Presenting differently in different settings

[jackryanswife]

NC for this. Sorry about the vague title, I really struggled to think what my main issue is. This may be long.

In a nutshell, DD3 has been referred to be placed on the Autism pathway. We are waiting for her referral to be accepted or rejected. Our HV made the referral after coming out at my request to do a new assessment, she scored high enough on the ASQ SE questionnaire to warrant referral/ investigation and her fine motor skills were in the grey area. Based on this, my observations and some observations made the HV agreed there were enough red flags to satisfy her that a referral was needed.
I have a fairly long list of traits/ particulars that DD exhibits, each on their own would not necessarily be much of a concern but all taken together are concerning (except one or two which are obvious flags, for example she has to be picked up in a certain way and in a certain location, if this isn't done then she can be hysterical and inconsolable for well over an hour until you do as she wants/ limited eye contact/ some sensory issues/ some obsessive behaviours). However, the majority of these behaviours only come out at home or if my, my mum or DH is with her. At the childminders I think she displays a few but not that the CM is concerned about.
I know her best and in my heart I know, and have always known, she is a little different. I am not concerned about a diagnosis as such but I do want to be able to get her the help she may need once she starts nursery and school. If she seems to cope at the CM's but not once home, is this going to hinder getting my concerns taken seriously? She will be starting nursery in September so I expect she may go either way but again.

Also, is it common for behaviours to come out more when with parents? I know girls can mask so I'm wondering if it's that or I'm just reading into things too much and it's all just developmental and she will "grow out of it"

It isn’t uncommon for DC to present differently in different settings.

DD may be masking at the childminder’s house. Or she may be displaying signs but the childminder is not seeing them or not recognising the signs for what they are.

‘Coping’ at a setting (e.g. school, nursery, childminder) and exploding at home is often referred to as the coke-bottle effect. It can also be that the child ‘copes’ at school but internalises things and shuts down at home rather than exploding.

Support at nursery and school is based on needs, not diagnosis. They should provide support anyway, the childminder should be now, too

Thank you, I suppose because my concerns have been brushed off by those who do not see her behaviours at home I am concerned I'm going to face a real struggle getting her help if she presents as coping when away from me. It often is a "coke bottle" scenario at home

Keep going, listen to your gut, and keep pressing on for assessment. I knew in my gut something was different with my first child, but whenever I tried to ask for help I was labelled an anxious mother and dismissed. Until he was diagnosed autistic at age 5! Then with my second child, I again knew something was very different, professionals almost laughed in my face a couple of times, but she was diagnosed autistic age 3 and she has a high level of need. She masks her difficulties in public to an astonishing degree, and releases her distress at home. Assessment and diagnosis are deeply important (I feel) because they bring understanding, and that is the basis for everything.

@SimilarToAClockShape thank you for your response, that's reassuring. If you don't mind me asking, did you find getting her a diagnosis more difficult than for your son, given your daughter's ability to mask when out in public? I know observation is a large part of the assessment process and whilst I expect the experts will pick up on things that many may brush off, her most concerning behaviours/ traits really are at home. We have filmed a few things but in all honesty I don't feel good doing so

In our case, we were receiving support from a clinical psychologist through the CAMHS under 5s service at the time DS was diagnosed, and by that point DD was 2 and her behaviour was so hard to manage that I was clinging on by my finger nails. One week the psychologist asked me to keep a diary of DD's meltdowns across the day. I got to 9am and I stopped writing them down because she had had several by 9am and I was too depressed to keep recording them. I told the psych that, and I think she took that on board. Then she met DD briefly (even though she was working with DS) and she said DD didn't give her 'eyeball to eyeball' contact, even though I'd never realised DD wasn't making true eye contact. The psychologist wrote a referral herself to the autism assessment team, because she said it would need a strong referral given DD's many surface strengths and having hit all her developmental milestones. They accepted the referral, she was assessed a year later, and diagnosed straight away. I am immensely grateful to that psychologist.

I do completely understand your reluctance to video your DD, and you've got to decide what's right for your family in regards to that. Videos do help, as do detailed diaries and observations from home. I wrote out an observation of DD repeating an intricate play sequence over and over again. If you just saw it once or twice you'd absolutely think it was neurotypical play. But when you watch long enough and realise she's repeating it on a loop, with precise detail, that's when you see her differences.

@SimilarToAClockShape Nursery didn't recognise DD2 struggled with imagination. They saw her role play as excellent. What they didn't see was her play mirrored real life events, and the same scenes would be played out repeatedly. As she got older this became more obvious when undertaking creative writing tasks at school. Her writing was excellent, but she struggled to begin because she lacked ideas.

They saw her role play as excellent.

Yes, exactly this!

That's interesting to know that later on she struggled with creative writing.

@SimilarToAClockShape @ThomasWasTortured this is interesting as DD has always been brilliant at individual play with her figures but her scenarios are always the same/ copying what she has last played with her siblings. I'm going to start an observation diary I think and see if that helps me identify any else or support what I've already seen.