Living autism

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traits, meaning that we accommodate them so much better but also meaning that our life inevitably looks much more withdrawn, carefully curated and (yes) autistic by default?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.

The fact I “seem” to be coping with the big event doesn’t mean that I really am!

My hypermobile neurodivergent way of getting through an event might not be typical and will generally involve a lot of extra strategy and accommodations but it is just as valid as the next person's and, the more I own this, the less disappointed I am with myself or my circumstances. The world does not, in any large way, accommodate people with neurodivergent sensory responses to the environment or their not insubstantial neurological or physical differences, especially if hypermobile, therefore big events are seldom pitched to accommodate us, as a minority factor in the room. The very best I can do is have my own list of helpful methods and tools at hand to get me through these big events my way whenever they happen, with a view to minimising the worst kinds of after effects sufficiently enough for me to be able to hold on to the happy highlights instead of all the low points. Here are a few of my tips to myself in case they are of use to anyone else.

Music festivals and the like: The biggest win isn’t pushing through but getting real about what you can and can’t do

As someone who is both autistic and who has disabilities, I've learned the hard way that the most important thing is to keep getting ever closer to living within my actual capacity (not some pipe dream based off "what I have done in the past" during all those years when I tended to try and normalise my behaviours), knowing my limitations, tailoring my life more and more to what feels good without all the compromise and stepping away from circumstances that have too high a toll, in terms of physical consequences and overstimulation from crowds and such, to be any good for me.

Reframing PEM and considering how it may be linked to delayed emotional and sensory processing in autism

How could having more sensory information to process than the next person and delayed emotional processing have to do with post exertional malaise or delayed onset pain and what could any connection between them tell us about PEM so that we can reframe it in a more positive light?

ME/CFS and neurodivergence: a potential overlap?

There are so many overlaps between ME/CFS with common neurodivergent factors such as extreme sensory sensitivity and environmental challenges, increased hypermobility, porosity and laxity, orthostatic challenges such as POTs, increased susceptibility to viruses and adverse medical side-effects, sometimes lifelong energy deficits and frequent burnout events that, surely, the question needs to be asked...is there a credible link between neurodivergence and having an increased propensity to develop the condition? If so, how do you single them out; is it even viable to try and view the one factor in isolation from the other if they now coexist side-by-side, as they clearly do for me, or is the better headway always made once they are viewed as a kind of package of tricky responses to "life" as we know it.

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

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.

Autism and feeling too much (not too little)

There are so many areas of human experience where autism is assumed to mean less than or shortfall whereas it’s often a case of more…so much more that it’s untenable and excruciating to be in the experience. Sometimes, the very appearance of so-called shortfall should prompt the question “is way too much going on in there, so much so that it can’t be handled or made sense of, can’t be articulated or processed in conventional ways?”.

Chronic environment

Environment is such a big topic when it comes to chronic illness, perhaps an obvious one too but I also think far too many people with chronic health problems get so wrapped up in their own situation that they fall into the trap of imagining all their problems stem from a faulty body. Even when they do realise the environment may be playing a considerable part, they don't seem to see what the issues are or they assume there is nothing that can be done about it, but that's not entirely true...awareness always leads to choices we may have overlooked.

The long-lasting impact of parenting style on the HSP child

Today, I want to share an article that resonated with me very much so, for the main part, I want to direct you to that article. By way of an introduction, I want to ask any of you that identify as a Highly Sensitive Person (especially those who struggle with emotional, health or other issues, … Continue reading The long-lasting impact of parenting style on the HSP child

Quieting the echo-effect: neuroplasticity for the very highly sensitive

Are sensory-sensitivities in autism the same as being a Highly Sensitive Person and what can you do, in either case, when your sensory experiences seem to play on loop, especially if they trigger physical symptoms? Sharing some insights as someone with both traits and ways I am starting to rewire my own highly sensitive responses.