Looking to go private for a diagnosis on aspergers

Before you go down that route you should try the online test at aspergerstest.net/.../

This test is pretty reliable and can give very clear indications in some cases. Many people on the forum have done this and posted their results - I guess we are a bit open but the forum is completely anonymous.

If you go privately then it can cost up to £1000. If you have a real need for a diagnosis then that might be very cost effective, if it is curiosity then it might seem expensive but the people who can work this out and have enough authority to be believed are not cheap.

I'm pretty sure my husband is on the spectrum and I'm beginning to wonder about myself (we have a son originally diagnosed with NLD and later re-diagnosed with AS). I sent my husband to the GP to get referred but he was too honest (a sign of AS?) about 'my wife sent me' and so the GP did not refer him. I now want to go via the private route with assessments for both of us, but don't know how to find a psychologist who would test us and not charge a fortune. I feel knowing whether either of us is on the spectrum would help our marriage. I'd like to give him the appointment as a Christmas present. Anyone got any recommendations?

Hi Guys

I know this is a REALLY REALLY loooooong time after the original post. I just wondered what your outcome was with your son . I am in a smiliar postion although i have been referred and had an initial consultation i know my son will not be given a diagnosis through this paediatrician. She actually said children with aspergers can live perfectly normal lives and grow up slightly quirky and eccentric rather than as a problem. She said he displays signs of being ritualistic and anti-social but was more obsessed about the fact he gives eye contact. He does this because he has learnt to, he isnt comfortable doing so and will not give eye contact to children because he knows he does not 'have to' .

so anyhow, rather than pushing and fighting and waiting forever and a day i wanted to pursue the private diagnosis route but wanted to know who i could go to and would it be accepted by school for the purposes of reasonable adjustments and funding ? i am worried aboutgoing through it all to be told it isnt acceptable and he would need the NHS diagnosis.

He has been assessed by an educational psyc privately , the outcome of which was that he ' tested positive ' for ASD, in her view of a High functioning Varient - most likely aspergers.

Any advice would be greatly appreciated. I am so tired already and very upset and distressed, he is a constant battle and whilst i feel so lucky to have such a wonderful intelligent amazingly different boy, i feel both I and the school will need some help.

Well, as I said in my previous message, there is plenty on the NAS website about the failings of CAMHS - and this is UK-wide:

www.autism.org.uk/.../search results.aspx

Then there is this:www.independent.co.uk/.../nhs-failing-to-support-children-with-autism-1994411.html

...and this: www.thelearningdisabilitieself.net/.../

I don't need to say more than the word "Winterbourne" to illustrate other NHS failings.

My area is supposedly at the cutting edge of a lot of things, it's a large, progressive city.  And still there are such failings, and I don't believe they are uncommon either.  The very fact that my GP was unaware of the law relating to reasonable adjustments likely means that most GPs are the same.

You only have to look at patient reviews to see that A&E does not cater for people on the spectrum, frontline NHS workers are unaware of autistic traits and what adjustments they need to make, and the NHS rarely employs specialist diagnostic clinicians.  There is a culture of hiding things under the carpet too as we all know and they will not admit when they have made a mistake.

PALS is a joke, it's not even independent - and neither is the PSHO, and it is unregulated.

I could go on.  I'm sure there are one or two areas which do well, but they are probably a rarity.  I'm sure I read somewhere recently that many health authorities have also still not initiated the autism care pathway and pathway to diagnosis that they are supposed to have in law, according the the Autism Act and the Autism Strategy.  None of it is worth the paper it's printed on, most people you speak to in the NHS have no idea of the law and pay lip service to things that you, as the patient, need to inform them of they are supposed to be doing.  This is the NHS culture, and it's endemic across the UK.

I'm sorry to hear you are having such a difficult time all round. I can hear your frustrations. I don't know which area, you live in and this isn't the forum for sharing but the examples you have given sound specific to your local teams. I'm not saying that there  isn't examples from other areas that echo yours, but at the same time there are some areas that are getting it right. I hope things improve for you and your family soon. 

Linzi 

Oh well I can disagree with you there again then.  Our local CAMHS have been useless as well (and the NAS has documentation on it's website stating that a high % of parents of autistic children feel CAMHS is failing them).  My eldest daughter categorically has AS (my other child is diagnosed with autism) and they have failed to diagnose her.  They admitted she has autistic behaviours but have relied heavily on the questionnaire (against the advice of Dr Judith Gould on this website), are clearly unaware of presentation in females and conducted a sub-standard assessment and made an "inconclusive" decision.

