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

[Busybecca]

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

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

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 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?

It's beyond frustrating, isn't it? The paediatrician made it sound like I should be grateful she isn't at a special school and that I should pretty much stop making a fuss so long as she's keeping her head down at school.

children with autism completely struggle academically and do not exceed expectations like you describe
FFS Would he like to see my degree certificates then? Or the one I've got for a professional qualification?

My son was dx at the age of 4, I always knew there was something but I really wasnt aware of asd 10 years ago.
It was my sons nursery teacher who after two sessions took me into a corner and said mrs Daffodil I think your son may have autism.
It wasnt plain sailing even though the school was behind us, the ep was awful and said it was because he was obsessed with star wars and he couldnt have austism because he could smile at his dad!
He is now 10 and has not been to school for 8 months as he just can not funtion there.
We are slowly getting some help but its been very hard.
So even with a dx there is not much change tbh, the help and support is not forthcoming and mostly you have to 'beg' for it.
There isnt enough people who are trained and not enough funding.

You need to get a private clinical psychologist, one who will come to your home and your school to observe. Pm me if you are in South England for a name. That way you get a full picture. Contact the NAS for guidance. The label is one thing and I think it helpful to explain that she is neuro diverse but it is strategies you need. The paed may well have been a general paed and not a behavioural specialist. To be honest, your daughter's needs are probablly being met adequately in school at the moment although I think it sad that no one is going over social stories with her about friendships, change. It may mean you move schools. The quality of the school can be determined on how useful the SENCO is and how clued up.

Have a look at the girl with the curly hair project, it's an organisation specifically for women & girls on the spectrum.

thegirlwiththecurlyhair.co.uk

The National Autistic Society have a helpline which you can call for advice.

www.autism.org.uk

It is well known that girls are underdiagnosed because theyre often better at masking, but even when they dont mask, they dont always present themselves in the same way as boys with ASD do. I remeber the questionnaire I had to fill out for DD before she was offered an ADOS, and it was just so obviously aimed at the stereotypical way that boys present. I wrote lots of extra things on the form and did mention that I thought the questionnaire was aimed at boys, and spoke to the paediatrician about this. She was actually diagnosed late last year, but I wonder if it was taken more seriously because both her brothers also have ASD.

This infuriates me. Ds was diagnosed over a 3 year period and the biggest factor for evidence was when they did socialisation groups as part of the diagnosis. 10 wk period of a group of kids for 30mins made to do tasks with specially trained asd SALT specialists. It flags the quirks, they get to know the kids. Ds did two sets and they showed his asd traits. Iv no idea why all health trusts don't do this

In my area it's completely normal for acknowledgment of ASD to be minimised and dismissed, unless the child has obvious support needs.
Teachers often fill in questionnaires to avoid further involvement, and are given a much bigger role in the referral process than they are qualified or experienced enough to carry out.
Even with a diagnosis, children are at the mercy of schools who refuse support etc.

Someone mentioned seeing an OT. We had to do this privately as we couldn't get a referral through the NHS. We saw someone who carried out an OT assessment which gave us more evidence of needs.
It is possible (if you can afford it!) to build up evidence. You could find a private educational psychologist to observe her in school.

TBH this sounds like typical treatment of a suspected autistic child. Lack of understanding, and involvement from people who seem to need "Autism" tattoo'd on the child's head before they'll believe it exists.

We had to pay for private assessment in the end, it was worth it to get her the support that she needed. Things had got very bad up to that point, we also pulled her out of her bullying outstanding primary school.

I was told when ds was diagnosed days before his 7th birthday that he was classed as young to be diagnosed and most who get a diagnosis locally aren't diagnosed until they are 10 or older. We first raised concerns when ds was 3 so still took us 4 years of battling and waiting to be deemed "lucky"

Paed: children with autism completely struggle academically and do not exceed expectations like you describe

Dd got a place in a superselective grammar which is in the top 3 in England. (Didn't take it up)

Your peadatrician sounds very ignorant.

Girls with undiagnosed ASD can go on to be misdiagnosed as having a Personality Disorder in adulthood. It's unfortunate because ASD can present differently in girls than boys, but the diagnostic criterion are tailored towards boys as they are more likely to have it. Don't give up!!

