09 Sep Autism diagnostic assessment
The day of my autism diagnostic assessment was to be one of the most important days of my life, and I knew it. I knew that it could potentially change things forever and I had a million thoughts and feelings swirling around by mind and body. But, rather ironically, there was so much going on inside me that it actually made it hard to really think or feel much of anything. On the day, especially, I was in quite a daze, not really feeling properly in touch with myself and sort of on auto-pilot mode so that I could get through. It’s a little hard for me to convey the experience and do it justice, especially since it’s now been 13 months since that day and the associated memories and feelings are (finally) becoming a lot less raw and intense. Then again, perhaps the greater sense of perspective and detachment that time brings will help me write with more clarity. I’ll go through the day chronologically, doing my best to convey what I can remember. Before we start, a word of warning: this post is awfully long!
I arrived slightly early for the appointment, so walked around the streets outside the building for a few minutes before going in. I wasn’t quite sure where I was going (not a good situation to be in at such a time!) so consulted the signposts just inside the entrance before making my way up to where I thought seemed the most likely place. I started to get a little worried when there wasn’t any obvious entrance way or person I could ask. But then, by pure chance, I saw the person I was supposed to be meeting with (recognising him from a photo I’d seen) entering the escalator to go down to the ground floor, so I followed suit. It was then that it became clear I should have reported to the main desk in the lobby on arrival. I couldn’t believe how I’d overlooked the obvious. Anyway, I eventually ended up in the right place, only a couple of minutes late.
The structure of the appointment
I met with a professor of psychiatry at the local university. He does research work in autism, along with other neuro-developmental conditions, and he’d set up a dedicated adult assessment clinic in the city where I live a few years ago. He was clearly well qualified and experienced and I felt glad to have ended up where I did. The first few moments were all a bit of a blur as he led me to the assessment room. I waited there for a few minutes whilst he went to fetch some notes and I used the time to make myself comfortable and get used to the room a bit.
As we began I was slightly surprised that all he had in front of him were a few pieces of blank paper. Having spent a fair amount of time researching the diagnostic procedure, I was expecting DSM/ICD criteria, checklists, schedules, perhaps even the DISCO to be laid out on his desk. This was a little disconcerting, especially as I’d read about how extensive and intensive some diagnostic experiences can be. But after all, this was a free public health service provision not a fancy private evaluation that might involve thousands of pounds and hours of neuro-cognitive testing. Some time after, I also read that reliance on diagnostic tools can actually be a sign of inexperience. I thought about this and realised it made perfect sense: the more experienced the professional the more they’ve internalised the diagnostic criteria and all the relevant questions, so they don’t need the external prompts. Having talked with hundreds, perhaps thousands, of autistic people, experienced professionals build up an internal schema of what to look for. Perhaps they can even rely on their intuition or the feelings they get from the interaction which, whilst not exactly scientific, I’m sure is probably quite a good guide.
He asked me a couple of basic questions to start off with. Based on reading my copious notes he joked that I probably know more about autism than him (at least I assume it was a joke!). He asked why I was seeking a diagnosis. I replied along the lines of “I can’t just go about my life without knowing one way or the other for sure” which he said is completely understandable. Then he explained the format of the assessment, what would happen and roughly how long it would take.
He’d read some of the notes I’d emailed over and said this had given him “a pretty good idea, so it shouldn’t take too long”. Whilst not explicit, this made it quite clear what outcome he was alluding to, and I felt some degree of relief and hope. But I still didn’t take it fully onboard, I couldn’t be sure and needed to wait to hear it said directly, in no uncertain terms. I found out some time later that the specialist nurse from the pre-diagnostic appointment had told him “she has Asperger’s!” beforehand. My AQ and EQ scores were also strong indicators, so he already had a lot of overwhelming evidence. But still, it was important to go over things face-to-face.
What we talked about
First, he took a developmental history, which is self-explanatory but important and it took up most of the session. He acknowledged the fact I hadn’t wanted to involve my parents at this stage which he said was fine. I did have information about the major early milestones and he highlighted the fact I never crawled, whilst everything else was in line with typical development. My main autistic trait growing up since starting nursery was general quietness and shyness with almost everyone outside my immediate family. I did have a few sensory sensitivities, but not to the extent that they were hugely noticeable and I certainly wasn’t aware of them at the time. One interesting trait is that I’ve always had issues with handwriting which I’d never understood until I found out about autism and how it can cause fine motor difficulties. I was told off a few times at school for holding pens incorrectly and still today I struggle to write more than a couple of pages without quite a lot of pain and messiness.
