What is going on with diagnosis in the UK?

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tfw7
Tufted Titmouse
Tufted Titmouse

Joined: 17 Feb 2018
Age: 54
Gender: Female
Posts: 44
Location: Cornwall, UK

09 Aug 2018, 11:01 am

I'm in the South West and opted to be privately assessed as the NHS waiting list in my area is 18 months.
The process was incredibly quick, just 1 month from me self referring to my assessment, and then a further 4 weeks until I received the final report.
I had 2 lengthy questionnaires to fill in and return by post prior to my appt, and a further 2 to fill in and bring with me. I was asked to name someone, eg a parent, who could be interviewed to support my diagnosis, but I declined, and this obviously was not an issue. I had a single 4 hour appt and received my diagnosis of Aspergers (they still use ICD-10) at the end of this. I was given a letter to show my employer and some support booklets etc.
The full report (a very lengthy summary of our conversation, plus reference to my questionnaires etc) was emailed to me just a few days ago to check I agreed with it, and will then be sent to my GP. Part of it says:
"Please note that in meeting the diagnostic criteria for Asperger Syndrome, in accordance with The World Health Organization’s International Classification of Diseases (the ICD-10), criteria would also be satisfied for a diagnosis of an Autism Spectrum Disorder using the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM V).


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was self diagnosed aspie .... was awaiting formal assessment... now formally diagnosed - yay!


Trogluddite
Veteran
Veteran

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Joined: 2 Feb 2016
Age: 55
Gender: Male
Posts: 3,075
Location: Yorkshire, UK

13 Aug 2018, 3:37 pm

My diagnosis in West Yorkshire seems to be rather unusual, in that I was assessed by the DSM-V criteria and formally diagnosed with "Autistic Spectrum Condition Level 1, no intellectual impairment, no language delay" (the UK tends to prefer "condition" to "disorder"). The assessment process was very thorough; several questionnaires initially, four one-hour-plus interviews (one with an occupational therapist as well as the psychologist), and family interviews (by post/phone as they live a long way away.)

However, a friend of mine, referred by the same GP practice only a few months before I was, was assessed somewhere else locally where he had only a single interview of less than two hours, no parental involvement, and was diagnosed with "Asperger's Syndrome" (i.e. ICD-10).

Both of us were not diagnosed until our mid-forties, and we both had a long history of mental health problems and a few misdiagnoses along the way. In my case, there had been multiple indications of an "underlying disorder" by CBT counsellors spanning over two decades, none of which had ever been followed up. Even after an autism diagnosis was first suggested, it took three attempts at referral by my GP before I was finally accepted - the first two, to the same unit attended by my friend, were rejected because the CCG refused funding.

The unit which diagnosed me is well known to have been having difficulties dealing with the number of referrals which is it receiving, as reported by our local HealthWatch organisation last year (link). I was lucky that I was referred very soon after the unit was set up, otherwise I might have been waiting a year or more to be seen. None of the follow-up actions which the unit recommended have happened (occupational therapy, post-diagnosis counselling) after waiting over three years, as they do not have the resources to provide this while trying to shorten their waiting times.

The Act of Parliament called The Autism Act 2009 was supposed to make it mandatory that all UK local authorities had a complete pathway for identifying, diagnosing and supporting autistic adults. As yet, the only action taken locally has been to create the extremely underfunded diagnostic unit, but none of the other provisions of the Act have been implemented at all (in particular that having a learning disability should not be a requirement for autistic people to receive social services support - I have been denied access for exactly this reason very recently.) The Act also does not specify any best practices for diagnosis or support, which seems like a completely missed opportunity, given the huge differences in the way that assessments are conducted from place to place and between different providers.


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