A life without SpIns

I am using the abbreviation SpIn / SpIns to refer to Special Interests. This term is often used to mean those hobbies of ours that we are *passionate* about, and which light us up from the inside with energy and excitement. Some Autistic folk don’t like the term “special interest”, which is obviously fine. I don’t mind it, so am happy to use the term 🙂

For pretty much the entirety of my life, since very early childhood, I’ve had three main SpIns –

  • Animals, especially dogs!
  • Nature and hiking
  • Writing and storytelling

These SpIns carried me through some really horrific periods in my childhood, teenage years, and early adulthood. If I was struggling with problems at school (and there were many!) the hour’s walk home through nature was like a balm on my soul, and when I got back I would lose myself in hours of writing. At forced family events where I felt stressed and like an outsider, I would squirrel myself away in the kitchen where my Aunt’s dog was banished. I regularly took her for walks, where we’d be happy in each other’s company and our shared love of nature.

My SpIns kept me alive.

When I became physically disabled in my mid twenties, I lost my SpIns one by one. I had to quit my job and my voluntary work, where I worked with dogs, because my body couldn’t physically handle it.

I couldn’t hike anymore, as there’s so little accessible countryside. What little accessible paths there are tend to be very limited and linear – not to mention that I had to rely on someone else to get me about. It just doesn’t feel the same.

And finally, my neurological disability meant that all of a sudden I couldn’t write. After over a decade of writing fiction for hours every day, all of a sudden it was gone! No worlds to weave, no lives to lose myself in…all just gone.

I was bereft. I grieved for a long time, and felt empty. Gradually I was able to distract myself with what I think of as ‘mini SpIns’ – new hobbies I could briefly absorb myself in and enjoy. I even made a new career out of one. But none of them feel as intense, as captivating, as my BIG SPins.

These last few months have been incredibly stressful, for many many reasons – we’ve had pet deaths, health flares, so many medical appointments, a sick close relative. It’s been too much, and I’ve found myself frequently in extreme burnout.

A key part of escaping burnout is being able to lose yourself in SpIns…but the problem is, I haven’t been able to find any new proper SpIns to lose myself in!

An Autistic life without SpIns is tragic. It’s flat, and empty. Combined with deep burnout, even things that I usually enjoy – like a video game or a roll around an accessible park – have brought me zero joy. I found myself rolling down the canal last week, and trying to focus on the birds singing, the leaves fluttering in the breeze, pigeons – all these things that I usually notice and find joy in. And it just wasn’t happening, it hasn’t been for weeks 🫤

I’ve been desperately trying to find a SpIn to loose myself in, but it’s not something you can force…either your brain clicks with an activity and drools over it, or it doesn’t 😂

My restrictions due to my physical disabilities also make it tricky – I enjoy doing crafts and think I’d enjoy woodwork, but it’s not something my hands are capable of. Likewise I have a love of history, but can’t read complex texts and don’t enjoy internet research. It’s HARD!

Then in my sleep the other night I had a breakthrough! (I can’t be the only one who comes up with some of their best ideas whilst sleeping, right? 😅) As a kid I used to enjoy completing history textbooks aimed at GCSE level students. I figured they’re still probably easy enough for me to understand, and I’d probably still enjoy answering the questions. So I had a look for ones focusing on my history SpIns, and there was a GCSE kindle textbook about medicine through the ages. So I bought that and have really been enjoying it!

Another thing me and my fiance talked about was finding museums that supported my history SpIns, and having day trips to check them out. As someone who is mainly stuck in the same small area day in and day out, that would be really exciting to me 🙂

Finally, my fiance got me a new video game to try through work, which also loosely revolves around a history SpIn.

Since finding these things that make me brain drool, I cannot describe how much more capable I have felt in dealing with burnout / overwhelming life events! Having these strategies to bounce back has already changed how I feel SO MUCH…I can sense positive emotions again, I can look around and feel the beauty in the world, I can ENJOY things!!!

