DD 14 has her ASD assessment Fri . What to expect ?

[Tinkerbellexxx]

Just that really . We've waited 16 months. The pre assessment form was huge . It said to expect 90 mins to 2 hours but the link the sent for info doesn't work.
Just interested to know others experience if you wouldn't mind sharing?
DD will be an utter delight because she masks so well .... she even has an American accent and we live in Cheshire ish ! Will they be able to somehow tell do you think .
I'd like to talk her through what will happen.
TIA

Following because my 16 year old is hopefully being assessed soon. He's been on the waiting list for just over 2 years. Not counting the 12 years before he got on the waiting list of me being told he is too young/not severe enough/has friends/too old to be assessed. Part of me wants him to not get upset when they as him questions and part of me hopes he will have a screaming meltdown so they know how bad it can be.

When we went through it, there were a few appointments. It was a 2 hour appointment to take down history, a 'chat' with a SaLT which took about an hour, an ADOS assessment which was another hour ish. They were all on different days.

And yes, if your daughter has autism, they'll be able to tell. We were amazed at the things they picked up on. They are used to seeing children who are experts at masking.

IIRC having an unexplained accent can be a symptom of autism

Albeit 11 years ago, our appointment they didn't speak to my child, spoke at length with myself & ex husband. Daughter playing with toys in the corner, they observed she put them all in colour & height order.
Diagnosis received one day later.

Ours was online. 2 appointments alongside each other. 1 with me, 1 with DD. Dd didn't really engage with the appointment-she refused to speak but did nod. Only time she spoke was when her special interest was bought up. Appt didn't last long.
Mine was 3 hours long. Long history going back to her being a newborn.
Diagnosis same day.

At ours they insisted DD was present and then made us discuss everything that she had done that made us suspect autism. Then finished by saying 'but there are positives about DD too so what is something she's good at'.

Honestly it devastated DD and I wish I'd stopped it but we were desperate for help and they insisted it was required. Just warning in case you experience the same

Thanks everyone some really helpful heads up .
Yes I did wonder how it be if we had to be so honest in front of DD because she will get upset. Not visibly in front of others but approval is a big one for DD and she blames herself for things. It will be difficult for her but she is engaged and wants to help herself which is great.
I understand now it could be a one off with a yes or no outcome quite soon or it may be a few appointments .
Either way it won't make much difference imo
It's support we all need to help her not necessarily a diagnosis.
Thank you everyone

Your DD will probably have the ADOS assessment. There will be some activities to do but at her age will likely also include some conversation and usually this is done without you present. You will have a separate interview (sometimes I think these are done over the phone) all about her developmental history. It might be useful to have notes with you of things from her younger years, especially pre-school. Looking at photos might jog your memory.

@lavenderlou thank you.
It's face to face this Friday morning and they said to allow 2 hours.
Do you think it would be useful to sit down this evening as a family and have a catch up / make some notes ?

Dd could maybe list anything she feels is relevant and us the same? She's fairly open and wants to engage.

I would say have a conversation with your DD about some things she might like to bring up but maybe don't involve her with conversations about things when she was younger in case she finds it upsetting? Maybe go through with the other parent (if there is one).

When DD2 had her ADOS I waited outside and her comment was "they talked to me lots - it was boring". I've personally been through the ADOS as well as an adult and found it quite emotionally draining to be honest - felt mentally wiped out afterwards. It's nothing terrifying - things like a couple of different tasks, a storybook to talk through - I won't say more than that because they don't like people going in being able to try to second-guess what they'll be asked to do.

ADI-R is the developmental questionnaire history which is a long and painfully detailed conversation - that one's aimed at parents more.

If it's the ADOS, then I was there when my 13yo son had his a few years ago (sitting at the back of the room, not contributing - I was just there to confirm whether his behaviour during the ADOS was "normal for him.")

I was actually amazed how good the ADOS was for picking out the things he couldn't do, or approached differently. I don't remember much of it, but there were things like showing him a picture and asking him to describe it. Over and over again I found myself thinking, "well, it's no good asking him that, he doesn't think in that way." I'd been sceptical about how good a scientific test there could be for autism, but by the end I was really impressed (and also fully convinced that he would get a diagnosis, because the ADOS was clearly constructed for people like him!).

When my DD had the ADOS, she was 15 and I think did a different version. I wasn't there for it. She was nervous beforehand and I tried to persuade her that this wasn't a "test" where there were any "right" answers. She was tired afterwards and didn't discuss it much. She mentioned that the psychiatrist had asked how she saw her future, and asked why she thought people chose to get married.

Overall the professionals conducting the tests were very friendly and reassuring, and tried to put DS and DD at their ease. There was some "chat" as well as questioning, although I suspect the chat was often just a more open-ended form of assessment.

I also completed questionnaires and had appointments (without the kids) to discuss their early childhoods, in advance of the ADOS assessments.

(Incidentally, they both received diagnoses, although DD masks very well.)

DS was 11 and diagnosed in less than 45 minutes. They spoke to us a bit and got him to act out a few things looking for black and white thinking (which was immediately obvious!). DS is very bright, well behaved and obliging and school made him sound perfect so don't worry too much that they won't see through it! The main thing I think is to hopefully get someone assessing that is very experienced with kids with ASD.

