In this post I’ll be discussing the period leading up to my diagnostic appointment – how I prepared in practical terms, some thoughts about how I was feeling, along with a few tips about the process more generally. Some of this might resonate with other people’s experiences or hopefully provide some insight into what it can be like for those considering diagnosis. Of course, this is just my experience – things can and will be different for others depending on a whole host of factors. I’ll try to keep it (relatively!) brief as a lot of what I’ve said in the previous posts in this series applies to this phase of the diagnostic process as well.
The months and weeks leading up to an autism diagnostic assessment can obviously be a very anxiety-provoking time. And not only because it presents a potentially life-changing outcome that would be a big deal for anyone… Most of us undergoing the process are indeed on the spectrum or at least have some autistic-like traits making us more prone to anxiety in the first place. Some of the reasons for this anxiety might include: uncertainty over what to expect during the process, the unknowable nature of the outcome, the often mixed, complex and confused emotions, social anxiety around talking to people especially about such sensitive issues, as well as practical concerns around where you need to go, when, for how long, or completing forms and procedures as part of the assessment process.
As I previously mentioned, my dominant emotion by far was one of fear at potentially not receiving a diagnosis. Whether this be through the psychiatrist revealing that actually I can’t be autistic for x reason. Or through actually being autistic but not having the truth revealed – either through failing myself to convey enough information of the right sort or through the diagnostician being uninformed or prejudiced in some way. Above all, I was very uncertain about the sort of person I might encounter. Not because I had any particular reason to be apprehensive – my experience of the process up to now had been quite positive. I’d just heard second-hand about quite a few horror stories by this point and I think my mind was automatically preparing itself for the worst case scenario… just in case.
I also had some legitimate doubts feeding my fear that I wasn’t in fact autistic. There were several areas of the autism profile which I felt didn’t affect me a huge amount, or at the very least I was uncertain whether or not they did and lacked supporting evidence to be able to say one way or the other. Here are a few examples of where this applied for me:
– Theory of mind and reading people: I felt (and still feel to an extent) I didn’t have too much of a problem with interpreting non-verbal communication (obviously a core autistic trait). But I’ve since learnt from hearing about others’ experiences that this may be a case of not knowing what you don’t know, i.e. not having the “normal” experience to hand to be able to compare with your own and thereby understand what it is you might be missing. (This is something I’m very keen to discuss in more depth in a future post.)
– Then there was executive dysfunction which I truly felt was not a significant issue for me, especially compared to the difficulties many autistics can have in this area. It definitely wasn’t a noticeable issue for me growing up, but it has become more apparent in the past few years and months especially. I’ve also learnt a lot more about EDF in the year since my diagnosis and I’m realising how it can manifest in me, even if it is usually quite subtle and lessened through compensatory strategies.
– I even had doubts about special interests! I wasn’t particularly obsessed with any topic growing up. But I think this was because I was very focused on academics and probably adopted a couple of school/university subjects as special interests (which would make this behaviour seem less noticeable or odd to myself and others). I have had strong interests in more recent years, but still not to the extent I’d consider diagnostic. Ironically, around the time of my assessment I was fast developing a very intense interest in autism. But this was in its early stages at the time (only with hindsight can I see how it’s developed into an obsession), so I didn’t think to mention it to the diagnostician.
So I had doubts about whether I met certain core criteria. But what I’ve increasingly realised since, is that that not every autistic person has every trait, especially not strongly, not even the major ones. Despite these doubts, I knew that so many autistic traits did fit. And the explanation of autism overall somehow just felt so right. If this is also the case for you, don’t worry if there are a few characteristics here and there that you don’t identify with much or even at all. There could be all sorts of reasons for this: not every person has every trait, your difficulties could be very subtle, you could be camouflaging, well-adapted or well-supported, or you could simply lack self-awareness!
Despite the worry, I also had a lot of positive emotions around this time. This included excitement at having found a potential explanation. I was reading and watching a lot about autism and feeling a strong sense of validation and connection in relation to what I was hearing and the sort of people I was seeing. Looking back, I also seemed to be in a bit of a haze during this time, perhaps not fully aware of the implications of where this could be leading. I think I was very focused on the short-term and either couldn’t or wouldn’t let myself see much beyond the assessment in order to prepare myself for the eventual outcome. It’s understandable really as I just didn’t know what was going to happen and couldn’t seem to hold both potential scenarios (diagnosis / no diagnosis) and their implications in my head at the same time.
The people around you
Another great way to help strengthen your case and calm your nerves is to talk with those close to you. It’s likely parents will be involved in the assessment itself, so it’s probably a good to discuss your thoughts and emotions together beforehand. However, this is not how I went about things at all…
One notable thing I did was to keep my autism knowledge and suspicions all to myself – from the time I first encountered the concept, right up to receiving a diagnosis. I didn’t tell anyone, not even my immediate family, what I thought I knew or what I was doing until the day after I received a diagnosis. So I spent around 18 months keeping everything to myself. This is perhaps a little unusual and I wouldn’t necessarily recommend it to others (especially if they feel they’d benefit from some sort of external support or validation), but for me it felt very right. I don’t regret going about it this way and I’d do it the same way again.
