Adult Asperger's Help

Hi all,

Please keep on point. I appreciate people may have had difficult experiences but do remain civil. I've made an edit to a post in this thread for breaking the rules.  

Hope said:

I did not expect such a heated response - I was just airing an opinion; each to their own.

I have Aspergers, and was diagnosed on the NHS. Yes, there was a long waiting list, but I was allocated a support worker while I was waiting, and they went the extra mile for me.

The NHS is not perfect (underfunded, and increasingly privatised), but this comes down to politics. In the main, the NHS does a very good job in tough economic circumstances, and we should support it because otherwise we would end up with a USA type system. Before the 40s, there was no NHS, and people got very sick because they could not afford a doctor.

The mental health system has many flaws, but I understand that this has its roots in political (free market) decisions and spending cuts; we should not throw the baby out with the bath water.

IntenseWorld: Were you diagnosed by a not for profit charity?

The trouble is, you are assuming everyone else had or will have, the same fortunate experience you did with the NHS.  I read around enough to know that you have been very lucky.

It's all very well having an NHS, but if it's failing, you may as well have none as the damage can be enormous and destroy lives.  When the complaints far outweigh the commendations something is very wrong.  They do say, "you get what you pay for".

I stated further up the thread who I was diagnosed by.

As I said, let's get back to the original purpose of the thread.

I did not expect such a heated response - I was just airing an opinion; each to their own.

I have Aspergers, and was diagnosed on the NHS. Yes, there was a long waiting list, but I was allocated a support worker while I was waiting, and they went the extra mile for me.

The NHS is not perfect (underfunded, and increasingly privatised), but this comes down to politics. In the main, the NHS does a very good job in tough economic circumstances, and we should support it because otherwise we would end up with a USA type system. Before the 40s, there was no NHS, and people got very sick because they could not afford a doctor.

The mental health system has many flaws, but I understand that this has its roots in political (free market) decisions and spending cuts; we should not throw the baby out with the bath water.

IntenseWorld: Were you diagnosed by a not for profit charity?

I know my local private hospital consultants does a private diagnosis and then uses the public NHS treatment jumping the list for you, because they are same doctor at the NHS hospital working 2 days a week.

See how it works ? if you have money, you can jump the quenue, the reason being that because you have got a diagnosis you go under NHS government target dates for treatment so the clock starts ticking(remember the private consultant is the same one working at the NHS, so it is the same doctor in charge of both places), whereas you just wait and cough up blood for months or years under a NHS GP referrel system of diagnosis and then emergency treatment on near death.

My friend had a problem with his hip,, spoke the GP, told it was just muscles,, after a year of pain, in agony referred to the NHS hospital told it was muscles again. In so much pain, pay £3000 for a private assessment and MRI, conclusion it was fluid had escaped from the hip bone, operation would cost £6000, or he could be added to the consultant NHS patient list and got it repaired under the guise of the NHS in 2 months. Even got a single room !   One private bung and one pin later...

I heard on this site that a private autism diagnosis may not be accepted by the NHS,,, maybe depends on which in quotes "PRIVATE" doctor you use. [Posted edited]. See how it works,, for a price you can access the NHS system via a private door. I know that sounds racist, BUT IT IS THE TRUTH.

@Azaezl: OMG you sound like you had just as much of a crap time with your CAMHS as we did with our CAMHS and my eldest daughter.  This is why people feel forced into going private.  Some people go on holidays, some people buy a new car, some people...unfortunately have to pay their hard-earned money on getting adequate health treatment that the NHS fails to provide.  I worked for years, paying into the system, my husband still does and still, we are failed by services.  Makes my blood boil.  There is a saying "Live in hope, die in despair" and Hope, you chose your username clearly hoping for the best, sadly our NHS frequently does not provide the best, or even acceptable treatment.

"walk a mile in a man's shoes before you judge them"

I'd like to echo what intenseworld has said, however we did pay for our daughter's assessment, although not us directly, my in laws paid for it. We were not willing to put ourselves or our daughter through even more horrendous treatment via CAMHS and she needed help asap not years down the line when CAMHS decided she was "severe enough", from their point of view because she didn't have meltdowns in school she was fine (and we were actually told that she couldn't be on the spectrum because autistic chidlren cannot mask their problems, i.e contain themselves in school and meltdown at home)

Since being diagnosed she's now getting help in school and has improved greatly, we are going for a more in depth SALT assessment next week to assess how much background noise affects our daughter. Her original SALT assessment was not requested by CAMHS but by her OT who could see her autistic traits and was disappointed with the failures of CAMHS so referred her directly hoping the results of that would help them see her traits (because another medical person would be stating she had autistic traits).

