Autism ‘diagnosis’

[UprootedSunflower]

When dd was little, age 3/4 she was referred to the social communication clinic.
I was verbally told she is autistic and the NHS clinic wrote a report. She had a lot of other appointments that tied in before this referral to the social comm clinic for under 5s

It concludes …. point to a diagnosis of high functioning autism.

In the actions there is a referral to a CAMHS post diagnosis group for children with autism.

There is also advice on accessing the early bird autism group

we since moved borough a few times, as out of area we didn’t get a follow up. We have other reports with feeding groups referrals etc. She’s been treated as autistic since. She’s quite classic in that people ask if she is autistic or presume she is without me saying so at groups and events. We’ve just moving area fallen between the gaps before, waiting lists are LONG.

What I never thought about at the time is the wording, points to…, there is no bit at the top of the letter saying ‘diagnosis’. It’s just a written report, pretty long, with her needs.
I was stressed at the time. I was verbally told she was autistic, went to autism support groups. The report doesn’t actually say ‘diagnosis: autism’ on it.

I’m now, ten years later, in a position where I’ve been told she doesn’t have an autism diagnosis from another local authority looking at this report.

Am I going mad? I thought being sent to multiple post diagnosis support groups, the words ‘point to a diagnosis of…’ and being told weee clear- but now I’m doubting.

I remember the end of the clinic. I was a bit shocked by the on the spot confirmation. They spent time explaining with the multiple reports from epilepsy/ salt/ nursery/ dietician/ hearing team over years it was clear. They said it twice for it to sink it. There was no doubt what they meant, but it seems to be phrased ambiguously

Have you spoken to the GP? What do DD’s medical records show? Not all reports will have ‘diagnosis: autism’ at the top. You could also speak to the service who made the diagnosis.

In what context is the LA saying DD doesn’t have a diagnosis?

None of our GP records have been passed on from this period, they have a diagnosis made at 1.5 of cerebral palsy.

Accessing a support group

I can dig further but the under 5s service was in a centre that is now closed. They seem to have commissioned services in a different format looking at the website

I would still speak to your GP about it. I would also be questioning why none of your medical records have been passed on. The medical records from the service should be somewhere. You could speak to the ICB that covers the old area.

i can, but it’ll take time and she’s going to miss out.

Is the report really unclear? It’s lists her needs at then says this and his history point towards a diagnosis of autism

it then as actions lists referrals to post diagnosis support groups

We’re not really had many needs eyfs to puberty, just rolled by, now she really could do with accessing support quickly

Lots of support is based on needs, not diagnosis. Other than the support group, what support are you wanting? Very very little support is quick though.

“point to a diagnosis of autism” is ambiguous. It could be taken to mean that is the diagnosis, but equally it could be mean it is suggestive of a diagnosis but we haven’t given a definitive diagnosis yet. The way to solve what they meant was to track down the medical records from the old service and GP.

The offer was there, it starts next week, it was rescinded. It’s time criticial.

tbh the Gp is only going to have the same letter I have, it’s the only one.its part of a larger issue, for example 2 of my births unrecorded

The reason I mention the old GP is because they will know if the diagnosis was coded on the records. That will be separate to the clinic letter you have.

I’m worried they ‘didn’t receive’ it.
So far they’ve said they got no record of two childbirths

Tbh I’m feeling very very annoyed, like it’s weaseling out of support. The needs are listed and it’s mentioned post autism diagnosis twice. It’s less ambiguous in context of it all.

I’ve attempted phone calls and emailed.

Just feeling upset. It even says ‘Prior to diagnosis mum and dad have been supporting xxx well with a range of strategies such as social stories…’

I let’s just clumsy wording no one has picked up on. There’s no review or further assessment mentioned either, just ‘follow up appt in this clinic to review support in place and school start’

If you think the letter is a diagnosis complain to the LA. Alongside this, I would pursue other support that is based on needs rather than diagnosis. And also speak to the GP because diagnoses should be coded on their records.

I’ve had an email response.
The GP has closed and patients moved to a larger practice.
Apparently DD was not a registered patient at the time of the letter. No further details.
The whole family were registered. 4 siblings, and both parents and an uncle and a grandmother! No doubt. She attended there, and I certainly didn’t deregister
It’s going to be a massive headache

This group is just right.
It’s funded.
They asked for a letter a few weeks ago. I’ve been told ‘due to demand exceeding capacity we have decided to prioritise children with a diagnosis of autism’
It’s hardly a pick and choose situation- there’s no other groups around anyway

If the old diagnostic service and GP surgery can’t help contact the ICB. I didn’t just mean support as in support groups. There is other support out there.