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Contradictions post diagnosis

Eccentric1

So, I have a diagnosis of Asperger’s and have contacted Bristol Autistic Spectrum Service (who initially stated I was not on the Spectrum) and have now had an “overwhelming” response that My Asperger’s in not an Autistic Spectrum Disorder.

As NICE Guidelines say that Asperger’s is an Autistic Spectrum Condition then what is true?

Who can provide me some guidelines and identify support in a language that is black/white without contradictions?

  • That sounds weird...BASS have a pretty good reputation, and I'm familiar with the service in Bath which has been positive (got diagnosed by them, have attended their advice service and post-diagnosis group). Whilst my diagnosis is officially ASD, I got given info about Aspergers with my diagnosis so it seems bizarre if the Bristol lot for some reason is insisting Asperger's isn't an ASD. The even say on their website one of the things they provide is 'training in Aspergers'.

    They do say they need an assessment report from an assessment in line with NICE guidelines though in order to use their services, so maybe that could be the issue?

  • This might be useful: https://www.nhs.uk/news/mental-health/aspergers-not-in-dsm-5-mental-health-manual/

    Basically, in DSM-5 (DSM is 'Diagnostic and Statistical Manual of Mental Disorders') Asperger Syndrome was 'absorbed' into 'Autistic Spectrum Condition' and as says is now usually diagnosed as 'Autistic Spectrum Disorder/Condition: Level 1 - requiring support'.

    So in a way, they are right when they say 'Asperger's is not an Autistic Spectrum Disorder' - but only because it's essentially been renamed... to be honest, the fact they aren't 'up to speed' with the changes suggests that they don't know what they're talking about.

    In DSM-4 and earlier I think Asperger's was separate from ASC/ASD but now it's been absorbed...

  • I'm surprised that you were diagnosed with Asperger's because now people are diagnosed with ASC Level 1 - Autism Spectrum Condition.

    In my case though, because a Psychiatrist diagnosed me with Asperger's (he would not be a Autism Specialist) - he referred me for to a private organisation specialised in performing Autism assessments for adults Hampshire and Surrey Psychologists). They gave me the post assessment of ASC Level 1, but they did add a note to say that some people would.refer my condition to Aspergers.

    So it looks like they have diagnosed you under the old definitions but it does sound rediculous to me that they can't see they are part of the same diagnosis??? 

  • Asperger's is part of the autism spectrum. Could the service be questioning the validity of your diagnostic assessment, rather than saying that Asperger's is not part of the autism spectrum?

    It might be worth contacting the NAS helpline to see what they say.

    When I looked at the website for the service you mentioned, it appeared that they are an NHS service that is part of an NHS Trust. It might be worth contacting the trust - if they have a PALS (patient advice and liaison service) you could try them first before you make a formal complaint, which is also an option. It looked like they had criteria to be able to use their services which included having an assessment report for a diagnostic assessment carried out along NICE guidelines. So if your assessment didn't fit their criteria you might be out of luck. If however they are not applying their criteria fairly then that would be good grounds for a formal complaint.

    My own experience is that NHS services, especially in mental health, have a gatekeeping mindset which is less about need and more about avoiding accepting referrals depending on demand. It's frustrating to be bearing the brunt of this, and complaining is not an easy option.