I was assessed for dyspraxia in 2016, aged 33. I wrote this post several months ago (on a different blog) to explain why it mattered to me.
I’m sharing it again to coincide with Dyspraxia Awareness Week which starts tomorrow – Sunday 8 October 2017.
It’s something children have, right?
If you are reading this as someone who also got assessed as an adult or as an adult who thinks they might have dyspraxia, then like me you have probably found a lot of the information available for the condition is targetted at children. That’s understandable to a point as early diagnosis is going to make the life of someone with the condition a lot more manageable. However, there is a noticeable imbalance of information available for adults even though there is no cure and if it has never been recognised, it undoubtedly has caused a great deal of suffering for any adult to now be asking: is this me?
I didn’t know what dyspraxia was until my twenties and as soon as I did, I had my suspicions. When I looked into it, I saw it referred to as ‘clumsy child syndrome’, and most of the discussion online was centred around forums for parents. I couldn’t easily see how the NHS would support a diagnosis at my age (they don’t) and taking it further almost felt like an indulgence, after all, I had got this far.
Since being assessed, I have spent a long time thinking about my childhood in the context of having dyspraxia, and there is no denying that being a child makes the condition especially tough. Mostly because as a child you do not have any agency, and with dyspraxia, you do not even have agency over your own body.
It is hard to explain how everyday things terrified me as a child. Someone throwing a pen for me to catch would make my heart beat fast. I was scared of sports to the point of obsession. For a short while, I tried. I wasn’t overweight then as I am now and couldn’t quite understand, perhaps unkindly, why I was the slowest runner in the class. You notice these things at school, these things matter. I was painfully shy and awkward then, and after time, the mickey-taking from other pupils and teachers alike made P.E. a thing that caused me twice-weekly dread.
I managed to convince a newly qualified teacher to not force me to attend the swimming classes each week at Clapham Pools. Instead, she let me sit beside the pool as she tested herself on Spanish vocabulary.
My next teacher wouldn’t let me get away with this, and she was probably right in hindsight, but she offered no alternative course of action to handle my very public fear. She was the one teacher that fed back concerns to my parents about my abilities. She mentioned my sloppiness and my awful handwriting. I’m not sure she was thinking of dyspraxia, I actually got the distinct sense she didn’t like me very much, but at least she clocked something was up.
I was a bright a child, and for most of my teachers, that was enough. That was plenty. They had other children to worry about. My mother was the school cleaner, and teachers frequently congratulated her on what a model student I was. I was obsessed with history from aged 7. I was quiet, polite and curious. Sure, I wasn’t a fan of sports, but that was because I was a bookworm (I actually wasn’t – there was an assumption I read all the time which simply wasn’t true). My handwriting was incoherent, but you can’t have everything. True, I was very sensitive, bursting into tears at the drop of a hat, but that was all part and parcel of me being a clever clogs.
I spent a significant part of my childhood in fear. At home was a different story. I wasn’t an introvert at all. I talked incessantly. The youngest of four sisters I soaked up knowledge from all around me. Adults, knowing I was smart, didn’t baby talk me. I watched old films and adult television. Home life wasn’t necessarily blissful, but it was a haven. School terrified me, and my inability to fit in or look the part led to years of bullying from girls who were not quite sure if they could tolerate an association with me.
I didn’t have many friends, and by the time I left London to go to University, I had been drunk only a handful of occasions, and only really drunk once. I didn’t belong to any scene. I didn’t know any clubs. I thought the next few years would be the same. I didn’t look forward to University and barely put any thought into where I would go, choosing the same university as pretty much my only friend at the time, my boyfriend.
Everything aligned when I went to university on a social level. I embraced my independence, and I made friends instantly. I made myself single early on and spent the next three years making friends and living. I was a bit of a dick at the time, frequently poisoning myself with too much booze, getting obsessed with boys and spending all my student loan on nights out, but I lived those years. And if I fell over a lot, well I was often tipsy…
I do wonder what difference an assessment would have had during that period of hedonism. I wasn’t present enough for anyone to notice but had I started university with my dyspraxia diagnosis, I think I would have engaged with it a lot more. The concentration difficulties, the struggle for comprehension, reading slowly and short-term memory, were too much for me to confront alone when I was experiencing some form of arrested development.
I didn’t know what dyspraxia was at the time, but I barely engaged with academic life. I found lectures hard. I made many notes but couldn’t make sense of them afterwards. My mind wandered, and I soon went in less and less. About half-way through I may as well have been studying my degree remotely. Somehow I scraped a 2:1, but I am not sure how. I procrastinated and spent nights awake doing everything that bit too late. I still have nightmares about having failed after all or having my degree taken away from me.
