Desperate for some advice on helping DD aged 7 with ASD traits

[Mrsdoodle]

Hi,
DD is 7. From around 18 months she has had sensory difficulties - screamed in the rain, screamed when we bathed her and so many other things - e.g. refused for 2 years to wear any clothes that went over her head or that had a waistband.
She is now in year 2 and on the face of it doing v well at school - academically bright and her classmates seem to like her. The teachers describe her behaviour as excellent and say that she seems relaxed and happy.
At home she suffers extremely high levels of anxiety. We have near constant tummy aches, nausea, crying and general unhappiness. It is v unusual for more than 10 mins to go by without a complaint about illness or worry / unhappiness. Much of this is centred around how much she 'hates' school. She isn't really able to articulate what she hates, but talks about the noise in the classroom. I think she also struggles with the unstructured nature of playtime.
She still has quite a few sensory difficulties but they are not as pronounced as they were - or perhaps she's got better at imitating NT behaviour. She does display some behaviours which suggest ASD. She struggles enormously with transitions - such as leaving me on school days - and is v emotionally immature in some ways (major tantrums, can't cope with disappointment, can't take her into shops) which is becoming more apparent as her younger brother overtakes her on this. There are so many other things that seem inconsequential in themselves, e.g. if she sees a classmate outside the school unexpectedly, she refuses to answer when they say hello. She also won't say hello back to anyone unless she actively likes them (most people she is quite indifferent to). I didn't notice things like this much until DS (5) got older and just 'got' the idea of saying hello without it having to be explained.
The only time she's had a period of relative happiness was in reception, when oddly she was v relaxed and happy even though she moved schools part way through the year, which we'd thought would be v hard for her.
Anyway, I feel at a bit of a loss on where to go next. We've done a course of sensory integration therapy a few years ago - it was v expensive and no idea if it helped. We are repeating some retained reflex therapy because it seemed to help a bit when she was younger. I think we've tried pretty much all the parenting-type advice out there. She is at a lovely infant school and her current teacher is sympathetic, and is good at implementing little helpful things like time out for her and letting her help reception with reading etc. He is open to suggestion but because she is fine at school, doesn't really know what else to do.
I guess we could try more sensory integration therapy, or I could try CBT for her (never tried this). Or we could look at something more drastic, like taking her out of school and trying to find a private school with smaller classes. There ones around here are very academic focused (high pressure) though which doesn't really help. GP has offered a CAMHS referral but I don't think it would be accepted. I could look at an ASD assessment (private) but I don't think she would get a diagnosis.
Or I could just accept that this is the way life is for her, and try and help her as much as possible. Maybe she really is ok at school, and it's the transition she can't cope with. Maybe she'll find junior school easier, as the classroom may be quieter and less hectic. I'm so worried for her. It sounds awful but I'm starting to feel so detached from other parents at the school gate when they talk about their worries about their children - I feel that there's a real chance my child will grow up with a major anxiety disorder.
Sorry for the essay - v grateful for any advice. Many thanks.

In my experience CBT without making some changes in the school environment is as good as useless (if school environment is the cause of anxiety)

There is a big difference between anxiety disorder and anxiety as a result of ASD and school environment.

It is very common for children to hold it together all day in school and for the anxiety to come out at home.

Have you spoken to teacher about your dd's behaviour at home and what she tells you/what you suspect she struggles with?

Have you spoken to GP about a referral to paed?

Thank you I really appreciate you taking the time to respond.

In response to the points you raise Userone1, thank you for the point about CBT. It's v interesting what you say about the difference between anxiety disorder and anxiety resulting from ASD. DD developed major anxiety symptoms at around 2.5 which included panic attack type symptoms (palpitations, sweating, dizziness etc.). She had a v 'normal' and stable home life and there was no obvious explanation - I felt it was too extreme to just be because she was an 'anxious child'.

I've had endless meetings with her teachers and the SENCO. It's so hard when she doesn't have a recognised condition or e.g. a report saying she needs x, y and z. School are lovely and current teacher has a brother with ASD which seems to help with understanding how DD can be.

PolterGoose yes I've read lots about masking. Every now and then I get to the point where I think I must get her assessed. When I read about ASD (I've read lots! Including Tony Atwood) she has so many of the typical 'symptoms', yet when I look at the key diagnostic criteria she doesn't really fit. Her speech is v fluent and she can hold mature, interactive conversations. She doesn't have obsessions, she plays imaginatively with toys (though I notice now - not in the same way as her brother), she likes spending time with other children and has plenty of friends.

Perhaps it's time to look at getting her assessed. Are you able to recommend a good private clinician? I think I'd prefer to go down that route rather than battling with the GP. At least then we could have come answers. Yesterday she asked me again why she is so 'useless' - she first asked me that just after she turned 3.

Will need to find a way to raise if with DH too, and the rest of her very loving family who insist there's nothing 'wrong' with her and she's just a bit highly strung.

Thanks again.

I should have made it clearer, a person could have ASD and also an anxiety disorder.