@Hope: FYI, I did not have to pay for my private assessment.  I cannot afford the costs of private assessment any more than any of those you mention.  Do not make assumptions before checking your facts.  Even could I afford a private assessment, I would still not take kindly to being judged for it, you are not taking into account that some people may have funds not through being in a well-paid job or having a silver spoon in their mouths, but by having saved years or been left a small amount in a will etc. and with the NHS in such chaos and underperforming (in more ways than one) many are left without a choice!!  Let's not get all left-wing now!

I was left with no choice myself, due to my local NHS service being incompetent and failing to diagnose me following not one, but two sub-standard assessments which were cursory, did not access past history and they even lied about who was present.  I virtually begged them to reassess me if they were unwilling to accept my private diagnosis (going as far as funding panels plus an appeal), but they refused.

I did not want to make this thread about me, but your comment annoyed the hell out of me so I had to respond.  Let's stick to the general subject of the thread now.

Have you considered getting an NHS assessment, which you are now entitled to by law, under the Autism Act. Waiting lists can be long, but it would be worth it if you could then benefit from support.

The problem with private diagnoses is that they exclude the poor and people who rely on benefits or are otherwise economically disenfranchised. The NHS is a public body, and does not discriminate against people on low incomes. In a sense, you are already enjoying a benefit because you could afford private treatment, but not everyone can afford this. So I can understand why the NHS might be wary; it is like preferential treatment.

Hi all,

Just to confirm Elaine and Dr Nicholson are listed on the autism services directory. As with all listings on the directory we remind you of our disclaimer.

http://www.autism.org.uk/directory/disclaimer.aspx

I've had correspondence from Simon Baron Cohen's organisation in the past where the reply is from someone on his behalf.

If it is the case that the NHS will recognise privately obtained diagnoses, would Simon Baron Cohen perhaps be prepared to state this publicly in the media?  Where is it clear and unambiguously stated for the nation's ears.

It would "put the cat among the pigeons" as the metaphor goes in that it would obligate Government and the NHS to contradict or concur. And it would alleviate the misery of many people who believe themselves diagnosed but are frustrated by denial of Health Services recognition.

I wasn't impressed by the "on his behalf" replies that I got on other issues.

Azpie said:

The comment was not about this site, it was from an email she sent to Simon at the beginning of July, I'm guessing a client of hers probably had reservations about getting diagnosed "privately".

"Recognition of private diagnoses depends on whether NHS clinicians want to or not, no matter what the law (or even NHS PALS) says. The NAS cannot and does not enforce the law on autism, no-one polices it in fact. They get away with what they want to.

This I agree with so much! I was trying to point out that it is a valid diagnosis and should be taken as such. If I were you intenseworld I would be complaining about any NHS service who will not accept your diagnosis (it will all boil down to money, they don't want to accept your diagnosis because then they have to offer you services which costs them money, so if they refuse to accept your diagnosis outside of the NHS they are saving themselves money). Sometimes you have to be your own advocate, particularly when places such as NAS don't seem to help in situations such as this. You have to kick up a fuss before you usually get anywhere with the NHS.

I agree, it should be.  But as we know, in practice things are not as they should be with the NHS.  I did complain via NHS PALS...a useless experience.  I then got an advocate to put a complaint on my behalf to the PHSO (Parliamentary Health Services Ombudsman).  That is pending a decision, but they keep sending me holding letters...ironically because they say they are overwhelmed with complaints and haven't even looked at it yet (sent at the beginning of July).  You couldn't make it up.

"A client of mine said that some Mums were saying that only a diagnosis done at a Hospital and under the NHS is acceptable."

Is this meaning people on this thread?  As this is not exactly what has been said.  What has been said is whether a GP can diagnose, no-one said it had to be carried out at a hospital or only by the NHS, from recall.

I have personally been told by our local CAMHS (lead clinical psychologist) that the NHS does not recognise private diagnoses.  However, I do know this is incorrect as I checked with PALS.

Our local adults diagnostic centre, run by supposedly highly qualified psychiatrists who are experts in the field of neurology, categorically refuse to recognise my private diagnosis.

My diagnosis was given by a private psychologist with 35 years experience (including at consultant level in the NHS) and who undertook gold standard training with a colleague of Simon Baron-Cohen, who trains clinicians UK-wide how to diagnose ASCs, following a highly thorough assessment.  My diagnosis was also verified by the aforementioned colleague of Simon Baron-Cohen.

