NHS vs Private diagnosis - ASD

[LannaL]

My 11YO DD is autistic. Waiting lists in our area for NHS assessment are high, so we paid for a private assessment earlier this year, which diagnosed her autism. This came as a huge relief to her (she was close to crisis point beforehand), and is really helping her manage the transition to secondary school. The school have accepted the diagnosis and put her on the SEN register, and are so far being helpful in terms of the accommodations she needs.

My question is this... should I be fighting to also get her assessed by the NHS? I have been told that there are some circumstances where an NHS diagnosis carries more weight than a private diagnosis. So I thought it is probably worth pursuing that (or asking the NHS to ratify her private diagnosis) so that it is in place if she ever needs it in future.

BUT it looks like it's going to be a bit of a battle... I'm getting fobbed off left, right and centre - the community health service even rejected her referral on the basis that she has a high IQ (!!!) and she was just sub clinical on the ADOS in her private assessment, even though the assessor acknowledged that there were signs of her masking, and still concluded that she is autistic. I know this is the case for many high IQ autistic girls - they mask their way through ADOS just like they do through life!

So I suppose I'm worried - it came as such a relief and validation to her when she was diagnosed as autistic, and there is no doubt in her own mind (or mine) that this diagnosis is accurate. If the NHS refuse to assess her, or don't assess her fully, can't see beyond her masking in the ADOS, and tell her she is NOT ASD... this might have a really damaging effect on her.

So I can't really work out - is this something I should be pursuing and fighting for, or should I just accept that she has her private diagnosis, and maybe that's all she needs? I can't quite work out exactly when she might need an NHS one and the private one wouldn't do?

Would be very grateful to hear your advice!

People can’t refuse to accept an independent assessment just because it is independent. The validity is less likely to be questioned if the independent assessment followed the NICE guidelines &/or they also work for the NHS.

A good assessor recognises masking for what it is, scores the ADOS appropriately (or uses something like DISCO) and considers the ADOS alongside all the other information rather than on its own.

Where we live an NHS wait for an assessment is 2-3 years, so we have a private assessment but our GP and school quite firmly told us that while a private one won’t be ignored, it also won’t be officially accepted

So we’re still on the NHS waiting list.

while a private one won’t be ignored, it also won’t be officially accepted

The GP should know that isn’t the case. They cannot have a blanket policy of refusing to accept the diagnosis just because it is private.

The school should also know that isn’t true.

Thanks both - @EndlessLight that was very much what I've been wanting to hear. Although it is interesting to hear @PianoPlayer0807 that you have had challenges getting it accepted... this does make me think that while it SHOULD be accepted everywhere, sometimes it will come down to the individuals/organisation you are dealing with, and then there's a battle to get the private diagnosis accepted. In which case, I think it might be worth me pursuing the NHS to recognise it too. While her school now has been happy with it, if she changes schools in the future (or perhaps needs special exam arrangements which might then have different criteria)... I don't want to roll the dice over whether they will accept it or not.

I do wish there was a clearer process from the NHS to get a private diagnosis officially onto their medical record. I don't want to take NHS resources away from anyone else on the waiting list, and it does feel like duplication of effort since she has already been assessed to NICE guidelines. But if it's something that might help her in future, then, as all SEN mums know... I'll keep pushing for it!

So has the GP refused to put the report and diagnosis on her medical record? I understand local services refusing to retest your daughter when waiting lists are so long. A private assessment should be accepted as equally valid, particularly as now many NHS trusts are contacting out so much of this work that an NHS diagnosis is often by a private company anyway.

Just so you know, even if the school acts unlawfully, SENDIST considers all evidence.

TBH I don't think the GP really knew what to do... maybe this is all I should be pushing for then, as you say, I'm not looking to duplicate effort/take resources away from anyone else... just want to make sure that the NHS officially recognise that she is autistic. If that is within the GP's remit... that would be a very simple solution!

Watching with interest. Had conversation with paediatrician about same thing. He said yes will add to report but say its private diagnosis. It was NICE compliant, multiple people on the assessment team and NHS consultant involved in private capacity.