What I meant was, an anxiety disorder is usually diagnosised if there is no 'cause' for the anxiety. ASD tends to be the 'cause' of anxiety, with people diagnosed with ASD.

Thank you v much Poltergoose, this is very helpful.

If it's not stretching your helpfulness too much (or if anyone else has a view), would it be better to get her seen by a paediatrician than a SALT person or a psychologist? Or does it make no difference?

We are in the Sussex area but can travel.

I've had a bit of a look on here and seen Daphne Keen recommended quite a few times.

Thank you!

Thank you! I'm not sure DD fits the lots of previous assessments pattern, I shall go and do some research...

You mentioned upthread that your GP has offered a Camhs referral. In your situation I would take it and see where it goes (after all you could back out at any time).
Our route into ASD assessment and dx was via a Camhs referral for anxiety and depression. Although in our area Camhs don't dx ASD (although I think perhaps they do in other areas) they were able to refer on to community paediatrics and meant we were on a faster track to assessment because of the impact on her MH.
I looked into private dx (Margo Sharp and Daphne Keen) but in fact the wait to see them was almost as long as we waited for our NHS assessment, so I decided to see where we got with the NHS first. I'm glad we did as it meant DD went straight on the list to access specialist help for her MH following the ASD dx.
My DD did find quieter classrooms helped in juniors, and especially the two years where she had quite 'old school' teachers with lots of structure. But she just couldn't keep up with the social development of her peers and that was when all her difficulties really came to the surface.
You're doing the right thing to start the ball rolling earlier rather than later.

I hope you don't mind me jumping on your post.

I'm reading with interest as this sounds very similar to my 7yo dd, who is having very similar difficulties, also masking at school. The only difference being that she also has learning difficulties. The school have been good - I expect mainly because of the learning difficulties - and her sensory issues have been recognised by her teachers. As she is an angel at school, they don't see the behaviour issues we have at home (although they have recognised them to a degree as her teacher has seen her with me at the end of the school day when she is demanding, defiant and won't leave my side for a second to have a private chat with the teacher).

We're under the paediatricians, but haven't been accepted by CAMHS to see them as "not bad enough". The paed, however, has seen enough in her to refer her for an ADOS assessment, which we have now been on the waiting list for now approaching a year.

However, I'm wondering, if you have a daughter who is extremely good at masking, and like you also say, makes eye contact and makes interactive conversation (although often not "appropriate" conversation), and appears to play imaginatively (also, with differences that I can see from other children), then will the ADOS prove anything? I'm not holding out much hope that we will come out of that with any diagnosis, and I'm not really sure where else to go. We've been under various professionals for about 3+ years already, with no diagnosis of anything yet, just lots of "difficulties" - sensory difficulties, control issues, learning difficulties, difficulty with focusing - when does any of this actual turn from a "difficulty" to a "disorder" and who is it who diagnoses that disorder? And will a child, particularly a girl, who is very good at masking, be diagnosed by an ADOS assessment? Btw, the social and communication questionnaire was already carried out the paed, and her score was borderline according to that, although the paed saw enough "behaviours" to feel it was worth referring for the ADOS despite just missing out on the cut off score.

ADOS doesn't pick up everyone, but my DD was dx with ADOS and there are a lot of verbal, able girls who are. She is very adept at masking - even some professionals admit they have been fooled.
If the ADOS comes back borderline or you don't feel it gives an accurate picture of her strengths and weaknesses, DISCO is another assessment tool that can pick up the more subtle presentations.

She sounds like an expert masker! And it's bound to take it's toll on her.

My use to have the stomach aches and vomiting too. He actually would go so pale suddenly but be fine after being sick.

The sensory stuff throughout the day can help to maintain a good balance. DS has recently been on a sensory course and his ot said it needs to be done even when they seem ok. It's to keep a balance - so proactive rather than reactive.

I don't know any private clinicians through experience but have heard very positive things about Margot Sharp and Daphne Keen.

Oh just seen more responses! All very interesting - thank you.

I have been doing some research since last posting. I think ideally I would want a DISCO assessment, or at least someone who specialises in girls / masking. Margo Sharpe sounds v good, she comes and watches the child at school and again at home. I've asked at the Lorna Wing Centre who sound perfect, but soooo expensive. It's so hard to know which way to go - was hoping to spend up to £1,000 but it looks like it could cost 3 times that!

I v much appreciate what you are saying Thisismynewname123, I also feel like I'm going round in circles, and am worried I won't get the definite answer one way or another that I think we really need.

I have also taken your advice Melawati and made an appointment with the GP to request the CAMHS referral. I think last time it was mentioning the near-constant physical symptoms that got the offer of referral, so I'll stress that. Maybe I should also ask for a paediatrician referral.

Thanks again.

V interesting. I'd perhaps go for a referral.

Sounds v similar to our DD, almost 6. She's under assessment process at the moment. I see what u mean about the traits which don't fit, we're the same. I think slightly diff though if aspergers (part of ASD) traits and also presents differently in girls.