Special interests; intense interests; passions; or the judgmental ‘obsessions’. There are a lot of different labels for the things which bring joy to autistic people across the globe. As an autistic’s support needs increase, the label becomes more insulting – this is where we venture into ‘obsession’ territory – and it also seems that externally perceived ‘usefulness’ or ability to make the special interest ‘productive’ also changes the labelling. For the purposes of this blog I will be using ‘intense interest’ because it’s my preferred term. It may not be the preferred term of others in the community, so don’t get offended if a different autistic person asks you to use a different term.
As an autistic mum to autistic (and otherwise disabled) children, I both witness and experience the feelings of joy and serenity when intense interests are being pursued. I’ve also witnessed and experienced the opposite when these activities are taken away. As an autistic who also has ADHD, I also experience the fleeting intense interest – something which, for a short period of time, becomes an intense focus, only to flutter off into the breeze when the next exciting thing comes along. As a result I have more unfinished projects than I can count, reams of research on topics which no longer hold my attention, and hundreds of books and music files spanning across all genres because I’ll have a great need to read or listen to ‘everything’ in one, but quickly get bored and move onto the next.
These fleeting intense interests are part of the reason you’ll see me write regularly for a while before my blog gets ignored for a couple of years. I always say that this time it’ll be different, but I know deep down it won’t. I started a Coronavirus journal when we first started isolating as a family, and for weeks I wrote in it every single day. It now gets a weekly update if it’s lucky.
I’ve started becoming more sensible with my interests as I’ve become more introspective and accepting of the way my brain works. Rather than pouring money into something which “will definitely be something I’m interested in forever,” I get the minimum amount of ‘stuff’ required to get started, and add to my collection as I stick to whatever it is I’m doing. Never again (although that’s a lie) will I buy a calligraphy set for £20 with the (then) genuine intention of becoming an expert calligrapher, writing in beautiful swirls and being asked to write people’s wedding invitations, only to remember my hand-eye coordination leaves a lot to be desired and the fact I can write legibly at all is a miracle, let alone adding flourishes.
My new interest has prompted this post as I’ve had a bit of an epiphany regarding how my brain works. Before I go into the main bulk of this post I must add a caveat: this blog is about how my brain works and how intense interests work for me. Some autistic people may relate to it, you may read it and gain some insight into how your autistic child feels about the thing that’s holding their attention at the moment. However, the opposite may be true for some. I’m speaking for myself.
With that out of the way I’ll continue with the post. My current intense interest is running. I didn’t mean for it to happen, but it did. I used to run (sort of) back in 2016. I’d recently become friendly with one of the mums at school that Dan was friends with as a teenager, and I thought she was really cool. I still do. (I won’t name her, but she’ll know who she is – sorry for being embarrassing!) This mum had started running a while before and it had helped her wellbeing immensely. I was going through a really bad time with my mental health. I’d had a full breakdown the year before (see this post if you want to read more, but be warned it contains details of suicidal ideation and planning) and I was looking for something to make me feel better, and to help shift some of the weight that my Mirtazapine prescription had piled on. She talked to me incredibly enthusiastically about the benefits of running (turns out she’s neurodivergent too and this was – if I can be so bold to assume – her intense interest at the time) and got me really excited to start – I even signed up to do a half marathon before I could run a mile without pausing for breath. That half marathon (and my lack of serious training) ended my ‘running career’ as I got injured part way around, and I haven’t really run since.
Fast forward to now. I won’t bore you with lots of details, but I have weird physical things going on which are still under investigation, but in February or March I was given the go ahead to exercise, so I started thinking about running again. I remembered the sense of achievement, and the excuse to get out into the fresh air, and I wanted to give it a go. I spoke to the same mum friend about it as she has quite significant health issues to get some advice. It was really great and sensible advice: Don’t go too fast, aim for time on your feet, Jeffing is definitely a good idea, don’t bother with Strava.
