Adult NHS Assessment Disaster

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

Parents
  • 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."

Reply
  • 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."

Children
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