel a referral for assessment is necessary. Angry

2sleeps · 28/06/2017 23:07

I teach a child and his parent has reported similar difficulties at home with him. As a teacher I have to be honest and he does present as a 'normal' student. It must be very difficult as a parent to try to get answers for your daughters difficulties and i hope she gets the help she needs soon.

YogiYoni · 28/06/2017 23:09

I'm just at the start of this process with DS and having similar experiences. Sigh.

Hugs.

Busybecca · 28/06/2017 23:10

Paed: how does she deal with birthday parties?
Me: she's been invited to one out of the around twenty that there's been. She completely ignored the other children and sat in the corner until I took her home early.
Paed: oh some children don't enjoy them much do they?

Paed: school say she's never becomes too absorbed in anything to move on, but you say she does?
Me: she was able to do the work they're currently doing at school two years ago - she's bored, she isn't going to become engrossed.
Paed: children with autism completely struggle academically and do not exceed expectations like you describe

Angry
OP posts:
user1498240695 · 28/06/2017 23:10

Go to your GP and demand a CAMHS referral. This resonates with me. Primary school insisted no issues, however it was obvious. It took until the tail end of year six to get her diagnosis and now at age 14 the delay in MHO has made matters so much worse than needed to be. You must be resilient and polite but forceful or you will be pushed aside.

Notonthestairs · 28/06/2017 23:10

Children often hold it altogether at school only to breakdown at home.

Any chance you could scrape the £ together for a private ADOS assessment? (You absolutely shouldn't have to BTW but we used ours to support our EHCP application).

blankface · 28/06/2017 23:11

So sorry you are another Mum who is struggling to get an assessment for your dd because "school don't see any issues" There's a lot of useful advice on the SN boards, SNChat is busy, you won't feel so alone.
www.mumsnet.com/Talk/special_needs_chat

Can you self-refer to an OT (Occupational Therapist) You need one who has experience in Paediatric Sensory Integration. Some of their observations may well help you on your path to diagnosis. They visit school as well and observe your dd there and advise school what interventions are needed (so school cannot deny any longer!) They will also give you lots of coping strategies to deal with the physical contact, hair and teeth brushing and a host of things you've never even thought of.
Check out sensory integration and get hold of a copy of the Out of Sync Child.

Check out PDA, strategies for that will help you rephrase "demands" and present them as choices. poor example but things like instead of causing WWIII by saying "Put your shoes on and eat your breakfast", you ask 'Which do you want to do first, first, shoes or breakfast?"

Ross Greene's Explosive Child is well worth reading, also check out his website, Lives in the Balance.

At least with all those resources, you can help your dd while you're waiting for the "professionals" to actually see how your dd is presenting at school.

You can of course go for a private diagnosis, but be aware that some local authorities will not accept it when deciding on funding to help your child in school ECHP I think it is, check SNChat, , it's years since my dd was in primary school, but they were just as helpful as your are being Angry

Diagnosis by the Lorna Wing Centre is I believe accepted by Local Authorities but please check beforehand. They are the foremost in diagnosing ASD in girls and women, because it presents very differently.

Want2bSupermum · 28/06/2017 23:11

I'm in the US so it's very different here. They can diagnose with school but will diagnose without. It's $1350 for the assessment at Cornell Weil in Manhattan. The assessment includes a written report regarding what next steps are recommended.

Personally I'd cut to the chase and call them if you have any money to spare.

Want2bSupermum · 28/06/2017 23:12

Flights right now are cheap. Wait list is what will kill you. Send me a message if you want a list of the other places which also will do the assessment without school involvement.

imip · 28/06/2017 23:13

Yes, I get very cross that a teacher's opinion counts for more than a parents. While teachers are good at educating, they are not trained in diagnosing autism!! My dd is the consummate masker. Thankfully for her, cahms were up to speed with this, but I realise this is not the same in all areas.

newnamechange84 · 28/06/2017 23:15

My DD is 4 next month. Luckily her nursery teacher noticed she had some 'differences' and referred into see a paed who told me 'possible ASD'. Now this paed is amazing, supportive and we are going back to see her next month. I told the nursery who said 'autism? I don't think so' 🙄 Nursery have been fab and identify that my DD is not the same as others but think dyspraxia. They do not understand the spectrum. EP came in on Monday and said there is NOTHING wrong with my DD. It's like banging my head against a brick wall. Luckily for us nursery teacher and school are fantastic and will support, diagnosis or not. However I know my DD has ASD. We also have a fab disabled children's co-ordinator who is just the best especially as yet teenage DD took 11 years to be diagnosed with it! Keep going - if you have the money though then get s private assessment. I did this with my eldest son for his dyslexia. The school cannot ignore this.

Busybecca · 28/06/2017 23:17

Thanks blankface. I said to the paediatrician that if he thinks it isn't autism, should I let her scream for hours because her fricking cucumber touched her carrot and tell her to get over it? Or continue to 'pander' to her by using the same plate which segments her food? He said I should still use ASD strategies to help her cope if that's what makes my life easier. He doesn't seem to get that I want DDs life to be easier.

OP posts:
Busybecca · 28/06/2017 23:18

I'm pretty sure private diagnosis isn't accepted around here Sad

OP posts:
imip · 28/06/2017 23:30

If a private clinician also works in the NHS, the diagnosis may well be recognised. Posting on the SN boards may help you get good info.

Want2bSupermum · 28/06/2017 23:43

Ask the paediatrician you see in the Uk. Here DS and DD have a paediatrician who is their GP and they are assessed for development issues by a developmental paediatrician.

Cornell Weil is a world leading institute just like GOSH is too. A diagnosis from GOSH would be upheld here in the US.

thedcbrokemybank · 28/06/2017 23:45

Can I ask what a diagnosis would mean for your dd? If you believe she has ASD can you implement some strategies to help her cope in the interim period.
Have you looked at your schools SEN policy and how this relates to your dd? What does their SEN coordinater say and can you work with them to implement strategies at school to help improve your dd's learning environment. There should be a measurable process in place that you can keep refering back to to keep the school accountable.
Good luck

shittymctwatface · 28/06/2017 23:48

Same story, same age, school thinks she's doing great and her behaviour at home is down to poor discipline.

I work in SEN, I know exactly what I'm looking at but her school hold all the cards.

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