The Assessments ~ First Do No Harm (1/6)
2007 This year was when I first read about Asperger's syndrome (AS), when researching possible causes for our eldest child's challenging behaviours. I realised then from what I read, that our child and myself both had Asperger's, but had no idea what to do about it, so did nothing. It was a Eureka moment, I realised I didn't have anything wrong with me, it wasn't my fault that life had been so challenging.
2008, I saw a junior therapist, Judith Jarrett, at Sussex Partnership NHS Foundation Trust (SPFT) and asked her for a referral for assessment for AS. Despite her juniority, she was very resistant to refer, stating that she did not believe I had AS, for a bizarre reason that never made sense. I persisted with my request over several sessions and she eventually administered some tests including the Wechsler Adult Intelligence Scale (WAIS) and reading the mind in the eyes and referred me to the Sussex Partnership NHS Trust's East Brighton Neurobehavioural Clinic (NBC). My WAIS results were: superior vocabulary; weakness in maths; a significant difference between my verbal comprehension and non-verbal reasoning (which she attempted to explain away); a much better developed skill than peers at processing visual material and superior processing speed (something which clearly had enabled me to cognitively process what others found intuitive and helped me get through life, along with my vocabulary skills).
June 2009 I was assessed for AS at the NBC by Dr Nick Medford, no clinical tests were administered, the assessment consisted of simply a chat, focusing on my family background (although I had no idea then, how assessments were supposed to be done, so didn't know that this was sub-standard practice in assessing a neurodevelopmental disorder and therefore clinically negligent) and he failed to diagnose me.
Shortly afterwards, I contacted him and requested a 2nd opinion, because I knew I had AS and that I should have been diagnosed. I had no idea then that 2nd opinions should be independent and that sending me to see his own colleague from the same clinic, meant it would be a foregone conclusion.
August 2009 I was seen for the 2nd opinion by a colleague of Medford's at the clinic, Professor Hugo Critchley and Medford, also sat in on the reassessment, wordlessly, acknowledging me with familiarity when he saw me. I thought nothing of his presence at the time, but I did note he had a strange expression on his face, that much later I recognised was sheepishness or guilt. I paid more attention to this assessment, due to the outcome of the first one.
Again, no clinical tests were administered (I later found out that a test such as the ADOS-4, The Adult Asperger Assessment or the Autism Quotient and Empathy Quotient tests should be administered) and I had felt confused during the 2nd opinion at Critchley's attitude, which was stressfully dismissive. In retrospect at a later stage, it was clear to me it had been very much a foregone conclusion (being autistic, some things take a long time to dawn on me, due to processing delays and difficulties working out peoples' intentions). Examples I gave in response to questions were brushed off with, "oh everyone feels like that" and no analysis of my responses was made, nor additional questioning regarding my answers undertaken. I wasn't asked to provide further information or evidence, just asked why I felt I had AS. Due to what had happened with the first assessment, I had given them the results of some Asperger's online self-test results which all scored me for having Asperger's and Critchley just said "well they aren't validated" without reading, discussing or analysing them.
Critchley didn't seek to interview anyone else about me, not even my husband, who was waiting for me in the waiting room. I was briefly asked about someone who could verify information on my childhood, but due to my family situation, there was nobody I could suggest, which they simply accepted immediately and did not try to investigate any other avenues of obtaining this information. Nothing was explained to me about this information being important.
At the time, I did not know any of the above was substandard practice or was suspicious in any way. It wasn't until over three years later, when I had cause to research how autism assessments should be done that I was able to analyse why these assessments fell very short.
Critchley also failed to diagnose me, but listed a box-set of other labels (OCD, obsessional behaviour, hypersensitivity (to explain away my sensory difficulties), "rigidity of behaviour and social cognitive issues expressed as tactlessness and poor sense of humour, difficulty with developing and engaging friendships"), which were basically a breakdown of elements Asperger's. He said I had "...a number of behavioural features and anxieties which do overlap with people with autism spectrum disorders". My sensory difficulties and socialising challenges were attributed to "anxieties".
He also made some strange comments to me, when I first arrived he said "There are a lot of people contacting us thinking they've got Asperger's recently." and at the end of the assessment, "If you saw a few people you would probably find someone who would diagnose you." Now why would he say that to me if I don't have Asperger's?
The reasons he stated that I couldn't have Asperger's (and this is supposedly an expert), was because I appeared "socially engaging" (clearly not understanding the social mask, especially in females) and because I had described hiding something as a child, this supposedly meant that I had sound theory of mind!
During the time they were making amendments to errors in his draft report, I discovered the AQ test and took it, which scored me for Asperger's also. I emailed them the results of this test and it was ignored - and this is a validated test.
I had strongly believed I had Asperger's, and now didn't know what to do, I was left feeling confused at the inexplicable opinions, stressed and completely invalidated as a person. I had found out a vital part of my identity, an accurate explanation for why I was the way I was - and they were denying it. It was the start of a long period of me questioning who I was and wondering how I could match the Asperger's profile but not have it. That only left the option of me being a deficient person with a bad personality, which made it my fault. With them being "the experts" I believed I must have been fooling myself somehow, as they couldn't be wrong - could they?
Little did I know.