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Original poster

Private autism assessment

62 replies

lightandshade · 28/12/2021 22:39

Hi,

Has anyone payed for a private autism assessment for their DC ?

I'm looking to go private for my DD aged 9 till now she has had no formal diagnosis but has received support from school, doctor and school are in agreement that she shows signs of being on the spectrum.

Until covid she coped well but since all support has stopped and she is struggling.

Looking at a couple of years for a formal NHS assessment.

My only concern is that if we pay privately it won't be worth anything ? Did your local authority, school etc take a private diagnosis seriously?

Thanks

OP posts:
MyDcAreMarvel · 28/12/2021 22:50

Use a provider that the nhs also uses such as AXIA.

amusedbush · 28/12/2021 22:59

I was completely gaslighted by the NHS psych who did my ASD assessment, it was a total shambles. I spoke with an autism specialist afterwards and they couldn’t believe how incompetent and outdated the guy was. His attitude was bad I wish I’d complained at the time.

A few months later I had a private assessment with Psychiatry-UK, which is a provider the NHS use as an overflow service. The process couldn’t have been more different - so, so much more holistic, in-depth and was clearly based on recent research, unlike the NHS one.

I saw Dr Jayan and I can’t recommend her highly enough. My report hasn’t been questioned by my university but it might be different for schools.

Lindy2 · 28/12/2021 23:01

Our local authority don't accept private diagnosis.

If your DD is aged 9 then you just about have time to get your NHS diagnosis before Secondary school.

If she was receiving support before why hasn't that restarted now that we are out of lockdown and schools have been back to normal since September? What support was she receiving?

Unfortunately even with a diagnosis often there isn't all that much extra help available particularly if the child mostly manages at school.

Interested in this thread?

Then you might like threads about these subjects:

9 year olds SEN
SnugKnights · 28/12/2021 23:01

My DC’s report has been accepted by the GP and school and the NHS OT. It seemed to help that the Paediatric Consultant who was involved in the assessment still works in the NHS and just does a day a week in private practice.

Imitatingdory · 28/12/2021 23:05

OP I have replied on your other thread, I just wanted to say LAs who claim they don’t accept private diagnoses are acting unlawfully, Lindy.

Techno56 · 28/12/2021 23:07

As the poster above said - the two people who did my son's private assessment also work for the NHS in the next county. The diagnosis was accepted at school and lead to educational psychologist and occupational therapy support. Then when we finally got an NHS appt because the private assessors had used NICE guidance the paediatrician was happy to confirm and provide the NHS diagnosis without us having to go on another waiting list for NHs ADOS assessment etc as it had already been done.

My only query would be whether a private report would be accepted in an EHCP application as we have never had to do that, my son is supported well enough without one. Think what local authorities accept varies by county anyway and is a whole other kettle of fish anyway.

Personally it was absolutely worth it for our own peace of mind and being able to discuss the diagnosis with our son much earlier on in his life than if we had waited 3 more years for the NHS.

RepentBirthingPersonFucker · 28/12/2021 23:08

I know a fair few parents who have paid privately. They have all got a diagnosis and, imo, that's why they are not taken as fact. They all paid 2-3000 to professionals who diagnose privately for their jobs. I find it hard to believe you won't get a diagnosis if you are paying for it

IncessantNameChanger · 28/12/2021 23:11

I used a London NHS doctor would also did private work on the side in Harley street for one of my kids. It was for use in a SEN tribunal and my LA didny even want to accept the NHS diagnosis which as said above is unlawful. They couldnt say anything with a current paediatrician from St George's. So if you can use someone who also works with the NHS you not with the drivel of "they say anything if you pay"

Imitatingdory · 28/12/2021 23:11

Think what local authorities accept varies by county anyway and is a whole other kettle of fish anyway.

Local policy does not override the law, LAs who say they do not accept private diagnoses are acting unlawfully, even for EHCPs.

Datsandcogs · 28/12/2021 23:16

DD diagnosed 2 years ago.