This is why special interests are so important to Autistic people. This is why they need to be supported and encouraged by those around us.

Our SpIns make our lives worth living, they enable us to cope with all the extra pressures and struggles that we Autistics face.

Pigeon post!

Animals have always been a very special interest of mine, literally from when I was a few years old.

My most ‘special’ interests tend to be dogs, pigeons, chickens, and a wide variety of rodents.

We currently have two rescue pigeons. One is a wood pigeon that we found badly injured on a dog walk over a year ago. He wasn’t expected to survive, but he did! Unfortunately because of his injury he cannot fly, and so can’t ever be released. No rescues or sanctuaries would take him (we reached out all around the country, and every single one refused!)…so he’s stuck with us 😂

We then adopted a fancy girl who needed a new home, to be his buddy, and are also currently fostering a collared dove fledgling.

Their base cage is a gigantic (4.5ft) dog crate, which we have on its side. Though it’s massive, and they also spend a lot of time out of their cage, I’ve been wanting to expand it. This is quite tricky as our accommodation is tiny, and it also needs to be wheelchair accessible. I’ve been trying to come up with an idea for quite some time, and today I finally made it work!

May I present to you – Pigeon World 😁🥳

So far only Coco and Rin have gone in the new space on the left, but they’ve both really enjoyed it!

For tax, here’s some photos of Puli the wood pigeon, Coco the fancy girl, and Rin the fledgling dove too 🙂

I’m also going to post a photo of Puli’s initial injury below, we believe this was caused by a bird of prey. I’ll nest the photos – if you don’t like gore, do not scroll any lower!

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I saw Puli walking in the cemetery when we were on a dog walk. I noticed his wing was stuck out, so sent my fiance to go catch him and check he was okay (as pigeons that cannot fly will not survive for long!). When it became obvious he was badly injured we brought him home – I actually had to stuff him up my hoodie, as there was no other way to carry him back without risk of escape 😂

Once home we set him up in a hospital bay and phoned our local vets, to try get him seen by them. Unfortunately they refused to see him because he was a wild animal 😮

We doubted he would survive, but knew we had to try. The most concerning injury was a giant hole in his wing, but he also had a tear on the underside of that same wing, and lots of minor lacerations by his bum! So we washed his wounds twice a day, treated them, and also had to hand-feed him as he wasn’t eating due to stress…and yeah, much to our surprise and joy, he made it 🙂

Overloaded

Sometimes I can feel like I’m doing really well and enjoying a trip out – then suddenly, ‘out of nowhere’, I find myself far too overloaded and having an Autistic meltdown 😬

Afterwards I can usually work out dozens of triggers that I missed – thanks alexithymia for meaning I’m unable to identify my own emotions / the fact I’m struggling until it’s far too late 🙄

I had this happen today and, on the way home, found myself shutting down and unable to communicate verbally. I knew I was close to meltdown, and became frustrated because I’d had so little warning.

I asked my fiance to leave me at the park, as having to “mask up” enough to communicate in ways that he would understand would deplete me further, pushing me from shutdown towards an explosive meltdown. I was able to get him to understand to go home, drop off the shopping we’d bought, and return with one of our dogs (always a mood boost).

In the meantime I found a quiet, shaded area of the park to hole up in. I put my lanyard on so people hopefully wouldn’t bother me, and made sure my pre-written AAC script was ready in case it was needed.

I started playing my current soothing / stimmy music, and visually stimmed with Magic Fluids Lite.

Slowly I returned to myself, and my brain began dusting itself off and reconnecting. As I write this I’m still recovering.

