Why does autism matter though?

Hello dearest readers, 

It's officially more than half way through the year, having finally having reached July. One contact of mine shared a meme with something along the lines of only 24 more Mondays until Christmas in the last week; I have to admit I don't get as excited about Christmas anywhere as much as I used to - I find all the hype so draining and I get so anxious about the major change in routine over the Christmas day and the build up in adrenaline really wears me out - it's the same with birthdays for me now. Minimal fuss is nice as I can stay closer to a more energy-cost-effective neutral where I can enjoy the small things properly. Ten years ago I used to like organising and celebrating but I guess as I've got older I've a) learnt to look after myself but also b) have less capacity for these 'spikes' and would rather focus on Christmas for what it is intended for (celebrating Jesus' birth) rather than getting agitated and get agitated and nervous about exams and use my adrenaline there instead, tad more useful for what I want to do. Workaholic, taking after my parents! 

By the by with that, although very interesting to finally vocalise and put words to thoughts. The only explanation I can find for that is routine and a smaller capacity to handle that sort of thing, and I'm only 25. 

I wrote this title about a month ago on the 6th June as a question that I'm sure many would like to pose me, considering I feel a bit like a broken record but also I'm pretty sure I sound like one too for some. Why do you keep banging on about autism, like I know what it is, I've heard of it - seen the news about Sesame Street or the A word; have watched the Big Bang Theory; read about Susan Boyle... not too sure why you seem to think that we all need to know more?! Especially if I've met you! 

The simple question to that answer is we all need to know more, even I do. Autism is so deep and internal but also complicated in some ways that there is always more to uncover. It's worse than learning a language, when you realise how little you know when you go on holiday. But the more complex answer includes respect for the heterogeneity of autism, autistic voices and where we find out this information which has informed us in the first place and what the agenda of the person who wrote that information was/is. The other addition is when I'm super interested in something, then it's pretty hard to get me disinterested. 

I guess the first reason why autism matters is that it is so personal and internal yet I know I am not alone. Should I be ashamed that I'm autistic? Not in the slightest in my eyes. There are times it is tough and times when I was younger when I did not want this and it was a burden. I also don't see autism as 'wrong' or 'less' and I don't think others should too, irrespective of the level of challenge the individual faces on a day to day basis and which situations, scenarios and environments are challenging and regardless of how this is expressed. This is inherently challenging so much of our human history where different is seen as 'other', different is not necessarily understood, whether we openly admit this or not. Many in more recent history would have been shut away at home or living in asylums or residential hospitals where the mantra was very much 'out of site, out of mind'. The power dynamics that went on these places and the lack of access and rights has changed with more people in the community, but we need to remember to ask ourselves why we see people as different and what we can do to challenge that notion. Just because we see people as integrated, are they really? Can we learn more on an individual and societal level? Yes. Furthermore not all autistic individuals would necessarily fall into the category I described above: those of us who somehow can tick boxes for 'socially acceptable' etc who may have had to but an exhausting amount of energy into 'blending in' that we could never know unless we were there. 

It's always been my agenda to keep things understandable and straight talking, as so many autism sources are either negatively biased in their view of autism or it is just full of jargon. Even in the autism community so much jargon is used, that to a complete outsider it can be like learning a new language. Jargon has always wound me up, whether in church, among peers or in communities - it stops us accessing and learning. And as someone who felt for much of my life (much of the time unintentionally by others I add) who felt like I was in a glass bowl banging on the edge with no one hearing me, I don't like to be a hypocrite and do it back, even though this is part of our human nature. 

Another reason I talk so much about autism is that not all of us are exactly like the media portrays us and we wish to have our own voices heard. No two autistic people are the same: we are all different so each voice is very valid. We are all likely to know someone in our networks. If someone in our network speaks up, we should listen to their experience and perception, whether this be verbally or through other means. Each person is likely to have had a different experience of autism, much like with other groups of individuals, so we should never let one person's actions if they are annoying, odd, rude or one person's ability tar everyone else. This, I believe, is also highly topical currently anyway. As a 25 year old female who is bilingual (don't really speak French anymore so that one doesn't count) with a well above average IQ who works and studies, when so much information about autism is so male based and stereotyped, it is critical to speak up. I'm slightly fed up of being judged just for who I am and sometimes suffering communication or sensory wise because society misses opportunities for a more accessible environment. I don't expect the world to drop to its knees to accommodate me, rather the opposite. I wish for a world where meeting needs would not be taboo and where I would not be seen as lesser. 

The final reason I basically don't shut up about autism, other than being slightly outspoken, very much revolves around my faith. The church should be pioneering this and blazing ahead, but rather somewhere along the way we have got a bit lost and caught up with society on people being shut away and not spoken or heard of. One sermon I heard today at a church I was visiting for research spoke of 'disagreeing respectfully', and this is something I think the Christian faith community needs to disagree respectfully about; not just through their words (which can be said and never fruition again) but through our actions - pulling everything I have spoken about above but giving it that bit more urgency. This is something that 'has been laid on my heart' (or in non jargon speak, something that needs doing that I feel guided towards). We can be grateful that there has been progress, but there is so much more progress to go so must not rest on our laurels. 

tc 
-krysiawally 

Comments

Popular posts from this blog

Equally treasured: story of the autistic loving God

Tied up in knots

How much of a disability is autism then?

Why don't you do something then?