Hung Out To Dry
I’ve been re-reading my diagnostic report recently and came across a paragraph which stated that I have difficulties with ‘non-literal’ language – I don’t and never have had. The clinicians misinterpreted some of my musings on idioms.
My diagnosis is actually ‘Autism’ rather than Asperger’s Syndrome and I have always assumed that this was due entirely to my childhood language delay, but I started to wonder if this decision had been partly due to their mistaken belief that I had current language difficulties. According to the ICD-10, it is impossible to get a diagnosis of Asperger’s Syndrome if you have a childhood speech delay, but I have come across a large number of people who have been diagnosed with Asperger’s Syndrome’ who did have significant language delay, so it’s clear that many clinicians bend the rules.
The exact diagnosis shouldn’t matter, but unfortunately it does. I’ve experienced quite a bit of prejudice from within the online ASD community when I mention that my diagnosis is actually ‘Autism’. This is going to be a subject for another article at some point, but one thing I will say is that at times, I’ve been so upset by all the nastiness that’s it’s made me physically ill. It’s an unfortunate fact that a diagnosis of Asperger’s Syndrome would have avoided all this.
I was persuaded to query this with the clinical psychologist who diagnosed me (against my better judgement). The email took a week to write, as it needed to be perfect. I didn’t want to offend them by questioning her clinical judgement, but I had to get my point across. I had to make sure that the language flowed beautifully, and include some subtle metaphors. I had also to explain why the exact diagnosis was important to me, while not coming across as whiny or needy. It was a difficult one to write, but I managed it eventually.
When the reply came back, she accepted that I don’t have any problems with non-literal language, but stated that the decision to diagnose me with Autism and not Asperger’s Syndrome was based on my early language delay and my score on the ADOS-2.
Bizarrely, my overall result on the ADOS-2 actually indicated ‘Autism Spectrum Disorder, not ‘Autism’, as my Communication skills were too good to be given an ADOS-2 result of ‘Autism’. However the clinicians stated that the ADOS-2 was just a ‘snapshot in time’ and gave me a diagnosis of ‘Autism’ anyway.
The email stated that there was “evidence” of “other communication difficulties, including language delay”, but the problem is that I have no idea what these mysterious “other communication difficulties” are supposed to be. I am one of the most verbal people I know, I am genuinely fascinated by all aspects of language. My mother says that I can ‘talk the hind leg off a donkey’. A childhood nickname was Zippy (from Rainbow), as I wouldn’t shut up. I understand idiom, metaphor, sarcasm, humour effortlessly. I can understand body language, sense what people are thinking and get a neurotypical score on Baron-Cohen’s much maligned” Reading the Eyes in the Mind” test.
I’ve always been a voracious reader, I’m the type of person who reads the back of the Cornflake packet. I read ‘Alice’s Adventures in Wonderland and Through the Looking Glass’ when I was 4 years old. At school, I achieved Grade A in my O-levels in both English Language and English Literature. I wanted to do A-level English, but it clashed with Chemistry so I couldn’t.
I would be prepared to put money on the fact that my communication skills are better than the clinician that diagnosed me. The email I received in reply was rather curt, patronising and verging on aggressive and it’s clear that the subject is no longer open for discussion. I wasn’t expecting her to genuinely care, but she could at least have pretended – perhaps her communication skills weren’t up to the job 😉
It is ironic that before I was formally diagnosed, I was genuinely worried that my communication and language skills were so good, that it would be impossible for me to receive an ASD diagnosis at all.
The email stated that it is not possible to change their clinical opinion as “no new information has been provided”. I don’t know what information could be provided that could possibly change their minds. Even if I were to receive the Nobel Prize in Literature, I could still be accused of having difficulties with verbal language, my ‘brilliant acceptance speech’ could be seen as merely a “snapshot in time” and consequently disregarded.
I feel like one of those people on those US crime documentaries who are wrongly convicted, but however much they protest, they are refused leave to appeal. At least they know exactly what it is they’re being accused of and what the evidence is supposed to be. I remember that I was asked what upsets me most in the world in my diagnostic interview and I replied ‘people saying things about me that aren’t true’.
She suggested that I tell everyone that I have got Asperger’s Syndrome if it makes me happy, but I’m not going to. Firstly, it would be a lie and secondly, it would make me a coward.
I can easily ‘pass’ for Asperger’s Syndrome’. I can easily ‘pass’ for neurotypical, but why should I be forced to lie because of other people’s prejudices. If I was to pretend that I’m an Aspie, I would be disrespecting all the other people who have a diagnosis of Autism and I refuse to do that.
I’m not sure where I go from here. I am an anomaly, in that on the surface, I appear to be an obvious case of Asperger’s Syndrome, but have a diagnosis of what is sometimes called ‘Classic Autism’. I have spent my life not fitting in with the neurotypical world and just when I thought that I would finally find my tribe, it appears that I do not fully fit in there either. ‘The gods’ are laughing at me, as they’ve been doing for many years.
I don’t know if I’ve got the strength to keep fighting. I’ve got the ability and the determination to do it, but do I really want to sacrifice my own happiness? Perhaps I should turn my back on the online community, never read another offensively inaccurate news article about autism and pretend my diagnosis never happened.
I could take part in every autism research project that I can find and enjoy the fact that I’ll mess up their statistics 😉
I could put my ‘Aspie’ self help manuals in a pile and burn them.
I could concentrate on practicing my guitar, write some songs and spend more time in my garden. I could play with my cat, spend more time reading, finish researching my family tree, make some more soap, hunt for antique jewellery or listen to Julian Cope and forget it ever happened.
I finally plucked up the courage to demand answers from the clinicians about these “other communication difficulties”. I lied and told them that I wanted the information so that I could discuss it with my GP. This lie was designed to ensure that they were reasonably civil to me and would give me the information I required.
It was stated that “we cannot diagnose you with Asperger’s Syndrome because you had a language delay as a child” – at least that makes sense.
I was told that they noticed “subtle difficulties” in “my understanding of language” and my “use of non-verbal communication”. They did not state the exact “evidence” that they used for my “language difficulties” (that would have been too easy), but they did direct me to the relevant sections of my diagnostic report.
Having read through the relevant sections, the only things I found that I would classify as possible ‘language difficulties’ was that I sometimes have a somewhat literal interpretation of language and find it difficult to know when it’s my turn to speak on the phone
The other “evidence” was actually to do with difficulties with ‘non-verbal communication’
- unusual eye contact
- using very little ‘descriptive’ gesture
- using a small range of facial expressions at the assessment
As these characteristics occur with reasonable frequency in all Autistic Spectrum Conditions, they cannot be used as criteria to distinguish between Asperger’s Syndrome and Autism.
Still, at least I eventually got a civil answer, it’s a shame that I had to pretend a ‘real person’ might be reading it, in order to do so. I suppose that honour is in some way satisfied. Perhaps I will be able to sleep properly tonight? I stretch my legs, arch my back and take a deep breath… but, what’s that subtle perfume wafting my way ….could it be the delicate scent of bullshit?
“Come on, split my head wide open, scoop out a little of my brain” – Julian Cope “Hanging Out and Hung Up On The Line”, 1991