Now I look back, it’s very easy to see why I was pushed to meltdown today…I just wish it was more noticeable on the build up to it, so I could start utilising coping strategies sooner 😬

Things that added to the likelihood of a meltdown today were:

  • The temperature is suddenly 10C hotter than it has been for the last month – lots of sensory badness with unexpected heat and sunlight, plus it has a massive effect on my physical health conditions too
  • We had friends staying Sunday – Tuesday. This was A LOT for me socially, mentally and physically. I commented to my fiance yesterday “this was the first time we’ve had [friend] to stay and I haven’t felt incredibly burnt out afterwards!” Yeah about that…I think I must have been way closer to burnout than I thought, I’m just terrible at recognising emotions until they’re 100/100 😅
  • I’ve had a lot of high end pain days / flares recently, and this has led to me missing a lot of sleep – both things that always deplete my reserves!
  • Last 2 trips out I haven’t worn anything to reduce the volume of the world, because my comfiest headphones are mouldy and my carer keeps forgetting to wash them 🤦 I don’t like wearing my Loops when I’m close to / in burnout (shoulda picked up on that 😂) as they can trigger sensory overload and don’t block noise “nicely” when I’m struggling. Likewise my actual noise cancellors aren’t very comfy, and aren’t perfect with the noise they block.
  • My fiance sprung a work thing he has tonight on me, which meant I’d have to manage a lot of things on my own, and suddenly the evening wasn’t the calm recovery period I expected.
  • A stranger approached us on the walk, asking invasive questions about my disability and using racist slurs 🤦
  • Whilst out I had to be the one to make a decision about where we’d eat, and didn’t get the communication support I needed. I had to put a lot of energy into masking up, squashing my needs, and making a decision. The more burnt out I am, the more I struggle with decisions.
  • The sunlight and shop lights were bothering me more than usual, but attaching my clip-on shades felt like too much effort, so I just suffered through it (wrong decision, brain!)

And those are just the things I can think of off the top of my head.

Though I’m much, much better at handling my meltdowns these days (it’s so rare that they involve violent outbursts, throwing objects, nonstop screaming etc) – I’m still really bad at identifying when they’re going to happen, and recognising that my brain is building up to a meltdown 🫤 This is incredibly unhelpful!

Meltdowns are such exhausting, painful things to go through. I’d bloody love to be able to drastically reduce the number of them I have…but it’s so hard to do that when I don’t realise anything is ‘off’ until I’m already either shutting down or exploding!

New friend

I saw this fidget in a shop today, and it just had to come home with me.

May I introduce you to Flumpy.

It’s a really soft rubbery textured friend, and unlike most my others made in a similar material, this has no smell! It’s surprisingly heavy for it’s size – I think it’s filled with sand – and is really nice to squish or roll between my hands.

We were buying quite a few other things alongside it, and I was pretty anxious so as everything was being paid for, I’d forgotten that I was stimming with this. My fiance reminded me we needed to pay for it, and I handed it over all flustered. The woman behind the till ran everything through then said “Would you like this for now?” and passed me Flumpy back 🥹

That was such a lovely thing to do. Not only because I could immediately start stimming again, but it made me feel that it was accepted too.

Usually in public I’m always trying my best to hide my stimming (unsuccessfully might I add 😂), and assuming other people think I’m weird for it. So that was a little moment that had a big impact.

Loop Quiet review

Loop ear plugs are something I’ve wanted to like for a long time.

They’re discreet, effective for reducing auditory input (especially from bass-y / shrill / excessively loud noises!) and easy to carry about with you.

Unfortunately when I first tried Loop Experience ear plugs over a year ago, they didn’t work for me at all.

The hard outer circle that sits in the shell of your ear caused me pain within half an hour of wearing them, and after a few days of trying to push through it my ears were totally chewed up 😬

It was annoying as, aside from that pretty major issue, they worked amazingly! I loved that they didn’t cut out all sound, and that they were less bulky and obvious than standard headphones / noise cancellors.

It wasn’t until this year that I discovered Loop had released another new style – Loop Quiet. These earplugs are ALL soft silicone – there’s no hard plastic on them anywhere.

I thought I’d give them a try.

These Loops come in a nice variety of colour options. As is standard with Loop, you get a range of size options for the bud so you can find the size that feels most comfortable in your ear. And they come with a very handy little travel case!

