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Showing posts from 2018

Something we don't hear about enough: autistic burnout

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Dearest readers,

This is very relevant not only to my life, but also to many other autistic people too. It happens, this is a real thing. It's a real thing because it happens to me. It's something that is not as openly spoken about and understood as it should be. From an outsider's perspective, we don't often see the damage until the damage is done.

I want to tell you, not in generic terms, but in personal terms, what having autistic burnout is like, If you want to know more about it, there are articles linked here, here and  here, which will give you some insights. They are written by autistic people. I also don't want this to seem like some sort of gawping parade or museum exhibit, as I am not some sort of spectacle to be oogled at. I have the right to my own privacy, as do all other autistic people. Therefore the way in which I will construct this is carefully done. If you've come for gossip - there won't be any here.

I feel broken, exhausted and cannot…

The one I can't think of a title for

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'We were all so full of life, and none of us prepared to die, and I'm not ashamed to say the roar of guns and cannons almost made me cry.' (from Fernando, lyrics by Benny Andersson & Björn Ulvaeus)
Dearest readers,
Although musical lyrics, there is much that is relevant in the lyrics above. Some of us come so young and full of energy into new projects and especially so if they are seen as 'invaluable', 'subjective' or just plain unacademic (see my last post on my critique of this and this post as a gesture to the area I am passionate about). I know we underestimate the emotional toil that comes with working in new territory, especially territory that is purposely left blank in institutions due to its perceived lack of value. This is further heightened when we consider emotional labour (people who should not be doing all the work for others, ending up doing all the leg work on breaking it up into micro size pieces etc) and the consequent fall out on an …

Why it's time to take us seriously

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Dearest readers, 
I'm always fascinated how different types of 'knowledge' seem to be more inherently 'valued' than others. I purposely use the inverted commas, for we all know some knowledge is questionable in nature but also more importantly, that little question of value. We try to be objective and scientific, but given we are all human, I do question how objective one can ever be. How subjective is objectivity in any case? I don't think people, or even social science, can ever be 100% objective, in my own personal reflection. I would say I'm sorry to cause that ripple, but I'm honestly not in this case. Possibly a bit too early to start on some of the big questions, however it is a big question I am aiming to break apart to some degree, and then give my opinion on it. 
It's time to start taking a different view of rationalism and to start valuing knowledge that is not 'typical', that is not objectively sourced and the might not be '…

Why talking about #TakeTheMaskOff is important

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Dearest readers, 
Since this is current and 'sort of a big deal', I thought I'd share a bit on this. It's a big deal as it cuts through so many elements of the experience of being autistic, in both academic spheres when looking at theory but also when just listening to people about their own experiences of being autistic in their own words. Not just words filtered through a published book, an academic article or reported by a charity, but actual words from real people from a variety of backgrounds and walks of life. 
Glossary: masking, in regards to autism, is effectively acting. It is covering up who you are to avoid social disapproval and to fit in. I am an expert actor in day-to-day life. You do it long enough - it becomes automatic, that your mask becomes you, leading to potential identity crises. When your mask breaks, through distress etc, it is confusing for the masker and the people around them and the masker can end up "shamed" and "stigmatised&…

#dontpathologiseme

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Dearest readers,

My statement:
#dontpathologiseme. 
Don't fit me into your box or
                                            frame me through your deficits or
                                                                                                medicalise all I do.


It's a downward
                         trajectory when you do that,
                                                                        taking away my voice.


and my dignity
                        and my inherent human value.



Even here, I am
                        limited by only being able to
                                                                    type horizontally, left to right.


Trying to break
                       free from such constraints is
                                                                   hard, using my space bar to break
                                                                                                                          the rules.


Please…

Why I don't and can't know everything about autism

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Dearest readers,
Yes, this is actually a thing. Yes, we need to talk about this.
Thought I'd like to throw it out there as, you know, somethings do need to be said sometimes. But before people jump down at me about the title, I better get on with explaining myself. Sort of the point of a blog...
There is no such thing as an 'autism expert'. We construct those who we deem to have knowledge that is valued through their credentials and other 'normative' knowledge. I say 'we', I think we do this on an individual level and across societies and cultures too.
Given that autism is a lived experience, and autistic people are all unique (and not robot droids who are carbon copies of each other), we cannot possibly know everything. Lived experience, that is to say what we experience in day to day life, is individual to each of us because we don't all have the same situations, personalities, neurologies and needs. That being said, some of us do find out, rather by…

Fortitude or resilience?

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Dearest readers,
I want to share this word, because it has stuck with me after I read an article on it. One of my friends shared it, as well as me getting a digest from Medium into my inbox most days. It caught my eye. I've had an interesting few months mental health wise so I thought it was worth the read... according to the Oxford English dictionary, this word is defined as: Fortitude: courage in pain or adversity  Now why would I come and talk about fortitude? (I did have to google it when I first saw it defined, as the context in this article was so specific and I wanted to check I had understood it correctly because, you know, words.) Because it sums up a lot of stuff. It doesn't assume success or a positive outcome, it focuses on the process of having courage. It has a slightly different locus to resilience, where I believe the focus to be on bracing yourself on what is being at thrown at you - you are not in a position of your own control or decision making. It looks at…

Spirituality: we need to talk about this

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Dearest readers,
I've spent some time crafting this.

