Dyspraxia Foundation Adult Conference 2019

A week ago today, I arrived in Birmingham for the Dyspraxia Foundation Adult Conference. I’d been looking forward to it for months, but even so, it surpassed my expectations.

First things first though, after getting off the train I had to get lost trying to find my hotel in the rain! I had planned to join a few people meeting up the evening before the conference, but gave in to tiredness and got an early night instead (I feel like I’m getting old now!). It sounds like those who did make it had a great evening, so it’s a shame I missed out. Lesson learned for next time!

The morning of the conference was just as grey and wet as the day before, but this time I managed not to get lost (although I still nearly walked straight past the venue as I was so focused on dodging people and puddles!).

There was a friendly welcome at the reception area and guidance up to the first floor to register, and lots of signs to help point the way.

On registering, I was given my conference pack, which I’d requested on pastel-coloured paper. This was ready and passed to me with no reminders needed, making this the first conference or training event in the past year where I didn’t have to ask again for it or watch someone scurry awkwardly around trying to find what they’d done with it! So thank you to the Dyspraxia Foundation for making it an easy and comfortable experience requesting this adjustment, it made a big difference to my day.

Glad to be out of the rain, I took the opportunity to catch up with a few people, make some new friends and get onto the wi-fi as I waited for the conference to start.

National Survey Results

Following a warm welcome, the conference kicked off with the results of the Dyspraxia Foundation survey, which had been launched at their AGM earlier in the year. Sally Payne introduced a few (impromtu?) mascots before sharing the key findings.

Image of Sally Payne (Dyspraxia Foundation Trustee) in front of a presentation slide with black text reading 'Dyspraxia Foundation Adult Survey 2019" on a white background. There is a microphone in front of Sally and on the desk next to her are three cuddly toy mascots - a llama, a monkey and a banana.
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Sally outlined the key findings clearly and succinctly, and used quotes from survey respondents to put them neatly into context. I suspect the findings were not terribly surprising to most of those in the room, but hopefully they can be useful in pushing for better pathways to diagnosis and support. I won’t repeat them here as you can read about them on the Dyspraxia Foundation website here and, if you’re a member of the Foundation, I think Sally’s slides are or will be made available in the members’ area of the website.

Some questions were raised regarding the lack of NICE guidelines for dyspraxia/DCD and I think it’s important that this complex issue continues to be discussed. I know access to diagnosis is something the Dyspraxia Foundation cares deeply about, and also that progress on this requires a broad range of people and organisations working for change.

Diagnosis was always going to be an emotive topic, so hearing about dyspraxia and mental wellbeing was a timely next session.

Mental Health, Anxiety and Wellbeing

Dr Emma Tremaine’s presentation, covering the link between dyspraxia and anxiety (and also depression), was one of my favourite sessions of the day.

I really appreciated Emma’s approachable, down-to-earth presentation style and the way she integrated her own experience as well as her medical knowledge. Everything was well-paced, clear and easy to follow.

Emma highlighted the importance of self-care and shared lots of practical tips that people could start to apply in their lives. I especially heard lots of people talking about spoons later in the day, following Emma’s discussion about spoons as a metaphor for energy – with tasks that need more energy ‘costing’ more spoons and only a certain number of spoons being available in a given day. I like to imagine the spoons in the dishwasher overnight while I’m sleeping, ready to start over in the morning – but if I’ve had a bad day they might not all make it into the dishwasher, so I’m down a spoon the following day.

Image of Dr Emma Tremaine introducing herself at the start of her session
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When talking about mental health, it’s common for people to ask questions about their own experience, and I found the way Emma handled these very compassionate. She took time to thank people for sharing their experience and to recognise that they were likely helping others by doing so, and gave thoughtful and considered answers.

We were getting quite behind the planned time by this point, but I’d been so caught up in the sessions that I hadn’t even realised until I looked at my watch. The conference organisers handled this well and with humour – and through some magic, managed to still give us plenty of break time to mingle, visit the information stands and, later, get lunch.

Supporting Students with Dyspraxia

After the break, Kerry Pace from Diverse Learners took to the stage for one of the most energetic presentations of the day. She breezed through lots of information to help get the day back on track, time-wise, without it feeling overly rushed. She took time to give concrete examples of points she was making, and it was clearly evident that she is very passionate about people being able to meet their own individual needs – from the range of fiddles she handed round for people to try, to sharing non-learning specific things she had found helpful (I need to track down an electric blanket like the one she mentioned that allows different setting for your feet and the rest of your body!).

Image of Kerry Pace from Diverse Learners in front of a presentation slide giving social media links for Diverse Learners on YouTube, Twitter, ResearchGate.
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Kerry’s presentation was great at normalising lots of needs and strategies that I’ve sometimes felt embarrassed about or thought I shouldn’t need. I loved that Kerry said ‘this is what helps me, this is why’ and just did it (shoes off, fan going) – I think that’s a brilliant example. I’m not sure she does it to set an example, but it serves as one just the same!