Prior to any clinical diagnosis I had a private non-clinical assessment with an Asperger's expert who has an MA in autism and runs an Asperger's consultancy, has published books that have been endorsed by Tony Attwood and also works for an Asperger's charity.  She concluded I have Asperger's and told me she couldn't legally call it a diagnosis as she is not a clinician.

Despite all this, the NHS diagnostic centre still refuses to recognise my diagnosis, and because of this, adult mental health services won't recognise my diagnosis either and they are refusing me an autism care pathway that I am entitled to in law.

(I have also had email correspondence with Simon Baron-Cohen regarding adults being entitled to a diagnosis despite not being able to provide childhood information BTW.)

Recognition of private diagnoses depends on whether NHS clinicians want to or not, no matter what the law (or even NHS PALS) says.  The NAS cannot and does not enforce the law on autism, no-one polices it in fact.  They get away with what they want to.  I can't see Simon Baron-Cohen or Elaine forcing the NHS to accept a diagnosis if they don't want to.  Obviously services depend on your diagnosis.  Buyer beware!  Get a private diagnosis at your own risk.

I spoke to Elaine about all of this as I didn't want to give out incorrect information about her husband so this is what she had to say about it;

Geoff has undertaken a course of study with Fiona Scott in Cambridge in the ADI-R method (and is shortly doing the ADOS also). As for assessments, they should only be done by people with appropriate qualifications in autism, like a Masters in Autism for instance.  

A client of mine said that some Mums were saying that only a diagnosis done at a Hospital and under the NHS is acceptable.  I wrote to professor Simon Baron-Cohen who is at the very top of clinicians in the field of autism (he's also a colleague) and you will read what he said. Also in addition, the NAS hold a database of approved counsellors and diagnosticians and these people have to prove beyond reasonable doubt that they have successfully undertaken a course in autism etc. You will find both mine and Geoff's on that database.

"Hi Simon.  Could you advise me please? Some Mums have it in their heads that if you get a diagnosis for autism outside of the nhs the nhs won't recognise it. "

"Dear Elaine,

 Professor Baron-Cohen has passed your email to me and asked me to reply on his behalf.

 He has said that he can reassure you that this is incorrect information. I hope this helps."

So as you can see Dr Nicholson is more than qualified and studied under  a former research associate of the autism research centre. And word from a man who is supposed to be an expert in this field who confirms that a diagnosis outside of the NHS will in fact be recognized. I hope that clears everything up.

She sounds great and very committed.  I don't dispute any of that.

I am prepared to stand to be corrected if a GP can diagnose, but it's the first I have heard of it.

There is a reason psychologists and psychiatrists are the usual professionals to diagnose, because their expertise is to do with the mind and neurology. (Although I have first-hand experience of the incompetence of a few of them)

A GP is a general practitioner and is unlikely to have qualified in psychological/neurological matters.  That's not to say that he could not have a lot of relevant experience and training in the clinical tools of course.

I did try Googling to see who can legally diagnose but nothing much comes up.

My daughter was diagnosed via action for asperger's after we were treated appaulingly by the local camhs team(they initially refused to do an assessment and then did a botched ADOS and ignored the SALT/ OT reports that were "consistent with a child on the spectrum").

We met with Elaine back in November 2012 for a pre-assessment, she observed our daughter and asked us as well as her many questions before coming to the conclusion that she was likely on the spectrum and a formal ADI-R assessment should be undertaken. We had the ADI-R in January this year (I also forwarded OT reports etc) and she was diagnosed with ASD. During that very very long appointment we were asked very extensive questions about our daughter and again the doctor observed her behaviour, at the end he scored her and she was 3 times the cut off point for ASD.

We have been to see Elaine a few times and she has helped us on several occassions ranging from DLA forms, to sending letters explaining about our daughter's condition to her urologist to counselling sessions for our daughter. She's also been to more informal things, a drama afternoon that was specifically for kids/teens on the spectrum, we more recently went to a high tea afternoon (which was a fundraiser for the new sensory room) and Elaine & co had set out lots for children & adults to do and also had a "chill out" area for any person (child or adult) who needed somewhere to get away from the crowd, noise etc. This sunday they are having a learn to fish session and a few weeks ago they had a minecraft afternoon. 

Elaine also tries to tailor everything to the individual, so for example when we went to see her the first time my daughter had expressed her love (obsession) for monster high dolls and the next time we went Elaine had bought a few. She has lots of things geared towards obsessions so that when someone goes in for whatever reason whether that's an assessment or counselling there is soemthing for them to focus on if they don't want to sit near Elaine or make eye contact etc, she has lots of fiddle toys, puzzles, lego etc.

