Author on bench with back to camera

Why I got assessed for dyspraxia as an adult – update

I was assessed for dyspraxia in 2016, aged 33. I wrote a version of this blog post several months later to reflect on why it mattered to me. I also wanted to share the perspective of an adult diagnosis because it was something I wrestled with – would it be worth finding out and what difference would it make anyway?  I’m sharing it again (with an updated perspective) to coincide with the 30th anniversary of the Dyspraxia Foundation –  they are a small charity doing excellent work in helping to raise the profile of dyspraxia/DCD and without them, I may not have pursued my adult diagnosis.

I support the Dyspraxia Foundation with a monthly donation and I will be giving them a little extra in support of their campaign to raise £1000 for every year of their existence. The money they raise helps them to deliver the following vital services:

  • A dedicated helpline service manned by trained volunteers every day of the week, answering approximately 10,000 enquiries each year
  • A range of guides to further enhance others’ understanding of what dyspraxia/DCD actually is, how it can affect daily life, and how it can be a strength rather than a weakness
  • Conferences and workshops which are often the first time that a person with dyspraxia/DCD has met someone else with the condition
  • A network of local groups throughout the UK – creating conversation, friendship, reducing isolation and offering a safe and supportive environment, online and offline.

You can give online to support their work or you can also text DYSP30 £5 or £10 to 70070 to donate £5 or £10 to their #Dyspraxia30 appeal.


It’s something children have, right?

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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. This is something the Dyspraxia Foundation try to address. It makes sense when you think about it – parents and schools tend to clock when important milestones are missed or when a child struggles with some activities much more than they do others. However, there is a noticeable imbalance of information available for adults even though dyspraxia doesn’t go away. When weighing up whether or not to get assessed, this was a significant factor for me – I’m not a child – it’s too late for me.

I didn’t know what dyspraxia was until my twenties. I immediately knew this was something that made sense to me. When I looked into it, I saw that it was previously referred to as ‘clumsy child syndrome’, and most of the discussion online was centred around forums for parents supporting their children. I couldn’t easily see how the NHS would support a diagnosis at my age (they typically don’t) and taking it further almost felt like an indulgence, after all, I had got this far. However, I couldn’t put it to bed. I needed to know more and I think it has helped me to make sense of the past.

Childhood

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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 lead to me panicking.  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. the root cause of 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. I think that’s why I take Spanish lessons now.

My next teacher wouldn’t let me get away with this, and she was probably right in hindsight, but she lacked compassion. She was the one teacher that reported concerns to my parents. This teacher was a stickler for neatness in everything and I was scruffy in every possible way. She told them about my sloppiness, my awful handwriting and my unwillingness to take part in physical activities. I’m not sure she was thinking of dyspraxia, I actually got the distinct sense that I irritated her but at least she clocked something was up. It didn’t lead to anything though. My mum was actually the School Cleaner at the time and for years she had heard a very different narrative.

I was a very bright child, and for most of my teachers, that was enough. That was plenty. They had other children to worry about. Teachers frequently congratulated my mother for having raised a model student – quiet (withdrawn), polite (because I lived in constant fear of being forced to catch something) and curious obsessive).

My first obsession was history. I was completely taken with The Tudors. When the class was asked to write a few sentences about Henry VIII, I wrote the equivalent of an essay. I remember coming into school late following an appointment. I asked my friend what everyone was doing – it was a comprehension task and my friend quickly relayed the story I had missed. I quickly produced two sides of A4 to the puzzlement of my teacher at the time.

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 – I am a competent reader but I struggle with reading at length and lose concentration). My handwriting was incoherent, but you can’t have everything and wouldn’t we all be using computers in the future? 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. And so I was left to my own devices.

At home, things were different; I wasn’t an introvert at all. I talked incessantly. The youngest of four sisters I soaked up knowledge from those around me. Adults, knowing I was a smart kid, didn’t baby 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 didn’t make adolescence easy.

I didn’t have too 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 anything about London nightlife. 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 my boyfriend at the time.

Hello, Manchester!

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Everything aligned when I went to university on a social level. I embraced my independence, and I made friends instantly. I spent the next three years making friends and living.  I wasn’t shy at all (who knew?!) but I was in the habit of 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, despite procrastination and entire 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. In fact, these nightmares are now so detailed that I often forget I have a degree.

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.

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Sports Day, Vauxhall Park. Circa 1989. At this stage of the race, I was doing okay, comparatively.

