26 Oct Post-diagnosis: the immediate aftermath
I could write an entire book about the impact of receiving an autism diagnosis, detailing both my personal experience alongside more general reflections on the process. But I’m really going to try to condense things down (or I’ll be here forever) and try to accept that a blog post – even a whole book – could never really do the experience justice. (Update/warning: This didn’t work out and this is one of the longest posts yet.)
In this post I discuss:
– My initial emotional reaction following diagnosis
– Some thoughts that were at the forefront of my mind – about autism, myself, the label, other people
– The follow-up post-diagnostic support I received
Then, the last two posts in this series will provide:
– An overview of the varied emotions that can occur post-diagnosis, with some thoughts to help with processing or reframing them
– Thoughts on how things have progressed for me 18 months on, with a focus on some of the more concrete, practical changes that can result from an autism diagnosis
The days and weeks following my diagnosis (and disclosure to my immediate family) naturally brought about a number of intense shifts. These were mainly internal shifts – in terms of how I was feeling, what I was thinking – but also more concrete changes in terms of what I did day-to-day (though on reflection I was remarkably quick at returning to my usual routine) and my interactions with those around me. Looking back, it was a pretty confusing time, full of contradictory thoughts and emotions. After I got over the initial shock and recovery phase and gradually became more used to my newfound identity, I found the positive emotions came to the forefront and on the whole I felt pretty validated, liberated, even excited.
The immediate emotional impact
The first few hours following my diagnostic appointment were spent alone recovering from the intensity of it all. I felt very physically drained, almost ill, like I was recuperating from an episode of flu. I became extremely sensitive to noise and lights. My entire body was achy and tense and my skin had a horrible crawling, almost burning sensation a lot of the time. My head was filled to capacity incessantly replaying events, thoughts and snippets of conversation. Initially, I could barely look people in the eye or talk to them much and was overly blunt or sensitive when I did. I lost some capacity and interest in doing a lot of daily activities or thinking about anything other than my diagnosis. In short, I seemed to have suddenly become a lot more autistic and was continually noticing everything about myself that seemed autistic.
Emotionally, I certainly felt very relieved. Other than this my feelings were quite numbed and muted at this early stage. Then I told my parents everything, which triggered a definite shift in how I was feeling – from the bubbling excitement that characterised the pre-diagnosis period, to a state of more confused and negative feelings. In hindsight, I think disclosing was a lot more emotionally intense than the internal process I went through with discovering autism, and even with receiving a diagnosis. The process up to this point had been life-changing of course, but it had somehow felt quite easy. This was probably because I felt so positive about the discovery/identity internally and I only had myself to deal with.
Not that my family’s reaction was troubling in anyway. It’s just that disclosing for the first time and to the most important people in my life made the whole thing seem suddenly so much more real. Reality hit and it unleashed a whole barrage of emotions. It was now outside of myself, affecting other people, beyond my control. I was externalising everything I’d found out about autism and myself (or at least trying to), dealing with varying reactions/non-reactions, and this seemed to be influencing how I thought about autism and about myself in the process.
Interactions are powerful things. Witnessing and trying to make sense of other people’s perspectives and reactions – even merely being in the presence of people I’ve disclosed to – had a major effect in informing how I felt. Moreover, there seemed to be quite a significant difference between how I feel about autism/being autistic (mostly very positive) and how others and wider society perceive it (often negatively). Even though I tried hard to maintain awareness of this, to avoid internalising certain views or ways of thinking, I found this discord unsettling. I could see how people could all too easily use the autism label to make assumptions about me that were beyond my control and perhaps in direct conflict with what I actually think and feel and how I experience being autistic.
