Does anyone remember the 2012 posts from 'gladheart'?

[ARoomSomewhere]

think that was my name back then?

we had gone to see Daphne Keen down in London who gave us a rather vague report which she said was a diagnosis.
When we got home our GP, who'd refused any assessment, got together with Head of School (who was v close to GP, in tiny village) and ref us to SS on basis of 'potential future emotional abuse in seeking unnecessary 2nd opinion'. SS took no further action but it was held over us. We stuck it out for 2 years then moved across border to England to a tiny school with an amazing Head who said she'd refer v quickly. Head left. Senco was completely hopeless. School closed.

But.... Ds WAS finally referred by School in Feb. We got our formal Diagnosis from an NHS Senior Clinical Psychologist last week.
He said there was 'ample recent evidence from a range of colleagues/ sources' but that Ds had always been autistic (now nearly 14).
He also said we'd been 'badly shortchanged' with the DK report and that he thought we'd been to hell and back.

It has been a very long journey. No reason why anyone should remember but if you do I thought you'd like to know that we finally 'got there'. DD has just been referred...

happy to pm you.x

I have an appointment with Daphne Keen next week!!!!!!!
We are booked in for an ASD assesment.
This scares me do you mind PMing if possible?

I remember posts from a Mum in Scotland with an obstructive GP who was (from my rusty memory) friends with the Head, Governors(?) and MP so she had nowhere to complain to despite the GP's kid bullying hers with no action taken..

If that was you, I'm delighted that not only have you got the help your son desperately needs, but that at last you've been vindicated.

If I'm confusing you with another poster, I hope she reads your post and follows what you've done so she too can find the help her son needs.

Autism is a lifelong condition*, there are so many undiagnosed adults nowadays because their parents just thought they were quirky or even like them or a family member, it's only comparatively very recently that children have been diagnosed early.

*One poster corrected me and said her son's paeds had said his autism was due to several serious illnesses during his birth, but every other source I've seen says if you are autistic, you are autistic, diagnosed or not, you're born with it and that's that.

Happy to pm those who' ve asked.
(It was not meant to be about Dr Keen sorry if i've worried anyone).

BlankTimes yes your memory is spot on.

We'd gone to local gp when ds around 8 and struggling badly. They' refused assessment. We'd been told about Dr Keen on here and went down to see her. She said: 'yes, prob, more assess locally helpful'. When we got home we'd been referred to SS for 'potential future emotional abuse' of ds for insisting on a 2nd opinion when we already had a Very Expert Opinion locally. SS took it no further but we were told by GP/School that we were 'being observed' and it could proceed further at any point. I stuck it out for 2 years then left as he had no help and it was still being held over us.

The new school wasnt fab, (Senco beyond awful) but THEY referred him to Caamhs in Feb and we got our ASD dx on 16 July. Scottish LA never sent either childs records (they were 'lost' apparently..).

The ASD teacher the School called in to see ds also observed dd (in playground). She contacted me and asked to do home visit. She did, then did screening with dd at home and went back to SChool to ask them to fund a school observation. They refused. TEacher says she will do it in her next School in Sept.

It is incredible how 'hit and miss' it can be.
DS is Autistic. He's always been Autistic. It took 6 years, 1 SS ref, 1 private dx, 1 nhs dx and a move of countries to be 'heard'.

I came close to a breakdown.

NEVER GIVE UP. You are your child's best advocate.

I remember you (have also named changed several times since then).

I'm SO glad you got out of that Scottish village. It sounds like somewhere from wickerman.

Glad your DS (and DD) are finally getting the help they need.

for you.

That SS ref was dreadful, such a vile thing to do.

I've had to fight a lot too, so sympathise with your situation a lot. My dd is adult now and we've just been through the transfer from DLA to PIP system (Tribunal in both instances) and something else which between them took me almost 3 years to be awarded what she's entitled to.
So many "professional" people clueless about SN, yet they can make you jump through so many hoops and they provide ridiculous arguments at every turn which you have no choice but to counter by literally proving your case

NEVER GIVE UP. You are your child's best advocate

That should be written in large bold print at the top of every SN board on MN

Thanks Prinkley

Still have house there. Wonder if its 'safe' to move back now?

Must say, it nearly did for me :(

Thanks, BlankTimes

sorry you've had such a struggle too.
It seems not unusual.
Parenting a child with additional needs is enough without the 'system' being against you. When you add SS / child protection on top its very hard. I dont think i'll ever quite feel 'safe' even now i have it in writing.
Funny, i have an appt with the GP whose kid was the bully tomorrow (i kept my GP as was waiting on surgery - which took nearly 2 yrs to happen). I am tempted to show her the letter!

Hope your appt went well.

I'd wait until I had a detailed diagnostic report with recommended interventions and ask for a copy to be placed on my child's medical records.

I've encountered a few medics who have been very anti any invisible disabilities because they 'don't believe in them' therefore discount any possibility of a patient having one, I think they should all be made to attend disability awareness courses. Their lack of knowledge is astounding.

I took the letter and waved it in its envelope

I said to GP, I'd just like to say something off record if thats okay?

'you remember we asked for advice about ds' difficulties and were refused assessment then went to London and got a dx/recommendation for further assess and then were ref to SS?

yes she says. Well says I. New school ref ds to Caamhs. Dx arrived in post this week. Autism.

Ah says she, that wont be a local diagnosis though will it?

I said: 'its an up to date Formal Diagnosis by an NHS Senior Psychologist. It explains how ds meets the criteria. It recommends further input on his sleep problems.

That sounds horrendous and I’m so impressed you stuck it out. Well done

Now you have the diagnosis these people need to be taken to task for what they’ve done. Calling SS is appalling. As the GP wasn’t at all apologetic I’d let them have it! Look on the GP’s website and follow their complaints letter through all the levels and the escalate to the GMC. It’s not acceptable what they’ve done to you and your DS. They’ve not only denied you access to services but they’ve also tried to bully you by referring to SS unnecessarily. How many others will get the same treatment if you don’t speak up?

I’ve got a few complaint letters that I’ve been meaning to write.... I don’t mind genuine mistakes but professionals who are downright condescending really get my goat

What twaddle is a "local" diagnosis?

Most people qualified to diagnose autism and other SN and co-morbids don't work within less than an hour's travel from me, so my dd's diagnoses - and there are a lot - are hardly "local" but they are all NHS and credible.

I'd take her comment like the things a spiteful child says when they know they are in the wrong but won't admit it. What a nasty woman she is and so unprofessional.

So you needed a local diagnosis for local people?

Ok now it's sounding more like Royston Vasey than Wickerman

Prinkley it honestly IS a cross between Royston Vasey and Wickerman

i guess its possible that an English NHS dx wouldnt be accepted as Scottish NHS is Devolved?

How the puff do i find that out though?