In the meantime we are left with no support for my daughter who desperately needs it and I have given them so much information on her including specific examples showing how she meets the diagnostic criteria.  They ignored all of it at her assessment and sent us an assessment report full of factual errors which they refuse to amend.  They have misreported what I said.  They denied the genetic risk she has being applicable even though NHS NICE Guidelines state a sbiling is an increased risk, they refuted it.

As for CCGs this all happened before the new CCGs came into existence.  regarding myself, I complained to PALS who are a chocolate teapot, they were intimidated by the clinicians and promised something they then backtracked on.  The reason they gave was the same reason I was complaining about!  Talk about paradox.  I went to the Commissioning Panel for funding for out of area reassessment and they refused it and also refused to answer my questions about what they based their decision on so that I could make a full case to the PHSO.

I have already been in direct contact with the commissioning manager about my daughter, means well but is again being influenced by CAMHS because they are "the experts" yet they are the ones who have failed us.  They all stick together.

To top it all, my GP is refusing to follow the law (in at least 3 acts: Disability Act 2005, Health & Social Care Act 2008 & Equality Act 2010 [I think]) in allowing me reasonable adjustments which people with autism and/or mental health are allowed in law.

He also does not read vital correspondence I send him proving my diagnosis 9and other things) and makes false claims because he hasn't read them and is just making himself look stupid in the process.

And then there is my youngest child diagnosed with autism.  If I told you the palava the NHS have created over things they should have done and what I had to fight for you would understand.  And my local parent partnership group tells me that all the parents of SEN children they speak to tell them the same, they have to go through hell fighting for what the NHS and other services are supposed to give them in law.

The NHS does not follow it's own Charter and rules.  Like I said, useless.

I completely agree with Hope, overall we have a very good health system in comparison to the rest of the world.. It is far from perfect but it is trying to improve and meet the ongoing needs of the community with very little funding for resources or service development. I do however acknowledge that nationally there is a large discrepancy between NHS services available for diagnosis / support of ASD in adults compared to those available children. what people often fail to understand is that the services offered in each area are subject to what the CCG's (clinical commissioning groups - made up of GP's) have instructed teams to offer. The clinicians and service managers are completely restricted by what services the CCG's have asked them to provide. If you are unhappy about services offered in your area it is most useful to feed your concerns back to the CCG. 

Hope this is useful?

linzi

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Actually the NHS is a very good system, not perfect and it could be better, but far better than the healthcare system in the USA and many other countries.This is not to devalue your experience, just to point out that we can too often take public health for granted. We can campaign to make it better, but it is still one of the best systems in the world.

Forget NHS NICE Guidelines.  The NHS pick and choose when to follow them!  I have been told by my advocate who contacted my local adult AS diagnosis clinic on my behalf, that the manager of the clinic stated NHS NICE Guidelines "are only guidelines and they don't have to follow them"!  (This was regarding how they are supposed to  carry out assessments!)

Until that point I had faith in NICE as I thought it was the law (silly me, should have noticed the word "guidelines" and the fact that it says they are "advice" for NHS authorities)

I previously contacted NHS PALS (the NHS complaints and patient liaison department) about the NHS recognising private diagnoses and was told that they can and do accept them, however they would expect a clinician in the field to be the one to do so - and that is at their discretion (what happened to rules and regulations!)

Despite a majority of 3 independent professionals diagnosing me with Asperger's the clinic refuses to acknowledge my diagnosis as valid because as the manager of the clinic (which failed to diagnose me 3 years earlier) said "it would undermine their professional expertise" so they are more bothered by professional snobbery than the NHS Charter (and other documents) which state the NHS must adhere to it's responsibility to put the needs and welfare of the patient first.  How can you have faith in a system like that.

The NHS is not fit for purpose, it's a shambles.

Many education authorities will not accept a private diagnosis made by one private loan working professional as this is not compliant with the NICE guidelines about ASD diagnostics. Equally the NHS have a duty to follow the NICE guidelines about best practice which is why there are often such long waiting times for families. My advice to anyone looking for a private assessment is to ensure you are commissioning the RIGHT assessment not just the cheapest assessment, as this is very often a false economy. Ideally search for a multi disciplinary team assessment as this is going to be more comprehensive and thus hold much more weight. 

http://publications.nice.org.uk/autism-diagnosis-in-children-and-young-people-cg128

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Hi Chazzer,

Thanks for posting on the NAS Community and hopefully you'll receive the support you need at this time.

