The life and death(?) of a special interest: navigating fluctuating autistic ability, passion and motivation

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Preamble

Back in June/July I started what was meant to be a 3-part series on my autistic burnout/mental health episode. I wrote two posts back then, but it’s taken me until now, November, to write the third and final instalment (which by now has actually morphed into a fourth instalment too).

Whilst I don’t think I’m ever going to be quite the same way I was prior to June, I have more or less recovered from the experience. My mental health is still fragile at times, but generally it is alright. And I’m now in a place of being able to reflect on what happened with greater clarity and perspective, feeling I’ve learned some things about what I want and don’t want, what would be good and what would perhaps be less good. Now it’s simply a question of figuring out how to work towards these wants and needs whilst remaining emotionally well and balanced in pursuit of them (which, of course, is far from simple at all). Basically, of turning realisations into results. So less thinking, more action. Less writing, more outing. Less comfort zone, more ring of fire kinda thing. Eek.

As I already alluded in the July post, I came to 2 main realisations following the burnout, which can be summed up as follows:

– People!

– Purpose?

Essentially, I realised that I want to dedicate more time and effort to expanding my social life. And, second, I’ve been grappling with the question of work and interests and finding purpose, that is with how I spend the non-social (or less social) part of my life. 

The social side of things is not something I really want or need to blog about (at least not for now). My aim basically centres around trying to grow social connections and making that a higher priority in my life than it has been to date. It’s challenging, but it requires more talking and doing (precisely why it’s challenging), as opposed to sitting at a computer thinking, writing and blogging. It’s also a major reason why I’ve stepped back from the work I was doing around autism (much more on this below).

What is of great relevance to this blog, and to the portion of my life that is about thinking, reading and writing, is the question of purpose. And, related to this, the question of work (or of no work/non-work), and of special interests (and non-special interests or of ‘special interest death’ I guess :’o).

Before we dive in, a couple of notes:

Re. the term ‘special interests’ – This is the most commonly used phrase for referring to autistic interests that are above the (neurotypical) norm for an interest in terms of focus, passion and engagement levels. However, I have come across some backlash against the term (e.g. that it sounds a bit demeaning and infantilising, see here for example). Whilst I definitely sympathise with these views, I still feel compelled to use the term. I’m a creature of habit and it’s hard to shift from using a phrase that has become so etched in my mind. Above all, though, I’m not sure there is a huge amount of ill feeling against the term ‘special interest’ within the community (anyone feel free to correct me if you know otherwise), and probably quite the opposite? I also use the abbreviation SpIn because it’s fun and faster to type, along with ‘intense interest’, ‘passion’, ‘hyper fixation’, ‘obsession’ (which personally i do like) in order to switch it up a bit :p.

Re. doing research for this post: I did zero (0) research or reading of other people’s stuff whilst writing this. Unfortunately, that felt a little too much like SpIn engagement for my brain to take (and it’s particularly hard for me to engage with other people’s stuff, which I regret, because it’s so interesting… but that’s precisely the problem, it’s too interesting and then I do too much and end up losing myself in it all). I do, however, remember reading two things a year or two ago on this topic which clearly stuck in my mind and which I may as well link to here: Autistic and Cheerful on the difficulties of being an activist. And a post by Briannon Lee titled ‘that sad and scary place between special interests’ (which i actually cannot link because it’s disappeared off the internet, but i reference it a bit later). 

Also, my blog posts have become so long (9k words? fml :S), that they now benefit from having a contents. So there’s that. This helps me with the writing and editing, especially because I struggle to write linearly, and it may well help readers with navigating it too. Given the dissertation-sized length, I realise it’s hella presumptuous of me to assume anyone might read the whole thing. But I needed to write this, I can’t seem to help writing so much, and chopping it up into separate normal-sized chunks just feels somehow wrong to me. So here it is:

  • A brief history of my SpIns
  • The life cycle of a special interest
  • Finding purpose in social justice SpIns
  • Is it possible to resurrect a special interest?
  • SpIn death, burnout and mental health loopages
  • SpInning for fun vs. work

  • What am I going to do about all this?

A brief history of my SpIns

So what’s been the story with special interests in my life up until now?

In the early days of discovering autism/being autistic, I didn’t fully relate to the stuff about special interests. Actually, I think I even concluded that I’d never really had one. Turns out that reflected a big time lack of self-awareness… And upon further reflection, I realised that my intense interests had pretty much coincided with my favourite school or uni subjects, hence making them pretty well camouflaged. I’m not entirely sure why this happened. Because it seems fairly common for autistics to develop interests that are quite specific, even niche and also self-initiated and self-driven. Whereas mine were pretty broad and more or less in line with whatever I was supposed to be focusing on for school or uni. Maybe I lacked the curiosity of mind to discover my own sources of interest. Or maybe I was lucky to happen to love what I was being taught, who knows. 

For me, at school, this was various aspects of Geography, and then by uni I was pretty consumed by all things International Development. The latter lasted two, perhaps three, years. I tried to keep it alive for about another year (which involved crazy acts like considering accepting a place on a PhD course to study something which I actually no longer cared for), but failed and eventually moved on without too much thought. This death might have been because my course had ended, so I was no longer being fed information, nor did I perhaps see the point in working so hard at it (getting good grades was still a really strong motivation, despite the intrinsic pleasure that was undoubtedly fuelling me).