The professional noted that I’d been “extremely well behaved” in most situations, especially school. He also asked about imaginative play. Whilst I didn’t have evidence that I didn’t engage in it, I described my favourite childhood activities (usually quite physical and playing with real objects in a concrete way like with nature, art, sport and building things) and how I find things like acting and make believe hard today. We went through a bit about school, how I felt about it (“quite neutral”) and the academic side. Then he asked about my time at university – the group work, presentations, how I found living in London and the challenges I’d had during a few trips abroad (especially one group fieldtrip where it was virtually impossible to be alone for more than 2 minutes the entire 2 weeks!). We also touched on a few instances of social misunderstandings I’d had, though the most prominent trait was that I preferred to keep to myself a lot.
(I’ll likely do a post about autistic traits in childhood at some point in the future for more details on all this.)
Next up, we moved on to discuss my current autistic traits. Inferring from my notes, he asked if I tend to keep myself to myself. He asked how I’d feel about going to a social event where I didn’t know anyone. Surely this would unnerve most people though? Even if I knew the people I’d still be anxious. He also asked how I feel about small talk.
In relation to repetitive and rigid behaviours, he said my routine appears to be quite fixed and it seems to have become more so with age. He asked how I felt about changes growing up and now. My memory is hazy, though I definitely remember feeling unsettled by big events like moving house and schools, though all this was probably internalised. He asked if anything else makes me anxious besides social situations. I said “big changes” – normal for most people of course, but probably to a greater intensity for me as with a lot of others on the spectrum. I can find smaller changes a bit irritating depending on the situation, but I tend to be quite pragmatic and dealing with them isn’t a major issue for me.
He brought up the common autistic trait of making literal interpretations and asked if I thought this applied to me. I had noted down some examples where I’d recently taken some metaphors literally which were quite telling, but unfortunately forgot to mention them at the time. He tested me with two of his own proverbs, asking if I knew what they meant. The first I did as I’d heard it before, the second confused me greatly, though this was largely because I hadn’t clearly processed the actual words he’d said. In the subsequent written report he noted I had “some slight difficulty with over-literal interpretation of proverbs”. In relation to jokes and sarcasm I explained how I can be a bit slow on the uptake, but the main issue is not one of understanding but of externalising the appropriate response (not knowing what to say, along with the expected non-verbal side of acknowledging, smiling or laughing even if you don’t really find something funny, or even if I do).
We didn’t directly address special interests, though he picked up that I liked to read a lot (exclusively non-fiction) and that I’d really enjoyed certain TV programmes growing up, like Friends (which I watched religiously every afternoon after school). He asked whether there are some things I can talk more about than others. I said yes, obviously, like anyone, but I’m not the sort of person to go off on long monologues (though I do seem to be doing that a bit more nowadays since acquiring my autism special interest!).
He asked what I think my parents think about how I’m doing (adding that this might sound like a bit of an odd question). I was able to answer this well. But having autistic tendencies themselves, they’re perhaps less concerned or notice certain things less compared to what more neurotypical people might think or say. This is a point which he brought up, asking if my parents “are a bit like me as well”.
Towards the end, he asked if there’s anything he’d missed or that I want to add. We hadn’t discussed sensory issues at all up to this point, so I brought it up, emphasising how it’s a big issue for me. He said I was quite right to bring it up (so I’m sure it just slipped his mind, and he is actually aware how core sensory issues are for a lot of autistic people). We touched on noise hypersensitivities, deep pressure seeking, clothing preferences and habits, touch sensitivities, bright lights and issues with food textures.
I also mentioned executive dysfunction which was a bit of a grey area for me in terms of understanding whether or how I’m affected. I listed a few areas like multitasking, working memory and transitions. He didn’t seem majorly convinced for some reason, saying “I believe you when you say you can’t multitask, but leave the rest to cognitive testing” (slightly confusing as there were no cognitive tests to come…)
Finally, he asked if I’d ever seen a psychiatrist before, along with what I presume were a couple of screening questions for schizophrenia and OCD. He asked if I’d ever experienced any depression. In the follow-up he seemed to think it was quite notable that I hadn’t, saying this might mean I must be quite resilient. He added I should perhaps keep an eye out for anxiety and depression in future as they are more common on the spectrum, but then (perhaps seeing my expression) hastily added “but there’s no reason to think they will…!”
