Nursery don't have any concerns...is she just masking?

[cryingrealtiers]

DD is almost 4 and we were referred after her 27 month check up as she scored highly on the social/emotional questionnaire. We suspect that she is autistic and at the point when they saw us when she was around 2.5 she did score lower on social aspects than anything else but they said to wait and see as she might still develop those skills etc.

Fast forward to now and we have our follow up appointment but the nursery she goes to are saying they have no concerns about her at all. I know ASD is more difficult to diagnose in girls and I'm wondering if she's maybe masking a lot during the day. She's very unsettled when she comes home. Will this affect a possible diagnosis? We have a list of behaviours etc but they're saying she's fine, happy, settled etc. I just worry that she won't get the support she needs and I would also really like some support for us as I am struggling sometimes myself, knowing how to respond in certain situations etc.

I suppose I'm just wondering if anyone has a similar experience where nursery or school didn't see any signs but you still managed to get a diagnosis?

Hi.

No one believed me either! Like you I started raising concerns about my DS at the 27 month health check, at that time my main concerns were his motor skills and balance, but we very much got the 'wait and see' response. DS is very bright and has good speech, but there has always been something a little 'off' with his understanding. School did not see a problem, paediatrician felt 'all normal', tests eg eyesight, bloods, physio all fairly normal (had to attend the eye clinic multiple times due to his refusal to cooperate).

I know girls are supposed to be more difficult to diagnose, but DS was a raging banshee of a small child, he used to attack and bite me constantly - his behaviours were not subtle! In school he was fairly compliant, but afterwards his meltdowns would be horrendous, yet school would tell me 'it's normal to be tired after school' etc etc. Eventually took him to be assessed (privately) aged 9 and was diagnosed with ASD. School still not terribly helpful, but it has helped DS with his understanding of himself. It would have helped me to have an earlier diagnosis but I don't think it would have made much difference in terms of support unless I had been prepared to change DS's school.

Perfectly possible to get a diagnosis without school support, as many people have, but I suspect more difficult.

Does your daughter have sensory issues? My son has and I massively underestimated how much they were affecting him, especially at a younger age. In terms of the 'wait and see' approach, I think it is reasonable to a point (as some things get clearer with age), but I think with hindsight, that DS should have been assessed at 6/7 years of age, as I think after that things become harder to unpick as they get older. Things have got easier for us as DS got older and the violence towards us is much less of a problem.

Interestingly, the pre-school did see a problem and we were referred to some sort of early years service who assessed him and also agreed - I have a weird memory of being told that as an educated, articulate woman, I needed to 'make them listen to me'. Ah, if only it were that simple!

Oh yes.

We were convinced that our son was autistic when he was 3, which was when we started raising concerns.

An experienced HT who I respected highly didn't think he was.

A psychologist said he "definitely" wasn't autistic on the basis of one hour's observation.

An experienced primary school teacher said there was nothing wrong with him, he was just naughty/awkward/lazy (whichever adjective she fancied that day)

He was finally diagnosed with ASD when he was nearly 8, after an SLT who had been working with him for some time noted and recognised the traits and behaviours that we had been banging on about for years.

Keep going OP.

Thank you both. This gives me hope that we can still be listened to even if nursery don't see any signs. I wonder if they do see anything but just don't recognise it for what it is? I'm not sure.

Yes, there are definitely sensory issues and have been since she was younger. I'll make sure to mention these when we go to the appointment. A friend and a family member have both said I just need to be pushy and make sure I get all the points across and I'm hoping I manage to do that!

@cryingrealtiers

If you are not already doing so, it can be useful to keep a daily diary so you note down all the bizarre behaviours etc as they occur, and any other concerns, so you can be sure of telling them absolutely everything at the next appointment.

Useful information and support/helplines for parents here:

www.autism.org.uk/

Thanks, Ellie56. I think a diary might be a good idea as there are quite often things that come to mind that have happened so having them all written down would be good. Thanks for the link as well

This Flying Under the Radar leaflet is helpful to explain to professionals how autism presents differently in girls:

nasen.org.uk/resources/girls-and-autism-flying-under-radar

When you say nursery, is it a qualified teacher at nursery who has observed her closely? Or the Senco? At nursery if they're not (yet) seeing meltdowns and Sensory issues, they may be able to see social communication differences but they need to look closer, for longer, with girls.

Eg does your DD approach other children or tend to play alone unless an adult draws her in and scaffolds for her?

Does she hang back and watch closely before she joins in, so she can copy behaviour of others?

Can she manage one or two line interactions but then she can't keep the interaction going back and forth?

Does she mimic phrases she has heard on Tv and assume characters eg copying accents?

Does she give eyeball to eyeball contact or is there something ever so slightly "off centre" about it, looking more around your face than into your eyes?

It may be that the nursery teacher or senco is not experienced enough yet to spot autism in girls, because it looks different from the male version the diagnostic criteria are based on. They may feel uncomfortable or out of their depth and prefer to say there is no issue.

If you don't get any further with them, could you afford to pay a SaLT privately to come in and observe her at nursery and have a close look at her social communication? A report from a SaLT flagging differences should be enough to get the referral ball rolling via HealthbVisitor or gP.

It's just the staff who have observed her so far (her keyworker and then I think possibly the nursery manager) so I'm not sure that they do know what they are looking for. I have a family member (female) who didn't get a diagnosis until much later in life and I know that their teachers always said she was fine - whereas she obviously was masking or they weren't looking for the right signs, as you've said. I think this is why I worry as I just think they have a checklist they're looking for that is maybe different than what they should be looking for. Paying privately would be an option if we don't get anywhere. Thank you for that leaflet as well - that's really helpful.

I just feel like I'm worried that they are going to be dismissive when I go to her next appointment. I know I just need to make sure I say everything that needs to be said.

Sorry, this is probably too late to comment to be of any help, but YES, definitely possible to be masking at nursery at that age, and/ or if not making problems for teachers that it can go under the radar. I have two boys that were diagnosed aged 7 and 9 - in neither case did nursery raise concerns except for potty training, and autistic girls are on average tbought to be more easily missed than boys. Then bam, school started and the younger of them gave up on the masking/ reached threshold of coping with demands and school made referral for both.

Thanks, littleapple. It's reassuring to hear that we aren't alone in this. Toilet training seems to be the only thing our nursery have noticed but I just think they maybe aren't looking for the right things.

Did any of your children have problems sleeping? DD's sleep has always had issues, like this week she's been waking around 3am and that's her awake and she can't get back to sleep. Even as a small baby she would be awake for hours in the night but quite content, just lying in her cot chatting away etc. It's just like she doesn't need very much sleep.