More importantly, perhaps, during this time I was also in the process of gaining a new special interest, this time in personality psychology. It took me a while to realise that I was gaining this new interest. I was working FT at the time, and had very little spare energy to indulge. But after I left my job (which was for many reasons) I became totally immersed and started proudly and confidently declaring that I’d found my passion and purpose in life. I researched and wrote, made promises to myself and even a couple business plans of sorts to launch into the world.

That lasted two years. Again, it seemed to fade naturally in part, but also because a new interest was again on the horizon. And this time it was big. Far bigger than the previous two (which is saying something). There was no mistaking it either this time. I knew full well what was coming because I was discovering what a special interest was. I was discovering autism, and autism was discovering (and in all honesty, overtaking) me. And now I could recognise it for what it was, which seemed to make it all the more awesome. I became consumed as before, but also like never before. The intensity was a little insane. The insatiable thirst for knowledge. The addictive feeling of learning something new, the collecting and categorising, highlighting and synthesising. The reading, writing, researching, brain-buzzing, emotion-swirling intensity of it all. What is more, I was utterly convinced I’d be carrying on like this for the next three decades, minimum.

Now, I really really really do not want to have to say this. But…

This lasted 3 years.

Almost exactly.

So clearly, the pattern plays on.

And eek, this is actually the first time I’ve properly admitted it to myself:

My intense interest in autism lasted 3 years.

In other words: It is no more. *cue internal panic* D:

But, but, but, I find myself asking… Is this truly truly the case? And if it is the case, is there anything I can do about it? Moreover, is there anything I even want to do about it?

Let’s explore! 

 

The life cycle of a special interest

It’s curious that every one of my intense interests (which, to be fair, only number about three) have fizzled out within two to three years. It seems like more than mere coincidence to me. I know it’s not ‘an autism thing’ generally-speaking, that passions should automatically start to die at the two year mark. Some of us have interests that last only a few months, others an entire life time, and everywhere in-between. The two/three life cycle could well be an autism-specific-to-me thing though, and maybe many of us do have repeated patterns like this, whatever the precise time spans involved.

I often wish that I could have an intense interest that would last forever. Not only do I wish this, but each time I gain a new one I am convinced that this is precisely what will transpire. That I have gained a passion and purpose for life which will never die and that I don’t have enough time or years in my life to ever be able do it justice, but I’m damn well gonna try. Absolutely convinced! However, now that I’ve spotted the pattern of how this tends to play out for me, I’ve become much more wary of this belief of mine and better attuned to the more realistic, evidence-based process that is likely to unfold instead. (A case in point: I am pretty sure I’m developing a new special interest, the fourth one in my life, just as the autism one has been fading :0)

I’m not sure ‘fading’ is the right word though? Certainly with my autism SpIn, it was a case of one day I am doing this at 110%, then the next day there was literally nothing there. I should say, though, that this did involve quite particular circumstances (discussed more below). Also, if I’m honest, I’d been feeling a gradual fizzling out of the love in the months prior, even though my engagement levels hadn’t dropped (and in fact were higher than ever).

But why does the loss of a special interest pose any sort of problem? Especially if there happens to be another one right there waiting patiently (or not so patiently) in the wings as replacement. If we no longer feel that burning urge and passion to engage, then what’s the issue with letting go?

Many, if not most of us are perfectly happy where our SpIns are concerned. They bring us joy, we have sufficient time to do them, we often do them a lot, but not so much that other important things get sacrificed. Certainly, many of us will struggle at times with managing our interests in the sense of needing to pull back and do less when we really wish we could do more. Life doesn’t always make doing so much possible or very easy or even necessarily a good idea. So sometimes it can be about trying to rein in the SpIn, fitting it around everything else and finding balance, whilst letting ourselves indulge as much as is practical and as helps our wellbeing. Something which I feel is less talked about, though, is the very opposite of the above: that of wanting to resurrect a lost passion. And more specifically, trying to navigate a situation whereby the heart says ‘no’ (but also a bit ‘yes’) and the brain says ‘yes’ (but also a bit ‘no’)… Or maybe I’m just speaking for myself about such internal conflict? :S

I’ll explore this debacle more below. But for now, I wanna say this:

The truth is, I’m quite sad. And disappointed. And more than a little resentful. Sometimes I’m even kinda raging at myself. If I wasn’t, if I couldn’t care less that I’ve stopped engaging with autism things, then there’d be no problem. I could move on without too much thought, live and let die. But there is a problem, and multiple ones as well. Because I happen to care. And a whole lot too. I’m going to try to explain why there are problems and why I care. (And then hopefully see what I might be able to do to make it all nice and better *fingers crossed*)

(On the plus side, though, I’m finding I have A LOT of motivation and feels for writing about this autism SpIn death business. Dare I say, I’m getting special interest vibes in relation to writing about the death of said special interest… which is perhaps something at least? :p)

 

Finding purpose in social justice SpIns

There’s another pattern at play across my intense interests: they all have to do with social justice. This is very clear with numbers 1, 3 and 4 (poverty reduction, autism, and LGBTQ+ issues), perhaps less clear with no.2 (personality psychology stuff… although I think Susan Cain of the Quiet Revolution did proclaim the cause as one of the most important social justice movement of the early C21st? I’m not sure though…). And more generally, there’s plenty of indication that gravitating towards social justice issues is a pattern that plays out in the autistic community more widely. Common examples tend to include autism itself, animal welfare, climate and environmental issues, feminism and LGBTQ+ rights.

