DS has ASD assessment in the morning - nervous!

[TwentinQuarantino]

Ds is 11 and has his ASD assessment via phone in the morning. A moment I've been waiting for, for so so long after years of not being taken seriously. But now I can't help feeling nervous. We have had zero support from school - they feel he is totally fine - so I feel like I'm the only voice DS has, but what if it's not enough and they write him off. I KNOW he needs support, I KNOW there is something there. I just have to communicate that to them. I guess I don't want to fail him anyone know what kind of questions will be asked? Just so I can mentally prepare.

[earlydoors42]

Good luck today! Do you have a list of things you want to get across to them? Sorry I have no insight about the process but a written list might help.

[Sirzy]

I always wrote lists of key points and questions so I didn’t forget anything.

Is it a diagnosis appointment or just an initial appointment?

Good luck

[RippleEffects]

With mine and their initial assessment meetings (back when we met in person) I used to write everything down I could think of that was a flash point. If you can think of five - ten examples of things that make everyday life a stress.

If you're focusing on school support and see that as a problem think why is it a problem - what has happened to your DS that differentiates his ability to cope from his peer group, try to have a few examples.

Once I've written it all out long hand, I then write myself a prompt card/ post it with just a sentence to remind me of each example so I can fast skim read it when asked for examples.

[redpandaalert]

Best of luck. We had the same when DS was 10 school adamant nothing wrong. DS very intelligent but very autistic (on the ADOS score) intelligence makes three able to mask more. I always knew something was different about him.

[MinimumChips]

Good luck! My dad is 10, diagnosed with ASD level 2 at 4. I just yesterday found the notes I prepared for his assessment - five pages of bullet points organised by category (social communication, repetitive behaviours, rituals, routines, obsessions over the year, plus photos of these!!) and positioned against each of the diagnostic criteria! I had forgotten then stress of that time but it all came back to me. Strongly agree that having your concerns written out in simple dot points with multiple specific clear examples for each of them is helpful, and mapping them against the diagnostic criteria (if time allows) will help. You can then refer to the notes if you need to give example of your sons behaviour.

[kitschplease]

Good luck - we had ours this week and got a diagnosis. It's very intense and they talk through all the evidence submitted to make sure the professionals all agree with whether or not the diagnostic criteria are being met. Brace yourself too for crappy connection - I don't think the nhs version of Teams is that great, but could have been my Wi-Fi!

[vickibee]

Similar here, our ds was diagnosed age 9, again school didn’t support our fears, highly intelligent and good at masking. After the ds the HT said I would never have though it of him and pointed out that he wasn’t eligible for support just because he had a dx. This is why I pursued a EHCP, now he gets the help he needs.
Best of luck, will your ds engage with the meeting , our ds would just refuse if it was online.

[TwentinQuarantino]

Thank you for all the responses! I do have all the points written down and added a few more which just came to me. Recovering from Coronavirus and the brain fog is pretty bad.

@Sirzy it's his first appointment so I'm guessing diagnosis is way off yet? We have been referred by the psychiatrist due to his extreme anxiety during lockdown. Thankfully that has now more or less resolved but she was the first person to listen to my concerns about possible AS without being dismissive.

@Kitschplease yes connection can be terrible! This appointment will be over the phone and not video so hopefully won't be too bad.

@Vickibee DS will speak to them if absolutely necessary but I know he won't want to.

DS has always been very intelligent and after relocating he joined this school in year 3 (now year 6), he started off as 'one of the brightest kids with Gifted and Talented being a possibility' (teacher's words), to 'he is below average' the same year. (I should add this teacher is also the school Senco, who wrote to the psychiatrist that DS is totally fine and is academically below average. When DS had vocal tics in year 3 and getting bullied I brought it to her attention and her response was "what tics").
Then year 4 the class teacher was on maternity leave most of the year so the constant stream of supplies had him extremely unsettled and from speaking to other parents their kids also suffered. DS lost all motivation for school, for homework as it was never marked etc. Then year 5 and currently year 6 Corona happened and no proper work has been iasued online until now. In September when DS went back to school I spoke to the pastoral worker about his anxiety (he was still under the psychiatrist at the time) and to see whether her out of class sessions could help him. So she asked DS how he felt. He replied he is fine and that was the end of that. She felt he doesn't need support from that one very brief conversation. Sorry just had to rant as I'm so annoyed with the school.

[Punxsutawney]

Good luck today. Try not to worry too much, good you have some notes written.

I have a 16 old that has masked for nearly all of his time in education. I approached the school when he was year 9, to be told he was fine but they begrudgingly referred him. He got an ASD diagnosis in year 11 age 15. Unfortunately this late diagnosis and lack of support has caused significant mental health difficulties.

So he's gone from school saying he is 'fine' in year 9 to having an EHCP and needing lots of support in year 12.

[vickibee]

@TwentinQuarantino
Pls let us know how it went

[TwentinQuarantino]

@Punxsutawney I'm glad your DS has finally got his diagnosis and some support in place. It's so frustrating isn't it to be ignored and dismissed repeatedly when we as parents know our dc best and aware that there is something which should be considered.

I had the phone call assessment, the practitioner has sent a questionnaire and we've been told to wait for the development assessmenf next. She seemed mainly fixated on DS's intrusive thoughts about self harming and harming us, although it's no longer an issue, and my difficult labour with latest DC.