NHS or Private assessment for Autism

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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. 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.
If you’ve got this far, thanks so much for reading. I’d really appreciate your advice. Thanks.

We are in the middle of a private assessment, and I checked that it would be accepted by CAMHS/the GP first so I guess it is different in different areas. In fact I think the GP recommended a private assessment! I was advised to make sure the assessment used a multi-disciplinary approach following NICE guidelines. The clinical psychologist leading our assessment also reassured me that her assessments have been accepted by CAMHs, and her recommendations taken on board by schools etc.

Has your GP/CAMHS said they won't accept any private diagnosis at all, without even considering who it is done by?

(We were already on a waiting list for an NHS assessment, but the wait is so long, added on to the time trying to get referred. During that time dd has developed various mental health problems probably caused by coping with autism, so we felt we needed to do something ourselves)

We used The Autism Service. The Autism Service for my 17yo.
He had an NHS assessment 10 years ago which concluded he was not autistic but CAMHS suggested reassessment and we passed the triage but it still took over 6 months before he was even on the waiting list.
Tbh the private assessment was more thorough and the assessors were more expert, thoughtful and highly qualified than the NHS ones 10 years earlier. To be fair to the NHS people there are more resources for understanding autism now and he does present in a much more obviously autistic way than he did, but the NHS people had some really dubious reasoning while the private ones were very careful to gather and weigh evidence. If anyone is not inclined to take the private conclusion they would only need to look at the report to see a very thorough and well evidenced investigation.

We have never had any help denied by school because of not having a diagnosis but our school might be more flexible than others and he does have an EHCP even without the diagnosis.

Thank you for your replies tam409,TheCountessofFitzdotterel. Since I posted I have decided to go privately with Mind Professionals. I nearly chose The Autism Service but went with Mind Professionals as the offer assessment to NHS through Right to Choose, although we’re going privately. I figured if I used a provider that they also use it may be helpful.
Since I posted I have spoken to CAMHS (after asking PALS for help) and they have confirmed that we are already on the list and they do recognise private assessments that are multidisciplinary and NICE compliant. So I had been given the wrong info from them. School SENCO also recognises that private assessments are very thorough so hopefully that will be fine.
I enquired about my GP’s reasoning with the ICB and am waiting to hear from them although I did speak to a GP friend who said the most important people that need to agree are the LEA. I haven’t heard anything back from an email I sent enquiring about their stand point.
All in all I think the private assessment is going to be very helpful and tomorrow is my part of the assessment followed by my sons part in a weeks time.

Best of luck with it.
Look after yourselves, it’s quite a gruelling process having to look back over difficult memories and focus on your child’s challenges.

TheCountessofFitzdotterel thank you, it was pretty hard going. It does make me sad to look back on all the times he was misunderstood and when I could have handled things so differently. Glad it’s over.

The private assessment we had was done by the local nhs autism lead in their private work capacity. Multidisciplinary.
Don't wait and wait if you can fund it privately as it makes such a difference to well being

It's worth getting it done privately if you're thinking about applying for an EHCP. It's all a really long process.

If your private assessment follows NICE guidelines they have to accept it. They will say they don't then you make a formal complaint and they will. Support at school should be based on needs not diagnosis so shouldn't make a difference but it will become without diagnosis most schools use overstretched resources for the kids they can't deny have needs. My experience of having a diagnosis is there is no support anyway. You struggle for years thinking when you get the diagnosis your kid will get help only to then be told they don't qualify for MH help as they are autistic and as there is no cure for autism there are no services for them.

Personally I'm autistic and only got diagnosed as an adult. I'd struggled all my life with 'mental health' issues. Always felt wrong always trying to do better or fix myself. Got my diagnosis and it was an instant cure. I understood myself better, could make easy accommodations in my life rather than just forcing myself through it because'I should be able to manage this'. I wish I'd had my diagnosis years and years before. So for that reason I say if you can afford private do private. Your child understanding themselves better and accepting they are different not wrong will be the most beneficial thing I would say

Thank you for your messages. We have gone down the private route now, I am hopeful that as you have all pointed out it will help my son understand himself and will help us as a family understand him too.
This morning he has refused school, has been trying to get a day off for 3 weeks. I asked him today why he was so desperate for a day off and he said because he’s finding it really difficult to not get angry in lessons as it is so noisy. Previously I would have thought that was an excuse but today I’ve decided to give him the day off to try to help. Hopefully it does.
PurpleBugz thanks for telling about your experience of being autistic. I spoke to CAMHS who confirmed that if my son was diagnosed through them it would purely be diagnostic, no further advice or help. So I couldn’t actually see a reason in our case to wait on their long waiting list.

Can I ask how much it cost for a private assessment? Wondering if it's within our reach or not

I think we paid £2200.
We used an organisation called The Autism Service; we were impressed by both their efficiency and how professional they were (more than an NHS assessment ds had 10 years earlier).

.

Does anyone know the timescales for a private diagnosis? I'm in a similar situation and looking into private too

My dd is 12 (y8) she's been waiting for an assessment since she was 9 (y5).

I stupidly thought / wanted it sorted by the time she started secondary school.

I waited 2 years for mine. Had my diagnosis 5 years ago and I was told the kids wait wasn't as long.

Ours was done and dusted within a few months, which means there were waits of a few weeks between stages. Iirc we set the ball rolling in late November and the final diagnosis was March.

It was about 3 months for us from first call to diagnosis.

We went with private diagnosis as it can be years for diagnosis from nhs and my DGS needed support asap..else he would have been lost in the system. He received more support at school because of that faster diagnosis. CAMHS..IMHO arent great. Id go private initially just to get that diagnosis. Itll cost around 1300

Keep pushing the nhs. Ring and find out who does the assessments and then make an appointment to see them privately. Once you've had one or two, ask if they can do anything about pushing your nhs appointment as you need to get back in on the nhs.

But calling for an update won't get it done faster will it?

We were in a similar position a few years ago .
DD now in year 10 and had her assessment in August which confirmed Autism
I had no expectation of the assessment outcome . We spent the time waiting (20 months) providing targeted and appropriate support for dd and for us . A diagnosis imo was not going to fix this only perhaps provide dd with answers
I guess what I'm trying to say is perhaps given how affected your ds was / is focus any time and money on support now while your waiting . These years are so important and the assessment won't magic a support package. Well it hasn't for us .
The National Autistic Society seems easy to navigate and useful .
I hope things continue to improve for your ds .

@lololulu

Actually I think it helps. Can do, sometimes. Every time you call it logs on your nhs account. And that can prompt a review. Plus if you do actually manage to get through to anyone, to speak to somebody, and you can say : I've been waiting this long and I've phoned four times, it can actually prompt being given an appointment earlier rather than later, compared to if you don't chase at all.

Thank you for the timescales advice, that's really helpful

The 4/5 I've e-mailed to enquire, they've always replied we are still in a triage queue.

I know, but they have guidelines, even for what the timeframes are for triage. So I call, and ask, was are you're guidelines, and what are your actual wait times for triage? How quickly do you think we will be seen? Is there anything else we can do? Doesn't do any harm.

I realise that OP hasn't posted here for a while, but perhaps this info will be useful to others.

In my area the Local Authority won't accept private diagnoses when considering whether to grant an EHCP. If any condition is diagnosed by a non-NHS clinician, they pretty much ignore it.

I have also heard anecdotally that it can be more difficult to get Disability Living Allowance from the DWP without an NHS diagnosis.

My ds has ASD and related diagnoses and has been referred to CAMHS three times; they have always decided that the service can't help him because his anxiety and other issues are autism related. We get told to seek other support.