I would say that there is no preparation your child needs to do for the ADOS - they just turn up and have a chat and have a go at the tasks. In fact, I suspect preparation would actually not be a good thing and I wouldn't give them any kind of detailed info in advance, even if you could get it.

For your own interview about their early childhood (assuming you have one), it may help to note down ages at which they hit developmental milestones (their red book may be helpful), anything relevant from past school or pre-school reports, habits or things they liked doing in early years, weaning, food, potty training, any concerns that you or others had about the child at various ages, any concerns which you have now or anything your child feels is an issue. It might help to have a quick read of possible autism symptoms if you haven't already, to see whether you recognise anything relevant (for example, I hadn't realised that sensory issues were an autism thing, and that opened up a whole new range of stuff to flag up).

My daughter talks with a American accent and she’s nearly 4, her preschool teachers try to do different accents with her now to see if she notices the difference but she doesn’t, I’m not sure where she’s got it from she’s not a big tv watcher but she is on the neurological pathway

Thank you so much everyone .
I took someone's advice on here and actually didn't prepare her much. Dd was with a last on her own for just over an an hour and us for 3 hours in another room .
Blimey it was intense .
When we came out DD was in the toilet and her lady said " what a lovely young lady you have raised. It took me about 45 mins to get to the real self but she's masking for sure "
I was completely in awe of how they saw through that because she is a completely convincing delightful young lady in public .
We got a call at 5pm to say she has a comfirmed diagnosis and we have a follow up meeting when we've read through the draft report.
I had no expectations but wow it was still such an emotional day . I feel like we can work with this now and so can DD more importantly .
Thank you again and just wanted to update you after your kind advise x

I am so glad that it went well and you got an appropriate result. I totally agree that it's exhausting!! I do believe that a good professional will see what's going on, even with a lot of masking behaviour. They have the training and the knowledge to get past that.

I wonder how they dig down through the masking

My DD was assessed last year when she was 14. It took three sessions over 3 days 2ish hours each time

Can I ask how your teens reacted to the diagnosis? My 15 yo DS is really upset by it..thinks it's a bad thing and doesn't want to look at any follow up actions, meds, therapy, anything. I'm pretty devastated as it took so long to get too, we went private in the end and it feels like it's backfired. He's doing terribly in school and this was meant to help but it's made things worse. Did anyone else's teen react this way?

My 13yo DS didn't really react at all, as far as I could see. But then he often doesn't seem to react to things. My 15yo DD was quite disturbed/upset/unsettled by it, which I was unprepared for (and therefore quite unsupportive at first) after my son took it in his stride. I found it hard to know what there was that she wanted to discuss, because this was just a fact of life. (I am going to be assessed for autism myself, and will be very surprised if I'm not diagnosed - I don't see this as a bad thing, but it probably didn't help me to give my daughter what she needed at that point!) She wanted to know what it would mean for her, didn't know how to respond or how to view herself, etc. She was already seeing a counsellor and found it helpful to use some sessions to talk about her feelings around the diagnosis.

In both cases the professionals delivering the diagnosis were very helpful in saying how this was a difference rather than an impairment. One compared it to computer operating systems: most people are running on Windows, but some are on Mac; both work well but sometimes it's not easy to move between the two because of compatibility issues. In both cases they made sure their reports highlighted the strengths of DS and DD as well as the things they had more trouble with.

It's not easy, because there is a stigma. I had already told them that there are some people where autism causes them a lot of problems, and others where it causes fewer problems and can also give significant advantages. I highlighted various high achievers who are or were autistic (or thought to have been autistic, in the case of some historical figures). Thunberg, Turing, Newton, etc. Personally I think that for many autistic people, most of the difficulties are actually caused by external factors, because the world and its expectations tend to be set up for the neurotypical majority. Like left-handers were made to write (badly) with their right hand in the past, and even now it's harder to find left-handed scissors etc. But if you let them just be left-handed and supply equal equipment to that available to right-handers, then actually they function equally well.

I realise none of this is probably helpful to you with your son, because he may not want to engage with discussions about it. 15yo boys are very hard to reach even when they don't have autism. Therapy/counselling would probably help, if you can get him to go. Or a book to read with a positive slant - but getting a 15yo boy to read a book isn't always easy either. I'm very sorry you are going through this and I do wish you all the best.

@Rinkko thank you so much for that. You're absolutely right that he won't read a book or really talk to anyone. We've got masses of help available through Early Help and a very supportive school SENCO and counsellor but he's very much not in the headspace to engage. I'm going to try and find some YouTubers maybe who post about it, in the right demographic. That's about the only thing he pays attention to. Thank you for understanding I can't just "make him" do things.

Another thing that the professionals pointed out was that the diagnosis doesn't come with a compulsory badge. People don't know you have it unless you tell them. There are going to be many kids in your DS's school who also have autism (diagnosed and undiagnosed) - he is not the only one by a long chalk. He just probably doesn't know who they are, even though he is pretty certain to know some of them who are in his year.

He is also the same person after the diagnosis that he was before. He just has more information and more knowledge about the things he finds easier than other people and the things he finds more difficult, and why. Over time this knowledge will get more and more useful.

Sorry, cross posted with you @BibbleandSqwauk ! I was just trying to think of any angles that might be helpful in terms of the way your DS thinks about his diagnosis.. But I really do appreciate that it's very very hard to help someone who's not ready to engage. Good luck.