Psicon autism assessment mess up?

[Movinghousemovinghouse]

Hi. We had the right to choose two part autism assessment for my 6 year old son. At the end of the online developmental history assesment - which was part two - the clinician said he concluded autism. We asked what led him to that conclusion and he read out a few things from the ADOS report, which was part one of the assessment.

My partner and I, without discussing it, both immediately said we don't recognise those descriptions of our son.

Examples include batting and snapping fingers, no imaginative play, bending wrists back on furniture, rubbing the carpet.

Now, we feel our son is likely autistic and he does stim but of course we can't proceed with diagnosis when their descriptions sounds like another child.

He was also already familiar with the frog book they use to assess imaginative storytelling.

It also felt like they didn't take into account the fact he has ARFID and how that impacts behaviour.

The clinician shut down any kind of conversation about this and said he wasn't at the ADOS so can't comment. He advised us to get the notes. Now Psicon are pushing back and saying they've never encountered this before and won't let us have the notes. It feels like they're trying to push us towards to conclusion meeting and report write up regardless of our concerns.

We've had to submit a subject access request for the notes and we're unsure what's going to happen next and it's not clear what we're entitled to.

Has anyone experienced anything like this before?
We're deeply concerned they are churning out a medical document that will be with him forever but doesn't reflect him at all or provide any support we may need in the future. Our worst concern is that they have mixed up the notes of another child.

Bump for 🚦

The ADOS is very structured. Professionals are trained and peer moderated. In our LA they were always carried out by 2 professionals e.g.a Paediatrician and a Specialist Teacher or a Speech and Language Therapist.
It would be highly unusual for reports or names to be mixed up.
The ADOS is just part of the diagnostic assessment and is very prescriptive. The people carrying it out wouldn’t usually have access to other information e.g. ARFID diagnosis or report from school.
Information is drawn together and discussed for the final diagnosis.
As it’s an unusual situation for a child there is every possibility that there were sensory and repetitive behaviours observed that you don’t see at home. These, or similar, behaviours may be evident at school and be coping strategies which aren’t required at home.
As a specialist SEN teacher involved in observation of children in classrooms for reports which formed part of a decision towards diagnosis I frequently observed sensory or repetitive behaviours that had ( unsurprisingly) gone unnoticed by staff in a large class or busy playground.
I hope you get the answers that you are seeking. It can be a very stressful time but you need to put your faith in the professionals if you can.

Thanks so much for your detailed and reassuring reply. It's just it felt like he was diagnosed without anyone drawing all the information together and listening to us his parents. And the descriptions felt off as it said things like he snaps his fingers (he physically can't) and has no capacity for imaginative storytelling (he is praised for this all the time). Something in the process just feels very off when the conversation and concerns are shut down or quickly explained away.

I do understand as a parent as well as a professional ( retired) Parents are the real experts on their own child.
Hope you are getting some support for his ARFID.

Ah thank you. I really appreciate you taking the time to reply. It truly is extremely stressful and confusing.

We've been lucky enough to be taken under the care of an ARFID team and he's doing so well. He even made us drive all the way to a pier so he could try a cheeseburger and when he didn't like that, made himself a chip butty 💪 So chuffed.

it sounds like the person giving you the feedback in the parent session didn’t feedback well.

the full assessment will need ADOS, ADIR and either school observation or feedback then all of this is discussed as a small MDT. Followed by a full report (usually 15 pages).

for the concerns you have

• already being familiar with the book, the can offer an alternative. When scoring, it generally gives children and advantage so likely to score better with imagination, but that doesn’t sound to be the case for your son so this won’t impact.
• the other aspects are observations of repetitive behaviours they have seen.

the ADOS is much broader than these areas, it sounds like you’ll need to see the full report to know if it is an accurate description.

on imagination, have a think if his story telling is based on a story he has completely made up including emotions and feelings. This is true imagination. Often children with autism will be create a story on what they like or stories they have been read. The ADOS area is a book with no words and he has to make up a story of what’s happening.

AFRID won’t be impacting his behaviours, it’ll be the neurodiversity that is driving the ARFID that impacts his repetitive behaviours.

Oh wow that’s absolutely amazing. People don’t understand how significant those times are. Emotional.

Thanks so much for your reply and insights.

On imagination, he plays endless made up games with his sister. They make up the rules together, including emotions. Sometimes it is a bit inspired by a TV show or similar but mostly it is their own world.

Re. the book, he knows and loves the frog books and laughs his head off about it. I guess he just described the pictures when asked as already so familiar.

Re. the MDT meeting, I feel like this is the bit that is missing from the process. It just feels like a done deal without conversation and they are pushing for a report write up. We're being made out to be difficult, and that the second clinician speaking to the ADOS team is out of the ordinary, as is the 'conclusion meeting'. We're very concerned if it gets to report stage it becomes a medical record and noone has really cross examined.

On ARFID, I know it can present as rigidity and meltdowns, so one avenue we'd like to investigate is whether the rigid behaviour is a result of ARFID, which is not always a comorbidity of autism.