Ados day

[Mousewrapper]

I've been up most since 0415 with 10 year old DS. Today is his Ados assesment and I'm second guessing myself. He is adamant he doesn't want to do it. Adamant he doesn't want to know if he has autism even.
School say a diagnosis will make no difference but when I reached out to GP for support they wanted us to wait for assesment. Early intervention team turned us away because he isn't violent 'enough' and we 'look like we are supporting him well and know his needs'. Of course we do!
Just writing this is because in RL I'm not allowed to be nervous. I have to minimise because 'DS is just DS'. Everybody wants to be so bloody positive. I just want DS to go to bed tonight having not beaten himself up emotionally and physically.

Hi @Mousewrapper

sorry you didn’t get any replies when you posted. How did the assessment go?

We have DD5’s assessment next week and I am in knots over it!

Hi @Thatsnotevenmyusername ,
It went well thank you. After initially refusing to go with the psychologist, while we did a history, DS engaged. When asked he said it was 'ok' afterwards but that's his answer to most things. The actually assesment took around an hour and then ten minutes later they called us in for results. DS was given an ASD diagnosis and a prescription for Circadin.

He was quiet for the rest of the day(very very unusual) but I think it wasn't a surprise to him.

We got signposted to some courses but told that most of the support comes through school. This is disappointing/concerning as even the consultant said that the report school wrote does not match the child in front of him.

Ultimately though I'm glad it's been done. I feel empowered that the strategies we have put into place to support DS are there for a reason and that he/we are not just being difficult. I have to remind myself our parenting didn't cause the difficulties DS has and we have been parenting the child we have. That just looks different to how we parent his sibling.

That was a bit of a waffle. I apologise.

I understand the knots feeling. Before hand I had no idea what I wanted the outcome to be. Does your little one know that she is going/ what the assesment is for?

With each new thing (help from portage, a referral, a diagnosis, some designated 1:1 support, an EHCP, a new school etc) I think that it will be the thing that makes all the difference. I’ve become more realistic as time has gone on but I still get taken in by it. In reality each things helps, and having a diagnosis will help you, but it isn’t a magic bullet. It is still a long fight. Nothing is perfect. It’s hard.

If school doesn’t feel like it’s doing all it should be have you considered looking at getting an EHCP to force appropriate provision?

And yes it’s the knowing that you’re not making it up, that you’re not a bad parent that is most helpful. The feeing that you are justified in asking school for something or parenting in a different way is powerful.

I hope you feel relief from getting his diagnosis, my DD has her ADOS assessment next week and I am feeling very anxious about it. I know that she has autism, the school knows that she has autism, her paediatrician and SLT know she has autism but I’m just so worried about going to the assessment for her to not get a diagnosis, it really is nerve-wracking. DD is only just turned 5 with a potential learning disability, the ed psych has scored her developmental age as below 3 years so she does not have any concept of these assessments, I just tell her we are going for a little check up. She enjoys SLT appointments and we just had our assessment with OT a few days ago (which I am delighted to say they have now offered her 1-1 therapy to help with her fine motor skills) and she had great fun carrying out the OT assessments and says she loves check ups so I feel like she is going to go into the ADOS in fantastic form, be really compliant and they’ll say they have no concerns!!

However that was also my concern with her assessment with the educational psychologist yet she picked up on all of my concerns and then some and has written a fantastic report for DD’s statutory assessment stating the significant amount of support she needs so I feel like I just need to trust in the process!

How have you and DS been since his diagnosis, has it sunk in yet? Were you expecting the diagnosis or did it come as a shock? Is your DS in mainstream school and does he have a statement/ehcp? I hope his diagnosis opens up new pathways of support for him now 💐