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Here you'll find advice from parents and teachers on special needs education.

NHS or private Autism assessment?

5 replies

Goggleb0x · 17/04/2024 07:08

Hi this is a duplicate post as I haven’t had any response to the original and I could really use some advice.
I have a 12 year old son who I have always felt may be autistic but I have never been taken seriously by our GP or his school.
When he started high school in September he had a really tough time. Some bullying and stress resulted in a bit of a crisis which then resulted in the school insisting I take him to see the CAMHS crisis team. They said (amongst other things) that they felt he was likely autistic and sent out the screening questionnaires which myself and the school filled in and returned at the end of October.
Since then I have been waiting to hear from CAMHS to see if they feel he qualifies to be assessed. I have chased them up several times but apparently they are still waiting for a meeting where this is discussed. So 6 months so far just to see if he qualifies. We were advised it would be a couple of years once they decided if he qualified.
Thankfully with some successful changes at school my son has settled in much better and is no longer wanting to die or having intrusive thoughts.
I’m concerned that this process is going to take so long that he will be in year 10 or 11 before they even get to assessing him, so I am thinking it may be beneficial to have a private assessment.
My GP and CAMHS have told me that they do not recognise private diagnosis for autism.
Can anyone tell me what the benefits of an NHS assessment is over a private one? He’s never been on any medication or anything so I can’t see that would be an issue. He doesn’t have an EHCP or anything. Does an NHS assessment open up help at school that a private diagnosis wouldn’t? If he develops anxiety (for example) and needs medication surely he’d be treated on the NHS for that.
Finally, can anyone tell me, can I try for a private diagnosis whilst waiting for an NHS one? And where would I go for a reputable one. We are in Herefordshire.
Before high school I had decided that a diagnosis wasn’t important but I’ve definitely changed my mind and feel it’s worth exploring to help my son understand himself in the future. I am also dreading the stress of GCSES causing another crisis.
If you’ve got this far, thanks so much for reading. I’d really appreciate your advice. Thanks

OP posts:
CasadeCoca · 17/04/2024 08:32

Sorry you are faced with this wait. It's appalling that children, and particularly pre-teens and teens, are forced to languish on waiting lists for years whilst coping with the demands of adolescence and public examinations etc

One question to ask yourselves is whether a private diagnosis, whilst you wait for the NHS to do whatever it is going to do, would bring information that would help you understand DCs needs and enable you to feel more confident advocating for them where needed, and help DC with self identity?

The other thing to mention is that SEND Code of Practice, including EHCPs, is based on a definition of functional needs, and these do not require diagnosis. Similarly, the Equality Act 2010, including legal requirements to make reasonable adjustments, rests on long term functional incapacity rather than a diagnosis. Good luck.

Goggleb0x · 17/04/2024 08:53

CasadeCoca thank you for replying. Yes I do think that a diagnosis would help him a lot with self identity and it will certainly help me to advocate for him better. I’ve spent his whole life trying to explain him to people who think he’s just naughty, whiney, obnoxious etc. Even since speaking to CAMHS he has shown a sense of relief to a degree. It’s helped him to understand there may be a reason why he gets overwhelmed.
I have no idea how to find a reputable private assessment. The GP said “there are a lot of Charleston’s out there” which is not particularly helpful.

OP posts:
CasadeCoca · 17/04/2024 09:02

I can only suggest familiarising yourself with the NICE guidelines on child and adolescent assessment, so you can discuss this with possible practitioners. Local autism groups, or possibly the neurodiversity boards here, might yield recommendations?

Goggleb0x · 17/04/2024 09:16

CasadeCoca thank you I will do that.

OP posts:
Headfirstintothewild · 17/04/2024 11:31

The LA should not have a blanket policy of refusing to accept independent assessments. The validity of any such assessment and potential diagnoses is less likely to be questioned if the assessment follows NICE guidelines &/or the HCP undertaking the assessment works/worked for the NHS.

With a few limited exceptions such as some autism specialist schools and some specialist teaching services, support is based on needs, not diagnosis, so a diagnosis by the NHS or independently won’t automatically result in more support, but equally support should be provided now.

You can pay for an independent assessment whilst on the NHS list.

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