Told not to work on an issue till after ASD assessment?!

[MerryCouthyMows]

DS3 (24mo) has an assessment for ASD pending in May.

One issue he has is that he walks 'through' people. Adults, older DC's, babies, it's as if he doesnt 'see' them unless he wants to. It's causing me issues at home, as I have 3 older DC's, 2 of whom are also on the spectrum, and DD & DS2 have personal space issues and sensory issues. DD in particular goes into meltdown and lashes out when he does it to her.

DS3 goes to a sensory needs group in the CDC that forms part of the pre-assessment phase here. I asked the people that run it if they had any suggestions as to how I could work on this issue with him.

They came back to me, after speaking with the OT, and I was told "The OT advises waiting until after the ADOS, as it will help with the diagnosis, it can show certain patterns of behaviour."

So, do I leave it until May, when it is causing serious issues at home (an almost 15yo, 5ft6 girl is NOT easy to control when in meltdown over personal space issues...), in order to be more likely to GET the diagnosis I know he needs?

Or do I work on it now, to try to fix the issue at home, possibly hiding one of his 'big' issues before he gets assessed, and maybe losing out on a diagnosis because I've worked on it?!

AAARRRGGHHH!

Nobody gives you a parenting book that tells you how to deal with things like this!

And why is it that professionals involved only see the child they are involved with, and nobody EVER uses some joined up thinking and looks at the whole family when there are multiple DC's with SN's?!

I doubt that you would be able to 'fix' the problem to such an extent that it is not noticeable in that timeframe! Just do what you need to to allow home like to run as smoothly as it can.

I would work on it using methods which can work with children with ASD eg visuals, signing, simple language.

Keep notes on how he responds. I showed that I had had results with visual cues for Dd3 and I told the proffs that methods used traditionally for people with ASD were working for her when other things did not.

I felt that they took notice.

You cant carry on until May not doing anything, he is in danger of getting flattened.

I also agree with polter that the CDC people should keep records of what he is like for the assessments and they should be putting their feelings about your Ds on paper. I would check that they are.

Good luck

Could you film ds3 in a bid to catch this behaviour, preferably with DDs help if she is able to tolerate the walking through thing for a specific reason? Then use stratagies as Ineed suggests.

Don't leave it. What kind of stupid advice is that? I'd even go so far as to say that advice was unethical.

Has this behaviour been recorded?

Dx iirc is about whether there have been certain symptoms as well as current ones.

Take videos of before, during and after any useful interventions and then just get on with it. Diagnosis takes into account history.

Given the propensity of the NHS towards wait and see, with regards to a firm diagnosis, and my own experience of it taking FOUR years to get a definitive diagnosis (DS was 8, and would have been left non-verbal for life if I waited!) I'd ignore such utter stupidity.

You have to live with the results of NOT intervening while the person who gave you this advice will at most have to have another custard cream and a cup of tea at some "meeting". Agree with Star on her unethical comment.

I will film him at home, but tbh it is more apparent in a 'group' situation but I can't film at his sensory needs group because there are other people's DC's there. Which is a PITA, as it's the only group situation he can attend due to his allergies.

He is starting to show signs of obsessions now too - absolutely obsessed with pirates. It's not just a 'like', almost everything he interacts with is somehow connected to pirates. He plays with hardly anything bar his pirate related toys, his only pretend play at all (only started after he turned 2, before that there was none at all) is wearing a pirate hat and saying raaaaar, or putting his pirates in the boat and saying raaaaar. He won't engage with anything but pirates now.

And I thought it was a bit unethical too - I was only asking for suggestions for ACTUAL HELP with this issue - which is apparent to the people that run the sensory needs group, the HV, other parents as well as me!

I have notes spanning back to when he was 4-6 months old with things id noticed.

I had early suspicions even back then - he would stim by circling his legs over and over when in the bouncy chair, but for aaaaages, and would scream if you took him out and stop instantly when you put him back in to carry on.

He wouldn't make eye contact or copy me when I stuck my tongue out etc.

He just DIDN'T (and still doesn't) sleep.

Once he could roll, if all of the family was in the front room with him, he would roll under his bouncy chair where it was a small space, or roll into the bottom shelf of the TV unit and stay there for ages.

It's hard to explain, but even very young abhors with Autistic behaviours can be noticeable - I have a close friend with a baby just 4 weeks younger than mine, and it really was obvious by 6 months just how different my DS3 was developmentally!

Video at baseline, do something quite specific, and collect data to record the effect of what you're doing.
then stop a bit too early, watch the issue come back, start intervening again, watch it go again, recording all the while

It's called a crossover trial

Thing is, none of them will actually OFFER any suggestions on how I get him to stop walking 'through' other people as if they're not there, so how CAN I work on it if they won't give me any strategies?!

I just wanted some HELP from them, and they won't give it in case it 'clouds the picture' FFS!

Has anyone here got any suggestions?

HV has seen it with her own eyes too. Repeatedly. With her own legs. As if they weren't there.

DD is like this too, even at 15, but to a lesser extent. I guess it might just be a loooong time since she was 2yo, and I may be a bit hazy on how bad she was...