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Child mental health

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Original poster

What to expect at an autism assessment next week

14 replies

Rainbowstone · 11/08/2023 22:42

Hello, after years of waiting on the CAHMS waiting list, we finally have an autism assessment booked for Monday. My DS (15) started showing autistic behaviour and OCD contamination behaviours more overtly age 12 and it has been very challenging, particularly this year and as a family we are broken. He has recently become delusional and is doing badly at school.
Please could anyone advise how I should approach the assessment next week, the sort of questions I should be asking, the information I should be giving (although both us and the school have filled in the bundles of forms and submitted) the support I should be looking for and anything else that may be helpful. DS will be very resistant and I haven’t slept in weeks through dreading it and feel sick, I think he will take it very badly but we desperately need help to support him. Thanks

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Original poster

Rainbowstone · 12/08/2023 07:43

Anyone? Could really do with some MN wisdom, thank you.

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Chrysanthemum5 · 12/08/2023 07:52

When we had DDs assessment it was more then asking us questions about what she had been like as a baby and a child. I found it hard to remember as DD is 15 and they were asking things like 'if she wanted something would she point at it or use your hand to point'; 'when she was three if you met one of your friends at a park - someone she didn't really know but knew was your friend- would she say hello'.

I would say that CAMHS insisted DD was there for the first half and that was a mistake as they didn't talk to her but instead she sat there listening to questions about her.

DD doesn't accept her diagnosis at all which is hard. I would say apply for disabled living allowance as soon as possible. I waited almost a year as I felt we were coping ok but in reality it's money for her which can pay for things to help her.

Sunsnet · 12/08/2023 07:52

A few games maybe to see how you interact. They might then take him off to interview him while they ask you questions about pregnancy and early development.

Original poster

Rainbowstone · 12/08/2023 08:05

Thank you both. I have a 1.5 hours 1:1 online with the assessor first without DS and then in the afternoon we physically go into their offices with DS and he is involved. I’m genuinely concerned that he will go awol at lunchtime and not sure how we manage this. I can’t remember a lot of when he was very little so will try with DH to recall over the weekend.

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Original poster

Rainbowstone · 12/08/2023 08:06

@Chrysanthemum5 i hadn’t been aware of the disability allowance. What does it cover and how can you be eligible? DS is highly likely to reject his diagnosis too.

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Longwhiskers · 12/08/2023 08:12

We went through this with my son recently. Yes they focus on the age around 2-4 and ask you lots of questions about the child’s development and what you observed - they hadn’t warned us about this! So I was caught on the hoof a bit but fortunately had his baby book upstairs so ran and got it and that provided first proper word (is not mama dada but first proper word they said and connected it to something). That part took nearly two hrs with over 90 questions. Luckily in order to answer their paper questionnaire I had already looked back through old emails I’d sent to my mum on my son’s development so I had some of it to mind.

ours looked like this - preliminary meeting all three of us, they also spent about 15 mins with my son alone just chatting and putting him at ease.

he then came back for the ADOS 2 test, I don’t know how they do it with a teenager but my son had two specialists with him, one administrating and one observing (I think).

some weeks later we had this long 90 question interview thing by - again a bit fuzzy - an Ed pysch. That was over zoom.

in between there were forms to fill in and stuff sent to the school.

Finally we went back in for the debrief and diagnosis. Hope that helps. This was in the private system.

coreas · 12/08/2023 08:27

We had several meetings when both DC were going through assessment, it's wasn't done in one session. Unless they have explicitly told you that it will take place all on one day I would be prepared for it not to. In fact both my DC had appointments months apart - DD waited over a year for her ADOS. It was the worst experience.

Original poster

Rainbowstone · 12/08/2023 08:29

@Longwhiskers thank you for taking the time to respond, very helpful. Will spend some time today trying to recall the baby years, I remember that he hated lying down in his pram, didn’t speak til nearly 2, hated loud noises like hairdryers and had attachment issues when he started nursery and school. Looking back, autism should have been obvious but we were first time parents and clueless and now feel that we have failed him by not getting an assessment til his mid teens 😞

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coreas · 12/08/2023 08:30

Ignore me, I missed the part where you have 2 booked sessions in the same day

It helped me to keep notes of things approaching the appointments juts to get things fresh in my mind so when a question was asked I wasn't struggling to find an answer (I'm also autistic and have ADHD so find the whole process of being expected to produce an answer in 'normal' time very hard)

Original poster

Rainbowstone · 12/08/2023 08:32

No worries, appreciate your input. I think CAHMS must have found some funding from somewhere as they have funded a private company called Seven Care to undertake the assessment - we only got 3 weeks notice after being on the list for years. Hope it isn’t a drawn out process…

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xyz111 · 12/08/2023 08:41

My son had his assessment at 5, so not sure how different it'll be to an older child. She asked him to play with some blocks, whilst asked me questions, but she was always kind of keeping at eye on what he was doing, how he was interacting. Then she asked him to do some tasks, and asked him to describe a picture book what the story was. It was all very relaxed, nothing to be worried about.

Original poster

Rainbowstone · 12/08/2023 08:48

Thank you @xyz111. Yes not sure how they will approach a teen diagnosis, he will be very resistant and feel so worried that he won’t engage at all. Almost tempted to bribe him with money to attend and engage, whatever it takes, but not sure this would make it worse.

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motherofawhirlwind · 12/08/2023 09:55

My DD was 15 as well. Remembering the toddler years was hard for us as so long ago and she found the "play" based session a bit weird as it was reading a really simple story book aloud snd playing with some objects / making a story up for them type things, but I asked her to trust in the process and she was dx.

We'd had no idea or inkling before an online GP had suggested it from a 10 minute video call! But makes so much sense now...

Good luck

Chrysanthemum5 · 12/08/2023 13:59

I don't want to be negative but when DD didn't accept her diagnosis they simply told me they'd never heard of that before. Which I know isn't true! So they were not much use to us really and DD currently isn't attending school as it got too much for her. I hope it is easier for you.

You can complete the forms for dla without the official diagnosis but it may be easier to wait h til you get it since your assessment is so soon. Form is just lots of questions but just answer them being really honest about the impact on you and your son. It takes months to get a decision but they back date it to the application date.

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