There were so many symptoms in my childhood. The physical ones were evident – my fine and gross motor skills remain very 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 had 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. There are gendered expectations and for that reason, girls can get overlooked.

Anxiety

I have always been incredibly anxious but since finding out that this was more than simply overthinking things, it has been a lot easier to manage.  I am not sure it is a ‘chicken or egg’ situation but I can see how dyspraxia exacerbates anxiety. It certainly knocked my self-esteem; being back to front and inside out nine times out of ten is exhausting.

I am 35 years old and I am unable to tie my laces, use cutlery or ride a bike. I mix words and sounds up. I struggle with speech. My short-term memory is poor. I am not always aware of the space I take up (and I am fat, so its a lot). I hear how a word should sound but I cannot say it. I have no spacial awareness and Google Maps doesn’t always help me. I’ve turned up to social occasions in tears because I got lost and then I got angry with myself. I struggle with personal grooming and so it takes me much longer to get ready than most. I’m that annoying pedestrian in the street who gets shouted at by an angry commuter – you know, the one that suddenly changes direction and causes the world to end as a result. I have a limited sense of distance and space, and will always wait to see my good friend, ‘Green Man’ before attempting to cross roads (that’s just good sense though surely?).

Low self-esteem and high anxiety made some personal relationships tough and I wouldn’t do my twenties again if you paid me. It took a long time for me to realise there was something more to all of this than being a rubbish person.

Not finding the words

I found myself getting increasingly 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 or possibly ‘thick’. I shied away from public speaking, and I had to work twice as hard to keep on top of things – often taking work home and never feeling able to entirely switch off.

I wanted the assessment to understand myself in the same way that knowing about my anxiety had been a huge relief.

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 ‘kooky’.

Getting assessed

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 crap after all. Or if I am, will people think less of me? Will they find out about my anxiety disorder? 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.

Happy now?

Well, yes. I’ve been very candid about it, and it feels a part of who I am now. I am proud of how I’ve coped with it and how I found strategies for dealing with dyspraxia before I even knew what it was. It has helped my self-esteem and it has given me the confidence to try new things and not care so much about failure.

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 even bothered to find out.

Raising awareness

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. If you are interested in hearing about the ways in which dyspraxia can impact a person at work, please read their very useful guide, Working with Dyspraxia – a Hidden Asset.

Sick as a very good dog

One of the things I discovered after getting a dog is how good they are at being sick. They get on with it and it happens fairly often. My dog, Bette, is a bit of a scavenger. Living where I do, I spend a lot of time prising chicken bones out of her mouth. Anything hazardous seems to appeal. She also loves eating shit. Her own shit is the most common but any shit will do. Doesn’t have to be the same species, she’s rather partial to horse shit too. She is less enamoured by the food specifically designed for her specific dog-breed (Shih Tzu).

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Being sick did not come easy for me. I remember being terrified of being sick when I was younger. If I was unwell, I would fight being sick until I couldn’t fight it any longer. When the deed was done I would cry. It was an intense experience.

I’m not sure when I stopped being such a wuss but I suspect the reasons was alcohol. I didn’t actually drink much until I went to University and from that point I routinely poisoned myself, spending an entire day familiarising myself with Armitage Shanks.

Now I’m in my thirties, being sick is no biggie. It doesn’t make me anxious. I’ve finally caught up with pretty much every dog ever.

This week was a bad week for Bette. She had gastroenteritis. There was one moment where she was sat next to me on the sofa and looked horror-struck before puking all over the most expensive thing we own (our sofa). It was heartbreaking on many levels.

Bette is much better but the smell of sick still lingers on. The rug also took a hit. Dogs seem to prefer sicking up on soft furnishings. And shitting on grass.

Over the course of the week, I’ve spent close to £1000 on vet bills. We are insured but it is a huge outlay of cash. Of course, dogs can’t speak and so you can only really get to the bottom of most problems by x-rays and blood tests. She had a lot of x-rays this week as they worried there might be a blockage causing her to be sick (a chicken bone, for example).

I would feel like I had failed her if I didn’t do everything in my power to ensure she was okay but I couldn’t help but think of how difficult this must be for pet owners who cannot pay the bill upfront, nevermind those without insurance.

I found myself saying those horrible words: if you can’t afford a dog you shouldn’t have one. Luckily a friend was on hand to remind me why this was a bad opinion and it really is. It’s a stinker of an opinion.