What might explain this trend? There are numerous factors, which may include hyper-empathy, a need for/love of justice, a need for/love of fixing problems. Often it is some combination of sheer intellectual curiosity at how the actual f— such problems have come about and how they might be solved, merged with an acute felt sense at the unfairness and absurdity of these problems. They are absurd because of the bigotry and greed often involved in making them problems in the first place, and yet they are also highly complex, often seemingly intractable issues as well, so they appeal to our problem-solving sensibilities.

The other obvious factor is that as autistic people we occupy a disadvantaged minority group status ourselves. It’s understandable why many of us acquire SpIns in autism: we want to better understand ourselves, and by implication others as well; we see and personally know the difficulties and injustices that can come with being autistic in this world; we want to help others understand and we want to make society a better place for our kind. In terms of our involvement in other minority groups and rights movements, there are many common overlaps with the autistic community which help explain this. Being LGBTQ+ is a big one, so are other forms of neurodiversity, as well as chronic illness, physical and intellectual disabilities.

And even if we don’t personally fall into any additional group besides ‘autistic’, it is often the case that the experience of being in one minority group is a big help and motivation in relating to the experiences of other forms of disadvantage. It can provide us with the empathy and drive to involve ourselves in social justice even if the specific issues don’t concern us personally. There are a lot of commonalities in experiences across various minority groups. Patterns of discrimination and prejudice are just that, patterns. So they tend to play out in similar ways, regardless of their precise target.

For me, though, I think it has to be personal (which is one reason I so admire people who advocate on issues that aren’t personal to them). Aside from my first SJ special interest – where I was looking at poverty reduction strategies in Africa (so pretty far removed from my daily reality) – all my SpIns have been highly relevant to my life. In fact, this is what made them SpIns in the first place. I made new discoveries about being part of these communities. This provided big time motivation to learn as much as possible and to become highly emotionally invested in the process. It became hugely important in developing self-understanding, learning about others’ who are more similar to me than most, and it was great for mental health and self-esteem stuff too (you realise you’re normal in your difference, there are very good reasons for it, and you’re not alone, etc). As I touch on in the subsequent post, I am very into self-improvement (or at least the idea of it), and I seem really to need any interest of mine to feel personally relevant to my life and to be of some use in improving it. I get a lot of hope and motivation from thinking that each day has the potential to be better than the last thanks to helpful new things I’m attempting to learn or do for myself. Self-improvement doesn’t work at all linearly, but it can help move us in the direction of an upward spiral at least. And I find this to be really good mental health wise. Even if stuff is going really badly, being able to focus on making it better is the number one thing which seems to help me. I think I’m getting a little diverted here… But this does also link to the broader sort of purpose around helping others. Because lots of people deal with similar issues, even if we are talking only a minority of the population (which is the entire point where social justice issues are concerned of course). 

This need of mine for personal identification is also one explanation for my SpIns dying. Studying poverty reduction was fascinating to me and I felt a lot of much empathy in relation to it all. But ultimately, I suspect the main reason it faded is because it felt too distant from my lived reality (and especially at a time when I really needed to start finding some answers about myself). When I was all into the personality psych stuff, that really helped move my self-understanding in the right direction, but it was still very far from enough. So I dropped it as soon as I discovered autism provided the complete explanation. And now, yes, I am still autistic as ever :p, but I’ve since discovered I am also other previously unknown things, like queer, as well as other things i’ve long known about myself but feel like coming back to and finding more balance within. In sum, the rise and fall of the interests parallel my own process of self-discovery until I eventually reach a point of normalisation, where what is at first a huge identification and perhaps (a very useful and understandable) over-compensation starts to settle and rebalance with other aspects of my identity and interests.

I’m being reminded here of a wonderful YouTube talk about autism by Christan Stewart-Ferrer. He suggests that the post autism discovery/diagnosis journey often encompasses a distinct set of phases as self-identity shifts with increasing knowledge and growth. Below is a snapshot of the ‘self-integration’ phase (the ‘get involved in ASC aspects in a more subtle fashion’ is screaming out at me in particular!). Along similar lines, this blog post by Julie Dachez discusses her rebalancing of identities post-dx (apologies because it’s in French… but her illustrations do kind of say it all :p)

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There’s another aspect about SJ interests and pursuits which can make them vulnerable to fading: burnout. This relates to the emotionally taxing nature of inputting a lot of stuff into your head about ableism (or homophobia, or racism or environmental destruction, or whatever it might be) and of encountering brick walls over and over again when trying to make progress against these things. It can easily become too much after a while. I can see this, and I even felt it a bit, despite the fact I barely even got started with anything advocacy-related. For me, it’s not that I can’t engage with ableist or distressing content. Actually, it’s the opposite. It consumes me. Because I start caring too much. And it’s not always so sustainable to be consumed. I found myself getting overstimulated and angry and perhaps overly critical. It’s frustrating when you want to scream at people to stop doing something, but there’s no satisfactory outlet, so there’s nowhere for those emotions to go, and it makes you start to question whether things can ever change. With SJ causes, the work is never done. In a way, this makes them fantastic and bottomless sources for curiosity, passion and purpose. But equally, the realisation that the work is never done, can easily bring on feelings of pointlessness and resignation ):

And then, with the being members of one or more minority groups ourselves (and even more so as disabled people), our spoons and resources are already likely to be lower than your average person. Activists are vulnerable to burnout, especially if they are disabled or dealing with discrimination of their own, and especially when discrimination or accessibility barriers are cropping up and being exacerbated through the doing of the activism work itself.