What we didn’t talk about
An overwhelming feeling I got from the appointment was one of regret and slight frustration at there being so much I didn’t talk about (although I was greatly consoled by all the written information I’d been able to provide). It was very hard for me to gather my thoughts in the moment, let alone express them at any great length. So I mainly gave quite short responses to all his questions and in the subsequent written report he noted I displayed “little spontaneity of speech” which was spot on. Thoughts and words just weren’t flowing that well, as they often don’t for me in many social situations or under stressful circumstances.
There were a couple of questions in particular where I wasn’t able to give much response, partly because they’re quite complex and hard to answer, but also because I had so much to say about them it was hard to even know where to start. One question particular, “do I find it easy to tell what people are thinking or feeling?”, was quite tricky. I think I said something like “I get vibes from people…”. He asked whether I usually turn out to be right about these. All I could think to say was “I don’t know…”, to which he said something like “don’t worry, that’s fine”. With quite wide, vague and complex questions such as this, and where it can be hard to have self-awareness, I think a bit more probing, prompting and attempts at discussion would have helped.
I was a little surprised that things like non-verbal communication (especially my own) and stimming weren’t mentioned. But then I realised that these are most likely outwardly visible to him (especially in such an intense situation as this one), so there was simply no need to ask, he could just see right in front of him. There was certainly some stimming going on, my eyes were probably wandering about a fair amount and I felt kind of frozen. Also, at one point when I was rubbing the back of my neck and shifting around in my seat to get more comfortable he asked if I was okay. And at the end of the questioning he said “torture over!”, so… yeah.
A few thoughts on the interaction
As I already mentioned, it was hard for me to talk spontaneously or at length. Obviously I was very overwhelmed, but I also felt there was a lack of space for me to be able to think and elaborate. A lack of silences, with too many questions being fired at me and not enough probing or simply waiting. It’s common for me to feel this way though, and perhaps he wanted to simulate as typical an interaction as possible to assess how I usually am. There were also a handful of times where I either didn’t hear a particular word or phrase that he was saying (it just sounded like gibberish to me) or I heard it but only processed the meaning a few seconds later, when it was too late to respond – slightly unfortunate!
One interesting thing about the appointment is that there was a fair amount of small talk on the part of the diagnostician, along with smiles, occasional laughter, a few jokes and some instances of saying things that weren’t entirely true or serious. I felt a little unsettled or confused by some of this, especially the slight tangents where he’d mention something about his own life. I’d expected to be very much focused on the task at hand given the limited time and its potentially life-changing impact for me. I found it quite distracting when I was trying to focus on all the information I wanted to convey! It was also slightly awkward as I found it hard to respond to instances of him doing these things, either verbally or non-verbally. I understood what he was saying, but I didn’t have a response at hand in most cases or didn’t see the point in going down the route of following up on comments he made about his own life.
It was only a few days later that I realised what he might have been doing: that the small talk and talking about himself was potentially some sort of test to gauge how I would react. It could well be a standard part of his assessment process to see if and how people engage (unless I’m over-interpreting everything and he’s naturally like this as most non-autistic people are). I definitely passed (as in “is autistic”) with flying colours!
The outcome and my reaction
After the professional was finished asking questions and without beating around the bush he said to me, “I agree with you, I think you’re right”. It took me a second or two to realise he’d just told me the outcome of the assessment. Then my stomach dropped, or my heart soared, or my head exploded – I’m not quite sure what exactly, but it all happened internally without much external reaction. I think there was a massive wave of relief, but mainly I felt pretty numb and shocked. This was the moment I’d been waiting for, now I knew for sure, this was it: I was autistic! It’s difficult to remember how I felt in the minutes after receiving the news. Was I happy? Did I feel like bursting into tears? Was I exhausted, dizzy, disoriented? Or actually feeling quite calm and serene? Perhaps some combination of all the above; it’s honestly hard for me to recall these moments. I was trying hard to focus on the rest of the interaction and the information I was being given. It was all so much to process.
The professional went on to say that I “didn’t have childhood autism*, which is good”. He didn’t explicitly say what diagnosis he was giving me and I wished I’d asked as I had to wait a few weeks before seeing “has been diagnosed with Asperger’s Syndrome” in writing when a letter came through the post. He added that “it’s quite clear in you” whilst in some others it can be harder to spot the autism, particularly if there is overshadowing by things like depression. (*By “childhood” autism he meant classic autism involving language delay, as opposed to Asperger’s. Slightly misleading of course as aspies or autistics without language delay are still autistic in childhood, whilst “childhood” autism as in classic autism can and does persist into adulthood.)
