—–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.
I try not to spend too much time in my own head, but a few conversations I’ve had recently have caused me to do some reflecting.
I recall a Paralympian being asked
Did you always dream of being a Paralympian?
No, not before my accident!!
Nobody born healthy plans to be a Paralympian, let alone disabled. It certainly wasn’t on my career plan at any age. I grew up, like so many, with no indication of what lay ahead for me. So how did I get here? Could I have done things differently? Would an earlier diagnosis have improved my prognosis? There are so many questions you can ask, but does it really matter now? I’m where I am and I’m going to make the most of it I can. Do I blame anyone for what’s happened? Was it my fault? Blaming anyone isn’t going to help, pent up anger is only going to expend precious energy, and nobody is perfect, we are not infallible. All we can do is learn from any perceived errors, and try to ensure they’re not repeated.
I write the rest of this from a position I’d become relatively unaccustomed to. I’m back in hospital after an emergency admission, just waiting to get my discharge letter.
Last night was a very long and drawn out procedure, including being told I could wait six hours for the OoH’s doctor, when the EMT who arrived first on the scene quickly identified that I couldn’t wait that long. Whilst we waited for the paramedics we chatted, amongst things he said that I must have done all the
why me? Why did this happen to me?
But in reality, no I didn’t. I was too busy trying to live the best life I could and as someone else once said,
why not me? What makes someone so special that they can avoid their share of difficulties?
I’ve now escaped hospital, after one of my more traumatic hospital experiences. The nurses were fantastic, I was looked after really well, but the actual situation was quite unnerving.
Anyway back to the original point, I’ve known from a very young age that I was different. I didn’t do the same things other children were doing. I never really fitted in, but because I was succeeding at school, (I was fortunate to have a strong interest in academia from very early on) nobody really paid much attention to my social interaction and other difficulties. It certainly made things more difficult as I went through school, but would having a diagnosis in childhood made things better? Or would it have just segregated me even further? I suspected in my teens I had Aspergers, but I didn’t know how to pursue it, and debated whether I wanted to be labelled, when I was having a hard enough time with the bullies on a daily basis.
I also remember being in pain from about the age of five. I particularly remember doing a vault at gymnastics and my knees made a huge cracking noise, which sent pain rushing down my legs. It was always passed off as growing pains, and I spent a lot of time with various bits of me strapped or in tubigrip. There were so many signs that there was something going on, like ‘spraining’ my wrist using a cookie cutter. That ‘sprain’ turned out to be a tear in my scapholunate ligament, which took doctors about 10 years to actually do something about. I was fortunate to be referred to a fantastic plastic surgeon in my early twenties who realised when he could manipulate the bones independently there was clearly something wrong. I owe so much of my hand function to him. As the tear had been left so long other problems had developed, including a thumb joint that spent more time in a dislocated position than it did in place. There was also the time I fell off an inch high curb, and tore ligaments in my ankle- that was a pretty lovely looking bruise!! These are just a few of the incidents. Warning signs were missed, none of my dive or gym coaches questioned all the strapping and injuries that in all honesty I couldn’t explain. I was identified as hypermobile, but that was it. I was doing sports that welcomed flexibility so I guess they weren’t too worried. I guess I do feel a bit let down by them, they just kept pushing and pushing, and didn’t worry that I got pain from doing any high board work. I hope situations like that now come under welfare concerns.
In general I was passed off as clumsy and a bit of a hypochondriac. The GP was fairly useless, we turned up in an emergency as my knees had completely locked straight after being outside for a fire drill. His response “don’t go out in the cold”, very helpful(!). I bumbled on like this for years, spending a lot of time in pain especially with the aforementioned wrist. I used to get in trouble at school as my writing changed style regularly, but it changed dependent on pain and strapping positions. Exams were a nightmare, so much pain whilst writing essays, but I was a case of ‘suck it up, and get on with it’. I passed them all and eventually started university.
I could spend time wondering if things wouldn’t have reached this stage had there been an earlier diagnosis. Instead I realise that the lack of any diagnosis from either aspect taught me to be resilient, determined, physically and mentally tough, motivated and generally it has caused me to be who I am, for which I’m grateful. The skills it taught may never have developed to such an extent had I not been through the situations I’ve been through. I honestly don’t know if I would change how I did things as I could have ended up being a very different person, and I’ve kind of grown to quite like me.
University brought more problems- I took up rowing, which my knees didn’t really agree with. I later discovered they were maltracking which was causing the pain. A physio put me back together on regular occasions, and again identified hypermobility, but said the knee pain was because my bones had grown faster than my muscles, so my knee caps weren’t sitting quite right. He diagnosed me with a few things he could tell I’d had previously, but still nobody took me very seriously. I learnt the art of strapping joints in place with tape, and that was it really.
Things started getting a lot more complicated when I went back to uni for my second year, a chapter of my life which was the beginning of the 5 years I spent with a misdiagnosis.
That however is another long story, but as I said originally none of this was in the plan, but nobody has a life that runs to plan, if they tell you they do, they’re lying!! We all have our obstacles to climb and hurdles to get over, some are just bigger and more plentiful than others.