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Adult NHS Assessment Disaster

AlphaBetty

Hi

I wonder if anyone has had a similar experience to me.  I have an 8yr old daughter with a diagnosis of Asperger Syndrome.  It was myself who did all the reading and research and realised this was what the issue was.  2 years later it was confirmed.  Whilst doing all this reading, I not only realised this about my daughter, but also saw myself in so much of what I read.  I hadn't even realised before that my social anxiety, issues with socks, inability to filter background noise... could all be accounted for by something which had a name.  I just thought I was odd or broken.

I'd been dealing with anxiety and depression since my teenage years, but never sought any help until a few months ago.  My GP advised me to make an appointment with a mental health nurse, at the counselling service.  At my second appointment, the nurse decided to refer me for autism assessment.

A couple of weeks ago, I went for the assessment.  It was a disaster.  I never got across half of what I think I needed to, as I just answered the questions as they were presented.  None of the questions delved deeper.  E.g. When asked who I played on my bike with, I said it was the girl across the road.  The psychiatrist took this as meaning I had a friend.  She wasn't a real friend at all.  But, the psychiatrist never asked about the relationship and I never elaborated, half expecting her to ask more at a later stage in the appointment.  At the end of the assessment, she went outside with the student doctor who had been present throughout, came back a few minutes later and told me that I didn't have autism, as I could tell what my husband was thinking - we've been together for 25 years, speak a lot, so it's not surprising that I might be able to guess what he might think about certain topics.  She told me she'd decided this within the first few minutes of the appointment.  I can see now that the questions were posed in a way that she received answers that confirmed what she thought.  I was also told that my sensory issues were a 'red herring'.  Yet, she made a big deal of the fact that I can get round an ice rink, whilst ignoring the fact that I've been skating for 25 years and still skate like a beginner - I can't get her logic, one minute sensory issues don't matter, next minute balance is explored, then I'm told my balance is fine, when it's clearly not.  I can hardly go a bike and told her this, but she was more interested to hear that I played with a girl, when out on my bike.  The most shcoking part was that she started to ask about how I was with the housework, etc and wrote 'no problems' before I'd started to speak.  What she wrote couldn't be further from the truth and I did speak about it a bit, but she didn't even seem interested by that point.

I came out with a diagnosis of generalised anxiety disorder.  I do have anxiety, but I felt I needed to get to the cause of it, but was left with more questions than answers.

Is it usual for someone to be specifically assessed for autism and to come out with such a diagnosis?

Thanks

  • IntenseWorld said:

    Oh I had that too.  The arrogant psychiatrist said I had sound ToM because I described hiding something as a child.  My youngest who was 7yo at the time (and was diagnosed very easily) was hiding herself in hide and seek and leaving her slippers by her bed and something bulky under her duvet to trick me into thinking she was there!  I was also claimed I was socially engaging...clearly they had never heard of a social mask.  The reasons they gave that I couldn't have it were easily dismissable and it was like a foregone conclusion, anything I said was explained away dismissively with "oh everyone gets that" without any analysis of what I had reported.  Exactly like you had.

    It does sound very similar.  After I had been told the verdict, I said my daughter probably wouldn't have gotten a diagnosis based on that either.  I don't think she was too pleased, but I also think she probably thought the ones assessing my daughter might have got it wrong.  She was diagnosed easily as well.  I've been told by several people that I seem really confident.  Even my friend, who has a diagnosis of generalised anxiety disorder (and also happens to have a nephew with Aspergers - I really don't think that's just a coincidence) told me that he's always looked up to me, for being so self assured.  I nearly fell off my seat.  I do seem to come across like this, in small groups.  In larger groups, I don't speak at all.  I wasn't phased by the group in the assessment, as I was able to blank out the fact that the student was there, as she didn't say a word.

  • Oh I had that too.  The arrogant psychiatrist said I had sound ToM because I described hiding something as a child.  My youngest who was 7yo at the time (and was diagnosed very easily) was hiding herself in hide and seek and leaving her slippers by her bed and something bulky under her duvet to trick me into thinking she was there!  I was also claimed I was socially engaging...clearly they had never heard of a social mask.  The reasons they gave that I couldn't have it were easily dismissable and it was like a foregone conclusion, anything I said was explained away dismissively with "oh everyone gets that" without any analysis of what I had reported.  Exactly like you had.

  • longman said:

    Several things puzzle me about this. Firstly there was a student present. Were you asked if you consented to being observed by a student?

    Could NAS Moderators look into this "student present" situation because it looks highly irregular. If the assessment was carried out in a student training hospital, it is not unusual to have students present, but you should have the option not to have the student there. But I was not aware of any autism diagnosis centres that operate that way.

    This was an appointment with a mental health nurse but she had a student doctor observe. Again something fishy here. You've been palmed off with an inappropriate diagnosis situation.

    Also the questions asked are not what you should have been asked.

    Again NAS Moderators, please intervene, by contacting OP and finding out which hospital was responsible (I don't want to ask OP to post this obviously)

    Otherwise I echo IntenseWorld's points  - it is shameful the way some GPs and hospitals treat people over diagnosis. It ought to be a scandal, but it seems this disability is never going to get taken seriously, whatever Push for Action has achieved.