The follow-up: what he said
It was all a bit of a haze as I sat there and tried to focus on what he was saying for the next 20 minutes. It’s hard to recall all the specifics now. Even at the time and in the immediate aftermath a lot of it simply washed over me. I was still stuck on having heard the outcome. I needed time to digest it, my brain was saturated, it didn’t want any more information. I do greatly appreciate all the information of course. It’s the right thing to do. You wouldn’t want to hear “yes, you’re autistic, ok thanks for coming, bye now”. It was just a lot of things to assimilate all at once.
Some of the things I do remember him saying, include the following… He said “you don’t have a disease”. This was somewhat shocking! “Do people in this day and age think of autism as a disease?”, I thought, because I certainly didn’t. He also said “you’re still the same person” (perhaps because I looked a bit shocked/overwhelmed). He touched on the causes, saying there are many pathways, but genetics plays a big part. From some of the things I said during the interview it sounds like it may be something to do with my parents in my case. He mentioned how autism is characterised by differences in the social brain, but that different people have greater or lesser difficulties in various areas. He also touched on male/female prevalence, the fact he’d recently bought Rudy Simone’s Aspergirls book, and how he agreed with me about some of the questions in the AQ being slightly biased. He talked a bit about what can happen next in terms of post-diagnostic support, mentioned an autism charity in town that runs social groups, made a request for me to participate in a research study at the university, and explained how the diagnosis might help me in future with things like employment.
The follow-up: what I said
Not a lot, barely anything actually! And this is the one thing I’d change about the experience, because it developed into a feeling of regret and missed opportunity in the following days and weeks. In particular, I felt I could have really done with some more verbal feedback explaining the rationale for the diagnosis. Even though I understood why I was being diagnosed (and would have questioned any other conclusion!), I think it would have been nice just to hear things verbalised and made more explicit to help it sink in. He could have summarised what I’d told him and what he’d understood and, even better, offered more analysis and insight from an outsider’s perspective – what he sees as more or less important, what affected his decision most, and so on. Basically I wanted to hear an explanation of how I couldn’t not be autistic!
I did ask him a couple of questions: What percentage of people in his clinic end up with a diagnosis, and also whether they see many females. Each time he asked me “why do I ask?”, in a very nice way, but perhaps the questions did strike him as a bit irrelevant. It definitely wasn’t the information I needed most at that time. Why did I ask these questions given all the much more potentially useful points I could have raised? Well, I hadn’t thought to prepare any questions (my brain hadn’t allowed me to think beyond hearing the diagnostic outcome because it was so hyper focused on that moment). And yet I knew I had an inordinate amount of questions and need for information inside me. I just couldn’t process or think clearly, so my brain just came out with what it did!
The immediate aftermath
The diagnostician said “it was nice to meet you” and I thanked him as he showed me out the building. As I stepped outside it was like stepping into a new world, cheesy as this sounds. I felt very bizarre, like I was a different person in some way. I couldn’t look at all the people around me (too overloaded), I felt too many eyes on me and became self-conscious about how these strangers were perceiving me. Could they tell I was different in some way? I was thinking about myself differently and assuming others might be as well. Of course, I appeared and acted just the same as always, but inside I felt weirdly free, validated, relieved and happy that I finally had answers.
The town centre was too much, too noisy, too busy. I was in a complete daze and went to wander around the park a bit before making my way home. I determinedly avoided seeing anyone and went straight up to my room isolating myself for as long as possible. I had an unstoppable urge to write things down (which marked the start of an enduring habit ever since), thought a lot about how I would tell my parents the next day and then went to bed shattered and overcome by too many confused and un-/semi-processed thoughts and feelings.
To summarise this rather long post: Minus a bit of regret and frustration on my part at finding it hard to talk at length, it had been a pretty positive experience. The build-up period and anticipation had been going on for so long, I felt a bit sad it was all over. I was slightly disappointed the appointment hadn’t been a bit longer and more in-depth, involving more feedback from the professional about my traits and the rationale for the diagnosis. But all in all, it went well, I felt lucky to have avoided any difficulties along the way and most important I got the outcome I was looking for. After so many months of waiting, it was over. And whilst it would take me many more months to process what had happened (segments of the appointment were going round and round in my head until about 6 months later), it was now time to move onto the next stage in my autism journey – post-diagnosis!