ASD assessment for 12-year-old - what will they ask us parents?

[monkeypuzzled]

Hi! We have a (private) ASD assessment coming up for our 12-year-old, who was given a working diagnosis of ASD over five years ago - we're going private to get this confirmed one way or the other, as we've been left in limbo on the NHS waiting list. So we have some experience of the assessment process and remember answering a lot of questions about our child's developmental history. Trouble is, we can't remember much of what was asked and obviously the baby/toddler years are a distant memory at this point! Is there anyone here who's had an assessment recently for a child of a similar age who can point me in the right direction as to what information I need to dredge up? I've gone back to look at some old videos, but I don't have many from my pre-iphone era, so the age of three and under is unfortunately a bit harder to remember! I've got some old nursery and pre-school reports and things, so I will go through those to see what might help, and I have a book somewhere with notes I started keeping from about 2-3 years old. I remember being asked about pointing and language at the first assessment, so I've been looking out for those to refresh my (terrible) memory - what other areas are they likely they ask us about? We've waited ages for this, and it's costing a small fortune, so I want to make sure we're fully prepared. Also, any advice on what I can say to my son to "prep" him for his part of the assessment - does it tend to be tasks at this age, or mostly questions? Obviously I won't tell him what he'll be asked to do, but I want to just give him some sense of what to expect - all he knows so far is that we'll be with one psychologist while he's with another. Any pointers would be much appreciated!

Think about things like language issues (including things like speaking very fast/flat tone), socialising issues, nursery, school, any sensory differences/rituals, gestures/nodding/shaking head, role play/imaginative play, toilet training. They may also ask about developmental milestones e.g. walking/talking.

Don’t prepare DS beyond telling him the assessment will be happening/why/where/when/who with etc. If it is the ADOS the HCP needs to see DS’s true reactions without him knowing beforehand what they will do/ask. If it is the ADOS it will be a mixture of tasks and talking.

Hi there, we have just been through this process.

For our part of the assessment it was lots of developmental questions, mainly relating to milestones such as speech and things like walking, potty training, pointing and playing. They were mainly interested in headline events and understanding that we couldn't always remember tiny details from this time. The diagnosis can only be given if it is felt autism was always present, so they need to be able to demonstrate this. More focus was given to the present day or recent past though once those headline developmental questions had been asked.

In terms of the ADOS, we just told our child that it would be some questions relating to how they feel, friends etc but also some exercises and tasks, but that they would be low demand and may even be fun. This was enough to set my child's mind at rest. Hope that helps!

Thank you both, that's really helpful - things like toilet training hadn't even entered my head as a possible area we'd be asked about! Good to know inlotsofknots that it was mostly headline events for the earlier years at your child's assessment - I'm dreading not being able to remember the details, so that's really reassuring :)

inlotsofknots
In terms of the ADOS, we just told our child that it would be some questions relating to how they feel, friends etc but also some exercises and tasks, but that they would be low demand and may even be fun. This was enough to set my child's mind at rest. Hope that helps!

This is a really good explanation, thank you - we just want to have enough of a description that he won't be too anxious about it, but without giving too much detail. Headfirstintothewild Absolutely, I wouldn't want to prepare him in any way for the actual assessment (although I wouldn't be surprised if he can remember some from his earlier assessment!) as I think he'd end up getting into his own head about what he's "supposed to" do, so "a mixture of tasks and talking" seems like a useful description for him :)

Thanks again!

Milestones are the main thing they ask (poor DD2 when I had "second child syndrome" and couldn't remember some of them)!

ADOS - DD2 was just really fucked off that they "kept asking me questions and they were boring"