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Has anyone paid for a private ASD assessment and regretted it?

(22 Posts)
TripleRocks Mon 19-Sep-16 11:44:39

We are in a situation where the NHS autism team are not willing to assess DD at the present time. Basically I think the local service is so overstretched that it's incredibly difficult to get on the waiting list and they try and refer sideways to other services where possible. So we are currently getting some support from the school nursing team and have accepted Early Help, but I feel I want to explore getting a diagnosis, which does not appear to even be on the horizon from where we are currently.

I understand a private assessment locally will cost the best part of £1000. This is an awful lot of money for us to find but it may be possible. I also understand that assessment does not equal diagnosis. I want to find out if there is anything i ought to be wary of before embarking on the private route.

PigPigTrotters Mon 19-Sep-16 11:50:38

Ds2 was privately assessed and diagnosed.

Pitfalls that I can think of (going by experiences of others I know of):

Make sure the assessor is BMC accredited (may be the wrong wording, but something like that).
If they also work for the NHS it's seen as more credible.
Make sure they're not a quack - I know of a few people whose children were diagnosed privately, and the assessors were not qualified to do so.
You will need a multi disciplinary assessment (paed and clinical psychologist or SALT or ed psych)

There will be others who know far more than I do, but these are the things I've seen go wrong for others.

zzzzz Mon 19-Sep-16 12:09:34

How old is she?

TripleRocks Mon 19-Sep-16 12:48:10

6 in October

Fairylea Mon 19-Sep-16 13:06:06

We paid for ds to see Dr Daphne Keen in Harley street London, two hours for £850. We came away with a diagnosis of asd and dyspraxia for ds aged 4. The local authority kept saying he was borderline and wanting to reassess again and again - we didn't agree he was borderline and neither did Daphne Keen. She carried out lots of her own observations and also sent off forms to nursery etc. Best money we ever spent. He now has a diagnosis which means we are able to apply for the asd specific state special school we wanted for ds. We also felt that if we came away from the appointment with Dr Keen saying the same thing as the local paedatricians then at least we could trust they were saying the right thing- which they weren't.

They were willing to accept her diagnosis as she still works in the NHS at st Georges and also works to NICE clinical guidelines.

zzzzz Mon 19-Sep-16 13:19:09

Is she well supported in school?

What more do you feel is needed?

My opinion is that private dx is more useful for teens and adults and less so for early primary.
It takes roughly 6 to 8 months to see a peadiatrician here and it took another 3 years from his referral to the ASD assessment team to get to dx. Ds is quite severely language disordered and had full time 1:1 in school. (So in no way "quirky" or "could pass for nt"

That said I wouldn't have wasted money on a private dx (unless I needed it for a legal battle).

If you focus on need and securing support you will draw a picture for them that may be best described as autism. Then you can go back to the peadiatrician (should you want or need to) and await his revelations grin

TripleRocks Mon 19-Sep-16 16:46:21

Thanks for the replies. Lots of food for thought.

I guess it goes to the heart of what we'd be looking to achieve from a diagnosis. DD has just started year 1 and academically she's doing well, so it's not that she's needing more support there.

At home, things are difficult. The summer holidays were awful and brought me pretty much to the absolute brink of what I can cope with in terms of her behaviour and the stress levels in the house. Now she's back at school things are better, but we're still having bad days.

I guess I just want an answer, is there something underlying or not. And a bit of me wants to know it's not all in my head. But otherwise, a dx possibly wouldn't make a blind bit of difference in any other respect. So from that pov it would be a pretty expensive bit of paper!

I just don't want to have to wait for her to start falling apart before we get any recognition for the areas she struggles with. It seems things have to be pretty dire before the local service will slowly kick into motion.

PigPigTrotters Mon 19-Sep-16 17:20:27

For us getting a diagnosis in primary was essential, ds masked and was given no support whatsoever.
We were told that support was needs led not diagnosis led, but despite giving evidence to school that he needed more support, there was none forthcoming until he was diagnosed.

zzzzz Mon 19-Sep-16 17:33:39

What support did you get that was dx dependent?

PigPigTrotters Mon 19-Sep-16 18:01:33

Autism outreach involvement, understanding that giddy/silly behaviour was down to anxiety, not just being naughty, being given options on things like school trips and being in the school play which allowed him to feel in control and choose to do them, when refusing to complete SATS papers they understood that it was anxiety (up to diagnosis his work refusal was seen as sheer naughtiness).
Before the diagnosis he was seen as naughty, manipulative, silly, lazy, rude etc and he was told off all the time, which meant mega meltdowns at home all the time.
The support wasn't good, but there was more understanding and he could go through to secondary with a diagnosis which means he has access to a quiet area to work and a pass which means he can leave a lesson if feeling overwhelmed.
Before the diagnosis there was literally nothing, and secondary would not do anything without a diagnosis (we'd already been there with ds1 - non-clinical diagnosis of ASD/PDA, suspected dyspraxia and dyslexia - school insisted he was just lazy and disruptive).

tartanterror Mon 19-Sep-16 18:18:14

We took DS to see a paed privately at 3.5y for an opinion. We chose the Dr because he was head of an autism service and also seemed to have links with a feeding disorder service. We didn't want a diagnosis of ASD but we wanted a physical examination to rule out physical causes for the eating problems. We also wanted a 2nd opinion after a SALT mentioned social & communication problems. We totally chose the wrong guy! He said there was no sign of a social and communication disorder and patronised me within an inch of my life :/ We should have chosen someone with more specific experience of Asperger's rather than Classic autism. That threw us off track for 3 years until our local SALT service scooped us up. Could you try self referring to them about communication issues? Our local service has drop in sessions and they are helpful supporting referrals where they can't help. Might be worth checking before going privately?

tartanterror Mon 19-Sep-16 18:19:24

^ I should have said the Dr was the head of an NHS autism service

PolterGoose Mon 19-Sep-16 21:19:53

Average waits for children from referral to diagnosis are 3 years. I would probably jump through their hoops to stay in the system and work on learning ways to support dd at home. Ultimately, diagnosis or not, you will be doing the bulk of the 'work' so get reading and learning now!