These Loops are soft *everywhere*. I’ve been wearing these for several months at this point, and I’ve had no issues with them causing pain at all. If I wear them for a long time my ears can feel a little…tired…of them 😂 But I can easily wear them for 3-4 hours at a time with zero issue.

In terms of noise cancelling, these Loops drastically reduce loud noises by A LOT!

For me, they make the world a much more comfortable place to be in – whilst still allowing me to hear my fiance talking, and some background noise. This actually lets me feel more aware of my surroundings and more present, which I appreciate (but I know some people might not want this).

I was at Pride today, and the live music was LOUD. With my Loops I still felt the music was very loud, but it wasn’t causing me pain / real discomfort. At some point I took an earbud out to see how effective they actually were, and holy wow, that noise was UNBEARABLE!!! So despite allowing some noise through, they hugely dampen it and are perfect for me.

It’s also worth mentioning that (as with most earbuds / headphones), Loop do make internal noises much louder! This doesn’t usually bother me unless I’m already really overloaded, but I do *have* to take them out for eating…who knew chewing could be so loud 😂

I’m a huge fan of my Quiet Loops, and am so so glad they released a soft design that works for people with weird ears!!

Spring has sprung

The world is so green and bright right now!

We’ve been doing our best to spend as much time as possible in nature. Everything is glorious and the sun is actually warm 😂

Sensory issues with the wind / rain aside, we’ve really been enjoying our April adventures!

And now that we have a bit of money again, we’ve really been enjoying feeding the wildlife! Making squirrel friends and amassing pigeon armies haha 😁

Any other nature lovers out there?

Pasta

For the last few weeks, pasta has been both a samefood and a celebratory food.

We recently started being able to spend money again, after having successfully saved up for a huge, unavoidable expense. We’d sacrificed everything to make this possible – no heating over winter, we only ate free food for all of March, we didn’t treat ourselves to anything…

April was a return to having a small amount of money to spend as we wanted, and part of that was being able to choose what we ate…what I’ve chosen is pasta 😂

Pasta salad, lasagne, pasta bake, spaghetti bolognese…my brain is obsessed with pasta!! Luckily my fiance is both wonderfully tolerant and an awesome chef . He has been creating (and happily eating) these amazing pasta dishes, and will continue to do so for as long as my brain demands.

Tonight’s tea is a cheesy pasta bake stuffed full of sensory friendly veggies and vegetarian steak.

10/10 could eat forever 👌

Being Autistic and the dentist

It’s no secret that I have a lot of trauma with the NHS, and that interaction with them is incredibly stressful for me.

This very much carries across to the dentist 😬

I’ve always struggled with going to the dentist. The bright clinical environment, the sensory issues…the strangers and social pressure, the lack of communication on their part, and worst of all: *having people so close* to me, looming over me, and staring down at me!! Big nope.

It is A LOT – too much for me to be able to cope with.

It also doesn’t help that the last dentist I saw was also an absolute jerk. I said to myself after that appointment, “okay, this is something I can’t cope with – I won’t go again until I really really need to!”

As a result I haven’t been to the dentist in about 8 years. Several years ago I fell (cripple problems 🤦) and smashed a tooth, losing almost all of it. It was IMMENSELY painful – still wasn’t enough to make me go to the dentist. That is how deep this goes!

Recently my carer reached out to dentists in our area. He explained that I’m autistic, that I find dentist appointments very distressing, and included this article from the National Autistic Society about how dentists can accommodate autistic patients. He asked if they were taking on NHS patients, and could help me.

Several of the dentists responded, and were lovely but basically said “due to how underfunded we are, you won’t find an NHS dentist who is able to accommodate a person with those needs” 😬😬😬

The thing is, I deserve to be able to go to the dentist. I deserve to have accommodations made, so it is accessible to me. There are legal protections in place, making sure I can get the support I need to be able to access things like this.

It’s really, really hard dealing with necessary medical things like this. I’m not able to just ‘suck it up’, because it’s so beyond my capacity – but equally they can’t offer the necessary accommodations. So I’m stuck!