To round up this section: Autistic SpIns in social justice are fairly common! This is awesome and we should be proud of ourselves for doing this sort of work (whilst acknowledging it certainly isn’t for everyone, interest-wise or spoons-wise, and that’s perfectly okay too)! There are clear difficulties involved in doing this work, such as the risk of burnout, or of simply losing interest, identification and motivation. There is zero shame in this. But equally, for those of us who want to continue in spite of struggling, we need advice and support and community to help us do so.

 

Is it possible to resurrect a special interest?

Here, it helps to focus on why I have lost my autism interest. First, it’s important to note that this process of losing was not a choice. This is because acquiring a special interest is not really a choice either. I don’t pick them, they pick me. (Though there may be some grey area here..? As in you choose to do something and it becomes a special interest through the doing of it. So whilst you don’t consciously make something a SpIn, you did choose to start engaging with the thing… so.)

There’s clearly something more than a little ambiguous and uncontrollable, if not entirely mysterious, about how SpIns work. Something very chemical and physical, an addictive quality, almost drug-like, but in relation to information (or perhaps a skill-set) rather than substance*. We might feel a surge of relief and buzzy joy rushing through our body and brain. There’s this craving, a very real need. When I was at the height of my autism interest, I noticed that I’d crave these ‘hits’ every couple hours at least. After a while of not reading something, I’d feel this vague but undeniable discomfort and an irresistible pull towards Getting More Information!! I’d feel instant satisfaction as soon as I did, and then the craving would pop up again a few hours later. That stuff can’t easily be controlled, nor easily faked (or at least not at the expense of mental wellbeing I suspect).

(*I feel it might be a little insensitive of me to draw out the parallel to addiction. So forgive me for this, but it has helped me understand a little better. For example, I heard somewhere that addiction is about wanting/craving something without (necessarily) liking it. I think, for me, this SpIn death business has been the precise opposite: I like it but I now no longer want/crave it. So essentially, I think it is a situation of wanting to want in the absence of actual want.)

In other words, there is likely some sort of chemical attachment process going on that feeds an initial interest, causing it to grow into something intense and spark those unmistakable special interest feels of hyper-focus and fascination and motivation and pure unbridled joy :D. I suspect a lot of this might have to do with newness (although also, really not, because many of us love nothing more than the familiar and repeated when it comes to our SpIns (ah the contradictions of autism :p)). But for some of us, myself included, there is a craving to learn new things, and it has to be new. At the start of a special interest almost everything I learn is Brand New Information, and this is a large part of what makes it so thrilling. As time rolls on, and I approach the peak of the interest, I increasingly start to see the same things repeated over and over. This is also thrilling, because pattern-seeking and confirmation and growing confidence at understanding things. But then, there comes a point where learning new things is not so frequent. There’s still a hell of a lot to be learnt, but it takes more time and effort to do so, and a lot more wading through things you’ve already seen a million times. During year 3 of my autism SpIn, it became increasingly rare that I would learn something new. It still happened, of course. But they were smaller things, less mind-blowing. I’m guessing specialisation and the development of expertise is the key if you want to keep discovering newness about a topic you’ve exhausted in a more generalised way. But I somehow never did that with autism. Nothing specific grabbed my interest above all the rest. The thrill for me was in trying to know about every aspect of it. Unfortunately, this is not really so possible. It also comes at the expense of deepening knowledge.

It’s not all about the newness though, not at all. Because I’m still very far from knowing much at all and there clearly is a lot of newness out there waiting to be discovered (or created). I still have so many questions and confusions, everyone in the field does (and if they don’t, they’re probably doing it wrong). I simply reached a point where I’d achieved some level of satisfaction with what I knew and then lost my previous motivation to seek out newness and keep searching for those answers. And now, honestly, when I do find bits of new info, I no longer feel as excited about it as once )’:

I’ve lost a lot of that raw chemical buzz that motivates and propels. Sure, I still get feels from time to time but they are watered down, dampened, less at the forefront of my thinking. Moreover, some new emotions have crept on in, and honestly many of them are a bit bad. I was and still am a bit surprised by and guilty for these negative emotions. How something so joyous could completely flip out on me and become more a source of bad than good? I’m not sure I’ve heard much talk about autistic people growing to resent – as opposed to simply fall out of love with – a (former) SpIn, but I’m sure it must happen. And then I remembered Briannon Lee’s post from a couple years back (which I mentioned in the preamble). It appears to be offline now, but here’s a passage I’d saved from it (perhaps i was subconsciously anticipating this outcome at the time :S):

‘Recently, a restless anxiety was consuming me. I looked at my podcast lists searching for something to listen to on a long car trip. I felt repulsed by every single podcast there. I had somehow saturated myself on every topic, and the thought of  another chirpy unschooling podcast, motivational wellness podcast, or reflective spiritual podcast made me feel sick. Later I noticed my kindle was full of unfinished books that I couldn’t bear to read… I am living in that dreadful space between special interests. I never realise until I am there. Until I find myself feeling sick with disgust at my old interests and desperately seeking something to latch on to.’

