Monday 23 April 2018

Autism Acceptance Month 2018 Day 23: V is for Victories

BSL: victory

V is for Victories

Thank you, Magda!

Victories occur in all walks of life, and can be big or small. Some may appear small to others but for the person/those who know them they can be huge. They can be deeply personal and affect only one person, or they can have an impact on the wider community. All matter, all are valuable.

The most important thing about victories is that they are the autistic person's. Supposed victories where the person (usually a child) "achieves" something where the sole aim is normalisation and denial or suppression of their autistic nature is not a victory for the autistic person. It is a victory for those seeking to eliminate autistic presentation and thus systemic ableism.

True victories are those that are wanted by the person achieving them. Making eye contact is one that could go either way - is it the parent, teacher or therapist (most likely ABA) pushing the matter or is it the autistic person genuinely wanting it ? If it is the former, that is not a real victory, and instead demonstrates only that pressure and compliance training have broken a person's will; if it is the latter, that is then a true victory.

Our victories when it comes to the everyday can sometimes be much more significant and emphatic than those of our neurotypical peers. Some aspects of life are much more challenging for us than for NTs, because the world is not designed for us. For example, many NTs don't think twice about getting on a bus - they just do it. For us, there are what seems like a thousand barriers. Using the bus example, I'm going to detail some of my thinking in the runup to starting secondary school just before I turned 12, as I would be getting the bus there and back, on my own, every day, without knowing anyone. For other people, it was exciting; for me it was terrifying.
  • What if the bus is early and I miss it? That can throw out the rest of the day. When is the next one? What if that doesn't come?
  • What if the bus is late or doesn't come and I end up being late? Again, that's the rest of the day thrown out, filled with a long list of adverse effects resulting from being late.
  • Have I got the right money for the fare? What if the bus driver doesn't have the right change? What do I do?
  • Is my bus pass out-of-date? Have I misread it?
  • Am I expected to make eye-contact with the bus driver?
  • Will I cope with all the noises of the bus and passengers?
  • What if someone's eating something I can't bear the smell of? What if the bus is too smelly?
  • Will I miss my stop? What if I don't press the driver-alert button in time? What if the driver ignores it and goes past my stop?
  • What if I leave something on the bus? Even if it's not vital, how will I get it back?
  • If someone sits next to me, am I expected to make conversation? What do I say? Do I acknowledge them or ignore them? How do I make my need to get off at my stop known to them if I am on the window side of the seat? What is the polite but firm way of doing so?
  • Is it socially acceptable if I put my hands over my ears to block out the noise? If it isn't, how do I cope?
  • And a hundred other things.
But I did it. On the second day the bus (the 8:14 one) was really late and I didn't get to school in time. I didn't know the procedure for late arrivals and I was utterly terrified that I would be in serious trouble. I remember being in floods of tears when I found one of my teachers, who looked after me. After that I got the 7:38 bus (most people got the 7:52 one but I was so terrified of being late that I wanted to make extra sure that I wouldn't be, plus the 7:38 bus was a lot quieter). Every day I still struggled with the above list of anxieties. Even after 6 1/2 years. For me, every time I got on that bus and made it to school in one piece was a massive victory, whereas for the NTs, it was not something that required much thought. I was aware of that disparity, although at the time I did not understand why it was.

This is just one example of many I could give. Paying a bill (although pretty much all of ours are on direct debit because it's just more practical), doing the food shop, having a shower - all of these can pose real challenges to autistics. And accomplishing these may not seem like much to many NTs, but for us it's a real, substantial victory, especially if we have problems with executive functioning; it can often take me a good hour of faffing about before I actually get around to putting the water on. I haven't quite got to the bottom of why (doing so would be another victory!) although I suspect there is a degree of my physical disabilities causing problems (not entirely - it's always something I've faffed about over).

A significant victory I will touch on here, and will likely post about in more detail in future, concerns my history of self-harm. At one point, when I was 16-19, just going 24 hours without doing it was a massive victory. Now, I have gone eleven whole years without doing so! For so long that was an inconceivable concept.

One of the biggest victories any autistic person can have is acceptance of their autistic neurology. And that's a huge one, especially when society tells us that they're wrong, broken, damaged, etc. Pushing back against that pervasive narrative, accepting yourself (and others accepting you) for who you are is a long, hard, often painful process. Don't underestimate or minimise that one! Accepting your autistic self, the way you are (and recognising that you may have some difficulties that others do not), is essential for your wellbeing. I have found that it makes me much more confident in advocating for accommodations and being firm about needs and access requirements.

In the longer-term, victories are occurring all over the world in order to make it better and more accessible, inclusive and accommodating. France is finally making progress with its attitudes towards autism support. Shops in the UK are beginning to hold "autism hours" where the shop is much quieter, with reduced lighting and less bustle (I'm not sure yet how good or effective these are). Parents are beginning to realise how valuable autistic adults are in negotiating the world of autism; more on that in X is for Xenagogue. More are coming to understand that ABA is not the only option and that it can be incredibly damaging (although there is still a long way to go on that one). As I type this sentence the petition against the Judge Rotenberg Center's practice of electric shocks for behaviour modification is nearing 50,000 signatures, over 40,000 of which have come in the last few days! It's not a full victory yet and won't be until this barbaric practice has been ended, but the way in which we have come together across the autistic community is a victory as well.

Life goals vary from person to person, autistic and NT. For some, it is getting a PhD; for others it is getting on a bus and making it to their destination without having a meltdown. Both are equally significant and matter just as much. Those aiming for the former should not belittle those aiming for the latter. All victories matter.

I may well return to this subject at a later date but I am tired and I would like to finish by listing some of the victories in my own life thus far that matter most to me:
  • passing my driving test
  • getting the bus to and from school every day
  • getting an assessment for, and then diagnosis of, autism, after several years of trying
  • setting up this blog and its corresponding Facebook page
  • returning to university
  • achieving my BA and then my MA
  • having a shower/self-care when the fatigue is bad
  • going to a project volunteer open day last Friday when I had only had 2 1/2 hours' sleep
  • attending events and social gatherings where I do not know anyone
  • living on my own
  • going somewhere I do not know
  • organising an entire wedding in 7 months
  • initiating volunteer work
  • not self-harming
  • getting the Judge Rotenberg petition going
  • not attempting suicide when I was 17
  • stopping self-harming.

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