This is the fourth in a series of posts whose primary aim is to familiarize people who might not otherwise be with the process by which a diagnosis of autism comes about in the UK. More precisely, it has been an account of my own journey from the initial realization that I might be an autistic person to the culmination of that process in my own case. Needles to say, much of this may be person and locality specific – i.e., as it occurs in the NHS in Oxfordshire.
At this point, I can relate the fact that I recently received the following information in the wake of my formal in-person assessment:
"The outcome of this assessment is that you meet the criteria for a diagnosis of Autism Spectrum Condition.
Your difficulties with social interaction and communication, along with some stereotyped, repetitive motor movements, a need for structure, routine and sameness, some circumscribed interests and some sensory sensitivities are typically seen in autistic people. All of these can have an impact on activities of daily living."
In addition, I learned that the results that I received on completing the Adult ADHD Self-Report Scale (ASRS) as part of my overall assessment would warrant a referral for formal assessment of ADHD.
After almost two years of waiting, I attended an NHS-funded face-to-face assessment of Autism Spectrum Condition (ASC from hereon) on November 16, 2023. I was told at that assessment that the information gleaned by my assessors would then be collated and discussed with a psychiatrist in order for a determination to be made; and I should expect to wait around six weeks to receive a report with a ‘yes/no’ answer and a detailed account of what the assessors had observed an its significance (more on this below). An email with this was sent to me on December 15, which ended up in my spam folder and I discovered it somewhat by accident on December 18. So, my becoming autistic in this sense occurred, without my awareness, at some indeterminate time between November 16 and December 15.
There is much to reflect on when it comes to trying to make sense of the significance of the diagnosis, especially given that it is a classification, according to which ASC is a ‘neuro-developmental condition’, and hence a condition that one receiving an assessment at my time of life (56) has had for a very long time. I will not turn to such issues here, though I do hope to take them up in some form or another in future. Rather I want to continue this series of blog posts in the same form, i.e., primarily as descriptions of the processes which led me to where I am. In the present case, this will consist of some description of the face-to-face assessment itself along with an account of the results of this assessment and the ways in which they fed into my outcome.
It should be said at the outset that my intention is to write in ways that do not reveal aspects of the process that might ‘contaminate’ it for others. Whatever one might think about the adequacy of current ways of assessing people for ASC, it is clear that had I known some of the things I now know about the process I might have interacted differently with the assessors and masked elements of the sessions that led to my diagnosis. But I want to at least give a bare bones description of the November 16 assessment.
My assessment took place in rather anonymous office building in Didcot, which is about 10 miles from where I live where the provider was renting space alongside a number of other small businesses. The setting was relaxing and pleasant and the people with whom I engaged all put me very much at my ease and treated me with great respect and kindness. Before attending, I was asked to fill in a final form. This consisted questions about things such as my basic medical history, living and employment circumstances, as well as establishing whether I would need any accommodations in order to attend the assessment.
The assessment itself consisted of two parts, each lasting approximately 90 minutes. There was a break in the middle when I had time to leave the building and go into the town to have lunch. The first part was focused on ‘developmental history’ and was carried out by a Neurodevelopmental Psychotherapist. This would have taken place in the presence of a parent/carer or someone else in a position to give information about my behavior at the age of 4-5; and the aim of the assessment would have been ‘to provide a detailed developmental history using the Autism Diagnostic Interview-Revised (ADI-R)’. However, given that this was not possible and the assessment was structured around ‘Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R)’. The second part, which was conducted by a Clinical Psychologist was structured around ‘Autism Diagnostic Observation Schedule (ADOS-2)’. Rather than an investigation of the subject’s biography, this session is focused on the current forms of ‘communication, social interaction and imaginative use of materials’
Both of these diagnostic tools are well-known and widely available online. I shan’t elaborate on the details of the how they were used in my case. Partly that is due to the extent to which the conversations were very personal; but, setting privacy issues aside, it’s also important to note that I have no real idea of how these discussions were evaluated by the professionals who administered them. Indeed, this is one of the things that is emphasized when it comes to accessing the details of the RAADS-R and ADOS-2 outside of the context of formal assessment, namely that they are of little value to people unless they have been trained to use them. Certainly in my own case, it was evident that whilst they provided a framework, a much more complex process was playing itself out.