With something like autism, where there is still a lot of stigma and so many misconceptions, it can become quite toxic to read, hear and feel some of the things being said and written. This affected me, and still does of course, but I’ve increasingly learned the importance of filtering what comes in from the outside. Of course, give people the benefit of the doubt. Listen to and respect what they have to say. But then rationalise, critique and re-frame the things that feel wrong or bad and seek out the positive. This seems to become a lot easier the more knowledge a person gains about autism. Seek out people writing from a neurodiversity or social model of disability perspective or self-advocates standing up for autistic rights. The online autistic community in general is usually a pretty good place to go to feel better about things. I think it also helps that I’m naturally quite a critical and questioning person who does enjoy critically analysing things, especially at the macro societal level. If I can find a logical argument or explanation to counter something that feels troubling, then I feel better. I’d often crave alone time and need to write a lot to make sense of things so I’d feel more emotionally settled again. This usually worked a treat. As if the mere act of writing the words and intellectualsing – thinking about what I was I was feeling – made the feelings magically dissipate to a more comfortable neutral level.
A final point about other people before moving on: I sometimes found it slightly tricky to tell what people were thinking and feeling in relation to my diagnosis. Perhaps it’s just paranoia, but I’d get a nagging sensation there was some disconnect between what people were saying and what they really thought. So, overall, it seems there are some autistic traits – emotional sensitivity, theory of mind difficulties, alexithymia – that can directly influence the post-diagnosis stage, perhaps making it a little tricky to navigate in some ways. This is unsurprising of course – autism informs pretty much every aspect of an autistic person’s existence, especially during times of change, anxiety and strong emotions.
As the days turned to weeks I experienced a massive mix of thoughts and feelings that were pretty hard to unpick, identify or explain to myself or others. Also, things did not progress in a linear way and I never knew what stage in the process I was at I supposed to be at. I would go back and forth between feeling certain things, often for no identifiable reason, or experience very delayed reactions. I only became properly upset once, and this was completely out of the blue a whole week after my diagnostic assessment. It was very hard to understand what precisely was upsetting me. Regret about the past? Fear about the future? Sadness about certain difficulties? Something about the diagnostic process? Something about people’s reactions? Or just general overwhelm? It could have been any or all of these things. In any case, it would probably have been better to simply try to accept the way I felt, to sit with it for a while, rather than to obsess over analysing too much. Sometimes I even think it was the confusion about what I was feeling – not being able to name, fully inhabit or adequately express the feelings – that was more upsetting than the actual emotions themselves. Knowing what I do now, about alexithymia especially, I should have expected to feel confused and a bit uncomfortable. My emotions somehow very intense, yet strangely muted at the same time.
In hindsight, I experienced a bit of an emotional dip post-diagnosis/disclosure. This is pretty common of course, especially (I imagine) for those who receive a diagnosis out of the blue. I remember feeling slightly bad about the fact I was feeling a bit down. I didn’t want to view autism as a negative thing, I knew this wasn’t how I felt, and I didn’t want to convey this to others. But I don’t think my negative emotions were really about being autistic per se. They were more to do with worry about other people’s perceptions (which has thankfully faded with time) as well as some sadness and fear about past and future difficulties related to living in a largely non-autism aware/friendly society.
Following this dip, people tend to experience an upward trajectory as positive emotions and a greater sense of stability come to the forefront the more time goes on. This was definitely the case for me and I remember drawing a diagram of the emotional rollercoaster I felt I’d experienced at the time: up, then down, then back up again (this time higher than where I’d started). It’s a huge over-simplification of course – the process is not so rigid or linear. For example, there were times only a few days after my diagnosis when I felt remarkably normal as if nothing had changed and I questioned why I wasn’t acting more affected by what had happened. Had I properly processed everything? Wasn’t I learning or changing as a result? And now, more than a year later, I can have sudden bouts of feeling very intense about the whole thing. The emotions are still very raw, bubbling away under the surface and can be quite easily triggered. I’ve noticed this is often linked to times when I venture outside my comfort zone and my difficulties suddenly become apparent via the effects of the sensory, emotional and cognitive overwhelm that usually comes from being around people I’m not used to or in unfamiliar environments – especially if the event itself is autism-related. In fact, even reading an article or watching a documentary about autism, if it’s particularly powerful or relevant to my own situation, will make me emotional and completely consume my mind for a few hours.