Her advice became my intention. I thought about it some more, ordered a single sports bra and a pair of running leggings from Amazon, and dug out a pair of running shoes I had in my wardrobe which are a bit too narrow and not designed for people who overpronate like I do. I was being sensible: not spending too much money until I know I’ll stick to it. I was also definitely not going to download Strava. I wasn’t even going to look at how far I’d run…
Like lots of people in the 21st century I wear a smart watch. Like most smart watches, it automatically tracks exercise. When I went out for my first run on Wednesday 15th April I had no intention of caring about numbers. By the time I’d finished reading the stats from Samsung Health when I got home, running had become my newest intense interest.
What’s the difference between an intense interest and a hobby? I hear you ask. There are a few things, some of which hold more weight depending on what the interest is. For running I know a lot of what I say will be how runners feel in general, but I’d say the defining factor is how strong the linked emotions you feel are, and gaging whether if they’re applied to other interests they become less ‘socially acceptable’:
The numbers matter
Despite my intention of not caring, despite knowing I’m not as physically strong as I was the last time I started running, and despite only doing this for myself the numbers really do matter to me. That first run I did 4.78km and I was disappointed. If I had only run a couple of hundred metres more I’d have done 5km. This then became the goal. It was essential I ran 5km the next time I went out. It would have only been my second run in years, 5km was a silly target! But that need to see the numbers outweighed my sensibilities. I downloaded Strava again, got the app for my watch, and I went out the next day.
Unfortunately, as per the multiple negative reviews on the Samsung App Store, the Strava watch app didn’t record my run. I was furious. Without the numbers nothing mattered. It didn’t matter that I’d been out, that I’d had a good time, that I’d seen horses. I felt as if I needn’t have bothered. Luckily, I found out that Samsung Health had automatically recorded as a backup, and I could see those precious numbers: 7.83km.
Since then I’ve been recording the runs using Samsung Health and uploading the results to Strava. Despite this being a bit of a ball-ache, I need to see the numbers and I need them to be on Strava in order to fully experience the joy this activity is giving me. This leads me onto my next point…
I must have as much information about my interest as I possibly can
Distance and time are no longer enough. I need more. I discovered that if you use the manual workout button on the Samsung Health watch app, you get a full map of where you’ve been and you get trophies, a bit like Strava. However, you don’t get the same level of detail that Strava provides. It still wasn’t good enough.
After a bit of investigation around the Strava website and the Samsung Health app, I found that you can download a .gpx file from Samsung Health, email it to yourself, then upload that to Strava using the full website (rather than the app). That means I can guarantee my watch has recorded my runs, but I can also get the Strava detail that has become so necessary to my enjoyment. I need to see my performance on certain segments, the cumulative monthly total, the Personal Records (PRs) from the past that I want to beat in the future.
I’ve even added the shoes I’m using to the equipment log. To do this I had to find the box, Google the style to make sure it was the right box, and then add it to Strava. This seemingly unnecessary information which took a little while to gather means that I’ll be notified when it’s time to buy new shoes – you should only wear them for 300-500 miles, a fact that I had to learn because I need to know everything. I’m going to change mine at 250 miles because they don’t really fit right, but I’m still trying to be sensible so I’m not getting new ones now, despite the temptation. If I reach a cumulative 250 miles I can almost accept it’s not a fleeting interest.
I keep checking the information I have
I now check Strava and Samsung Health multiple times a day. Looking at the details, checking the numbers, planning what my next run will be all adds to the joy. To an outsider it looks like I’m obsessing. That I’m winding myself up and pushing too hard to get to the next stage. To me it’s relaxing. I like seeing the changes in pace. I love looking at my PRs and wondering when I’m going to beat them. It brings me joy to look over them again and again to see what I’ve achieved.
I need to keep talking about it
Be it in real life (sorry, Dan) or online, I need to tell people about it. I post results of my runs across all my social media platforms. I’ve joined a running club on Facebook to try and keep it off my main newsfeed (though this isn’t working at the moment, I’m just posting results in both places). I message my friends on WhatsApp to keep them updated on my progress. I’m aware that it’s probably annoying, but I really need to do it. Again, it’s part of the joy for me: I want to share this thing that’s making me really happy with those I care about. Sometimes I’m posting to get a bit of positive feedback – today’s 10km is a prime example because I’m really proud I did it – but often I’m just posting to get it out of my system and I don’t need a reply, though if I have one it makes me really happy.