    In any other medical condition you'd have grounds for investigation for serious professional misconduct.

    Thank you.  As IntenseWorld says, the assessment was carried out by a psychiatrist, with a student present.  The nurse just referred me for assessment.  I was asked at the beginning if it was OK for the student to be present and I was fine with it.

    I get the impression that she was only going to diagnose me if I had the appearance of being lower functioning.  She seemed to only focus on Theory of Mind, when she was telling me why she'd made her decision.  She even said that I guessed what she was about to say and started to answer before she'd finished, which is odd, as, whether I have good TOM or not, I'm not a mind reader.  It also suggests that I interrupted accidentally, which sounds more like me.

  • I can flag it Longman, I'm not sure how unusual it is though. 

  • IntenseWorld said:

    I meant to say - I was asked in the assessment about any physical health problems.  I told her that I had been diagnosed with IBS.  She told me the IBS was down to my anxiety.  Meanwhile, in my head, I was saying, 'No, it's not. It's not even remotely related to my anxiety levels. During the most anxious period of my life, my IBS disappeared for several years and it was awful during a period that I was more relaxed. I can predict an episode more accurately, depending on what I've eaten'.  But, what did I say to her - nothing!

    You could have coeliacs disease, IBS is exacerbated by stress in many people (including me, as with my eczema) and coeliacs has very similar symptoms but is not stress-related.

    [/quote]I've had the blood test for this and it came back negative.  I know it's not uncommon for a false negative.  I definitely do better on a low grain diet, but I have problems with other foods too, e.g. baked potato with tuna mayo will result in a  'problem' about 1/4 of the time.  I've recently worked out that histamine is a major factor - I was getting a red face after every meal, as if I'd had a glass of wine - so I've been on a low histamine diet and just about cut out tea and coffee (not that I was a huge consumer of that anyway).  The red face has gone and it has helped with other long standing ailments too.  This may have been the cause of the bowel problems all along.

  • AlphaBetty said:

    I meant to say - I was asked in the assessment about any physical health problems.  I told her that I had been diagnosed with IBS.  She told me the IBS was down to my anxiety.  Meanwhile, in my head, I was saying, 'No, it's not. It's not even remotely related to my anxiety levels. During the most anxious period of my life, my IBS disappeared for several years and it was awful during a period that I was more relaxed. I can predict an episode more accurately, depending on what I've eaten'.  But, what did I say to her - nothing!

    You could have coeliacs disease, IBS is exacerbated by stress in many people (including me, as with my eczema) and coeliacs has very similar symptoms but is not stress-related.

  • longman said:

    Several things puzzle me about this. Firstly there was a student present. Were you asked if you consented to being observed by a student?

    Could NAS Moderators look into this "student present" situation because it looks highly irregular. If the assessment was carried out in a student training hospital, it is not unusual to have students present, but you should have the option not to have the student there. But I was not aware of any autism diagnosis centres that operate that way.

    This was an appointment with a mental health nurse but she had a student doctor observe. Again something fishy here. You've been palmed off with an inappropriate diagnosis situation.

    Also the questions asked are not what you should have been asked.

    Again NAS Moderators, please intervene, by contacting OP and finding out which hospital was responsible (I don't want to ask OP to post this obviously)

    Otherwise I echo IntenseWorld's points  - it is shameful the way some GPs and hospitals treat people over diagnosis. It ought to be a scandal, but it seems this disability is never going to get taken seriously, whatever Push for Action has achieved.

    In any other medical condition you'd have grounds for investigation for serious professional misconduct.

    Longman she had an initial appointment with the mental health nurse, her assessment was with a psychiatrist.

    I think the NHS tends to use psychiatrists more than psychologists for this type of thing (was in my case too), don't know why as they are generally arrogant and cannot seem to understand autism at all well, they pathologise things that don't need pathologising and seem to misdiagnose a lot.

  • Several things puzzle me about this. Firstly there was a student present. Were you asked if you consented to being observed by a student?

    Could NAS Moderators look into this "student present" situation because it looks highly irregular. If the assessment was carried out in a student training hospital, it is not unusual to have students present, but you should have the option not to have the student there. But I was not aware of any autism diagnosis centres that operate that way.

    This was an appointment with a mental health nurse but she had a student doctor observe. Again something fishy here. You've been palmed off with an inappropriate diagnosis situation.

    Also the questions asked are not what you should have been asked.

    Again NAS Moderators, please intervene, by contacting OP and finding out which hospital was responsible (I don't want to ask OP to post this obviously)

    Otherwise I echo IntenseWorld's points  - it is shameful the way some GPs and hospitals treat people over diagnosis. It ought to be a scandal, but it seems this disability is never going to get taken seriously, whatever Push for Action has achieved.

    In any other medical condition you'd have grounds for investigation for serious professional misconduct.