On our website, there's quite a lot of information about diagnosis, in terms of: what to expect with diagnosis, how to make a complaint to the NHS and information for parents/carers after a diagnosis - http://www.autism.org.uk/About-autism/All-about-diagnosis/Diagnosis-the-process-for-children.aspx

I'd also suggest you give our Autism Helpline team a call. As well aas offering confidential support on your specific situation, they are able to point you in the direction of local sources which may be helpful. If you call 0808 800 4104, Mon-Fri 10-4pm.

Best wishes,
Mike, NAS 

quote "You could take your son off sick from school with stress and let them involve the education welfare officer and threaten to home-educate him (even if you don't mean it) so that they will sit up and take notice and find an alternative for him. There are small teaching units for children that can't handle school but you might have a big fight on your hands. Of course you would need a helpful friend or relative to look after your son whilst he spent any time off school if you have to work."

I ditto intenseworld wise comments,, because the NHS is a machine, like school, not a person, so why should your kid suffer through the hands of a bureaucracy. Get yourself a professional assistance, maybe even a lawyers letter to the NHS because 9 MONTHS IS A LOT OF TIME without support,, in fact maybe a support network put in place prior to "full" diagnosis as it will take long-term to set up a support plan anyway. MAYBE THE ANSWER IS FOR AN INITIAL ASSESSMENT TO BE CARRIED OUT, it will only take a hour, maybe you could pay for that and that can be your letter to send to the NHS as a priority case.

Good luck, maybe the NAS can point you in the right direction.

P.S tell them you can have a new baby in 9 months

They also have a consultancy/diagnosis service. Click on the Consultations tab. www.beginningwitha.com/consultancy.php

SharonSSS said:

I've heard of a place in Cambridge. http://www.beginningwitha.com/ about £800 for diagnosis.

This was recommended to me by our CAMHS psychologist when I asked if we could do anything to speed things up. We didn't do this though as we only had another month to wait for NHS and it was too far for us to go.

Sharon

That place you gave a link for (www.beginningwitha.com/) is a training place for clinicians.

I think you mean www.autismresearchcentre.com/clinics

Cambridge Lifespan Asperger Syndrome Service (CLASS)

...which only accepts referrals of patients from the Cambridgeshire and Peterborough NHS Region.

If I were you, I would ask the NHS department that advised you to go private, to have it in writing that they will recognise and accept a private diagnosis, and enable your son to access any NHS services required based on it.  This may sound silly as they were the ones who advised you to go private, but many PCTs don't recognise private diagnoses and you could still have to have the NHS assessment anyway.  At least stay on the NHS list if you do go private just in case, but you don't want to waste your hard earned money if it's all for nothing.  It could have been one person telling you in error, or they could be just saying it to fob you off, and unless you have it in writing there are no guarantees.

You could take your son off sick from school with stress and let them involve the education welfare officer and threaten to home-educate him (even if you don't mean it) so that they will sit up and take notice and find an alternative for him.  There are small teaching units for children that can't handle school but you might have a big fight on your hands.  Of course you would need a helpful friend or relative to look after your son whilst he spent any time off school if you have to work.

Thank you azaezl I will look on that web page,I hope your daughter is getting all the support she needs now thanks,

I've heard of a place in Cambridge. http://www.beginningwitha.com/ about £800 for diagnosis.

This was recommended to me by our CAMHS psychologist when I asked if we could do anything to speed things up. We didn't do this though as we only had another month to wait for NHS and it was too far for us to go.

Sharon

Hi Chazzer,

I recently had to pay for my daughter to have an assessment privately as the NHS people were messing us about so much. The place we went is a charity based in Peterborough - www.actionforaspergers.co.uk/home their prices are very reasonable compared to other places.

I hope your son gets the support he needs soon x

Thanks crystal12 I will give them a call tomorrow for a bit more advice on this,I have spoken to lots of people about this and I just feel I've not got much choice but to pay if I want my son to be seen and to be helped in the near future,it is a very sorry state for the nhs to be in not to be even seeing kids on there waiting list due to staff shortages and in the mean time my son is suffering,thanks for your reply.

hi chazzer - I've no idea how much it wd cost to go privately but am sure it'll be expensive.  Before you do anything, you cd ring the nas helpline to ask for advice.  I understand it can be engaged but you shd then keep ringing back.  It's important to have all the facts before you decide whether or not to hand over your hard earned cash.  If you've checked out all this in advance, fair enough.  There may be other posts on the site about people looking to go down the private route so it'll be worth doing a search to see what they're saying.  It's scandalous you are in this position, either because the nhs has not made enough provision in the past and/or because of cuts to the health budgets.