lifestyle

Living autism

~ Helen White ~ 2 Comments

When the time comes to finally live the autistic life, it can feel both daunting yet potentially liberating but how to go about it. We are forced to question which reality is the real one, the one where we normalise successfully and do all the stuff that looks like having a relatable life (through the eyes of other people) but with terrible outcomes for health, or the one where we are fully cognisant of our autistic traits, meaning that we accommodate them so much better but also meaning that our life inevitably looks much more withdrawn, carefully curated and (yes) autistic by default? In this post I explore questions such as whether and why to seek a formal diagnosis and how to reset social expectations and other boundary issues as I venture boldly into the territory.

Just because you could doesn’t mean you should

~ Helen White ~ Leave a comment

It's all too easy to be guilted into overdoing things; to feel judged and criticised and like we are letting other people down...and why do we always push ourselves, why do we feel we always have to be productive or do at least what we are capable of doing right up to the limit of our energy, using up every last iota of ability that we have? What if we have to learn a a whole other way of being in order to get ourselves out of an ME/CFS crash...what if it's about learning its OK, in fact essential, to hold something back in reserve for ourselves, in fact first and foremost?

(Finally) dedicated to pacing

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I am now forced to humbly admit that most of my prior attempts at pacing, over all the many years of constantly dabbling with it, weren’t really pacing at all because I simply wouldn’t stick at it and would then fall back into old habits as quickly as blink. I always had my excuses at the ready as to why this one thing I “had” to push through was outside the jurisdiction of my need to pace or couldn’t be avoided (a dread of disappointing or letting others down being one of the most consistent excuses) when, really, the whole of life has to become one giant, continuous exercise in pacing to make this whole thing work sufficiently enough to avoid the constant boom-bust cycle of flare-ups and chronic fatigue that potentially get harder to recover from each time.

Being a passenger is not an energy-neutral activity and other hard lessons of pacing

~ Helen White ~ 4 Comments

There are a few activities, and these will vary from person to person, that are not as energy-neutral as they look for someone that is neurodivergent. Coming to realise which activities these are, in your daily life, can be a game-changer when learning how to pace in order to gain a more consistently stable footing in your health.

Stabilising the autonomic nervous system as a first crucial step

~ Helen White ~ Leave a comment

There is no separating the nervous system from the various different aspects of how the body has started to misfire over the years, cumulating in whatever burnout or crash led you to where you now are, however much other provoking factors (such as a virus or accident) might have taken the brunt of the blame because, after all, what makes one person respond to those things differently, more devastating and lastingly, than the next person if its not the nervous system? Post Exertional Malaise is a classic manifestation of this whilst tracking its triggers can teach us such a lot about our personal state of misfiring health.

Learning to ADHD pace…the hardest but most powerful thing you will ever do

~ Helen White ~ Leave a comment

The constant play-off between the two sides of AuDHD can be such a challenge to live with as well as such a blessing. Having parts that both provoke and complement each other is precarious in the extreme and not for the faint-hearted. It's also far too simplistic to describe ADHD (or autism for that matter) as a superpower, not to mention dismissive of its many hardships but there can be some perks when it comes to recovering from burnout, ideally before it turns into a chronic state. Exploring how ADHD can throw you a lifeline at times of health crash but also the importance of pacing...before you allow yourself to become burned out yet again!

Sensory burnout…and learning how to curate your particular version of autistic joy as a way out of it

~ Helen White ~ Leave a comment

Autistic joy comes in some unusual packages but I think we all get to know what our personal ones are when we pay attention so it's just a case of owning up to them and curating them into our days, even more so when we particularly need them. When we burn out, it becomes even more important that we draw on our arsenal of sensory stims and other tools to help reboot our nervous system, which will take as long as it takes...our bodies won't accept any shortcuts or short rations, perhaps even more so as we get older. Giving permission to ourselves to indulge in these things is where true autistic self-care starts and our best autistic life takes shape, no matter how "old" we are when we first realise this.

The importance of finding your place

~ Helen White ~ 4 Comments

So many of us put up with living in less than ideal places and circumstances, especially if we feel we are stuck with them, but what if they are the missing piece of the whole health jigsaw. If we also happen to be neurodivergent, feeling "out of place" can be become such an innocuous-seeming sensation across the course of a lifetime because we become so acclimatised to feeling like a misfit in a lot of situations; our version of "normal". This makes it all too easy to ignore times when we are really in the wrong place or situation, when we should be doing something about it, especially when our health is being badly impacted. Clues might be subtle but we, of all people, are past masters at piecing together all the signs and patterns that tell us there is a better kind of life waiting for us somewhere, one that better fits the way we are wired.

Can silence and loneliness cause pain and other interesting observations

~ Helen White ~ Leave a comment

I'm noticing an effect...where too much quiet or lack of human connection can trigger massively increased rigidity in my body, poor breathing habits, temperature disregulation and other dysautonomic effects and massively increased pain, especially small fibre neuropathy. So what do people have to say about this; how might it be connected with chronic pain conditions, autism, social isolation, old age and more?

The sustained traumatising effect of trying to lead a “normal” sensory life with a neurodivergent nervous system

~ Helen White ~ Leave a comment

I do believe that constantly drip-fed overstimulation traumatises those of us without appropriate filters and barriers to cope with sensory experiences that are not designed to accommodate neurodivergence and in such a way that compounds with time, affecting us in ways that other people can’t even begin to imagine as they’re simply not having the same experience as us. Quite literally, the only thing we have in common with the majority of people who are apparently dealing with the exact same situations as us is that we’re physically in the same space…because the way we experience that space is a whole other matter. We can try to explain (with variable degrees of success) but we can never take them there with us so they understand! Until we give this effect the most appropriate name, trauma, we don’t deal with it appropriately either…because we just keep on sucking it up and wondering why we struggle and burn out so often and in so many apparently unusual or creative ways. Yet in the case of any other trauma we would work much harder to notice when it was happening, to put a stop to it and heal from it…but how do you heal from something that is relentless and ongoing, which you have to expose yourself to in order to be part of anything in life that has something to do with being around other people or in the world as it has been made to be, which is highly overstimulating and often too much for our differently wired systems?