  • I meant to say - I was asked in the assessment about any physical health problems.  I told her that I had been diagnosed with IBS.  She told me the IBS was down to my anxiety.  Meanwhile, in my head, I was saying, 'No, it's not. It's not even remotely related to my anxiety levels. During the most anxious period of my life, my IBS disappeared for several years and it was awful during a period that I was more relaxed. I can predict an episode more accurately, depending on what I've eaten'.  But, what did I say to her - nothing!

  • Thanks.  Alexithymia is possibly at the core of the things that have gone wrong in my life.  I was bullied at school and my parents were only vaguely aware.  I was depressed all that time and would cry myself to sleep nearly every night, but nobody would ever have guessed.  Even when I was at work and had worries, for one reason or another, nobody had a clue.  I've even had a falling out with my in-laws, as I couldn't express how I felt about things they did or said.  After 20 years of having to put up with their insults and insinuations, I exploded.  We've not spoken for 4 years.

    I took my husband with me to the assessment, but he's likely on the spectrum too (probably why we got together in the first place).  He hardly said a word, but he thinks it was rubbish as well.  My parents would be hopeless - I get this from my mum and she can't explain herself very well (even worse than me) and my dad thinks I'm nothing short of perfect.  Writing it down is my best option, but I didn't know what she might ask and whether she would think I just copied it all from a book.  Funnily, as a parent, I always advise other parents to write it all down, as I did this for my daughter, but never thought to do it for myself.

  • You need to take someone in with you, write down things first so you can focus.  They don't seem to take alexithymia into account either and this is common on the spectrum.  Psychologists always seem better at this type of thing than psychiatrists.

  • This mirrors closely what happened with me with the NHS.  In fact, that attitude of your clinician was so similar to mine had the gender been different I would have wondered whether you went to the same place I did.  I was diagnosed privately following their failings.  I was given a box-set of labels for all the traits I have which all together equalled Asperger's.

    You can ask for a second opinion, you have genetic risk because your daughter has it and if your husband doesn't have any family history it's likely she got it from you.  Did you tell them your daughter is diagnosed?

    Did they speak to anyone who knew you as a child?  Did you take along any school reports or work appraisals that might have helped?  Did they speak to anyone else who knew you at any time in your life?  Did she use any clinical test such as the AAA?

    My belief is that you do have Asperger's from what you have said, and if I were you I would challenge it.  It is well-known now that females present differently to males but sadly so many clinicians are not educated on this.  She sounds like an arrogant idiot to be honest with no clue about females on the spectrum.  You might like my latest blog post on the subject: http://planetautismblog.wordpress.com/2014/04/29/females-with-autism-the-tragedy-of-ignorance/

    Here are the NHS NICE Guidelines for assessing adults on the spectrum (P16 onwards is the nitty-gritty you will want to read):

    http://www.nice.org.uk/nicemedia/live/13774/59685/59685.pdf

    1.2.16 Consider obtaining a second opinion (including referral to another specialist autism team if necessary), if there is uncertainty about the diagnosis or if any of the following apply after diagnostic assessment:

    • disagreement with the person, their family, partner, carer(s) or advocate about the diagnosis

    I've also copied you this information from my website(http://evolutian.wix.com/planetautism#!autism-research-and-media/c16fm):

    "Diagnosis Eludes Many Girls With Autism" article.  Information from the NAS on the struggle many females with autism have to get assessed and diagnosed.  Research does not include females, the diagnostic criteria were all researched on males!  Clinicians still have outdated views that autism is a male condition, and many females are misdiagnosed or fail to get a diagnosis.  Females present differently to males with autism.  THE NAS says: "The National Autistic Society’s Lorna Wing Centre have seen a steady increase in the number of girls and women referred. Because of the male gender bias, girls are less likely to be identified with ASD, even when their symptoms are equally severe. Many girls are never referred for diagnosis and are missed from the statistics. At The Lorna Wing Centre, emphasis is placed on the different manifestations of behaviour in autism spectrum conditions as seen in girls and women compared with boys and men."

  • Thanks for your reply.  She told me that she spent one day a week assessing people for autism, but the rest of the time she was a run of the mill psychiatrist.  I found it strange that she was a doctor, not a psychologist, as well.  The assessment was 90mins, including the explanation for the diagnosis.  I was told at the beginning that the result would be Yes/No/Maybe.  I was a definite 'No'.  A 'Maybe' would require a second appointment.  I just feel I blew the whole thing.  I got a sense early on that she was delving into my anxiety, as if this was the whole deal.  I know I only became anxious when I realised people weren't being nice to me and I didn't know why or what I had done wrong.  I even became selectively mute, in an attempt to avoid getting it wrong.  If I went for a second opinion, I think I might end up doing the same again.  I don't argue well.  If I think someone is in disagreement with what I'm trying to get across, I usually clam up and don't even try to argue with them.  I get too emotional and go off at tangents as well.

  • Was the Psychiatrist actually trained in Autism? Normally ASC is diagnosed primarily by a Psychologist, with possible Psychiatric back up, but usually Psychologists are the first port of call. How long did the assessment take? You can ask for a second opinion.