No. Boys aren't 'more likely to have it'! They're more likely to be diagnosed. It's this sort of myth that leads to the situation the OP is in. Girls mask better. A decent doctor can diagnose. It took 90 minutes for me to get a 'yes she is' informally after dd had flapped about the room, hidden, refused to speak and then rambled about her obsession. The formal diagnosis took longer but it was still under 6 months.
It's taking longer to get a formal diagnosis for me but I have an informal diagnosis.

Another High Functioning Autistic woman with a degree here.

You need a different person. Has the Ed Psyc seen her?

And as above she is probably masking well at school. This is not a good thing, it's exhausting for her.

You might want to look at this

axia-asd.co.uk/evidence-autistic-people-hiding-masking-difficulties-educational-settings/

There are very specific warnings in the NICE guidelines about masking causing difficulties identifying autism and also, masking is specifically mentioned in the DSM 5 criteria for autism (which is used in the UK together with ICD-10 to diagnose).

Therefore there is no requirement to identify autism in more than one context for diagnosis, otherwise this would lead to significant under-identification.. Compared to identification of ADHD where the signs have to be present in more than one context, although this also presents a problem for identification when autism exists together with ADHD (40%) and masking of ADHD signs often takes place.

Can you get a specialist in autism not a general pead?

Going by the op it doesn't really sound like masking is the issue, it reads more like the usual - teachers not having the experience to identify ASD traits, and an incompetent paediatrician.

Sorry I'm in a rush so can't post properly, but this is very similar to what I'm going through with dd.
She is 8.5 now and her first official assessment is next week. I was told numerous times that she was just slightly behind, or shy etc. Now this last year as well as having a physical disability she's been diagnosed with sensory processing disorder, dyslexia, dyspraxia and awaiting the assessment for autism.
It was only when her teacher this year actually listened to us and admitted he had quite a few concerns himself that we were taken seriously. I've known there has been something wrong since she was a baby, but we have had to wait until she has fallen so far behind at school before anything is being done about it.
It's upsetting and frustrating and sometimes I could just scream. If you need to talk please send me a pm and I could go into more detail for you.

it took me six years to be taken seriously, finally got a dx aged nine - High Functioning ASD. You instinctively know as a parent that there is something wrong. My son masks at school, he has learned routines and what is expected of him and conforms. However they are having a disco dancethon next week and I just know this is going to cause issues - over sensitive to noise and crowds. Last time he came home and sat on his deb for ages rocking and humming

Exploded That didn't come across as I meant it to, I meant that the diagnostic criteria are stacked against girls, so boys end up 'having' ASD more as a diagnosis, which professions seem to then think means boys have it more... disregarding that the diagnostics cater to them more etc. It's a circle.

Sorry, I didn't mean to perpetuate the myth!

Which then leads to under-diagnosis in girls... blah blah.

We finally got a diagnosis for DD last year, this was only successful after we moved schools and straight away they though she had problems which th either school completely ignored, it is so frustrating

teachers not having the experience to identify ASD traits, and an incompetent paediatrician.

How do you know that the teacher doesn't? That's a very broad statement and won't be of any help to the original poster.

Because going by the description of the child in the OP, there are some clear flags of ASD, whether the child was a girl or boy, but they're not being recognised. The paed's comments show he doesn't seem to have a clue about what autism is, apart from maybe having a broad stereotypical knowledge.

Having been through the process of trying to gain support with two children and having attended staff training sessions and seen official training courses aimed at teachers and carers, having seen many people over the course of the last few years, and having been diagnosed myself, and having hung around on the SN boards and FB support groups for years, I can honestly say that the state of autism understanding in most schools I have had anything to do with, and most professionals I have had anything to do with, is woeful and let's children and families down all the time.

As a comment, it wasn't particularly meant to be helpful, just a comment on how things are.
There are options for the op, as many others (including me) have said, but the fact remains, if you have a child who doesn't present in a stereotypical way, and that's not to say they're masking, although that definitely is an issue, it is likely that people will not recognise it as autism until the child has reached crisis point, when their behaviour becomes more difficult to manage, but at the same time, easier for less experienced people to spot.
It's just a pity people aren't given better training so children can be identified before getting to crisis point, when for many children, it can be very difficult to return to relative calm without major intervention.