As mentioned above, around a month later – slightly more quickly than had been suggested – I received a diagnosis and detailed report, which is just over 6,000 words long. The reports begins with a recapitulation of the basis on which I had received the assessment along – namely GP referral and more detailed questionnaire-based screening - with a basic account of the basis for the diagnosis - namely the appraisal of my assessments along with the results of the screening questionnaires (The Autism Quotient (AQ) and The Empathy Quotient (EQ))
The rest of the diagnostic element of report consists of two things which are interspersed. The first is a detailed presentation of the ways in which my interactions with those assessing me relate to a number of salient categories; the second is a distillation of these – alongside the two questionnaires – into more formal categories that feed into the final diagnosis. The report finishes with some recommendations for next steps. However, this is something that will be explored further in a telephone conversation that I will have with the Neurodevelopmental Therapist early in 2024. Turning to the more formal representations first. The AQ and EQ have cut off scores of 32 or above and 30 or below which are ‘indicative of Autism Spectrum Condition’, both of which I satisfied. Whilst, this was not communicated to my directly, I assume that receiving these scores was a necessary condition for receiving the full assessment. The ACIA does not have an independent formal representation, but is reported in discursive form (more below). However, there is an algorithm for ADOS-2 which assigns scores for ‘Social Affect’ and ‘Restricted and Repetitive Behaviours’ respectively. The cut off score is based on a combination of each of these scores, where a score of 8 is ‘cut off for diagnosis of autism spectrum disorder, which I again satisfied.
However, the ultimate diagnosis was dependent on how all of these tests fed into the diagnostic criteria that appear in DSM-5. These are somewhat complex There are five broad categories A-E and within these there are three subcategories for A and four for B. In fact, A and B set out parameters along which those with ASC may differ from those who would not be given such a diagnosis. C-E speak to the extent to the persistence, disruptiveness, and sui generis nature of these patterns respectively.
A Social communication and interaction 1. Significant difficulties in social-emotional reciprocity
2. Significant difficulties in nonverbal communicative behaviours used for social interaction 3. Significant difficulties in developing, maintaining, and understanding relationships
B Restricted, repetitive patterns of behaviour (including sensory sensitivity) 1. Stereotyped or repetitive motor movements, use of objects, or speech 2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behaviour
3. Highly restricted, fixated interests that are abnormal in intensity or focus4. Hyper-or hypo reactivity to sensory input or unusual interest in sensory aspects of the environment
C. Symptoms present in early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life)
D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning E. These disturbances are not better explained by intellectual disability or global developmental delay In order to receive a diagnosis, one must satisfy all three of the sub-criteria for A; two of the four sub-criteria for B and all three of the criteria C-E. I satisfied all ten.
Returning to the first of my assessments via the ACIA: This part of the report has two parts the first is referred to as ‘Background’ and the second as ‘Assessments’. The background is a presentation of the key points from the initial phase of this assessment. At this point, the discussion was free-flowing, whereas in the second part, the assessor was tracking explicit criteria from the ACIA. In both cases, however, the conversation was evidently designed to elicit how I conceived of my past and present in terms of how it related to ways of being that I already associated with what is at stake in determining whether someone receives and ASC diagnosis or not.
The background is divided into summaries of ‘family background and history’, ‘mental health’, ‘education and employment’, and ‘current concerns’. Most of the content, as was the case during the discussion, is concerned with the first of these headings. The part of the report that is labelled ‘assessments’ is divided in a way that tracks A and B from the DSM-5 criteria. As mentioned above, I satisfied all these criteria to the extent required for an ASC diagnosis. Without going into great details, the summary below is designed to give a sense of the kinds of issues at stake.
A1 Social-emotional reciprocity ‘Social-emotional reciprocity’ refers to the ways in which people are able to recognize and respond to the emotions of others. ASC expresses itself along this dimension in such things as failure to pick up on all but the most explicit displays of emotion and an apparent insensitivity and incongruity which may result in responding to the emotions of those around them. The criterion also extends to less emotionally charged situations and is manifest as discomfort and difficulty engaging with everyday social situations where people other than close friends are involved, where this includes struggles to follow the norms of conversations either by talking too much or sitting out altogether.
