self-advocacy

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traits, meaning that we accommodate them so much better but also meaning that our life inevitably looks much more withdrawn, carefully curated and (yes) autistic by default?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

Making invisibility more visible as someone with hidden disabilities

~ Helen White ~ Leave a comment

A recent experience I had, as someone living with invisible disabilities, including its positive outcome, just goes to show the importance of speaking up for your needs, of feeding back when things don’t work out and of urging venues and organisers to try harder in the future. Some, if not all, will listen and, in time, things should get better. It will also take a lot more education of the general public for things to really improve, which is something I hope we are all prepared to work towards, as we each do whenever we stand up for our challenges or dare to speak out and educate people regarding what isn’t so immediately obvious about our disability experience, utterly life-encroaching though it may be to us. We have every right to be able to expect to take part in, and enjoy, experiences that able bodied people are able to take for granted and, if it takes a few tweaks and accommodations to make that happen, then we should be pushing for those until we get them. Yes its very hard to do, and we need to pick the right time (for us) to be more vocal as it can take a lot out of us when we are already struggling but we also have to think about contributing, when we can, towards making our invisibility more visible, in all aspects of life until, little by little, people start to see us more clearly.

Internalised ableism meets autistic burnout

~ Helen White ~ Leave a comment

Neurotypical expectations tend to come at all of us from every imaginable angle when we are autistic but, when we also internalise them and bounce them back at ourselves from the inside, the effect can be toxic because there is literally no getting away from that ableist voice now; its there night and day. Until I am prepared to notice that the voice saying these things is not mine and stand up to it, and to anyone else having unrealistic expectations of me given my autistic take on certain situations that bother me more than they can imagine, I risk repeatedly throwing myself back into a burnout status because I will never allow myself to fully recover. Every time anything that looks like a “normal” or so called “reasonable” expectation comes my way, I will simply roll over and surrender to whatever is expected of me, abandoning my desperate need to stop doing these things or putting myself in the way of highly stimulating and demanding situations and exposures in the name of trying not to rock the boat or stand out as different.

The positives of finding out you are autistic (if you are)

~ Helen White ~ 2 Comments

Before you realise you are autistic (if you are), all you tend to know is the outline of your autistic self, as in, the shape that is left where you don’t fit in with other people’s experiences. It’s a bit like drawing a portrait of someone by filling in the background and leaving a space where the person is standing; what they call a negative space composition, in art terms. You get to know what you aren’t…but not what you are. Such an approach tells you a lot about all the misfitting bits but nothing much about yourself and that, in itself, can be a source of ongoing trauma because it can leave you feeling like a blank. Finding out you are autistic begins a process of filling in all the blanks and getting to know who you actually are.

Autism and feeling too much (not too little)

~ Helen White ~ Leave a comment

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?”.

Time for me!

~ Helen White ~ 2 Comments

When one small thing breaks the camel's back, its usually time to stop and pay full attention. So often, its a clue to how we have been giving ourselves to everything, and everyone, else and not to our own needs...a key trait to notice when we have chronic conditions (because there seems to be a link)...