Autism assessment - what to expect

[distinctpossibility]

My DD (nearly 12) was referred via SENCo for an ASD assessment, which we sent off in autumn 2022. She's seen and been discharged by speech and language therapist and has now got a date for her assessment with consultant. I am very pleased it's happened so quickly but I am now wondering what to expect.

I first raised the question of neurodivergence when she was around 4 but she is academically extremely high achieving and even took a large part in the school play this year. She coped well at her large primary school apart from a period of school avoidance around 18 months ago. She never actually missed any school but would cry, hyperventilate, retch as though vomiting and experience insomnia and gastric reflux, the latter to the point of needing consultant investigation.

I know it's not for me to decide but what if it's all "just" social anxiety. She is highly strung and intense and was an incredibly high needs baby. She doesn't seem fussed about the appointment so just want to compose myself, remain open-minded and get the correct outcome. Whether or not she is autistic doesn't matter, I suppose, as she is helped by the strategies (giving information / time to prepare for changes, using fidget toys / headphones / ear defenders).

The process varies area to area. They will ask for a history - pregnancy, developmental milestones, educational history, about family, difficulties DD has had/is having… Things like ADOS &/or ADI-R may be undertaken, if they haven’t already.

Out of interest, why do they ask about pregnancy?

A developmental history often covers pregnancy in case there were relevant issues that could lead to long-term medical conditions/difficulties that may explain, contribute to or exacerbate the child’s difficulties.

We had a 3 1/2 hour developmental history discussion - was hard to remember everything, so worth going back and maybe seeing if you can work out things like when first spoke, walked etc, anything about the way they played when they were small + how they played with other kids before hand. For example, we had forgotten that ours loved lego but would really just stack the blocks up in coloured towers rather than "play" with them etc. Then DS had a 1 1/2 hour session on his own where they chatted, looked at some stories, and ran through the series of questions and tests they do.

Your DD sounds like our DS, who just turned 12 and was just diagnosed a few weeks ago. He did fine at primary, is very high achieving academically, was in the school play etc and was a very fussy high needs baby (turned out that was the sensory stuff). The move to a big, noisy secondary, combined with a house move and the death of a much loved grandparent all within a 4 month period was all just too much, and we saw a massive spike in anxiety, crying, being clingy and exhibiting separation anxiety etc. For us the diagnosis has been massively helpful as so much of my stress was trying to understand why he as struggling so much, and why things were not getting easier despite being in school every day. I should also say it has been really helpful for him too - he was struggling with why he felt the way he did, why he seemed to be different to his peers, and now he knows he is just wired differently (I like the "iOS in a PC world" analogy - I am of the age to remember how annoying it was when you had a Mac to be unable to open the PC document someone sent you...There is nothing wrong with Apple - indeed, they have many unique advantages, but the world is designed around PCs and so sometimes you need patches or workarounds to get things to load) and he is embracing that.

Thank you so much for the replies, especially @usernamebore 💗 The appointment will be approx 1 hour, so I'm not sure what they'll have time for. I have filled out a couple of mammoth forms, as has primary SENCo, so not sure whether this will be the first of many or whether this is "the" appointment.

Off the back of some posts here I have been reflecting on how she play(s), games always have revolved around precise reenactment of TV episodes or things like Schools, where there is no actual imaginative play, but lots of list making and writing of registers in alphabetical order. She has told me she doesn't enjoy reading books unless she's seen the film as "I'm scared I'll imagine the characters wrong." In Year 2 and 3 she ate her lunch daily on her own in the classroom as she found the dinner hall smelly and noisy. Definitely lots that could be something or could be just her way.

Daughter's description of it was "they asked me loads of stuff... it was annoying"
(You could just see her giving it 1 star on Trip Advisor if she could)

Generally at some point they're going to want a developmental history - from DD2's assessment and my own - going right back to pregnancy, delivery and if there were any concerns/prematurity etc... age some milestones were hit if you can remember this (god I felt like a crap parent that DD2 was the second child where you remember so much less) etc. Felt quite like I wasn't giving them the information they wanted - which was frustrating and the ASD part of my brain was internally shouting that they needed to ask better fucking questions then (but I stayed quiet).

ADOS assessment (if that's what they use) is a whole mix of annoying questions, and a few tasks which I found really fucking irritating. I won't go into too much detail because they do try to guard it so people can't prepare and try to second-guess, but I couldn't go in with DD2 for hers, and she was about 9 at the time and was utterly fine - was in there about an hour and a bit and came out with the scathing review described above.

@usernamebore I sat on a training once where someone was trying to use the Betamax in a VHS world analogy... it wasn't working well with a bunch of Netflix generation young 'uns!