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Waiting for Autism 3 - Assessment Week

I posted 'Waiting for Autism' and ‘Waiting for Autism 2’ in November 2021. These charted my journey from first contemplating the idea that I might be an autistic person to the point where I had been offered a full assessment via the NHS in Oxford. Two years on, as opposed to the 6-12 months I’d initially been told, I

will finally have my assessment this Thursday (November 16th) at Autism at Kingwood, the Oxfordshire Adult Autism Diagnostic and Support Service.

This blog post is again aimed at providing others with insight into what the formal process for this stage will look like under NHS care. But I will also offer a few remarks on how I am currently feeling; and my current intention is to post again in a week or so. On Thursday I will travel to a centre in Didcot, which is about twelve miles from where I live in Oxford as the crow flies. I will be need to be there from 9.15am until 2.00pm for two separate sessions of ninety minutes. Each sessions will be with a different clinician; the first will cover my ‘developmental history’ and the second will be an ‘observational assessment’. These will provide what Autism at Kingswood describes as ‘a standardised, validated assessment for autism spectrum disorders and are recognised as the “gold standard” in autism assessment internationally.’

Where possible, the first session is a structured interview at which someone who is a ‘reliable informant’ about the behaviour of the subject at age 4-5 is present. It employs the Autism Diagnostic Interview-Revised (ADI-R). However, in cases where this is impossible, such as my own, the clinician interviews the subject using the Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R). The second session involves an assessment which employs the Autism Diagnostic Observation Schedule (ADOS-2). This is a ‘semi-structured assessment of communication, social interaction, and imaginative use of materials for individuals suspected of having autism spectrum disorder’.

Before attending the sessions, I was asked to fill out one more relatively short form. This was largely concerned with establishing my medical history, the nature of any past employment that I have had, and my current living situation. It also included the following questions:

1. What are your current concerns?

2. Why are you seeking an assessment at this time?

To the first of these, I answered ‘persistent problems with social interaction’; to the second, 1) ‘potentially to receive formal disability status for autism at work’; 2) ‘to enable participation in groups devoted to autistic people’; 3) ‘to legitimize further self-understanding via the autistic category’. I did not return to anything I had previously written when providing these comments. But as I write this new post, I have discovered that I said the following in ‘Waiting for Autism 2’ in connection with the same question. The order is different, but the issues are identical:

‘1) It would legitimize my using resources of various kinds that are aimed at helping autistic people to live with others and in the world more easily and happily; 2) it would offer opportunities to socialise with others who have the same diagnosis and gain a sense of solidarity and support; 3) it would clarify my position in connection with disability legislation at work and help me understand what kind of reasonable adjustments might be made in light of the social difficulties that I often have.’

Over the last two years I have settled more publicly into playing the role of someone with a mental disability. I now mention both my bipolar diagnosis and the fact that I’ve been waiting for an autism diagnosis to people quite soon after I get to know them, perhaps ‘too soon’ in some cases. I’ve also co-organized a number of events with colleagues, including the online workshop ‘Philosophy of Psychiatry and Lived Experience’ and ‘Madpeople’s Coping Mechanisms’, a two-day conference at Oxford University in September. And, finally, I’ve continued to try to write in my professional capacity as an academic philosopher. The fruits of this so far are a co-authored a paper with my friend Sofia Jeppsson called ‘Strategy, Pyrrhonism, and the Allure of Madness’ which will be published in 2024 and in which we explore the way in which a ‘sceptical’ approach the life has helped us manage our respective madnesses.

But it’s hard to connect this with, or indeed feel connected to, the diagnostic process very much at all. Perhaps this will change after Thursday, particularly if I find myself with an official diagnosis. But, at this point, I find that my history of having a bipolar diagnosis is giving me the sense of connection with mad life and mad society that I seem to need. This is not to say that I have leapt in with both feet, but I’m not sure I really believe what I wrote on my most recent form as answers 1)-3) above; perhaps the issue of formal status at work, but I’m already down as bipolar there. But I had to write something, didn’t I!

What seems more relevant to me at the moment is the fact that I recently read Unmasking Autism by Devon Price, which is ‘A deep dive into the spectrum of Autistic experience and the phenomenon of masked Autism, giving individuals the tools to safely uncover their true selves while broadening society’s narrow understanding of neurodiversity.’ Price’s book is a great read, providing many insights into the different kinds of lives of autistic people. And whilst much of the discussion is based on the experiences of people with diagnoses, Price is at pains to point out the extent to which people should not allow whether they have a diagnosis or not to constrain the way in which they conceive of their own relation to autism. He returns to one obvious reason for this throughout – though one which I really hadn’t appreciated in such a vivid way – namely that access to such diagnostics is so difficult for so many people.

The key take-home from Price’s book for me is that I’m ‘autistic enough’ to be welcomed into at least parts of the autistic community irrespective of the outcome of my assessment this week. Whatever sense of validation I thought I needed in 2021, and which I’ve parroted again in my most recent questionnaire, it isn’t really present any more. Indeed, I recently made a new friend, a fellow singer-songwriter. We are similar in age and both ‘autistic enough’ to have been (finally) granted an NHS assessment; indeed, she is waiting for the report from her autism assessment at the moment. But much more importantly, there was an easiness in our early interactions that made it obvious that the solidarity doesn’t depend on the formal process at all. And, although I’ve not made any forays into larger autism social groups, I think I will feel just as emboldened to do so whatever the clinicians have to say. All this notwithstanding, however, I don’t want to dismiss the process; and I’m still terribly curious about what Thursday will be like, what the report on me that it will produce will contain, and whether I end up officially autistic as a result. But I don’t really know why…


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