Unsure on Diagnosis

[Bitstuck1]

Hi,
I am just trying to get the education placement right for my DS.

He was diagnosed November 2024 with ASD at 4.5 years, on the phonecall confirming this, the lady said he had strong demand avoidance and when I mentioned PDA (as I was thinking along that area and school did later say they had thought of that) she said I was going to say look along the lines of that and get advice from the PDA website, or something of that effect.
So we have been parenting him in a style with regard to that, his demand avoidance has increased with age and more demands at school, he is scared so can't do things, doesn't want to, will not budge on the idea of doing something unless he wants to. Scared to brush his teeth, put clothes on etc and does make excuses for not being able to do stuff, and crawl somewhere etc to slow things down. If he is pushed on demands, eating dinner etc, he will just shout and get violent and does often say I will do it when I am ready and when I want to, which is sometimes never.

The exact wording on his assessment didnt bother us, but now, LA obviously refusing special school so going to tribunal.

But without having it reported he is ASD with PDA profile (or not) then his EHCp and school he requires won't reflect his needs accurately. And won't be taken as seriously by the LA and autism can (in their eyes) be managed in mainstream.

I have emailed the private company that diagnosed him, but Im not sure they will come back to me now it was done, dusted and paid for over a year ago and I can't get through on the phone.

What could I do in these circumstances? Would they look at their assessment again, would he need to be reassessed now he is older or is there some other profession that can look at the potential PDA part of him, and see if it is there ...or not, just so we can get the evidence correct. I do know they can't diagnose PDA but his assessment currently says diagnosed with ASD and then on another paragraph saying some demand avoidance.
Private EP said very strong demand avoidance and highly non compliant behaviour which has been noted in evidence. Does it matter if we even get a diagnosis of ASD with a PDA profile for his ehcp. Does that matter to the tribunal or his education placement? or his future needs.
Thanks for any comments on this, theres so many areas of all this that's so confusing then something else comes along you need to sort out.

Another thing I am confused a little on, if he did have PDA profile then would they have automatically just wrote it on the assessment report then.
Or was he still quite young at 4.5 years old to know for sure.

EHCPs are based on needs, not diagnosis. Some with autism will be in MS, some in SS, and some will have other arrangements. This applies whether the CYP has a PDA profile or not.

Because PDA is not in the DSM/ICD, most HCPs will not include with PDA profile in their diagnostic phrasing. Some will, as you have, then go on to mention demand avoidance, though.

If you have the ASD assessment and EP report covering demand avoidance you have evidence of demand avoidance, that can be used to propose amendments to B of the EHCP.

Thanks, its just all a worry that you will be missing an important piece of information when it comes to the crunch. That settles my mind, thank you

Some of the difficulties you describe including brushing teeth and dressing could also be related to sensory needs.
Has he had an assessment for SPD by a specialist OT? Not all OTs are qualified to do this.
Do school incorporate and Sensory Circuits or similar into his day?
As PP has said EHCPs are needs based rather than diagnosis.
I know it’s a lot to negotiate and as you say always something new to address or fight for. Have you got support and advice from a local parents group or SEN parent advice service?

Hi. Thanks for your reply. He has had an OT assessment, got SPD and has had a Sensory Diet created for home and school.
School do follow it, I suppose as best they can in mainstream. We do it at home, but he does refuse it alot, so we sneak it in with gameplay, here and there.
He refuses other things, like going out to somewhere fun he wants to go, tidying etc. Its typical I should mention the sensory ones :-)
These issues are always just a muddle of everything, its hard to pick apart, when you have transitioning problems aswell. Which bits belong in which category or should they all just be bundled together.
Its hard to understand.
I dont know of any SEN parent advice, the charity ones are always so busy, I normally just Google or ask an acquaintance that has a teenage child and much further down the road than me.

Does the EHCP include any ongoing OT provision, direct and indirect?

It includes the OT sensory diet at school to be provided by the teachers throughout the day, as it does not specify it has to be done by an OT thereself. As said by the LA.

Im trying to get him into a special school (tribunal) that has OT onsite as he really needs it.
I dont know where they think teachers/TAs get the time to do sensory work with kids throughout the day amongst everything else. But it does give them another thing to oppose.

TA time can be allocated to sensory work, but it needs to be detailed, specified and quantified in F to ensure there is time allocated for it.

As well as a sensory diet delivered by school staff, DS also needs ongoing, direct and indirect, OT provision. Even in SS with an OT on-site, the provison still needs to be in F to ensure DS receives it.

Are you appealing B&F as well as I? You should. Have you considered an independent OT assessment?

Yeah it is in F and they do it daily, its written into his daily timetable, morning, lunch, afternoon and movement breaks every 10 minutes I think it is.
We are appealing b, f and I and we did use an independent OT. I am going to pay for an 8 week course again in the summer and we have managed to get 7 weeks OT from a charity.
But it would be very helpful to get it from school by qualified OT.

If the provision is detailed, specified and quantified in F, you don’t need to worry about how the school staff will have time to deliver it.

Even in SS, you will need the wording in F to be explicit about direct and indirect OT provision from an OT. Provision won’t automatically be delivered by an OT even in SS.