So it is possible to have feelings of repulsion, sickness, dread, and disgust in relation to a previously much-loved SpIn? These words are quite extreme. But they’ve honestly matched how I’ve been feeling these past few months. I would go as far as to describe it almost as a physical sickness at times. And reading that passage makes me think perhaps I am not so unusual in this. And I guess it even makes sense? Love can turn to resentment in other contexts, so why not this one too? It would be an interesting thing to unpick further, in terms of why feelings of disgust and repulsion arise for some of us, whilst others can move on with seeming ease, without so much as a backwards glance.

 

SpIn death, burnout and mental health loopages

There are two dimensions to the burnout which led me to suddenly, and perhaps irreversibly, stop engaging with my autism SpIn – 

  • The cognitive – this consisted of many weeks of literal inability to process information through reading and a total mental block when it came to thinking about SpIn stuff. Whilst I still don’t feel totally back to normal, I have now regained a large part of this capacity.
  • The emotional – this is perhaps the more intractable side of the problem. It’s all rather confused and messy, including a loss of of chemical feels, a loss of caring but perhaps combined with too much caring, which creates fear about re-engaging… I discuss this in way more depth in the final section of this post. 

It is a very grey area the extent to which my SpIn loss can be attributed to the onset of burnout/mental health issues (which had a trigger external to the SpIn, see my previous post for more), or alternately, more to a natural fade in the chemical feelings of attachment which I described above. Perhaps I was always going to live through this loss eventually. The burnout episode may merely have intensified and speeded up what was going to be an inevitable outcome.

This one day in June, I was busying away with research and book-writing, pretty much 100% invested and with zero idea of what was about to go down. The next day I stopped… And the stopping continued for a few more days after that. It was unheard of me to stop, especially in such unplanned fashion. But I had no choice in the matter at the time. It was a lack of ability, pure and simple. My capacity for processing external things, any things, but especially this stuff, was completely shot.

Before I knew it, it had been a couple weeks, then a month. By then I was questioning if I even wanted to go back, or whether I should, presuming I’d recover the ability again sooner or later. Then it became a weird tangle of ‘Is this a motivation issue, or is it an ability issue?’. Did I no longer want this, even if I had the ability to keep going? I eventually admitted to myself I had a motivation problem, in that even outside the effects of burnout, anxiety and depression, I might well not be able or wanting to continue down my planned path.

I’d decided things needed to change, you see. I felt very wary about going back to the autism work, at least in the same fashion or to the same degree of intensity. It all became rather messy. Because a lot of my anxiety/depression feels were related to the issue of how I’d been spending (and not spending) by time, which directly implicates the autism SpIn, given how it had basically taken over my life. I realised I was somewhat regretful and resentful about this. I was prompted into a wake-up call about my priorities in life: what I’ve missed out on, and what I want more of going forward.

But at the same time, I had loved doing this work. Even if it didn’t always feel like fun (and let’s face it, we’re talking activities such as reading neuroscience papers here), it provided me with big time sense of purpose and satisfaction. I can’t say for sure how the past three years would have been without this, but I strongly suspect they would not have been as good as they were. So perhaps some of my regret and resentment is rather misplaced (even if it is acting as a useful signal that it’s time for me to move on, or grow in some new direction).

To this day, I am still unsure how much stopping my autism SpIn intensified (or perhaps even played a large role in creating) the depression of those few months. SpIns constitute a massive source of pleasure, comfort, motivation and purpose for autistic people. Taking all of that away, and especially in a context where additional stressors or triggers are already present, seems like a recipe for the perpetuation of bad feelings.

In many ways, of course, this is precisely how depression works. It can become a self-reinforcing spiral as it sucks away ability and motivation to do the very things that are probably most likely to help keep it at bay. I knew this. So I told myself getting back into the autism stuff might be a smart move in trying to get past the depression. This was back in July. It’s now November, and I’m still yet to return (unless writing about the death of a SpIn counts as SpIn engagement hah)

There’s good news though. The depression is so much better now! The perhaps less good news: this clearly had nothing to do with returning to my autism work. In retrospect, there are other very clear reasons to explain the improvement in my mental health (including something as simple as the passage of time). But the fact it didn’t take re-engaging with autism is perhaps something for me to pay attention to.

I’ll finish this section with another extract from Briannon Lee’s fab post:

”If you know an autistic person, adult or child, know that the space between our passions is always terribly unsettling. Sometimes it feels bleak, for there is nothing to be excited about, nothing to dig in to. Sometimes it feels lonely, for we have lost our way of connecting with other humans. Sometimes it is scary, because we have taken away the only thing holding our mind tethered, keeping anxiety, or mania, or paranoia, or depression at bay.”