Both Elaine and the GP who did the assessment (her husband) have vast knowledge on autism and not just in a clinical setting, they have a son with Asperger's so they know on a personal level what it is like to have a family member with an ASD. They also get to see just how it can manifest differently in girls then boys due to dealing with so many people of both sexes on the spectrum. I was worried we would get screwed again because our daughter's obsessions are cosidered "normal"(teddy bears, monster high dolls, movies) but Elaine & her husband see past those sterotypes and understand that it's the intensity NOT the subject matter. Or when we were asked if she had any unusual obsessions (this was seperate to the previously mentioned ones), we were both unsure of what they meant by unusual and once given examples(of something their son became obsessed with) we were able to relay lots of things (such as her obsession with bins at the age of 3, her "collection" of sweet wrappers at the age of 4  etc). 

It was all a very plesant experience and exactly how an assessment should be, you shoudn't (as happened with CAMHS) come out feeling personally attacked for having Asperger's or ignored because your child doesn't fit their sterotypical view of AS. I would highly recommend their services to anyone, my husband is hoping to go to them at some point for an assessment as we (and Elaine) believe he is also an aspie like myself and our daughter. We haven't had any problems with it being seen as an official diagnosis either, I don't know how different it is for adults but so far our daughter hasn't been denied anything because her assessment was done by a GP. The person at CAMHS who assessed our daughter using the ADOS was not a clinical psychologist or psychiatrist she was a paediatric cardiologist who had been trained to use the ADOS. The difference between the two of them is that Dr Nicholoson lives with autism 24/7 he observes his sons behaviour day in day out and he regularly assess' children with ASD(I think he does it most weekends). The cardiologist however works with hearts day in day out, has no personal connection to autism and holds a once a month autism clinic in which she does assessments...who do you think is more likely to recognize autism? 

My own assessment was done at the CLASS clinic in Cambridge (right next door to the autism research centre) and the Dr who assessed me was a "speciality registrar" again not a psychologist/psychiatrist so I'm not sure if that is the law, I think it just tends to be that field that has more autism trained specialists.

Also just a note re the sensory room, they have only recently aquired that room and are raising funds as quickly as possible to kit it out. Yes it has strip lighing at the moment but it clearly states on the website that they are hoping to get LED lighting, it's just a matter of funds, I know thanks to the high tea event they have just purchased a sensory dark room suitable for adults & children.

urspecial said:

Also (don't want to put her on the spot) but IntenseWorld has mentioned a conference in York on how useful the Autism Act 2009 has been (or useless-ish ) and the founder of the charity is guest speaker along with others from NAS etc http://community.autism.org.uk/discussions/health-wellbeing/living-spectrum/quality-life-has-autism-act-made-difference-conference-

By the way, is it due to NICE guidance etc that states that only Clinical/Educational Psychologist or Psychiatrist can make an Autism diagnosis. This I have felt has happened in most cases I'm aware of but don't know why from a guidance or legal basis this, though I do understand it from a clinical basis. urspecial

Ha, ha!  how ironic is that!  No worries, us Aspies are up front and open.

I believe it's the law that only a clinical psychologist or clinical psychiatrist can diagnose.

Woops, tried to create some unity and got the opposite  

IntenseWorld is right about the parents side of things and thanks for clearing up the ADI-R matter.

Longman, you're right on the qualifications and experiance thing, it's just becuase they are a registered charity, I thought it might be a bit more repitable than joepublic.com website, if you get what I mean. But yes, there definatly needs to standard policies for accredited training, qualifications and experiance to work with such groups.

Also (don't want to put her on the spot) but IntenseWorld has mentioned a conference in York on how useful the Autism Act 2009 has been (or useless-ish ) and the founder of the charity is guest speaker along with others from NAS etc http://community.autism.org.uk/discussions/health-wellbeing/living-spectrum/quality-life-has-autism-act-made-difference-conference-

By the way, is it due to NICE guidance etc that states that only Clinical/Educational Psychologist or Psychiatrist can make an Autism diagnosis. This I have felt has happened in most cases I'm aware of but don't know why from a guidance or legal basis this, though I do understand it from a clinical basis.

urspecial

Tailormade autism services in specialist settings backed up by an academic and health ring. It can't be any worse than no local services or pretend services(NAS). I hope more people follow in her footsteps and do the same, especially if they have an autistic child. I like the look of this, like autism safehouse.  Good luck to her. I hope the NAS do not ring fence her and she can franchise out and then form a real autistic national society.

I'm sure I noticed some other typos on the website! 

I'm very pedantic about spelling and presentation too I'm afraid.  But typos are a world apart from misleading people over diagnosis.