After the online questionnaire phase of the assessment was completed and submitted, I was expecting to have to do a telephone consultation. I was phoned by an administrator from the clinic at which the assessment would be carried out, to set a date for the diagnostic assessment proper. Unfortunately, I missed the call – I had been teaching, so my phone was on silent – but responded to the voicemail that she had left.
I now had a date confirmed: Sunday 13th March 2022. I can’t remember whether it was at 9 or 10 a.m., but I remember that it was quite early, especially considering I hadn’t slept well the previous night. I was also surprised when they offered me a Sunday appointment, but they did.
Sunday 13th March 2022: a date for my autism assessment.
Sunday 13th March 2022: a significant event in my life.
It proved to be life-affirming, because, at the end of the assessment, I was diagnosed with autism. This was what I had expected would be the case, and indeed, what I had wanted, because it would confirm what I had known to be true since September. However, the diagnostic experience was actually traumatic.
Clinical? Cold? Harsh? Those would be reasonable expectations if the assessment were to take place in a hospital. However, this wasn’t a hospital: it was a private clinic. The service itself wasn’t private, though – it was through the NHS, but the NHS uses private providers for certain services, and evidently, autism diagnosis is one such service.
I suppose I was expecting something a bit more like a counselling room. Something about the size of a living room or small office, possibly carpeted, with a comfortable sofa or chair; perhaps some anodyne art on the wall; maybe a small coffee table with a water jug and tumblers. Here, the assessment would be carried out with us – the psychiatrist, the assistant psychologist, and myself – seated at the same level, with me opposite to them.
After signing in at reception and filling in a form, I availed myself of a paper cone or three of water from the dispenser. After a short while, the psychiatrist walked into the foyer and asked me to come through.
I followed him into a room that was about the size of a standard secondary school classroom. The floor was grey, with wood-effect tiles. It was also bright in there. In the background, against one wall, was a physiotherapy bed. We all sat in a corner of this large room. I was on a sofa/futon, which was uncomfortable; the psychiatrist sat behind a desk, probably about ten feet away from me, with a laptop open on the desk in front of him; the assistant psychologist sat about four feet to the side of him, and she was not behind a desk.
The psychiatrist asked me to remove my mask. I found this funny, because I had been trying to unmask my autism since September. Of course, he didn’t mean that – he was referring to the N95 mask that I was wearing, because we are still living in a pandemic and COVID is airborne, so I continue to wear my mask in public buildings.
I complied with his request (instruction?) because I didn’t want to get off on the wrong foot with him. Had I not complied, would he have terminated the appointment? Already, I was feeling that any autonomy I possessed had been snatched from me. I was 41. An educated, professional person. A married man with a daughter. And I had just exposed myself to the risk of COVID in a poorly-ventilated room because I didn’t have the courage to stand up for my right to wear a mask. To make myself feel better about this, I reasoned that he would probably need to see my facial expressions. However, I was puzzled as to why there wasn’t a COVID-secure setup, maybe with several open windows and a Perspex screen.
At this point, having had just a coffee for breakfast, slept little the night before, and driven 18 miles to the clinic, I was beginning to feel on edge. A bit “off”. Slightly heightened. This heightened feeling was probably because of sensory overload from the bright lights.
The psychiatrist spoke softly. My hearing isn’t brilliant – it is really difficult for me to pick out individual voices in rooms with poor acoustics and many people talking (parties are a nightmare for this reason) – but in a quiet room (this was, thank goodness, a quiet room with no extraneous noise), I usually have no trouble hearing what someone is saying. I really had to concentrate to listen to what he was saying.
In addition to this, because of the positioning of the sofa, I was sitting roughly perpendicular to the psychiatrist, so I was twisting my neck ninety degrees to try to make eye contact or attempt to lip-read.
All I could do was attempt to provide the best answers possible. For me, that means providing the rationale behind my behaviour, explaining what has happened and why, and being as detailed as possible.
At some point during the assessment, he said to me that we had gone over the expected time by about half an hour, and asked me to keep my answers brief. I was amazed that this hadn’t been stated at the beginning. Had that been the case, I would have obliged. I thought it was expected of me to provide evidence of my lived experience. It seemed that this wasn’t the case. From that point, I switched to giving near-monosyllabic answers that I felt were insufficient, thereby increasing my already considerable discomfort.
The questions for the assessment came from the Royal College of Psychiatrists’ diagnostic assessment. It did seem as though I was just having a series of questions fired at me, with no opportunity to construct a cogent narrative.
He didn’t hesitate to tell me that yes, I am autistic. He told me this immediately after taking notes on the final question he had asked me. There was no asking me to step outside while he discussed my answers with the assistant psychologist, who had also asked me a few questions; there were no requests for me to tell a story using props; there was nothing but a long survey, during which I provided my answers whilst looking at the floor.
Decision made – diagnosis given – the psychiatrist continued talking. He mentioned something about it being a condition; he said there’s no cure for it (I’m hoping that he meant it’s not something that needs to be, or should even be thought of as needing to be, cured) but maybe tone day, there will be something to help (oh, my mistake – perhaps not). In fairness, I cannot recall the entire exchange, quite simply because I had shut down in order to conserve the tiny amount of energy that I still had.
I was drained. Exhausted. Dehydrated. It occurred to me that at no point had I been offered water or even asked if I needed it. I didn’t ask for any, because I didn’t think to do so – I was so focused that it had simply not registered with me that I might be thirsty. Now it was all over, after I had talked extensively for about two-and-a-half hours, I was parched – as well as tired and overstimulated.
I also remember being told that I would receive a letter with my diagnostic status within two weeks, and a full report in six to eight weeks.
A short while later, I was shown out of the room and asked to sign out at reception. I needed to use the toilet, although I had not taken in very much fluid at all.
That was it. I walked to the car park, paid for the parking, got in the car, and drove home as an autistic man.
Coming up: Reflections on the diagnostic process.