The take away: SpIns are important y’all (as if we don’t already know :p) But also: they might not be everything, because balance ^_^

 

SpInning for fun vs. work

Autistic special interests are notoriously good fun. We want to do them, we need to do them, we often cannot help but do them. And they provide us with an overall big source of joy and satisfaction. They meet most of the criteria for fun in our books, even if they might not always look like what is deemed conventional fun to other people.

Some of us are lucky enough to carve out a career or source of income through a special interest. In these instances, I’ve wondered whether turning a SpIn into a job risks sucking much of the fun out of it? Or… are these lucky souls truly living the dream of SpInning 9 to 5 and getting paid for it?? It’s often the case that turning a passion into a business or having to work a 40+ hour week at something you love, can simply start to make you love it less. Autistic people may well fall inside this phenomenon (although I can imagine that many of us might be more immune to this process than most).

For myself, my interests have been fun for sure. But they’ve also occupied a lot of grey area between fun and work*. This is because I have a tendency to turn my interests into what looks like a FT job, except that I don’t get paid (a downside), nor do I have to leave the house (definite upside). The time spent has a lot to do with this: my interests consume me, I want to do them all the time, so in terms of answering the question ‘what do you do?’, well, this is quite literally what I do. The nature of my interests also has a lot to do with this: they are about consuming, collecting and creating information around what are quite serious and necessary topics. It’s a lot easier to convince yourself your SpIn is your job when you are spending the day reading reams of research, mulling over theories, trying to get published and seeing an important cause and means of trying to help people (as opposed to, say, spending the day in bed watching a SpIn TV series – awesome as this undoubtedly is (;). (Although, for the record, I do have significant amounts of guilt around spending time on work that isn’t really work. Despite it seeming like work in many ways, it doesn’t fulfil basic criteria for (what society deems) work, like being remunerated, or working with others, or answering to a boss and doing what you are told.)

And the longer my interest goes on, the more it starts to look like this – like work, and not fun. And it’s not only about what it looks like from the outside. It’s about what it feels like on the inside too. It becomes increasingly obsessive over the course of a couple of years, until something snaps and I seemingly cannot do another day of it. It starts to become less ‘I have an unstoppable desire to do this’, more ‘I have an unstoppable compulsion to do this (and I’m really not sure whether this is either good for me or sustainable in the long-term)’. I’m not quite sure at what point it starts to tip more towards compulsion, or why this is. But the feeling is quite unmistakable, if hard to accept (or at least it was for me). Compulsion is where the thought of stopping or letting go seems impossible… and yet the thought of doing so increasingly comes to taste a lot like freedom. (But then, to myself, I am like, ‘What freedom though?’ ‘Freedom from what?’ and ‘Freedom and then what?’ Freedom in itself, by itself, with nothing else, is not enough, nor really is it anything at all. I need to do something. I need to attach to something.)

It’s a tad frustrating that this cycle keeps playing out in my life. I mean, I know it’s not uncommon for autistic interests to die like this. And that’s okay. Its perfectly fine and natural. Many of us will likely be able to move onto to new sources of fun, often with great enthusiasm. The problem is when we have made it our work (or we act as if it is our work), and then all of a sudden we simply can do it no longer. This might entail losing a source of income, social status, an actual job, letting others down, letting ourselves down… For me, the fallout is pretty much all in relation to myself: the broken promises I made to myself. Whilst I do have this sense of external pressure and obligation, it is entirely imaginary and I hadn’t actually progressed far enough with the work for it to really impact on other people (although it was heading that way via the publishing route, which was perhaps another thing that made me pull back when I did).

I am questioning, though, whether losing enthusiasm for autism stuff is really a legitimate reason to pack it all in? Might I be expecting too much with feeling that I need to love what I’m doing in order to do it? Isn’t that in fact entirely unrealistic, especially over the long-term? Presuming non-autistics lack the ‘special’ in special interests (the poor souls), then doesn’t the autistic loss of that ‘special’ simply bring us back down to regular levels of liking things? And the NT world seems to (more or less) get by working with regular level intensity love for things (if that), so shouldn’t we as autistics expect ourselves to be able to do the same?

This is an interesting question which points to several wider and over-lapping issues. That of autistic motivation: If we are by nature more intrinsically motivated than most, then it may well be harder for us to keep engaging with a declining passion – whether in the form of paid employment or otherwise – when all the other extrinsic reasons for doing so simply mean less to us. There is also the even more basic issue of ability: many of us may simply be unable to keep going with something we no longer feel for, even if we very much need to (as in for a job) or even very much want to (brains are weird). If we are wired to be quite all-or-nothing, then we may well find it hard to maintain moderate level of interest and engagement in something if the ‘all’ becomes no more (so it’s either ‘special intensity’ or ‘zero interest’, with ‘regular-level liking’ being harder to come by). 

A lot of this stuff will have to do with individual circumstances, and also with the degree of loss (I’m sure SpIn death comes in many degrees after all – from a slight loss of that burning passion but still liking and revisiting, to total rejection and even disgust). Trying to work out how you feel about a declining SpIn, what’s changed about your feelings and what hasn’t, whether it might still be workable and what might need to change to make that happen, are all likely to be questions worth considering, tough as they undoubtedly are.