This is just one small example of how stressful and exhausting it is for Autistics to live in a world not designed for us.

The next step is for my carer to reach out to NHS England, to ask about specialised dental services and see if there’s any way they could maybe help me.

I had major surgery 5 days ago…which involved a TON of stress, extreme masking, and having to cope with things that I really can’t cope with. I pushed myself way over threshold, and I paid for it with burnout.

I’m still sore, tired, and struggling. Now I have an infection in my tooth that I need to get sorted…

I’m so exhausted with how accessing any and all care always has to be so damn hard. I also hate how my needs and limitations as an Autistic person leave me feeling pathetic 😞

Sometimes I just really wish I could be neurotypical.

Are there any other autistic adults that struggle with the dentist this much? Have you found a dentist that supports you? Do you have any tips for me?

Being autistic in an allistic world

Sometimes I feel like I’m loved *despite* my autism, and not because of it.

I feel like people enjoy me as long as I hide the vast majority of my autistic traits…as long as I put a Herculean amount of effort into masking, so I look and behave like a neurotypical person. As long as, when I meltdown, I almost kill myself to keep it as under control as possible – even though this only depletes me further, and means the meltdown barely feels like a release.

Loving me *despite* my autism means I feel like I have to control and hide basically every part of who I am. It means never really feeling accepted or understood, and having to mask 24/7 even around the person I love most in the world.

It is exhausting, and leaves me feeling desolate.

Loving me because I’m autistic means loving and embracing *all* of me – my stimming, my goofiness, my excitement, and my struggles. It means working at *yourself* relentlessly, until you understand me as much as you’re able and know how to support me. It means coaxing me from the shell that decades of masking have pushed me into.

Because it shouldn’t only be my responsibility to learn how to change myself, or adapt to your needs.

I get so, so tired of living in a world that is designed for allistics. My battery is empty just from the amount of effort it takes to get through a day in this world of noise and brightness, with its lack of structure, its unexpected changes and alien communication. I get exhausted from sharing my life, in-person, with allistics only.

I want to make things better. I want to be able to communicate with those I love easily; I want to be able to exist with them comfortably. I want to be able to cope with life.

But it is SO HARD when you’re autistic, and it feels like no amount of effort is enough…and all your energy has to go into changing yourself 😬

I’m incredibly grateful to my autistic friends, who’ve become such a crucial part of my life…who help ground me, and can understand every bit of my experience.

I’m grateful to my fur and feather kids, who love me for who I am and couldn’t care less that I’m different.

And I am grateful to my fiance who, though allistic, tries to embrace who I am – if not understand it.

I just wish it was all easier.

Retreating

I found this article recently, where an autistic PhD student did a small study (of 16 autistic adults) into why autistic people need alone time. I thought it was a good read.

I frequently need to completely withdraw from the world, and especially from people who’s interactions are more taxing for me. I’ve also found that this complete withdrawal & inability to be social is often incomprehensible to my allistic (non-autistic) friends.

It’s often expected to be able to bounce back within a matter of days, but usually when I’m so burnt out it can take months to recharge enough to cope with more difficult socialising…if any additional stress is added to me, the longer it takes. Interestingly I find I’m generally able to enjoy socialising with autistic friends much faster than allistic, and this is something I’ve heard from other autistic peeps too.

Quotes from the article:

– “My participants were often overwhelmed by social input, sensory input and needing to mask”

– “Social input wasn’t always a problem, but difficult, intense or long periods of being in a social space was often physically and emotionally distressing”

– “Juggling social input, sensory input and masking often made my participants feel exhausted and overwhelmed, even if it was with people that they loved”

– “Often my participants wanted to be sociable, to reconnect with other people after some time apart. But it was difficult to be sociable if they were overwhelmed or exhausted and hadn’t had a chance to recover or ‘recharge their batteries.’”

– “Socialising based around an activity (like walking, making music, going to music gigs, crafting or watching films) meant less pressure to mask”