To some extent, all dog owners are selfish. If we leave them alone, which is inevitable, we leave them with no humans and potentially no dogs, just so they can be around when we have time for them.

However, I would recommend being selfish and having a dog –  it’s life-changing. When I’m out with Bette she makes other people, especially children, smile. She makes me smile all the time and I sincerely think she has improved my mental health. There are days when I wouldn’t get dressed, never mind leave the house if I didn’t need to feed and walk her.

Caring for another being is therapeutic and that shouldn’t be off limits to those who can’t afford it. You meet a lot of people when you have a dog. Strangers talk to you, people make eye-contact and smile. That is a lifeline for a lot of people and I’ve met dog owners who live for their dogs, and potentially don’t have much else to live for.

So when they are sick, you feel awful but you shouldn’t worry because they are a dab hand at being sick, and they are worth the faint smell of dog sick that will permeate your home forever more.

Body neutral

This is a repost from a previous blog/life.

I am not positive about my body. I am positive about other people’s bodies. Not mine. I do accept my body, though.

I was a 11lbs baby. Doctors and nurses popped by to have a look. I had a head of hair and a monobrow.

Telling that story as an adult often gets a knowing look. Then I explain I wasn’t always fat.

I was a slim child and a slim teenager. And then I started getting fat.

Slim or fat, I spent my childhood, teens and twenties loathing my body.

Now I spend a lot of time reading blogs and tweets by fat women I admire. I love their bodies. I don’t really care for my own. It’s a bit too close to home.

However, I don’t hate my body anymore. At some point, and I don’t know when it began, I started accepting myself. Being easier on myself. I’d love to say it is more than acceptance, that it is love but it isn’t. A lifetime of self-loathing doesn’t switch overnight, but I don’t look back and wish I was a younger, thinner version of myself. That version of myself was riddled with anxiety and self-doubt. That version of myself was so sensitive it often felt that several layers of skin had been stripped back. And I have a low pain-threshold.

So for me, acceptance is an excellent place to be. Acceptance is being naked in front of someone you love. It is going swimming. It is holding your large, wobbly legs up while someone waxes your undercarriage. It’s going out on a summer’s evening when you are sweaty, and your make-up has long faded. It’s posting a selfie you know doesn’t do anything for you. It’s making your Instagram profile public. It’s looking at yourself in the mirror without sighing.

This doesn’t mean I like what I see. I never have, apart from special occasions. I want to be healthy, but I don’t equate that with being thin. I equate that with not losing my breath after climbing a flight of stairs.

The reason I want to be thinner is that being a fat woman is really tough. People make assumptions about your character, about your lifestyle, your work ethic, even your romantic status.

There is only one story my dad ever tells me about me. It makes him proud. After two weeks holiday as a child, I must have been nine or ten, I came home with a tan (it was the only time, I almost always go tomato-red). He walked me to his old stomping ground in Camden Town and bought me diet cokes in the pubs he used to frequent. My brown hair had hints of blonde, and my green-blue eyes contrasted my tanned skin. And I was thin. And that is the proudest he has ever been.

When you are a woman, there is no doubting your worth is tied up with your appearance. If your dad was born before WW2 in a country that doesn’t allow a woman an abortion, you can bet your bottom dollar that he measures it out the same way.

There is a Tony Harrison poem called ‘Book Ends’. It was in the GCSE English Literature Anthology in the late 1990s. As a teenager who quarrelled with my dad about politics, religion and would you believe it, vegetarianism (had me for five years, came off the waggon in 2002 when I ate a chicken kebab in Fallowfield) the poem was very relatable. The first half ends:

Back in our silences and sullen looks,
for all the Scotch we drink, what’s still between ‘s
not the thirty or so years, but books, books, books.

And that’s what I thought it was. Books. I was really obnoxious back then. Now I know it was actually ‘looks, looks, looks’.

And those looks get between me and others still, but I notice less. I’m not asking the world to love me anymore. I know that I did before and it was hard facing the news that the world would rather shag someone else instead.

Back then, the smallest of remarks could send me into a spin. Now I laugh when a beautician assumes by my appearance that I’ve had children. Lots of them.

No, I’ve destroyed this body myself through gluttony and a reluctance to move. Decades of eating, and more recently, drinking my emotions gave me those stretch marks. No child is at fault. Don’t blame the kids.

So although I am inspired by those who are positive about their bodies, I don’t think I can ever take it that far. I can only be myself and I am regrettably self-aware. The biggest curse of all.