*By ‘work’, here I am referring either to something one needs to do (for financial/standard of living reasons) or that one feels obliged to do (i.e. it’s not strictly necessary in terms of survival, but there is a feeling of want or compulsion to do it for whatever reason – perhaps societal expectations, pressure from specific others, pressure from self in the form of emotional commitment or moral principle, and so on). I’m actually very interested in the concept of work, particularly ideas around bs jobs, post-work society, the 20-hour work week, basic income, idleness, etc – and the intersections with disability of course – so I may well blog on these topics in future 😉

 

What am I going to do about all this? Reasons to go back vs reasons to let go.

Despite my negative feelings and some degree of inability, I’ve come to realise that I am very resistant to letting go of my autism SpIn. This is unsurprising given that it’s been quite a huge change, from 100% investment to complete ghost town in terms of activity. I’ve attempted to list out the reasons for this resistance below. Some of them are potentially important, i.e. reasons to consider picking it back up again, whilst others are less good reasons for going back, and may point to a reality that requires accepting the loss (but also in some ways the growth it has come from and resulted in) and to simply move on. 

Reasons I don’t want to let go:

– I’ve invested so much time and energy. It feels like a massive waste to give up on what I’ve worked hard to produce so far.

– I have a strong need for closure and it makes me feel super uneasy knowing I have so many unfinished pages, ideas, sub-projects, and loose ends etc etc floating about. I realise this is not a good enough reason to go back though. I want to be able to be happy with things being abandoned, left unfinished or put on hold if it turns out that is what’s best.

– I really hate breaking intentions and promises, including to myself. I believed I would be doing this for years to come, if not forever (I never seem to learn from past experiences in this regard). This makes me feel I can never completely trust what I feel, say or commit to. Because I was so sure. Sure that this was it for life, that it would never change, let alone die so fast and seemingly completely. I’d basically found my life purpose or passion – that thing which self help gurus and career coaches keep harping on about, and which truthfully a lot of people never manage to find. I found it for sure, for a time at least. And that’s a privilege. So I have resistance to losing that, or to admitting I have.

– What would be the alternative if I do walk away? I’d have major guilt about not doing a work-like thing for a start. So I may well have voids to address in terms of self-esteem, purpose and simply filling time. 

My relationship to my autistic self and identity. This one is a little tricky for me to unpick at the moment. But I’ve definitely been feeling a loss of novelty, excitement, and even pride about the fact I’m autistic. Perhaps i’m even undergoing something of a backlash? Although backlash seems a little extreme. I suspect it’s something more of a rebalancing act involving being less fixated on the autism aspect and on filtering every single through the lens of autism (not that there’s anything wrong or unnatural about this whatsoever). I’m guessing this is perfectly normal a few years on from a diagnosis. But now I’m thinking I might have swung too far the other way? That I’m ‘forgetting’ what being autistic means for me (or sometimes even that I am autistic). I don’t like this because the reality is that I am different, I’m supposed to be different, and that’s fine and in many respects a very valuable thing as well. Knowing these things about myself and remembering explanations for stuff has probably been the most helpful thing ever, so I don’t want to lose that. And actively learning and engaging with autism stuff is a huge help with this. In many respects (though not all), doing work around autism has been really good for my mental health and self-esteem, and not just because I’m engaged in a meaningful project. It’s because of the actual content of what I’m learning, content which really helps me personally, in terms of self-understanding and seeing how I fit in with others who are similar to me or not so similar to me.

I love the autistic community! Even if the SpIn feels towards learning about autism itself have dwindled, I want to keep being an active part of this community, learning from it and finding connections within it (and in fact far, far more so). I in no way need to be attempting to keep up with all things autism or to be doing advocacy to make this possible, but i’m guessing it wouldn’t hurt (;

– I feel a sense of social obligation to do this work. Not so much on a personal level in terms of upholding specific ties or commitments. But more in an abstract sense of I really believe in this cause, that working towards bettering autistic rights and realities is important, worthwhile and quite under-addressed in the wider scheme. It is something which is greatly needed right now. There aren’t enough people working towards this.  But at the same time, there are a lot of people working towards this, and it is growing and gaining ground all the time, so there is much to get involved with. Rightly or wrongly, not being part of this gives me a lot of FOMO. Maybe this fomo is dumb, or maybe it’s trying to tell me something important about what I want to be doing. I realise there is really no need to feel any obligation. The sense of obligation is entirely imaginary. No-one expects anything. And even if they did, it’s ultimately up to me what I choose to engage in.

All that was maybe a little depressing… But there is still hope! Because there’s an additional reason I’m resistant to letting go:

I am actually far from certain that my autism special interest has in fact truly died.

I’m not entirely sure I believe this belief of mine which is telling me I cannot go back (even if that going back might need to look quite different from before – more on this in the next post). I’ve never successfully sustained a SpIn work/passion project for more than 3 years, despite always wishing I could. But right now, I’m feeling that I want to give it a try, that I at least owe myself this. Even just for the curiosity… to see what might happen, to see if I’m still capable. Even if it is just to end up proving myself right, that this resurrection malarky simply does not work (whether that’s just for me, or whether it might point to a more general autistic thing as well).