I want to be bold and talk about something that we are quick to dismiss and neglect mentioning in research circles. I had this brief chat with a colleague a few days back and another chat along a similar line at a networking event with an autistic peer in mid-June... to be honest, I have lost count of how many times I have brought this up. I even brought this up last time I was on BBC local radio last week. It has been really obvious to me for some time and the lack of discussion or stage for this, I think, and it is really starting to bother me. I'm going to start sounding like a broken record soon.

*insert noise of a CD getting jammed and repeating the same piece over and over in my car because I never put them back in their cases as a teenager* 
I've even had a bit of a rummage around and looked at some conventions and legislation because I don't want to this just be me ranting... I've given myself a visual st…

Respect versus ignorance

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Dearest readers,

A sharp one today all. I would apologise, but actually it is not me who needs to apologise: it is the hurt of ignorance of others that I am carrying and the attitudes that permeate this which need to speak for themselves.

This whole 'people like you' thing and ignorance around autistic needs: just do this, I can do it, it's really easy... it's all about awareness isn't it... assuming and speaking over...

It's just not on.

I think given where I am currently, I'm not in a place to be quite as patient as guiding as usual in terms of guiding good practice. But then again, maybe it is actually time to fight this head on with a few sharp words, like you would parent a child to teach them between right and wrong.

Respect and ignorance have an interesting relationship. How can you respect someone, or a community, if you are so ignorant to their needs, wishes and voices? It's pretty simple in my mind: you cannot. You can try, but I don't th…

Writing as tonic

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Dearest readers,
The recent influx of writing I have been able to complete is quite astounding. This is my sixth post that I have written over the last week (I'm staggering them so they don't come out all at once, so it won't be the same week by the time this comes out) so you can safely say that writer's block has passed. I also find writing incredibly soothing; it helps and guides how I can make sense of new concepts and situations. I honestly feel like one of those Japanese bowls that every time they have a crack in them, the crack is mended and guilded with gold. It did feel like very unstable PVA trying to do the job of superglue, yet superglue just sticks you back together. The gold shows the break and the grace not to look abrasive or harsh. It is gentle and sympathetic, giving new life and beauty.
Writing, for me, has healing properties. It allows me to express myself and craft something, carving out expression that is right for my voice and the situation at h…

Addendum: another verse

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Dearest readers, 
A short one. 
The poem/song this adds onto is not my creation. The original song was written by Nick and Anita Haigh (2000 - Empty broken here I stand) but has been playing through my mind quite a lot recently. I then this morning had some ideas about the below... putting some of my personal experiences of invalidation and ignored pain down. I guess this can be seen from any perspective, but for me it is about being excluded through others practice and beliefs, and the impact this has on me. Because if I am honest, yes this is real and brushing it off as 'well we can't include everyone' without a dialogue and empathy is, just... well... ableist to be blunt. 
I wrote this to explain how I feel as we are just not really in a place to accept this happens currently or if we do accept it, it doesn't always reach us so we can do something. 
This adds to the real complexity of groups and communities and how they interact within and to external events. Nothi…

Grenzenlos: I am not your defined category

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Dearest readers,
A friend suggested this post following off from four reasons we are all not a little autistic, as a quote she often gets thrown at her;  'you shouldn't put a label on yourself, honey.'  The tagged on honey at the end just annoys me, if you know me, you'll be able to tell that part will really get on my nerves and completely rub me up the wrong way. Certainly in this sense it seems like one is throwing the smallest pinch of sugar into something horrendously bitter in an attempt to be nice. I don't do all this nicety stuff, not because I'm not nice (although sometimes I am not really), but actually just because no one in my house does, it's learnt behaviour and a bit odd if anyone does it. I think this sentence needs a bit more deconstructing and explanation as to why it is inherently problematic, not only in terms of actually saying it to someone, but through actually the words being said and how they fit together in terms of the concept be…

A message from the White Rose: do not be silent

Wir schweigen nicht, wir sind Euer böses Gewissen; die Weiße Rose läßt Euch keine Ruhe!

translation:
We will not be silent. We are your bad conscience. The White Rose will not leave you in peace!

(from the Fourth Leaflet of the White Rose, 1942, German original here and English translation here)

Dearest readers, 
I've wanted to read these for a while but just haven't had the chance to - the leaflets written and distributed by the Weiße Rose (White Rose). Since I've had a bit of free time recently, mainly by accident, I've thrown myself into exploring what I am actually interested in examining and thinking about: how our social nature influences our interpretation of theology and how this plays out on a wider scale, how we can effectively untangle why we think what we do - particularly about autistic people - and I decided sitting in the car on the way back from a local shopping centre yesterday: I want to be a part of emancipatory disability theology. There needs to be a…

Some reasons why 'you should notice'

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Dearest readers, 
Some time ago last year I wrote the post 'we just didn't notice' in response to a comment that was raised at a training session for a faith group that I did last September. I wanted to build on this. I was definitely on the war path there, I would definitely recommend giving it a read if you have not yet. It seems to be something that flies around quite a bit and this exclamation of ignorance an almost seem an excuse if we are not careful.

Ignorance is not just, in my eyes, something that is equated to one dimension. I believe there are the 'well intentioned, uninformed ignorant' and the 'unacknowledging ignorant'. Both types are ignorant by nature. I think due to the loading we have on ignorance culturally to be so inherently negative, but the reality is that you can just be ignorant through not knowing and being unaware. I know there are many things that I am ignorant about or that I have been ignorant about. By the by, the 'well in…