—–Please note MY autism, this is not reflective or representative or any other person with autism on the spectrum, this is my story and even then doesn’t do the complexities any justice in the slightest.——
Yesterday was World Autism Awareness Day. Yes, yet another one of those darned awareness days that come up on your timeline and you think what does it matter to me?
Well it doesn’t, not really, but it matters to some people. I’ve spoken about my opinions of awareness days previously and this one seemed to go off very quietly compared to some of the awareness events I’ve seen previously.
As for me, I’m aware of autism, 24/7, 365(6) days a year. Why? Well if you don’t know you’ve clearly never spent any time with me in person, and if you’ve not had that dubious pleasure, then I was diagnosed with an autistic spectrum disorder a few years ago.
It had been obvious to myself since I was very young that I was different, I didn’t like what the other kids were into, I was too weird, even for the weird kids. I didn’t want to be in groups, and preferred writing and studying to painting, had an obsession with reading and various other ‘normal’ things that combined with some not so ordinary things weren’t picked up on until I was in my late 20’s.
When I was at school, many still believed autism, particularly Asperger’s (as it was at the time) was a male only disorder; they had just about mastered checking for dyslexia but anything more than that was beyond them.
As a girl, I presented typically, but here is the crucial difference, I presented typically for a female- unfortunately this is still a very much unresearched area, but there appears to be key differences. Even my Special Education Needs trained mother missed the diagnosis. Looking back she says she can see it clearly now even from when I was a tiny baby who wouldn’t be left with anyone other than my parents, but even then didn’t really want to be with them. It was much more complex than that, but hopefully you get the drift.
I never hugged on a regular basis until I went to uni at 18. I had never settled at school, I loved getting an education, but had very little interest in my peers. Uni was a change in so many ways. The perks of going to Cambridge are numerous, but one is that research has shown it to have a higher than average percentage of people with ASD, which is hardly surprising considering what you need to achieve to get in there!! I was finally in a place where I could be myself, a very strange experience and hugely overwhelming, those first few days of each new year were particularly hard as you had to get used to change all over again.
That’s all in the past though, the point of this is what it means to me to be autistic day to day. Well I don’t know. I’m not autistic day to day, I’m me every day. Autism is just the way my brain is programmed, and therefore it’s all I’ve ever known. It’s impossible to know if something is a Claire-ism, a quirk like any neurotypical person has, or because I’m autistic. Day to day I’m used to how things are. My head is like a constantly whirring motor seeing all the little things you miss, hearing the conversation you’re meant to, plus those all around you, hearing every noise (I had to ban cat scarer devices), all the idiosyncrasies you don’t register, ever seen Monk? Well my brain is like that all the time, just with less germ phobia!! It’s exhausting, spotting things that aren’t done correctly, and by correctly, I mean in the manner which befits my brains working. Ever had an argument with a 29 year old about putting the wrong sock on first- yes it does matter. Maybe not to you, but in the rules of my world it does.
For me those rules aren’t optional. People talk about it like it’s an anxiety disorder where something horrendous will happen if things don’t occur in a particular order, but that’s not the case, the rules are put in place by my brain and are so that things sit neat and ordered in my head, they stop some of the chaos waving it’s arms so violently around, but if they are broken, although I may have a melt-down, I know there’s nothing going to go wrong because of it is. A break from the never ending chaos that goes on in there would be strange and probably unsettling, after all I hate change!!
The only time I get a calm in my midst is when I’m out on the river, I don’t know what it is about rowing as such, but the escape I get whilst I’m rowing is fantastic. Maybe it’s because I can focus on the structure, there’s no space in my head for all the little “Me, Me, Me’s” waving their arms around, there’s space for technique and that’s about it.
Autism is one of my newest diagnoses, although along with my genetic illnesses, I’ve had to live with it the longest. It’s strange as although it has a massive impact on me generally, I find it is one of the least complex- it isn’t going to give me sudden breathing difficulties or sepsis, for me to live with. Maybe it’s because I’m so used to dealing with it, and dealing with it unaided. I’ve had no medical input in that respect since diagnosis, and of course no support throughout school. There are many things I’d like to improve in respect to my ASD, but there’s no funding or networks in place to deal with it, so I just make do. If people can’t handle my autism, then that’s their loss, because beneath the crazy exterior of my ASD, is just a crazy, human being like the rest of you. Oh and you miss out on the penguins, all the penguins.