So I’m starting to suspect that this isn’t as clean a cut as my brain is perhaps tricking me into believing. I do feel super conflicted about it, split in multiple different directions, after all. I think it might help to try to dissect what I have lost vs. what I might still retain. There are many dimensions to this SpIn. I’ve definitely lost some, but perhaps not all:

I’ve lost (if not fully, at least in large part):

– Those chemical excitement feels that seem very particular to autistic special interests

– Intellectual curiosity, motivation and stamina

(and honestly, losing these two are big bads because they’re clearly quite integral)

I’ve not lost:

 – Love for autistic community

 – An intellectual sense of the importance of this cause/movement and imagining myself as part of it (i.e. that I ‘should’ be part of it, ‘it makes good logical sense for me to pursue this’, even though I might not necessarily have a strong emotional want or ability)

What is a bit more ambiguous:

My feelings about the importance of this cause/movement and wanting to be a part of it. With this one, I do still get feels, but they’ve faded and also become a bit bad in some ways (as I explained earlier)

In sum, I do still care. On an intellectual level, also on an emotional/empathic level. But there is something big missing in terms of personal chemical, emotional and cognitive goings-on. That intangible thing that seems beyond all control. There’s also been a definite loss of ability in terms of capacity to read and think and write and engage in this issue – whether that’s simply a symptom of motivation loss or something entirely separate and perhaps more pervasive is hard to say (perhaps the latter bc any intellectual work is kinda hard).

On the other side of things, I’m obviously resistant to go back for a reason/multiple reasons, and many of them are probably quite legitimate.

Reasons to let go?

– Thinking about going back makes me feel some combination of panicky, overwhelmed and trapped (though there are a couple positive emotions in the mix somewhere too, like curiosity and excitement perhaps). As previously stated, the thought of not going back tastes a lot like freedom, honestly. And of openness, possibility and unrestraint… Which probably isn’t the greatest sign? I need to consider what is making me  feel ‘un-free’ about this autism stuff.  Is it something I can change about the way I engage with it? Or is there a much more fundamental issue, potentially preventing me from engaging at all?

– I really need and want to focus on other things. So going back or not is also a question of being able/not able to do these others things – which might be a variation of things, or one thing in particular (like a new SpIn… which I’m currently doing a great/not so great? job at batting away… because as someone who is basically unable to have more than one SpIn at a time, that surely would signal defeat)

– I struggle with being too all-or-nothing, so may become re-obsessed to the point of other important things falling away. (The length of this post alone is a massive case in point). I often find it super hard to get started with things, but once I do and I find I like it, it can be extremely hard to stop, like opening the floodgates.

So actually, in large part, it’s a fear about not being able to control the interest, of it overtaking everything, that is contributing to the not being able to do it in the first place. And if the not doing entails a loss of interest, then this fear is essentially contributing to a (rather ironic?) dying process perhaps. 

So it’s all a bit split and conflicted. I may or may not decide to continue with autism content. If not, I may or may not continue with whatever other sort of content that might appeal to me. Most likely, I think, it won’t be so black-or-white, and rather some in-between place, and a question of degree. I fear I’ve been looking at all this too black and white. Because clearly this loss is not a clean one. It is but a hazy grey zone. Ode to that grey zone (thanks BANKS!). Perhaps I should attempt to live in that grey a bit, muddle through it, see what path I can carve through. Middling and muddling through various identities and their intersections. It’s the balance thing again, of course, and the difficulty of navigating through that.

I’m considering doing a little experiment! Rather than hypothesising about what is essentially an imaginary ‘what if’ scenario, it may well prove easier simply to take action and then just see what happens. I think the feeling might be in the doing? That it takes doing something to find out if you (still) like it. It could be that it is the act of engagement that cultivates passion and motivation, and that stopping the engaging is really what has produced, or at least exacerbated my situation. Taking action may give me clearer knowledge about my cognitive capacity to do this work and my feelings about doing it.

Also, and quite importantly, I’m not sure I have a huge amount to lose from trying? As I’ve already alluded, a ‘reasons to not go back’ list might include:

– Further time and energy that could be spent in other ways (fun things, social things, letting myself explore a new burgeoning SpIn)

– Because of all-or-nothing tendency I fear ‘doing some’ will slip into ‘doing nothing but’. I worry about getting re-obsessed. Especially now I realise I need and want to have a more balanced life and avoid the risk of burning myself out again.

– Making promises to myself to do stuff which I might then not be able to fulfil is disappointing. I could feel worse if I try and then end up failing anyways.

I think I can live with these things (except the ‘getting too obsessed again’ thing – but see my next post for more on this). Whereas I suspect I’d probably regret if I chose to walk away at this point. So I’m going to try to go back! To test how I feel and see what I can do. I will be back very shortly, and this time with a plan of action :D.

 

3 thoughts on “The life and death(?) of a special interest: navigating fluctuating autistic ability, passion and motivation

  1. “I often wish that I could have an intense interest that would last forever. Not only do I wish this, but each time I gain a new one I am convinced that this is precisely what will transpire.”

    Same. I always think “I could make a career out of this!”, only to soon realise that no, I couldn’t, because it’s almost certain that my interest will drop off suddenly at some point in the future.

    My brain won’t focus for long enough to read all of your post at the moment, but I’ll definitely be back to work my way through it as it’s something that’s really interested me as well.

    Like

    1. Thanks for your comment 🙂 The interests dropping away thing can be a real problem if said interests are so intense you start pursuing them as studies or for work
      Sorry my post is so long haha :p

      Like

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