So what were my reasons for this? Being a very introverted and introspective person, I tend to need plenty of time to process things in my own head, and this is often a lot easier without any outside interference. I was worried that bringing others in at this point would overwhelm me and somehow make it harder to think and feel things in a clear, natural and unbiased way (perhaps this in itself has something to do with being autistic!). I needed time to get used to the idea and to figure out how I felt about it. It felt like a very natural thing to do, I felt very happy during this time, so I just went with it. I knew that I absolutely would be telling my family if I did receive a diagnosis – and I was excited (though very apprehensive) to do so. So I didn’t think there was anything too wrong with me taking a bit of time to live with the idea in my own head for a while.
On the slightly more negative and fearful side of things, I also had a lot of doubt about my suspicions, especially in the early days, and I felt I wanted to be sure before telling anyone. I think I feared embarrassment if I turned out to be wrong about myself, and perhaps even being accused of searching for problems where there weren’t any or of exaggerating my difficulties. I didn’t really have any history of discussing these sorts of issues with my parents or even of us acknowledging there were any issues (perhaps because they are both pretty similar to me) so it all seemed like venturing into very new territory.
Undoubtedly the best way to quell any fears in the lead up to a diagnostic assessment is to do a lot of research to develop both your understanding of autism in general and how it manifests in yourself particularly. Of course, not everyone will want to go this route, perhaps for fear that it might lead to overinterpreting behaviour or creating self-fulfilling prophecies. But if your suspicions are strong and you feel a diagnosis would really help, it’s worth fully investigating for yourself and doing the work to give yourself the best chance of getting the right outcome. Basically, it’s worth trying to make the diagnosis yourself beforehand. After all, nobody can ever know you as well as you and, especially if you do the research, you stand a very good chance of being right about yourself. A lot of adults are virtually self-diagnosed by the time they seek professional confirmation. Hopefully the diagnostician will be good, asking the right questions, listening carefully to your responses and knowing what to look for, but you never know, so it pays to come well-prepared and ready to make your case.
If you’ve followed the steps to discovering your (potential) autistic self, the next stage is to convey the information to the person assessing you. Obviously most of this takes place verbally, although I’d definitely recommend bringing a few notes if you think this will help remind you of key things to say. I took this to extremes in my own case, coming armed to my appointment with a hefty stack of notes. I’d initially written the notes for my own benefit and my eyes only. But a couple of weeks before my assessment I began worrying about how I was going to convey this information to the psychiatrist. I knew I’d be very nervous and overwhelmed because of the potentially life-changing nature of the occasion combined with the simple fact of being in an unfamiliar setting with a stranger talking about such personal issues. I had doubts I’d be able to do justice to everything I wanted to convey, so I thought I may as well bring along some written information to make things a little easier. You might feel the same, especially if your assessment service doesn’t provide any opportunity to provide written information as part of the process (e.g. through completely an open-ended questionnaire).
In case you’re wondering what my notes looked like, here’s a description. The document contained two parts – the first listing my autistic traits, the second outlining a developmental history describing some of my experiences at various life stages. I came up with some headings for major autistic traits and then explained how I thought they applied to me, along with providing some specific examples where I could. These included areas such as sensory sensitivities, relationships, communication, behavioural, cognitive and physical/motor issues, along with a note on the extent to which these affect my life. To be fair, I also mentioned areas where I felt I didn’t fit the conventional description of autism, or where I was unsure – I wanted the right outcome after all! For the developmental part, I was able to write about my teenage and young adult years no problem, but I had a lot more blanks when it came to my younger self. I did manage to ask my Mum a few questions about this without mentioning autism and this discussion proved to be quite fruitful, though I do think it raised her suspicions a bit! As the document ended up being so lengthy, I then wrote a greatly condensed one-page summary which still managed to capture the essence of what I wanted to say, but which would be much faster to read should the diagnostician not have the time or inclination to go through everything else.
In sum, diagnosis can be a very uncertain and anxiety-provoking time, as well as extremely exciting, thought it all depends on the individual, their personality, past experiences and particular circumstances. Try to prepare yourself emotionally beforehand and throughout the process. Doing plenty of research about autism, expanding your self-knowledge along the way, preparing notes for your appointment and seeking support from those around you can all help immensely. Informing yourself about diagnostic procedures in general and trying to obtain information on the details of the specific pathway(s) open to you will also help combat the uncertainty. Reading about others’ experiences, diverse though they are, can help with this. The actual diagnostic assessment will be the subject of the next post in this series.