A2 Non-verbal communication
At issue under this heading is the way in which people use non-verbal communication to express their feelings. Of particular significance here are lack of variation, or ‘blankness’, in facial expression, and much less use of conventional body language than normal; but this criterion also includes failure to initiate physical gestures of affection and more general difficulties integrating verbal and non-verbal communication.
This heading is an umbrella for ‘difficulties with developing, maintaining and understanding relationships’. Whilst it is clear that aspects of A2 and A3 are likely to feed into the extent to which this criterion is satisfied, it appears to be directed more toward the ways in which perceived communication of content causes offence or is more generally at odds with societal norms in ways that other people find alienating. Examples might include ‘honesty’ and ‘bluntness’ and oversharing or behaving in a manner that is perceived as lacking the formality required. However, it is clear that another element here is hypercorrection due to a lack of sense of what the norms are combined with a desire not to offend and alienate.
B1 Repetitive language or behaviours
Here the focus is ‘stereotyped or repetitive motor movements and speech’. This might include various forms of ‘stimming’ and the noticeable repetition of particular words or phrases.
B2 Routines and Rituals
This criterion echoes B1, however it is concerned with the ‘structure, routine and sameness’ of day to day habits. The kinds of behavior that might be relevant here would be collecting and organizing things such as stamps; but it also extends to the need to have rigid daily routines governing such things as eating, personal hygiene, and wanting everything to be in its place.
B3 Intense interests
The meaning of this criterion might appear self-evident and would include such things as acquiring very detailed knowledge of closely circumscribed subject area and the collecting mentioned in connection with B2. However, it extends to the kinds of professional occupation and that one might have insofar as that facilitates a high degree of fixation on a small number of things; and it would be manifest further if that fixation extended in such a way that it blurred the distinction between professional and personal life.
B4 Sensory differences
‘Sensory differences’ points to the way in which those who receive ASC are more sensitive than the general population to sensory stimulation. Perhaps most obvious among these is an aversion to noise, but it can manifest itself through all the sense modalities. Hence a lack of tolerance for certain fabrics is common and insistence on diet restricted to a limited range of foods is another way in which this might manifest itself.
The second, ADOS-2- based, part of the assessment was quite different to the first. The crucial difference was that rather than consisting of a series of questions explicitly focused on the criteria for ASC diagnosis, the assessor was engaged in an observational assessment (though this was clearly not completely lacking in the ACIA-based assessment). And it is here that I think it is important not to reveal very much about what I was doing when observed. For, as I mentioned above, this is the places where it seems to me that I might have behaved differently if I had known what was going on. Indeed, aside from the fact that this part of the assessment generated the score for which 8 was the threshold for ASC, I will say no more.
What I have said to this point exhausts the account of the assessment that I shall offer here. However, it is worth mentioning one more aspect of the report. The result of the assessment occurs toward the beginning of the report and again toward the end. Its second occurrence is accompanied by some observations about how one might feel as the recipient of a positive diagnosis:
"Many people go through mixed emotions when receiving a diagnosis of ASC, so do not be surprised if this happens to you also. You may feel any, all or none of the following:
Relief – at realising there is a reason why you might feel or behave differently to others
Anger – at not having been diagnosed when young and thereby receiving support and understanding
Sadness – at realising this is a life-long condition
Acceptance – this is the end goal, and where understanding of yourself, what works for you and what doesn’t, helps reduce struggle in life."
I don’t intend to discuss how this addendum resonates with me, partly because I don’t feel able to say. But I am struck by the final bullet point. For it is here that my training in academic philosophy starts to kick in with abandon. I am a long way from having processed the significance of having gone through the current assessment procedures for ASC in the UK. However, one thing I am confident about is that whether or not I, or indeed anyone else, should take ‘acceptance’ of a diagnosis of ASC as their ‘end goal’ is something that would require a great deal of further reflection.