I also need to talk about my future plans: where I’m going to go, what equipment I’m going to buy next (I’ve ordered another running bra, leggings, shorts, and a hydration belt – all sensible at this point, I think), what my goals are. These are things which are constantly swirling around in my head, and if I don’t talk about them I can’t focus on anything else; it’s like they need to get out of my head via my mouth.
I need to make it bigger than it already is
I’ve only run seven times – including today – since I started back up. I’m already planning on running the Cardiff Half again with a friend. The thing is, the crowds really scared me last time, and I swore I’d never do it again, but I have this unstoppable urge to turn my interest into something ‘productive’ so I have an excuse to do it more: oh, I have to be able to run regularly because I’m training for a half marathon.
It’s also a feeling of needing to be the absolute best I can be at whatever my interest is. For me, running 5km a few times a week to keep fit isn’t enough. It’s like the saying: go big or go home. I need to run the furthest, become faster, move to trail running, be able to run up a mountain… It doesn’t end. It becomes everything.
That’s the point: it becomes everything. I’ve even found a way to turn it into a blog post!
I know there are going to be a number of runners who read that list thinking, “yeah, I do all of that too.” The difference is that it’s ‘socially acceptable’ to be this focussed with an interest like running. This is how my brain works for all of my intense interests. Take autism itself as a brief second example:
The numbers matter: I learn statistics about all elements of autism – prevalence, the discrepancies in the figures quoted depending on who’s quoting them, number of people included in research studies, etc.
I must have as much information about my interest as I possibly can: I need to learn about co-occurring conditions, I read research papers for fun (although fun is a bit of a misnomer here as a lot of the time the research makes me cross, but I still have to read the papers), I as much as I can from blogs, books, and other autistic people I follow on social media. I need to know everything possible.
I keep checking the information I have: I will check the books I have about autism (the ones worth keeping, anyway) are still on my bookshelf. I bookmark research papers. I have certain autistic people on Twitter I will keep checking on because they write interesting things, and if they haven’t posted anything new I re-read what they’ve posted before. It sounds stalkerish now I’ve written it down, but it’s not about the people, it’s about their words.
I need to keep talking about it: Anyone who knows me will have heard me talk about autism more than anything else. I’ve spoken in the Senedd about it. I’ve led school assemblies. If I hear the word ‘autism’ anywhere I will start talking about it. It’s one topic which will get me talking to strangers. It’s compulsive; I can’t stop. If I’m on an autism course I pre-warn whoever is running it that I won’t know when to stop talking and for them to tell me to shut up.
I need to make it bigger than it already is: I make autism my voluntary job. I write about it. After my degree I want it to form part of my post-grad studies. I need to make a career out of it. It can’t just be something I’m interested it – it’s become my life. It’s become everything.
I’m going to finish by saying that it’s really important to let an autistic (or otherwise neurodivergent) person engage with their intense interests. They form a huge part of their mental wellbeing, and although I try and turn them into something ‘productive’ that’s very much a me issue, and intense interests are all valid and enriching, even if you as an outsider can’t see it.
My re-checking stats and books are still orderly and where I left them is equivalent to someone else’s lined up toy cars having to remain in the exact pattern on the carpet until they’re ready to allow them to be put away. My research into autism and running is equivalent to someone else’s Star Wars facts.
The only thing which bothers me about my interests is not knowing whether they’re going to ‘stick’. Autism has – it’s been an intense interest since about 2014 – but something else may only last a week. There’s no way of knowing either because the intensity of the feelings is just as strong at the time. So, sorry if I’m annoying you with my running stats; it may only last a month, or it could be forever. I’m hoping it’s the latter because it’d be great for an intense interest to cater for my physical health as well as my mental health. Until I know either way I’m going to keep checking Strava, I’m going to keep chasing the numbers, and I’m going to remain ‘obsessed’ because frankly, it’s good for me.