This is a post for Blogging against disablism 2013
Last year I was in a very different position in terms of my health and life. Effectively I was dying of malnutrition, with severe bowel pain. I think I might have even been in hospital when I wrote for blogging against disablism.
A different topic this year, disablism within sport. This isn’t another discussion about the Paralympic legacy, but about my experiences with grass roots sport. Several years ago when I arrived at university, I joined the college’s boat club, and loved it, I went on to a development camp with the university and was all set to trial, when my genetic illness decided to make an appearance with vigour.
Fast forward to 10 months ago, I’m back in a boat, this time as a para-rower. Things weren’t quite as simple as that though. First there was finding a suitable club, given the obsession in Cambridge with rowing, you would think it would be easy. Unfortunately the nearest club with a suitable boat is actually at least an hour away. I couldn’t have asked for a better club, everyone is fantastically helpful, but we lack facilities. They are working on it, and I can manage without, but that’s not to say everyone could. It would be such a shame if someone with great potential never had it fulfilled because the facilities weren’t there.
One of the key questions is, If the foundations aren’t there, how will more people be able to get involved? I know there are clubs in Cambridge working to get something set up, but I think there’s been quite a lot of pressure from people higher up. I would dearly love to only have a 15 min commute, four times a week than be spending over 4 times as long.
Once you get a club, there are still a number of barriers to participation, particularly if you want to develop. Competitions are a prime example of this, there are a lot less opportunities for racing as an adaptive rower. Lack of participation is one of the biggest problems here, but it’s a vicious circle, unless there are enough para-rowers out there, then there won’t be enough for a club to consider putting on an event, which means the sport misses out on raising its profile, when the sport really needs publicising. Out of sight, out of mind possibly. Often my club captain approaches the clubs where the rest of the squad are due to race, to see if they’ll put on something for me. I’m grateful that he does it, but there shouldn’t be the need. We should be considered like any other class of boat.
I think one thing that makes a lot of para-rowers reluctant to compete, as well as lack of competitors, is not knowing what the facilities will be like. Several times I’ve had to be lifted in my chair over a bank, or bum shuffled onto the jetty. It’s hardly dignified, and doesn’t help you concentrate on your race. Then there other things like accessing toilets. At one event, the only large toilet was in the men’s bathroom, so we had to block people coming in so I could go. Even this didn’t quite go to plan, as they didn’t lock the other door so as you can guess I rather shocked someone!!
At a much larger event, I was going to do my pre Race wee, but there was a radar lock on the door and my keys were at the hotel. They couldn’t find anyone who had a key, so I had to make do, leaving me stressed before a very important race. When at international invitational race, the coach we were to use was completely inaccessible to me, I don’t think they meant it, they just hadn’t thought about it.
My attendance at a recent event, was interesting, I had competition, we had been told they had access for me, so all was set to be good.
Sadly not to be, facilities failure involved me having to crawl up some old wooden stairs, cue purple knees, and relief that I don’t use my legs when racing as they were even more useless than normally. Even if the equipment had been working, I would have either had to crawl, or get my manual chair lifted up, to get over the landing.
In terms of people’s attitudes, I haven’t come across much disablism from people within sport, it’s usually patronising comments I get from strangers. “Oh, you do a little bit of rowing, how nice”, “No, I do a lot of rowing, it’s what I do”.
The best exchange was with a random man in the pharmacy.
Man : oh I pity people like you,
Me: I wouldn’t I have a fantastic life,
Man: *looks taken aback”
Me: *tell him what I am aiming for*
Man: “oh, yes people like little Ellie Simmonds are so good, and those Brazilians with no arms and legs still winning races”
Me: *deep breath* thankfully he goes before he can insult and patronise the whole disabled community any further.
I think that disablism within the sport is unintentional and work is going into improving the situation. The Paralympic legacy is doing a lot to raise the profile of if, and the few of us who want to race regularly are putting pressure on places to offer the opportunities. It’s a complex situation, as it is expensive for a club to invest in the boats needed, without any certainty that they’ll get the returns on them. Thankfully there is some funding out there, but that involves someone having time to wade through the application. I am seeing changes for the good, but there is still a lot of work to do to make it accessible to as many as possible.