Referred by GP to Ed Psych. Cost about £500, she was not qualified to diagnose but could identify traits. Seen within a week of me asking first questions. The traits were very clear. Then went on to local panel, accepted referral and was seen by psychiatrist who confirmed diagnosis with 11 months of me asking the initial question.

It was extremely quick and paying for the private assessment cut the time to diagnosis by a massive amount I believe, probably years. I was very grateful I could afford to pay, diagnosis didn’t change my child but allowed those around her to understand her better.

COVID has definitely made her traits more obvious - or is it just the teenage years?

gonnabeok · 28/12/2021 23:18

My dd was referred for an asd assessment through the NHS, but because of long waiting lists the NHS offered me a choice of using the owl Centre (private) for a diagnosis which I did and which I would highly recommend as the NHS were outsourcing to them.

PumpkinPiesandapples · 28/12/2021 23:31

@RepentBirthingPersonFucker

I know a fair few parents who have paid privately. They have all got a diagnosis and, imo, that's why they are not taken as fact. They all paid 2-3000 to professionals who diagnose privately for their jobs. I find it hard to believe you won't get a diagnosis if you are paying for it
What rubbish

Parents pay because they know their dc have additional needs And the nhs wait is too long. It’s not paying for a diagnosis it’s paying to not wait

If it’s a private diagnosis following NICE guidelines it’s no different to an nhs assessment and diagnosis and just as valid

PigeonLittle · 28/12/2021 23:33

They legally have to accept a private diagnosis provided its done to correct standards.

Wowcherarestalkingme · 28/12/2021 23:36

As PP have stated, they legally have to accept it.
And also, no one qualified to diagnose Autism will diagnose it just because they are being paid.

PigeonLittle · 28/12/2021 23:38

@RepentBirthingPersonFucker

I know a fair few parents who have paid privately. They have all got a diagnosis and, imo, that's why they are not taken as fact. They all paid 2-3000 to professionals who diagnose privately for their jobs. I find it hard to believe you won't get a diagnosis if you are paying for it
I think of it more that those parents have children with significant additional needs. Their families have dug as deep as their needs are in order to best help them.

No profession wants to light-heartedly hand over a lifelong diagnosis of profound difficulties. You sound awful.

Ask an average family in the UK how best £2k would serve them. They're not going to choose an autism diagnosis for a child Hmm

Ask me how much additional funding my ASD child received at school post diagnosis. I'll give you a clue, it starts with a ZERO.

ItsDisneyBitch · 28/12/2021 23:41

This makes me so bloody cross. My dd was diagnosed privately with ADD her father that fucking ray of sunshine told me I got the diagnosis I paid for.

I then went via the nhs got exactly the same diagnosis and he still didn’t believe me.

That aside, the school never accepted the private diagnosis either. They did accept the nhs one but by then it was too little too late.

Stormsy · 28/12/2021 23:44

Yes. It should be a multidisciplinary assessment so it abides by nice guidelines. If it is, it cannot be 'refused' by anyone, and if it is, simply ask them if they're saying they will be reporting the diagnosing parties for malpractice.

LAs may not want to accept them, but if you go to tribunal, they will get no choice in the matter. Schools refusing to accept them could easily find themselves in breach of the equality act.

Gilead · 28/12/2021 23:48

We have far better things to do with our time and your money, than to rip off people who are just trying to ensure their child has a chance of fulfilling their potential. 😡

Geneticsbunny · 28/12/2021 23:51

Why do you want/need a formal diagnosis? Are you looking to get an ehcp? Is it to help your daughter with her wellbeing? I have a son who is autistic but we are only pursuing a formal diagnosis now he is 12 because it was better for him in terms of secondary school placements of we waited until he already had a secondary please. I would definitely say it is worth thinking about where you want to be in a few years before you start pushing for things so you don't waste energy on things you don't need to do.

santaclothes · 28/12/2021 23:51

I find it hard to believe you won't get a diagnosis if you are paying for it

I paid £2k for DD to be privately assessed. She didn't get her diagnosis, they didn't have enough evidence. Ironically she was later diagnosed by the NHS who were able to to in school observation to het that extra information. So no you don't just get a diagnosis if you pay for it, mostly be due you pay for an assessment not a diagnosis.

