to ask for your experience of initial appt regarding asd diagnosis

[hopelesslydemoted]

DD is 9 and after a long wait we filled in a load of questionnaires that were sent to us a few weeks ago. in the letter it said she has reached the top of the waiting list to be considered for a referral for diagnosis.

we got a voicemail yesterday offering us an appointment for this evening. I was just wondering what I would expect from this appt?

as far as I can tell she isn't going through the diagnosis process yet but to see if they will refer her for diagnosis? im a bit worried I will have to go into detail about her behaviour while she is present which I don't think is a good thing as I wont feel comfortable being completely open.

sorry , have posted on SN topic but was hoping for some replies before we go later

Whilst my DS was assessed I was in another room talking to paediatrician. I think they expect you to need to say some things on private.

We did the whole thing together as a family. It may feel a bit uncomfortable but better that than your child wondering what you said about them behind their backs. Also, I was able to step in when he lied. He masks very heavily, so tried to make out that he had strong friendships. I had to point out he didn't and that at home he was unhappy about this. It all helped, long term. Getting assessed and diagnosed is stressful for the child but the support that follows it does make a difference.

Thank you. I don't think this is the actually diagnosis appointment from what I gather from letter. I know she worries so I'd just like to have an idea of what will happen

I think it might depend on how much information they've received prior to the appointment. I had gone to town on her initial application form, so they had a lot of information. That and her presentation at the meeting was enough to put her straight on the diagnostic pathway. If they have less information, etc., or a parent appears less sure about whether they want assessment, they might recommend further appointments before committing to the diagnostic process.

Thank you. I did put a lot of detail on the forms but they'll likely not find schools much help as she's always been the perfect student, no problems.

She also doesnt appear to have any obvious behaviors to look at her which might make it more difficult, although I'm sure there are things they know to look for that I wouldn't think anything of

DD2 reached the top of the list when she was just transitioning between schools. Her secondary school had known her about 3 weeks when they were sent the questionnaire. At school she's extremely quiet (barely talks) and a pretty much model pupil.

I thought she'd done quite well at the initial appointment with eye contact, etc. The person who saw us chuckled and said she had done a perfect example of 'looking-but-not-looking' - she'd shifted herself in the seat so she could look over his shoulder, because she didn't want to be rude.

The assessment process is very thorough. They even picked up that DD2 used a particular (unusual) word 3 times when talking about a book they looked at together.

Personally I found that appointment a bit of an anti climax. I think because we had waited over 3 years before they would even see us so by then I was getting a bit desperate. The consultant asked us a load of questions about his birth and medical history and went over all the things we had said about in the questionnaire they had sent. The Dr said "hmm" a lot and said she would send the questionnaire to the preschool and would see us again in 6 months. A year later we are no further forward really.

It's a long time ago but I remember them basically asking a lot of questions whilst keeping half an eye on how DS played with the toys in the room (or, more accurately, with the examination table). We hadn't filled in the questionnaire I don't think at that point (though I may be misremembering).

I think it can help (at 9) to ask your child the question. The man asked me if DD2 was in a park and a new child approached to play, how would she react? I said 'well I'm fairly sure I know, but why don't we ask DD2?' When I repeated the question to her, she said "Um...nah." I clarified with her 'does that mean you wouldn't want to play?' and she said "Well it's just not happening, so no." The man found it quite funny and asked to directly quote her for his form.

I had the same issue with my dd (then aged 8). I wanted to say things that it would be best if she didn’t hear. I spoke to the nurses when I got there and they said it would be fine for her to stay in the waiting room with the toys if I wanted to say anything private. As it turned out, it was a non issue as she had a meltdown about going into the doctor’s room (one of her many irrational fears is doctors) so she was in the waiting room for the whole thing.

They will ask all about her history, when she started walking/talking/all other developmental milestones...so If like me you are crap at remembering all that stuff and maybe have it written down somewhere in a baby book then have a look before you go.

At our first CAMHS assessment a SALT assessed DS in a seperate room whilst the Psychologist asked us questions from his birth, milestones, how he was at home and at school, his diet, friendships and our family set up.

We had waited for two and a half years from referral so they already had his SALT, OP, school questionaires there. Iirc, it took around two hours in total and we were given his diagnosis then (Aspergers). I think it helped having lots of evidence as DS is very high functioning and masks very well, like a pp's daughter he gives the impression of 'giving good eye contact' but actually if you watch carefully he will move his position slightly so he is looking over your shoulder.

It took a further three months for his assessment report to come through and we were discharged.

Should say 'at our first and only CAMHS appointment'

I think all areas do things differently so you won't really know what to expect from the replies here.
For us, after all the form filling, we got an initial appointment at CAMHS after around a 3 month wait.
The appointment was about 1 and a half hours long where the doctor just spoke to me and DD about things like friendships, school behaviour, sleeping, eating habits etc.
To be honest I didn't like him. I found him patronising and he very much was going through the motions. However, at the end of the meeting he did confirm he would be referring DD to the ADHD clinic for diagnosis which is exactly what I wanted as we were there for ADHD rather than ASD.
I let DD completely be herself during the meeting rather than asking her repeatedly to sit still, not interrupt, not to grab hold of the grumpy doctor and drag him across the room to force him to look at the rabbit that was on the grass outside the window, no matter how much he protested that he sees lots of rabbits and didn't want to get up to look at this one 😂 etc. I'm not sure if that's what others do but I wanted the doctor to see her natural behaviour rather than trying to reign her in at all (not that attempting reigning her in actually works at all).
The wait for the ADHD clinic was then another 9 months. It was at that appointment we saw a very nice and understand ADHD specialist doctor and got the formal diagnosis. We see that specialist doctor now for all follow ups.