The gender myth
I recently read an article about the late diagnosis of women with autism, and in it, the National Autistic Society found that twice as many women as men were undiagnosed. The reason I mention this is that dyspraxia is often thought to be more common in men, but there is no reason to explain why this is. There is one theory, and I subscribe to it, that women are less likely to be diagnosed.
There were so many symptoms in my childhood. The physical ones were evident – my fine and gross motor skills remain poor. I have no sense of spatial awareness – my inability to judge distances makes crossing the road very stressful, and I don’t understand the physical space I take up (which being a fat adult can be especially problematic). My problem with speech, my memory and my difficulty with sequential thinking should have been apparent as a child. When I was being assessed as an adult, I was told I was ‘textbook’.
Yes, awareness of dyspraxia is an issue, but I cannot help but feel that if a boy exhibited the same problems with coordination and visible stress when asked to participate in sports, some concern would have been raised and they may have worked out what the problem was.
I knew I had an anxiety disorder before I knew about the dyspraxia. I am not sure it is a chicken or egg situation. I think the dyspraxia exacerbates the anxiety rather than causes it. It certainly has knocked my self-esteem. After a time, the jokes about your disability wear thin. As does the anger of the fellow pedestrian who shouts at you because you seemed to make a beeline for them when you really didn’t mean to. Being back to front and inside out nine times out of ten is exhausting.
Being 33 and unable to tie your laces, use cutlery or ride a bike doesn’t do wonders for your pride. And although you don’t have to be unfit or fat as a result of dyspraxia, it is more likely that you will be. I wrote here about my struggles with grooming and from early childhood I was acutely aware of being unpresentable and a scruffbag.
Low self-esteem and high anxiety made relationships with men in my twenties especially tough. It wasn’t until I met someone who helped to make me feel comfortable with myself that I could start reflecting on the things about me that I always put down to me being shit.
Not finding the words
It became increasingly important to me to know whether or not I had dyspraxia. I knew something was up. I found myself getting frustrated as I mixed up words or couldn’t remember them at all. I was worried about how I was being perceived by others, for being judged as inarticulate. I shied away from public speaking, and I increasingly found self-organisation a nightmare to manage, made worse by my willingness to always do something new, something more.
I wanted the assessment to understand myself in the same way that knowing about my anxiety was a huge relief. It made me kinder to myself as I’m an extremely harsh self-critic.
Most importantly it would give me words to explain all the differences I felt. The way simple tasks just took longer. I wanted people to understand I wasn’t intentionally scruffy. My desk is messy for a reason. I fall up the stairs, I spill coffee everywhere and wear my clothes inside out because of something. It isn’t cute. Not that anyone thinks you are too cute when you are a fat woman in her 30s but clumsiness is often presented as adorably kooky, especially in the minds of men who fantasise about manic pixie dream girls.
I thought long and hard about this as it isn’t something you can afford to do with discretion unless you can pay for an assessment privately. I couldn’t. Instead, I looked into it with my HR department, and they referred for evaluation. Not all employers will do this.
I did deliberate about whether this was the right thing to. What if I wasn’t dyspraxic? Maybe I have the symptoms but not the condition. Maybe I have no excuses, and I am just shit after all. Or if I am, will people think less of me? Will they find out about my anxiety? Who will I have to share all of this with?
I didn’t really find peace with all of these worries and concerns. I just knew that I needed to know and that I would work everything else out.
Well, yes. I’ve been very candid about it, and it feels a part of who I am now. I am proud at how I’ve coped with it and found strategies of dealing before I even knew what it was. It has helped my self-esteem. Made me feel more generous about the things that terrify me but it hasn’t meant that I now have an excuse to avoid although, avoidance is an issue for me.
People’s reactions are interesting. I think some of those close to me realised quickly that it made sense, it explained things. For others, I am not sure it matched the version of me they know, and so it has been more of an eye-opener. A lot of people tend to tell me they’ve suspected themselves or people they are close to as being dyspraxic. And there are others who I suspect don’t know why I bothered to find out. Sometimes, when I am trying to explain it to someone who doesn’t care to understand, I also wonder why I bothered.
I would like there to be a greater understanding of what dyspraxia means and how it can manifest itself in different ways. How the combination of the many ways it can express itself can drive you to distraction. How it can rob you of your confidence or willingness to move outside of what makes you comfortable. How it can lead someone to spend their life avoiding things that are without explanation, so much harder than they should be.
I’ve joined the Dyspraxia Foundation, and I started this blog as a way of starting to do something useful with this new information.