Here are a few thoughts that were on my mind around this time.
I imagine they are all pretty common, so might provide some indication of what to expect in this early post-diagnostic stage.
- Doubt. I still had an inkling of doubt in the first few days after my assessment. I was honestly still not 100% certain. I hadn’t undergone the hours of questioning and tests that I knew were involved in some diagnostic processes. A small part of me feared I’d overinterpreted my behaviour and provided too much evidence, so that the professional virtually had no choice but to diagnose me! I tried to rationalise and focus on the fact the diagnostician was clearly very experienced and seemed pretty convinced. The doubt faded with time. It faded as I started to discuss things more with my Mum, especially my childhood and her impressions of me. It faded as we realised with increasing certainty that she was also on the spectrum, as well as her own mother. It faded the more I learned about autism, the more I reflected on my past, interpreting things through an autism lens and through becoming a bit more self-aware. In fact, nowadays, I find it more and more amazing that it wasn’t picked up earlier or that I didn’t immediately identify when I first came across the concept.
- Increased sensitivity (or “why am I becoming more autistic?”) This was and still is a big one for me, and I could go into a lot of depth analysing all the potential reasons for it. It does seem to be quite a common pattern though, especially amongst the late-diagnosed. My sensitivity (especially to noises) has been on the increase for a while – a big factor that led me to seek a diagnosis in the first place – but this intensified to a whole new level post-diagnosis. Then there was a heap of other things as well, from increased executive functioning difficulties and super intense focusing on interests, to more rigorous stimming and reduced tolerance for being around people. There are probably a few reasons for all this.
- First, heightened awareness and knowledge of autistic traits may mean I focus on them more. I’m so much more aware of how and why I am bothered by things. This is good, but may also make me more sensitive and intolerant as well, both emotionally and physiologically.
- Second, I gained deeper knowledge about sensory processing issues and the problems it causes me leading me to use more ear protection, which I love. BUT, blocking out noises has most likely contributed to making me more intolerant due to reduced exposure and a sensitisation process and I now feel totally reliant on using ear protection in quite a few situations (I’ll be talking a lot more about this in future posts). The stress of this seems to have had knock-on consequences for my other senses too, especially visual and touch.
- Third, I think I felt more free to be myself (whether in terms of airing varying grievances or indulging in things like special interests or stimming more), at least at home and around my family.
- And fourth, receiving a diagnosis has initiated a big period of change in my life, if mainly only in terms of internal emotional and psychological change. Even if I wasn’t always aware of the impact, it took (and still takes) a lot of emotional and cognitive resources to process which I’m sure must be affecting my senses, executive functioning, social motivation and general tolerance.
- Autism as a new special interest. I’d obviously been very interested in autism pre-diagnosis. But now that I knew for certain, I no longer felt the need to hold myself back. I had so many questions and a need to understand. In fact, I felt quite uncomfortable, even fearful, that I didn’t know everything there was to know. So I ordered multiple stacks of books, dived into reading and researching online, and haven’t looked back since. This has been invaluable in terms of helping me develop more self-awareness and find new coping strategies, as well as understanding others (both the NT majority and other autistic people) and in becoming more sensitive to difference and disability in society in general. It’s provided me with a strong sense of focus and purpose and connected me with a whole new community of people. Plus it’s a lot of fun! 😀
- Increased self-awareness and seeing myself in a new light. I was initially quite self-conscious about my new identity as an autistic person, including around my close family (though this faded pretty fast). Since being diagnosed I find myself having more moments of seeing myself from other people’s perspectives. I had a pretty good level of self-awareness beforehand, but learning about autism gave me even more and, most crucially, the explanation behind the behaviour I was noticing in myself. This applies to social situations, especially. If anything, being diagnosed has made me even more self-conscious and hyper-vigilant due to heightened awareness of everything I do or don’t do and why. But at the same time having this framework for understanding has also made me care less (though I’m still working on this) and be more accepting of what I find hard, which is helping a lot.
- Disclosing and the people around me. This was obviously huge, especially as it had deep personal implications for some of the people in my family as well. I will do a separate post on disclosure when this series is complete. For now, I’ll just say that telling my immediate family really did alter my experience, adding new perspectives and emotions and complicating the picture quite a bit. But the more time has gone on, the more we’ve talked and the more understanding we’ve developed, it’s undeniably been a very positive thing for everyone concerned.
Post diagnostic support
I saw the specialist nurse for the second time a couple of months after my diagnosis. Around this time I still felt some regret at how I’d been too overwhelmed or unprepared to ask questions or seek enough feedback at my diagnostic appointment, so I prepared really thoroughly for this appointment and came armed with a few areas to query (it was still hard for me express myself at length though ☹). She did her best to answer some of my questions, but clearly it would have been better to have asked the professional who diagnosed me. It also reinforced for me the notion that I’m the person who knows myself best. Professional outsiders who only ever spend a couple of hours with you can only provide so much insight. Here are some of the things I asked about (some of which seem quite naïve or pointless in hindsight!):
– I felt a little unsettled by the lack of verbal or written feedback I’d received. I mentioned this and learned that the diagnostician had indeed written a report to my GP which I hadn’t seen (and which I later asked my GP about and was able to read 😉)
– I wanted to know more about the rationale for the diagnosis, so I could get an outsider’s perspective on my autistic traits which might help inform my own self-understanding.
– I was pretty concerned around this time about where exactly I fell on the spectrum. I kept wondering “exactly how autistic am I?” How do I compare with all the other people on the spectrum she’s met? At this early stage I also felt a bit weirdly but understandably self-conscious about “appearing autistic”. It can be hard to have complete self-awareness about this, so I was quite interested to know her thoughts being a trained eye. She quite rightly made the point that you can’t necessarily tell from appearances or outward “functioning” how autism affects a person internally. I now realise this is a pretty impossible question to answer anyway really
– I wanted to question her about the fact I feel I don’t identify much with some common traits (like the ability to read people) and if it was normal to have quite big areas you don’t feel noticeably affected by. She said it absolutely is and kept reiterating how very different all the autistic people she’s met are from one another. You certainly don’t need to have every autistic trait to be autistic. Apparently she’s met some autistic people who are even “better” in certain stereotypical areas (such as eye contact) than some NTs, especially women – some of whom camouflage so well you’d never think “autism” in a million years
– I wanted to ask her if she’d heard similar things from others about some of my experiences, like constant conscious processing of social situations. We talked a bit about a few different aspects of autism and how things like social anxiety, intellectualising, self-awareness and intelligence could be linked.
– I told her about my concerns with sensory sensitivities getting more intense. She said stress would be quite a common reason for this, whilst a simple lack of awareness could explain their seeming absence when I was younger.
I realise now I couldn’t necessarily expect her to give me all this information. At this stage I was at my height in terms of wanting to know things and meet and learn things from others. Yet I felt I was lacking information and answers. At this point I still hadn’t done enough research to develop a fuller understanding of a lot of aspects of autism, or even met any other autistic people. Now, thankfully, I feel a lot more informed (or I at least understand enough to realise that some questions can’t really be answered anyway).
The specialist nurse also asked me a bit about the impact of receiving a diagnosis. I tried to explain some of my emotions, but this was very hard to do at length. She talked a bit about the positives commonly associated with autism and how she envied some of them. I talked about disclosing and finding out my parents also have high levels of autistic traits. She was very pleased that I’d finally told them! I told her how obsessed I’d become with autism and she asked if I had any recommendations for her book list. I fed back about the service, saying I was very grateful for it, but that it could be improved through providing written feedback (which surely should be standard practice?). And finally she referred me to a couple of autism services and also suggested I see an audiologist about my noise hypersensitivity. All in all, it was quite interesting, even if it didn’t fulfill my overly high expectations.