For my ds diagnosis has been vital for him to get support at school. His problems could too easily be written off as naughty horrible child with crap parents, instead of vulnerable anxious child who needs support...

zzzzz Mon 19-Sep-16 21:36:09

in answer to the original OP we went to BIBIC and had a private assessment when ds was 3ish. I don't think it was good value for money and think the NHS assessment (which we have done twice) was far more thorough and better recognised and of course free and leads to diagnosis if needed. We pay huge amounts of tax to HAVE an NHS. It boils my piss to think disabled children are paying for assessment angry

That said ds did have huge amounts of support in school without dx and his ehcp and dx arrived pretty much at the same time so one didn't impact the other. The key for in school support is not dx or even being pushy it's down to the ethos of the school you are in. If they want to support kids and see that as their job they will, if not they won't.

CaptainSnort Mon 19-Sep-16 23:16:16

I agree with zzzzz about the ethos of the school being the most important factor.

DD's old school did nothing to support her even with a diagnosis.

I do think a diagnosis can be important for other things other than school though, like heath care and out of school activities.

DD can now access groups and activities specifically for child with autism - for instance she goes to swimming lessons organised by our local autism alliance group.

Also it helps her to get the appropriate support from CAMHS for anxiety- she receives ASD specific support, whereas without a diagnosis she would receive regular anxiety support which wouldn't be suitable for her at all.

itsaconundrum Tue 20-Sep-16 13:25:32

We got Ds diagnosis when he 3.5. Took 12 months from start to finish through the NHS

zzzzz Tue 20-Sep-16 14:17:46

You are extremely fortunate itsa

itsaconundrum Tue 20-Sep-16 18:11:55

Yeh extremely I expected a long battle especially where I'm from all I know is they said he was easy to diagnose confused whatever that means.
It's wrong how long it takes children to get a diagnosis. I hope they sort out the system soon

zzzzz Tue 20-Sep-16 19:22:48

I don't think it's about how severe the disability is, more how efficient they are and the numbers they are dealing with.

youarenotkiddingme Wed 21-Sep-16 22:00:21

zzzzz is totally right that school will support if they want. I've had experience of obstructive crap non existent support with a dx coming from juniors with 16hours ta support!

Please don't spend the best of £1000 just to see if it's you! I'm sure it's not. It's probably your DD reacts better to the routine and structure of when school is on. Could you try visual timetables during holidays?

Also have a look at autism in girls - it can present differently and knowledge is power. Rosie who did the news round special is very good to watch - it's on you tube.

TripleRocks Fri 23-Sep-16 07:47:00

I have looked into the differences with girls, which is really the reason why we are where we are. I feel she fits the profile but at the moment this is only my hunch via Dr Google.

I will look up the YouTube video, thanks.

I had a heart to heart with DH last night and whilst he's interested and open minded about what I've found out, I think we will struggle to really get on the same page about this without a diagnosis. In fairness to him, I could be barking up completely the wrong tree. Taking into account where he is on this, I think dx could be an important piece of the puzzle for how we tackle this as a family.

I also think that DD could really benefit from a dx which would enable some honesty and frank conversations about where she's struggling. At the moment I suspect, but that doesn't feel enough to go on.

notgivingin789 Sat 24-Sep-16 21:08:48

Once referred a diagnosis takes 6 months in my borough; though you always have to "remind" them, incase they forget.

DS has been assessed and diagnosed (kinda) by the ages of 2, 3, 4 and finally 5. I'm glad I had DS assessed young; as now that he is 6 and very demand avoidant; he would not of coped with the amount of assessments ! Even now his having more assessments done; but that's for other things unrelated to his diagnosis.

Having a diagnosis for DS didn't do much in terms of accessing support. Well they were things out there; but no-one told me! The most information I got was from the internet, reading what other parents have been through accessing support. Though; having a diagnosis did help DS get into a specialist school..which is very crucial !

Also, please when someone tells you to support your DS needs and not focus on the diagnosis. PLEASE DO THIS! I didn't listen or get it, I was so worried about his diagnosis and regrettably didn't seek out what I can get help with his needs. DS did have speech therapy on the NHS from 2-4. Which helped, but in no means was this enough. I did do a lot of speech therapy type of stuff from the teachmetotalk website, but I wanted that extra support from a professional. I didn't know there was such things as specialist nurseries, private social groups, more ASD type private speech and language therapist, sensory integration specialists occupational therapists, I wish I applied for DLA when DS was around 3ish, so he can get access support through the private sector. Though; I did realise this when DS 4 and did apply for a statement (when I was told by a speech therapist on the NHS that I should wait angry) appealed the statement, went to tribunal and DS is now at a specialist school (since 5 years old) and is thriving. Though I wished I accessed support more for DS when he was around 2/3 years.

Would I get a private diagnostic report? Nope. I would wait for the NHS and to make sure that my DS was still on the system. I would personally use the assessment money to get him support through the private sector or buy things that I know would help him.

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