Autism pathway assessment(s)

[pigletpie2177]

Hi all,

I'd put something on the primary school thread a few days ago but I can see it's easier to start my own thread. Apologies if I use incorrect terminology as this is still relatively new to me.

DS(5) was referred to the pathway in December after a lot of back and forth which I could fill another thread with! We completed all of our forms (appendix 2 Cambridge questionnaire and parent views) and they were sent by school in January alongside their forms. They also had SALT reports albeit from 18m ago.

Yesterday we had a face to face assessment where DS was in attendance - DH and I have had two previous telephone meetings with paediatrician. The assessment was about 15 minutes in total including height and weight checks. The doctor asked him about the weather and school and friends/family but only for about 10 minutes.

Apparently that's it. The next phase will be panel and we won't be involved at that point. We will have another meeting in 4-6m to discuss any diagnosis.

Surely that's not right? I'd gone along with my level arch folder, trying to manage my expectations but wanting to be prepared. I'm feeling completely baffled that they can make such a big decision based on such limited interaction. Is that normal?

If you read this far, thank you and any guidance very much appreciated!

Did you go through a detailed history in the two calls with the Paed?

Thanks for replying @alltheevennumbers - the first call (in April 22) was right after school (wrongly) told us they had no concerns so was a bit muddled. We said we were still seeing the things referenced by the SALT but that apparently school were happy. The paed said he would wait until he was in Y1 and speak to us again.

By the time of the second call (Dec 22) it emerged that school had completely misled us and had reports going back to Dec 2020 when DS was 3 and attending the attached nursery. Headteacher of view that even on paper his file "screams autism" and her money was on Asperger's. School did a short update report for the paed then and he immediately said he wanted a pathway referral.

I wrote quite a bit of detail in the forms so maybe I'm underestimating someone's ability to diagnose on paper - it just seems like the sort of thing where I'd have expected them to spend some time with him.

I did wonder whether it was so brief as the paed thought it was glaringly obvious one way or the other. He said he won't even be involved in the panel though so seemingly it's just decided by people who have never met DS. I think I'm going to phone the pathway on Monday to clarify that but wondered if that was typical?

OP - have PM'd you with a detailed description of the assessment process used by our CCG. I imagine there is something similar on the NICE website?

www.nice.org.uk/guidance/cg128
These are the guidelines practitioners (in England) should aim to follow when considering / going through an autism assessment process for a child or adolescent.
Private or NHS, all practitioners who are able to diagnose autism should be well aware of these guidelines. I am, and do...
Hope this helps.

Just another thought... the ADOS (a specific 'Gold Standard' test used to support many autism diagnoses) is often mentioned and used as it is a specialist autism OBSERVATION Schedule... I would not consider, and I am sure no-one else would either, diagnosing a child (or adult) without meeting them and carrying out a formal observation using either the ADOS or similar. A very experienced and well known and regarded practitioner may not use tools such as this, but most people do as they offer a form of standardised reliability to support your findings and back up your clinical judgement.

Was the SALT assessment part of the ASD assessment? Sometimes the paediatrician doesn’t do the bulk of the observations, other members of the MDT do, and that’s fine it can still comply with the NICE guidelines.

Thanks so much @SENDhelp10W and @FloatingBean - I've also had a PM conversation with @alltheevennumbers which has been really helpful. The last SALT report is from October 2021 - they said it's fine as within 2 years.

I'm going to phone the pathway contact on Monday to see whether the messaging was just unclear - it wouldn't be the first time in this process people have said something then said the opposite some time later! I'll have a good look through the NICE guidelines before I call too thank you. In retrospect I should have done that before my meeting but I wasn't prepared for it to be so short.

Many thanks all! Will update thread once I've spoken to them.