Malteser71 · 28/12/2021 23:57

The nhs will often accept it if it’s done properly.

Choosing a private provider where staff also work for the nhs is quite important.

I work for an NHS diagnostic service. We accept some private diagnoses but only if we are satisfied with the quality. We take them to our monthly panel meeting for discussion.

I would be wary of people on mumsnet naming specific companies as upthread. They may name companies who aren’t actually very highly regarded by the local nhs team, you’ve no way of knowing this, which is why I’m suggesting you go with a team where the assessors work in the nhs.

vinoandbrie · 29/12/2021 00:28

My DD’s assessments were all done privately and quickly, and all accepted by the LEA for EHCP purposes.

I did request a NHS referral as well, as school recommended it. The NHS simply agreed with the private assessments that had been done, which didn’t take them long at all, whereas I believe if we’d only gone down the NHS route it would have taken a very long time to get a diagnosis.

Malteser71 · 29/12/2021 00:29

You’re absolutely right.

amusedbush · 29/12/2021 08:15

@RepentBirthingPersonFucker

I know a fair few parents who have paid privately. They have all got a diagnosis and, imo, that's why they are not taken as fact. They all paid 2-3000 to professionals who diagnose privately for their jobs. I find it hard to believe you won't get a diagnosis if you are paying for it
Wow, how offensive and horribly invalidating. Many ND people struggle with imposter syndrome as it is without people questioning the validity of their diagnosis. I’ve been through NHS and private assessment, and I can’t begin to tell you how shitty, shallow and perfunctory the NHS one was. The psych actually started the assessment by telling me outright that he doesn’t believe the ‘nonsense’ that men and women present differently - he was utterly determined from the off that he wasn’t diagnosing that day. Before that he had sent me a single questionnaire based on 50 year old research and he admitted that he made it himself - 20 years prior!

The private pre-assessment paperwork was so in-depth it took me a week to complete it. There were tests and questionnaires, checklists and two 70-question sheets requiring examples from adulthood and childhood - one from me and one from an informant. I’m going to go out on a limb and say THAT is how she managed to diagnose me.

Assessment for neurodivergent conditions is so inaccessible for many people and being able to go private is a privileged position to be in.

Original poster
lightandshade · 29/12/2021 08:50

Wow so grateful for so many reply's.

To answer a couple some questions, out daughter has always shown signs since a baby, with things like, low eye contact, she wouldn't hold food , toys ect till almost 3 and that was through the support of portage ( not sure if they are a local service or nation wide ) but they helped her with her sensory issues, and provided us with tools as parents to support her and great progress was made.

Once she started school a report from th went with her and her school were great she had a quiet zone, extra support, equipment and she flourished.

As she's gotten older her ability to make friends became a worry and we were given the support of SAP ( again not sure if this is just local or not )

I never pushed or asked for a formal assessment and I seen all her needs were being met and felt she's was coping extremely well.

The last two year how ever have been extremely Tough, be that covid or age I'm not sure, we went back to the doctors who referred us to the NHS we got passed back and to from MH to neuro neither one keen to take her on and saying it was the other service that needs to see her,

There is now no SAP, no quiet place , no extra support in school and her mood has plummeted to a heart breaking level. She is now also noticing that she is "different " her words.

I'm embarrassed to say I'm now at a loss as a parent because it's got to the point that I don't no how to make her feel better anymore and I think if I can get her assessment sooner it will hopefully fast track her back into support and also I could get some help on supporting her,

We are not rich and have saved for the last year to be in a position to book this so I can't get it wrong, would it be a good idea to ask her GP for recommendations ?

OP posts: