In this post I discuss some of what I’ve learnt about myself, my life, autism and various other things, along with some of the changes I’ve tried to make (or, alternatively, not make) since my diagnosis in summer 2016. The post is entitled “2 years on”, but I actually wrote most of this in Spring 2018, then subsequently “forgot” (i.e. procrastinated) about it for a while before updating and editing it in December 2018. So technically it is an account of my thoughts somewhere between 1.5 and 2.5 years since diagnosis, which averages out at 2 years anyway.
Before getting into the details of my own life, I want to spend a bit of time discussing the issue of “change” following an autism diagnosis in more general terms. (I’ve also touched on this very topic in anther post if you’re interested in reading more.)
One huge issue that tends to arise post-diagnosis is the question of change. Specifically, whether or how much you feel you need to change, want to change, should change and can change, in which ways and for what reasons. Where do you draw the line between what you accept and embrace about yourself and what you might want to change? Should you expect for expectations to be adjusted post-diagnosis, and if so in what direction or under whose influence? Those who have just received a diagnosis are likely to have been experiencing recent difficulties in their life, which might make the need for change especially strong. The sudden influx of new information and understanding that an autism diagnosis brings, can trigger a new level of self-awareness and motivation which typically makes post-diagnosis a time that holds a lot of potential for change.
But this doesn’t mean that making changes is easy, especially in the context of autism. How can you change (especially if you face roadblocks of varying kinds)? Is change even the right option for you? Or is change inevitable, something that is always going to happen to us no matter how much we might resist it? Perhaps the key lies with trying to gain better control over changes that are going to happen anyway. Which changes are the right changes? How are you supposed to know what “right” even means? We may have difficulty identifying our own needs, or even preferences, or distinguishing between fears that we have for very good reason (because something really isn’t a good fit for us) and fears that are holding us back from things we really want and that could be overcome for the better. What if we feel pressured by expectations coming in from the outside, or if we feel conflicted by our own defences? How are we supposed to know how much change we can deal with (especially if this seems to fluctuate over time depending on our energy and sensitivity levels)?
A lot of tricky questions, no doubt. But for some things, it’s almost a no-brainer. For instance, with new knowledge about sensory issues it makes sense to take a look at your daily life and environment and to try to minimise the impact of as many triggers as possible. This might not always be as easy as it sounds, but these are still comparatively small changes – even if they go a long way towards improving a person’s wellbeing (which is precisely what makes them no-brainers). These sorts of changes centre around adjusting the environment and making adaptations around the person to help make life easier for them. The trickier changes, perhaps, both from an ethical and practical stand-point, are those centred around changing the person themselves. Some autistic traits can be problematic for the person concerned or for those around them. But there can also be a danger that comes into play if improving or changing yourself starts to fit a bit too comfortably with notions of becoming “less autistic” (which ultimately might mean “less you”). Some autistic traits may be very hard, even impossible, to change and may require accepting instead. Indeed, there are also many neutral and positive traits that would definitely benefit from acceptance at the very least.
I’ve written quite a lot elsewhere (e.g. the previous blog post, also my forthcoming book) about the wider theoretical framework for considering change, especially the ethical debate around how much we should expect the individual to change versus focusing on societal accommodations (as essentially encompassed in the medical versus social models of disability). In this post, I’m going to focus on the more practical and personal side of things. I’ll list some of the main changes that have occurred for me personally in the months since receiving a diagnosis, including those that were deliberately chosen and adopted, as well as changes that naturally happened to me, whether for good or bad.
What’s changed in my life 2 years on?
In a way, a lot has changed since my diagnosis. In other ways, nothing much has really changed at all. Perhaps this is because there are different sorts of changes, and some forms can take a while to makes themselves apparent – especially in the context of something like an autism diagnosis which can take a lot of time to process. Receiving an autism diagnosis was huge, one of the best – and certainly one of the biggest things – to have ever happened to me. I’ve discussed previously how I was initially impacted – from the first few hours and days after, up until about a year later (focusing especially on the emotional aspect). So check out this post (link) if you’re more interested in this side of things. Below, I’m discussing more concrete changes that have happened in my second year since being diagnosed. Have things changed now that I’m further down the line? And how might I expect them to keep on changing in future?
Here is a list of the changes – big and small – that have occurred since my autism diagnosis (whether I welcomed them or not). Some were things I actively pursued to improve my self, my environment or relationships with other people (although I haven’t written much on the latter – I think this might require a separate post!) Others were unforeseen or problematic changes that, as I’ve said, happened to me.
Feelings about autism and being autistic
(Note, for some discussion on how I’ve progressed in my actual knowledge about autism, the autism world and the autistic community, refer to this post).
Feelings about my diagnosis
I feel that some of the negative emotions I had post-diagnosis (or that I think I had – see alexithymia below) – sadness, regret, frustration, etc. – have dissipated quite a lot. However, it is hard to be sure about these things and I do still experience largely inexplicable and sometimes unidentifiable fluctuations in my feelings. I know that I feel somehow troubled or overwhelmed (and I know it is in relation to autism and being diagnosed – because it happens only after watching, reading or talking about certain autism-related things) – but I don’t know exactly how or why I feel the way I do. As I mentioned, this is alexithymia in action. Also, interestingly, I sometimes think it might be the alexithymia causing me to feel overwhelmed more than the actual triggering emotion itself.
Update December 2018: I would now say that I have mainly only positive emotions attached to autism/my diagnosis/being autistic… and even that my approach is perhaps what some may say is “too positive” (though I don’t think this is really a thing). (A lot of this, of course, is due to the fact I have a very intense interest in autism, and it’s hard not to feel very positive about one’s “special” interests.) When I look back on the early post-diagnostic days, I think I was conducting somewhat of an intellectual operation on my own emotions. I was somewhat in a mode of telling myself that I should feel positive, that I want to feel positive, that it is bad, pointless and counterproductive to feel negative. Whilst I was definitely feeling more positive than negative about autism and my own diagnosis, I think a significant part of this was at an intellectual level (hence why I thought and wrote at one point that I feel as though I am “lying” to myself about feeling positive). Now, however, I cannot mistake the fact that I feel overwhelming positive, proud and passionate about autism and being autistic. It is a real feeling, one that I actually feel, and very strongly, independent of any intellectual thought. And it seems to keep growing with time. I don’t even need to think about it or check in with myself, I just feel it. And the happy feeling always seems to be there whirring around in the background, even if I’m not consciously focusing on it. Needless to say, this is great and I love it. It may indicate that the intellectual approach I took earlier actually worked, or else it was just a natural progression that was always going to happen anyway.
My perspective on other people’s perspective
In the past couple of years I’ve increasingly come to realise how much misinformation and prejudice there is out there about autism. This certainly isn’t the fault of autistic people, or even the “perpetrators” themselves. It’s very much a systemic thing (ableism) which is precisely what makes it so pernicious, powerful, often invisible and hard to fight against.
My feelings about how others feel about autism have fluctuated quite a bit. But, overall, I have progressed to feeling a lot more sensitive to seeing others propagate misinformation and negativity. The evolution in my thinking has been most obviously reflected in my language use, including in quite subtle ways (e.g. in editing this article 9 months after first writing it, I find myself disliking and deleting all the instances of “affected” (by autism) that I had seemingly used without awareness or concern at the time – it just feels too medicalised and negative). At first, I had to engage in some self-policing in order to stop myself repeating certain words that I disliked but that I was hearing or seeing on a regular basis. Now, it’s almost always natural for me to avoid these words and phrases and their underlying sentiments. What I do find a bit hard, though, is seeing other autistic people using “pathology paradigm” language. It makes me feel a bit irritated and sad, even though I know they have every right to use the whatever terms they please. This doesn’t stop me thinking, though, that this would and should be changed if there was more education and discussion around language. I think it’s important, and something we shouldn’t dismiss as minor or as all about individual choice (our language choices have wider societal implications).
Perhaps this increased sensitivity isn’t really surprising considering some of the following factors. I’ve learnt more about what autism really is and what it is really like – in all its diversity – and this inevitably takes me further from mainstream accounts. I’ve learnt more about ableism, about disability as a social construct and about how wrongly disabled people in general have been (and still are being) treated in this world. I’ve started venturing into the self-advocacy scene which is populated with so many interesting and progressive-minded people. In spending so much time reading about autism and the experience of being autistic, I inevitably receive a lot of repeated exposure to language, ideas and practices that are irritating to hear about, erroneous, hostile and sometimes downright dangerous. The repetition starts to grate after a while. And no, I haven’t desensitised to it, nor do I think this would be a good thing. I am more sensitive, more irritated and more angry about the way autism is commonly (mis)represented and responded to by many autism “experts”, some parents and by society at large. But I think this is a good thing. We need to be sensitive and angry about these things, otherwise nothing is going to change.
Self-awareness about my autistic self
In the weeks following my diagnosis, I was still in a place of some degree of doubt, confusion and lack of awareness about my autistic ways. Also, and something I find quite problematic now, I felt concerned with where exactly I was on the “spectrum” (now a term I’m not overly keen on, let alone with the notion of wanting to “fix” myself to one place on it) and with trying to compare myself to other autistic people that I encountered or heard about.
Now, having learnt more about myself through the lens of autism, and about autism more generally, I’ve obviously gained a far more accurate self-knowledge (whilst avoiding falling into the trap of asking “how autistic am I?” – “how am I autistic?” is perhaps a far more useful question). This includes insights into my life at various points in the past and about some of the changes I’ve been experiencing more recently (see the “more autistic” section below). Overall, though, I would emphasise that it can still be hard to get a clear perspective on myself at times – how I am autistic, how and why various traits can be subject to change over time or across contexts, and so on. It can also be tempting to try to compare and contrast yourself with NTs or other autistics. This can be useful to a degree, especially if you are making meaningful comparisons, but in general it isn’t really the healthiest. I’d recommend just trying to focus on understanding yourself (although others can certainly help with this – especially other autistics*) and on comparing yourself only against a previous version of yourself (if this is helpful).
*I came across a great quote by Elizabeth Bartmess, an autistic self-advocate, recently that speaks to this point – “let’s keep exploding with collective autistic self-knowledge”.
Self-consciousness about the autism label
The more time has gone on the more comfortable I’ve become with the thought and knowledge that I am autistic, and more precisely with the knowledge that others know I am autistic. I was never uncomfortable per se (and certainly not in terms of how I viewed myself), but I was quite self-conscious about the identity in the eyes of others, partly because of the magnitude and new-ness of it all, and partly because I was very sensitive to how I knew most people would interpret an autism diagnosis – as something that is essentially negative. Initially, it felt weird knowing that those around me were seeing me through this new lens. I felt slightly vulnerable talking about autism, and even just using the word.
All this has changed now. It has changed hugely. Partly because autism is a special interest (so how could I not want to talk about it), but also because the mere passage of time has served to make it less of a foreign-feeling thing in my life. Knowing I am autistic now feels comforting, it feels like home and it feels like me. In the earlier days, I also felt some degree of self-consciousness, even paranoia about whether and how I “appear autistic” to other people. I try to care a lot less about this now. I actually find comfort and pleasure in noticing when I do “act” or “appear” autistically in some way, and in noticing this in other autistics too.
Update December 2018: For the past few months I’ve been walking around with no less than three autistic pride/advocacy badges pinned to by backpack (with one being rather large and noticeable). Initially, I felt pretty self-conscious out in public, and would even take measures to cover them up at some points (rendering the whole exercise pointless). But, in large part, this is precisely why I wanted to wear them out in public. I wanted to face and overcome these feelings, feelings that I didn’t want, that weren’t really mine, and that shouldn’t be there – feelings of self-consciousness and even shame about being autistic. And it’s truly amazing how quickly desensitisation kicks in – now, most of the time, I tend to forget they are there.
Meeting others autistics
After being diagnosed, it was a few months before I took steps to meet other autistics. This took the form of an opportunity I was lucky to be presented with: there happened to be a dedicated “autism centre” for autistic adults in my city which runs various social groups and drop-ins. I felt a need to take a more active approach to socialising with people other than my immediate family, and meeting other autistic people seemed like an obvious place for me to start. This was very scary at first, and it can still make me anxious nowadays (although looking back now, the decrease in my anxiety over time has been quite huge).
A big change that has occurred since being diagnosed relates to my level of social motivation. For perhaps the first time in my life I actually feel positive and excited about socialising with people (outside of the few people I am close to). I still get anxious, but this has lessened considerably as I’ve become increasingly familiar with the environment and the people there. I would actually characterise the anxiety more in terms of a positive adrenaline (as opposed to involving emotions of fear and dread). I have a strong motivation to want to connect with others despite the difficulties and related social anxiety (i.e. my body gets into a heightened state despite the fact I want to be there talking with people).
I feel I’ve done okay in terms of getting involved and talking a bit about autism and things in general with some of the others in the group. I’ve certainly made acquaintances, and am perhaps progressing to friendship with some people. I’ve surprised myself in this regard and feel I’ve become a lot more practised and comfortable in verbal self-expression and simply being and (somewhat) relaxing around others I don’t know well. At the very least, I feel less self-conscious and more self-accepting about various autisticky things I might do. Of course, it should be easy in an accepting environment full of autistic people, and venturing into the non-autistic social world (especially if people are unaware of your diagnosis) does seem rather more threatening.
Things haven’t always been smooth and easy in this particular autism social group. I’ve often felt some frustration – either because the environment hasn’t been right for me to get properly involved (too much blah blah or distracting background noise), or because of a lack of people (or lack of the “right” sorts of people that I’m personally able to connect with). So in some ways my (overly high?) expectations to make meaningful connections, even close friends, haven’t been met yet… I still have some hope, but need to balance this with the realisation I will likely need to try other places as well.
It has been a very valuable thing to be around other autistic people and I’ve felt some connection and sense of belonging with a handful of people I’ve met, even if these were just short-term encounters. Beforehand, “autistic people” had felt like a bit of an unknown entity to me. Not having met any others, it was easy to have stereotypes and a lack of realness in my conceptualisations. Now, I have a better feel for what we are like, how we are different in different ways, the similarities we share, how we are just like anyone else, and what makes us different to the majority people.
Putting myself out there socially has sometimes been challenging because it highlights the difficulties I have, sometimes quite starkly. Having kept to myself a lot in the past has perhaps contributed to me not necessarily having a very clear focus on various social difficulties purely through a lack of regularly exposing myself to challenging social situations (obviously I knew, but I wasn’t constantly in situations that reminded of the fact, and when I was perhaps I was in denial or simply lacked the understanding to comprehend what could be going on with me). Now, with the autism knowledge, it’s been interesting to observe and analyse these issues through the lens of a new set of explanations (e.g. auditory processing issues and resulting meaning deafness), providing me with an all-important understanding about why things can be hard. I’ve found it especially interesting how much easier or harder socialising can be made according to the environment and the type of people. So, in a way, I’ve been realising just how very situation-dependent many of my social “issues” are. At the same time, though, the autism knowledge highlights just how pervasive and probably intrinsic certain aspects can be as well.
Trying to “improve” my “social skills”?
This is something that was at the very forefront of my mind following my diagnosis (something along the lines of, “wow, I’m autistic.. do I need to “fix” things about myself, and how can I do it?”). I was thinking about taking measures to actively learn rules around small talk, non-verbal communication, even considering whether I could start being more expressive and lively with my face, intonation, gestures, etc (i.e. making more effort to “pass” or “mask”).
The more time has gone on, the more this idea has seemed kind of ludicrous. First, I think it would be very hard – I have a particular difficulty with acting in any way other than how I am/feel naturally (although many autistics, especially females, do find themselves naturally mimicking those around them or actively teach themselves to do so – I haven’t done this much for whatever reason, at least not at a conscious level). Even if I could learn, I’m not sure that this would be the healthiest approach. Where would it lead? To me investing a ton of energy in acting surface level “social skills”, and perhaps with a loss of meaning and feeling as a result, not to mention the after-effects and long-term impact of masking. Social interaction is already draining enough without this.
*Update December 2018: It definitely isn’t the right approach – not just because it it hard, prone to failure and can be personally damaging over the long-term, but also for the ethical reasons (“why should we have to?”, “how can we make society more accepting of autism if we can’t feel free to be ourselves?” etc.)
Nowadays, I definitely fall more within the camp of trying to learn to be around others whilst remaining as natural as possible, with the end goal being to feel good, rather than appear good (and chances are anyway that if you genuinely feel “good”, you will appear “good” and so will the other person as a result). Of course, being able to feel good is a challenge in itself in many situations. But it’s perhaps a more manageable and ultimately healthier approach then investing heavily in mimicking NT non-verbal communication. This might entail learning to be more myself, to relax and feel comfortable, to let go of scripts and “rules” that are artificial or don’t feel good, to be honest and real, and to embrace communicating autistically if this is what helps. I’ve made some progress along these lines. I feel more free to be myself, like I can be more open about my thoughts, feelings, likes, dislikes, things I find annoying or difficult, and like I can avert my eyes more, stim and move around more, take more time before responding and so on. This is clearly much easier in an autistic-autistic environment, but at least it’s a good place to start (and, of course, to perhaps stay!).
Emotions and alexithymia
I have definitely experienced quite a change in terms of my emotional life, namely in that my emotions have been at the forefront of my experience a lot more, sometimes to the point of overwhelm and feeling unable to do anything. Alongside the intensity, it is also hard to understand what I am feeling and why. Discovering the concept of alexithymia has helped me understand this and I’ve come to the realisation it probably affects me quite a lot, and in two main ways. It affects my baseline state which is a state of neutrality and a state of not being that bothered by emotions. But when I do have emotions they tend to be intense and hard to understand (and sometimes I think it’s the very fact they are hard to understand that makes it uncomfortable and intense in the first place). When this happens, I feel torn between wanting to purge these feelings from myself and wanting to inhabit them as fully as possible in order to try to understand them and also to revel in the fact that I am feeling so much.
I’ve never felt more emotional at any other point in my life than I do now. I would characterise my mood and emotions as being quite neutral the vast majority of time, and this was certainly the case for most of my life pre-diagnosis. Post-diagnosis, my emotions have been triggered quite intensely in ways they’ve never really have before. Perhaps I was more alexithymic (and/or perhaps partially shutdown in certain situations) when I was younger, and now I’m becoming better at feeling in touch with myself and my own emotions. Whilst a lot of this could simply be down to age and maturity, I’m sure that the autism discovery has a lot to account for this as well, and in two main ways. First, the discovery itself is a source of a lot of emotions. Second, knowing about my autistic identity has freed me up quite a lot internally. I’ve spent a lot of time alone, focusing on myself and reflecting on my life without many external demands or pressures. I’ve also stopped suppressing some of the thoughts and feelings that I was having before because the autism diagnosis rendered them both explicable and valid.
My intense emotions are triggered by anything that is autism-related, especially following periods of socialising with other autistic people or being in contexts where autism is at the forefront. I still get a lot of feels and emotional overwhelm in relation to these things even 2 plus years on, which I’m a little surprised by. I have difficulty identifying what the emotions are and why I have them. They are very intangible feelings that manifest as aches/surges/tinglings/swoops in my stomach and chest. They last 2-3 days and then dissipate and I return to my normal operational state of “neutral”. Sometimes I like having these feelings and want to grasp and immerse myself in the emotion, but other times it is just too much and I want to be able to move on to other things. A defining aspect of being in this state is that I feel unable to transition into doing anything else that would require much thinking or feeling – probably because my head and heart are already too full.
Have I learnt any coping strategies? I’m sure that merely having the awareness and knowledge about what is happening and why is a massive help. It means I know what to expect and so don’t feel so blind-sighted when I get overtaken by the emotions. The best tool that I can recommend is writing. Before my diagnosis I wasn’t really in the habit of externally expressing my deep thoughts and emotions – either in speech or in writing. I’d tentatively started journaling a year or two beforehand, but it felt quite exposing writing my thoughts and feelings down (especially with the knowledge that others might somehow find and read them!). But post-diagnosis, I started writing copious amounts about how I was feeling and now it’s become second-nature whenever I feel overwhelmed or want to work things out. I find writing is a really great way for getting thoughts and feelings out and for relieving a sense of urgency that I have around wanting to capture, document and explain them. I feel that I can relax more knowing it is all down on paper (even though I rarely look back over what I have written – which shows its mainly in the process, the actual product seems not to matter so much). Writing appears to almost trivialise the thoughts and emotions, taking some of the feelings and impact out. This is good in a way – it makes it easier to process and move on, although the downside is that it makes it harder for me to try to inhabit and prolong the emotion.
Another great strategy I’ve found is listening to music. I’ve found this invaluable in terms of helping me to really feel my feelings. It has to be the right music and I tend to fixate on listening to only one or perhaps two artists at a time (I can find it quite painful to transition between different genres or even artists in a given space of time – although I’m getting better at this now). Of course, the passing of time, especially a night of sleep, is a sure way to help the emotions dissipate. I usually need to leave most of the following day free for me to rest and process without having needing input too much new information – especially not anything emotional or involving other people. This way I’m able to recover much more quickly and find that I feel extra motivated and energised in returning to my usual routine the next day.
Becoming “more autistic”, stress and self-care
So, I’ve become “more autistic”. (Note – the reason I’m using quotation marks is that it’s not really possible to become “more” or “less” autistic – autism isn’t a sliding scale or even a spectrum. Autistic people – just as any people – are simply liable to experience various changes in their traits according to their stress levels which, in turn, are largely dependent on their circumstances and environment.) I’ve written elsewhere about the how of my becoming “more autistic”. In terms of possible explanations for why this has happened, I think there are 3 main reasons:
Stress: My traits have likely increased because of stress-related factors, especially related to the sensory triggers I am currently dealing with on a daily basis at home. Other sources of stress probably include the intellectual and emotional intensity of processing my diagnosis and thinking about what it means for the future, as well as being at a rather unstable place in my life with the prospect of big life-changing decisions around work, home and relationships looming on the horizon.
Awareness: My awareness of my traits has increased massively which probably has some bearing on my self-perception and “how autistic” I seem to myself. So it’s partly simply a question of being more aware of what has always been there.
Acceptance: I’m sure that my traits have increased in reality as well because of the way I’ve embraced autism and relaxed more into my natural self, or how I’ve been learning about and (consciously or subconsciously) adopting autistic coping strategies – the kinds that make you look “more autistic” (like averting eyes, or stimming).
In particular, I’ve gained a whole new awareness around autistic sensory issues. Before my diagnosis, and before even having properly come across the concept of autism, I’d become increasingly aware of my intensifying dislike of noise. But other than this, I didn’t think of myself as being sensitive in any of the other senses. Now that I’ve gained so much more knowledge, however, it’s blatantly clear that I do have sensory issues in pretty much every modality and, more than this, that some of them (noise, light, movement) are probably core to a lot of autistic traits more generally (especially around social and EDF).
My awareness of visual sensitivities has developed as I’ve become more aware of how things like lights, movements, patterns and colour can affect an autistic person. I’ve also found that even just the act of taking in visual input – whatever it is – and especially if is messy, chaotic, unfamiliar – takes up energy. I’ve come across Irlen syndrome/scotopic sensitivity syndrome recently through reading Donna Williams and realise that I identify quite a lot with it. I think my visual sensitivity might explain the issues I have with using technology as well – I find looking at screens (even with the brightness turned down to zero and with colour adjustment) very tiring and overloading after a while, although I think this must be due to information overload as well.
Alongside this growing knowledge and awareness, my sensory issues have intensified to quite a significant degree the past couple of years. Correspondingly, my reactions have become more intense and anger/rage is sometimes an issue, which is wasn’t really before. I’ve never been a meltdown person, but now I’m questioning whether some of the reactions I’m experiencing are sort-of meltdowns, “mini meltdowns” perhaps, because they’re certainly not full blown or totally out of control.
The main way I try to deal with sensory issues is through avoidance – whether through avoiding situations themselves (hard to do when the noise is infringing on the place where you live), or by going into situations armed with earplugs, noise-cancelling headphones and dark sunglasses. I’m also learning to address my reactions when I do get to the point of overload – finding safe ways to release the intense build-up of negative energy so that it doesn’t become destructive – and a lot of this is relatively new to me, hence the (feeling of) becoming “more autistic”.
Below I’ve listed some self-care strategies that I (try to) use to help with processing overwhelm, sensory overload and energy levels. In a way, I’ve been “forced” into this due to experiencing increased sensory issues, nervous system stress and heightened autistic traits, but I think learning a lot of these strategies is only a positive thing and useful to maintain throughout life, even during times of less stress. They include:
- Stimming! – I’ve been taking a more proactive approach to stimming, aided by the new awareness that what I am and have been doing is actually stimming. I feel more free to move my body in ways that feel good or necessary because I now know what it is, the purpose that it serves, and that it is both normal and beneficial for autistic peope. I no longer view something like fidgeting as a “bad habit” to be suppressed. I bought some stim toys, but also find that more “naturalistic” ways of stimming often work just as well – perhaps because these are the ones I’ve grown up with and become used to. I’ve become aware of the ways in which stimming helps me in social situations. I also discovered and semi-purposefully adopted some new autistic stims – especially pacing around and hand flapping – that I tend to do when I’m alone or at home. These really help me process what I’ve just been doing and make it easier to transition to the next thing.
- Meditation – I made it my goal to learn and practice meditation for 2018. I found it useful for the first few months – probably because I was taking it quite seriously. But more recently I’ve been slipping away from practising “properly” and have fallen into something that is more akin to sitting in a meditative position (or sometimes not even this) and just letting my thoughts run wild and loose. This is not strictly meditation because I get lost in my thoughts and tune out of the present when I’m supposed to be tuning in, but I’ve found that even this is helpful (and perhaps necessary to help me catch up with processing) and I think it is better than nothing. I do hope, though, that I will regain the motivation and energy to start meditating the “proper” way again. It sure takes a lot of discipline. And, unfortunately, it seems that the more stressed you are or the more unprocessed thoughts and feelings you have accumulated (i.e. the more in need of being able to meditate you are), then the harder it is.
- Naps – I’ve been finding that my energy levels and processing capacity before reaching the point of overload and a sort-of shutdown have really diminished over the past couple of years. I can only assume that this is the product of heightened sensory sensitivities and increased autistic traits in general. I’ve been getting into the routine of having a nap after lunch which I’ve found invaluable in helping to recover processing space, dampen the discomfort of sensory over-stimulation and regain motivation for the rest of the day. It makes such a positive difference (and science also highlights the benefits of napping), that I don’t even feel guilty about doing it.
- Diet – I made a ton of progress in this area a couple of years prior to my diagnosis when I developed a special interest in nutrition that essentially led me to cut out all processed foods and refined sugars from my diet. I’m still going strong with this and feel confident that I can easily keep it up for life. More recently, I’ve developed greater awareness along the following lines: how different foods make me feel at certain times of the day (e.g. carbs at lunch aren’t great for my energy or mood, but are fine in the evening), experimenting with being vegetarian, vegan, gluten-free and dairy-free, discovering that I had some vitamin-mineral deficiencies, ensuring that I eat regularly to keep my energy levels up (I’ve noticed how before meals when my blood sugar is low I feel anxious and my thoughts are all scattered). Unfortunately, one thing my diet has not helped with are my digestive issues. A part of me, though, thinks that the root explanation for this may simply be stress.
- Exercise – In addition to my usual running routine coupled with occasional dancing around the house, I’ve recently taken up tai chi (thanks to a great introductory workshop at Autscape), and I really hope to get into yoga more as well this year. I like the idea of boxing (though with a punchbag, not a person) and may try to get equipment so I can do this at home in future (I hate having to go to gyms or classes in order to exercise). I should do more of all these things – especially dancing – because they feel so good (especially in the aftermath). Movement is so important, especially for a body with an accumulation of stress hormones and especially in a world where most of us spend so much time just sitting.
There are so many more things I’ve read about which could really be worth a try, especially various mind-body techniques. I came across the Polyvagal theory a few months ago and have been meaning to try out some of its suggestions for de-stressing the body. I also made a sensory diet for myself earlier in the year, but rarely look at it and haven’t been able to make the effort to apply it to my actual routine in any sort of systematic way. I seem to have a major blockage when it comes to this. Perhaps I don’t really want to, or I’m afraid it will be too hard, or I have an issue with starting, or I don’t really find it that interesting, or I feel overloaded with the amount of information and stuff already in my life… which is where the next section comes in.
Information processing, overload, executive functioning, routine and lifestyle
When I first started learning more about autism, I didn’t think that executive dysfunction (EDF) was something that really applied to me. I’ve always been a pretty organised person. But I’ve since realised that there are a number of reasons for this, namely that I instinctively developed various coping strategies that mask the underlying issue, even to myself. One of these strategies was simply feeling averse to taking on too many different things at once. I’d presumed it was just a personal preference or choice that I wanted to focus on only one or two things major things at any given point in my life, when actually it was probably a necessity.
I’ve learned more about EDF and the role that routine and various other strategies can play in minimising it. Executive functioning encompasses quite a broad array of things and whilst there are aspects that I don’t struggle with much or at all, and may even be better than average at (inhibition, self-regulation and control, organisation and planning) there are a few areas where I do encounter problems (decision-making, attention switching and multi-tasking, working memory, transitions). Here are a handful of issues that arose for me post-diagnosis:
- Processing capacity – I’ve become both more susceptible to and aware of information overload, especially around technology use, but also even just through doing things like writing or reading. This has become worse over the past few months, as if I am becoming overloaded by any and all information (both external and internal) in itself, and by the very processing involved in simply existing. In short, it seems to take me a lot more energy to navigate and successfully complete a day than it did in the past. A few years ago, I just took it for granted that I would have enough energy to last the whole day without needing to take a lot of breaks to recoup spoons. All of the strategies listed in the self-care section help me with this. Also, trying to focus on doing just one task at a time, minimising multitasking as much as possible and easing myself through transitions (with time to process what has been and to predict/visualise what is next) are great helps.
- Routine and time-checking – I am very reliant on routine and feel out of sorts when I deviate from it, especially if wildly or unexpectedly. At the same time, I can feel confined and constrained by routine, and it can certainly suck the spontaneity and spice out of life if followed too stringently. I feel compelled to plan out the sequence of activities for the day in my head and this in itself is a source of anxiety (because it can sometimes be hard to do), especially when I become too rigid about the timings of things when there is no real necessity. To circumvent this, I’ve been trying to clock watch a lot less. But I find I can be quite all or nothing with this – the more I keep track of the time, the more I feel the need to. On the other hand, I also did an experiment to see how long I could go without looking at the time – and I managed to look only once a day (quite an achievement I thought!) This was a rather freeing experience, but obviously it’s simply not convenient or possible for most people in most situations (I did the experiment during a very slow-paced holiday when it didn’t really matter what time it was). At the moment, I’m working towards a happy medium – time checking when it serves some genuine purpose and makes my life easier, but otherwise trying not to.
- Transitions – I am finding that making shifts between activities, spaces, states of thought and mood is becoming increasingly hard. Allowing time to process is the key here. I’d recommend taking time to sit or lie down, perhaps close your eyes, breath and let things just process in your brain before trying to visualise the steps involved in what you’re going to be doing next. I find that pacing around along a short repetitive route really helps with thinking. I’ve also noticed in myself that it is the transition itself and the first few moments of the new activity that can be painful, but soon after this everything is fine and the brain seems to shift gears and catch up with the new thing you’re doing. In fact, it seems that the best way to deal with the discomfort of the transition is just to do the transition. You need to move on in order to get over the previous thing you felt stuck on. If you stay in the same place/state, lingering on the edge of a transition, then this can actually prolong the discomfort and the sense or reality of being stuck.
- Excessive conscious thinking, using left brain too much, being too focused on goals and closure – I’ve been realising that I am probably quite left-brain dominant and also find it hard to switch my conscious processing brain off. Whether or not this is related, I can also find it hard to spontaneously feel or follow my wants in the moment. I need to plan things out in advance and am usually excessively aware of what I am doing in the present moment. I also find it hard to engage in things that don’t seem to me to serve some useful purpose, i.e. just doing something because I feel like it or it feels good, as opposed to working on a project with a defined goal (I am an INTJ after all). I am getting better at balancing this though. I’m making a conscious(!) effort to intersperse more right brain, creative, fun or spontaneous activity into my day, things like art, music, dancing, playing guitar, humour, spending time with animals, and with other humans.
- Technology – I have a love-hate relationship with technology and the internet. I need/want it a lot – and perhaps even more than I currently use it – and yet I also need/want less of it because it very easily overloads me. I do need/want it, yet I also need/want to be free of it. I’m sure, like most things, balance is the key. I suspect I am currently using it too much. And despite the fact I want and need to use it for so many things (work, research, writing, social media, entertainment), I’d probably feel better if I used it less. Overall, I have reduced by computer time a little over the past couple of years because I find it saturates my brain and makes my body feel tense after more than a couple of hours (although I push to do at least 3-4 hours a day, sometimes 5, so I can get things done – and this doesn’t even include looking at my phone or iPad).
- Special interests – This one is still very much a big unknown for me. I am still massively and almost exclusively focused on autism (although my other interests around travel and music are making more of an appearance these days too). Yet I have to admit I am feeling less enthused than I was a few months ago. Some of the spark is rubbing off! I am learning less, because I know more and things can sometimes feel a bit stale. I do still feel passionate and very interested in my overall project around writing a book, blogging, connecting with the online autistic community and hopefully getting into doing advocacy through all of these things. But sometimes I do think that a large part of what is driving me is a need for closure – simply to finish what I’ve started (even though I am a very long way off finishing(and “finishing” isn’t even a thing that can be applied anyway – there will always be more to learn, the world of autism is constantly changing, which is great, but can also feel a bit overwhelming and unsettling when you have a deep urge to try to know and keep up with everything there is). Sometimes I get saturated with autism stuff and feel a need to dip into some of my other past interests – to engage with a more diverse range of videos, films, books, communities and topics of conversation. When I do this for even a short while, I always feel a strong urge to focus on autism again. I’m not diversifying (much) yet. And I’m not sure I want to.