Again, this was a great, down-to-earth session. I loved the mentions of specific software with images on the slides (the one where you can separate audio recording into chunks that go with each presentation slide particularly comes to mind). “Just keep swimming” is a motto I’m sure lots of us can relate to!

Image of a blue royal tang fish (the same type of fish as Dory from Finding Nemo)

Dyspraxia in the Workplace

Next up we had Laurence Turner talking about dyspraxia at work. Some of the statistics around discrimination always make me sad, but I really appreciated the practical approach to ‘this is what the law says, these are options that could help.’ Stressing that a diagnosis is not required for Access to Work was one point that I think was really key, especially following Sally’s presentation earlier.

I think this presentation was quite similar to what Laurence presented at the AGM in the summer, but I may be misremembering! Even so, I’m really glad that it could be shared with so many more adults at this conference than had been possible at the AGM, as it’s such an important issue.

Image of Laurence Turner in front of a presentation slide titled "Dyspraxia - an increasingly important workplace issue"
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Lunch!

By this point, it was time for a well-deserved lunch break. I popped out and braved the rain for a few minutes to get some needed fresh(ish) air before heading back inside. It was great to meet a few people I’ve known from Twitter, even if only briefly, and to move around a little after sitting all morning.

I also spent some time visiting the different information stands, and picked up some leaflets either for personal use or to take back to work with me. It was great to have a good number of stands covering a range of areas, from job search to in-work issues to mental health to support for students, as well as the Dyspraxia Foundation stand. For me this was one of the strengths of the adult conference as it allowed a little more one-to-one discussion. Although the stands were overcrowded at times, and some of the most popular were never missing a queue, I see this an an indication that the stands are a valuable part of the day.

Lived Experience

After lunch we heard from a number of people about their own lived experience of dyspraxia.

Danielle Hickey spoke about her experience of taekwondo – which I think it is safe to say she excells at – compared to her experiences of PE, which just goes to show we shouldn’t write ourselves off completely as bad at physical activity! She also reflected on how her teacher training had technically covered dyspraxia… but not well enough for her to realise it applied to her own experiences. I’m finding increasingly that people *think* they know what dyspraxia is, meaning things get missed or misunderstood, and that it can be harder to know where the misconceptions are – I’m sure I’m not alone in this experience.

Image of Danielle Hickey in front of a presentation displaying multiple pictures of her doing taekwondo under the title "Taekwondo, Dyspraxia, Teaching and Me"
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Janet Taylor spoke about the impact of dyspraxia on her working life, and her decision to return to work after a long break. I was really moved by her sharing some of the challenges and successes that she has had since returning to work and am pleased it sounds like she has found a supportive team to work in. She also shared some tips for travelling, which I will definitely be making use of in the future!

Image of one of Janet's slides, titled "The Dyspraxic Adult Abroad" in black text on a white blackground. On the left is a picture of Janet pointing at the Leaning Tower of Pisa. On the right are the following tips: Sit near screen in airport to check departure, if you don't want to use a lanyard pay for fasttrack through security, plan hotels near bus station, plan bus./train route or book transfer, use apps such as Rome to Tio, Move it and Google Maps, ask for the way until you find it, make sure powerbank and phone charged before leaving your room, use fitness watch to find phone in your untidy room.
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Mark Robinson also shared his experience, and this felt like a bit of an update after his presentation at the AGM in June as it touched on some of the same points in terms of mental health and aiming for success, but also continued on from where Mark had been in June. It was great to hear him sounding a little more positive and I was struck that we are often very good, as dyspraxics, at learning to persevere and keep going, but that sometimes it’s difficult to know when it’s not longer helpful or worthwhile to keep going (at least for me!). Mark spoke about reconsidering his career direction, and I thought that this can take just as much determination, courage and strength and persevering when things are difficult.

Picture of Mark standing in front of his presentation title slide with the title Dyspraxia and Depression in white on a black sheep.
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It was also great to see Mark become an official ambassador for the Dyspraxia Foundation! And very well deserved too.

I found these three presentations very moving and loved the mix of strengths, challenges, obstacles and successes that were discussed. Sometimes I think the conversation around dyspraxia can become polarised in a way that strips away from the complexity of the condition and that also minimises our full experience as dyspraxic people who might also be parents, friends, students, employees, bosses, artists, cyclists, quiz-players, partners, etc. It was great to hear about people’s different roles and put so much of what we talk about into the context of an individual’s own life experience.

Then there was just time for one final break – with having just shaved a few minutes from each of the lived experience presentations, we were back on time – before Harriet Kemsley took to the stage. I used the time to give some feedback on the flipchart sheets that had been put on the wall, but more on that in a bit!

Living with Dyspraxia

For some reason, it was not until Harriet Kemsley started speaking that I realised how funny her session was going to be. Given that she’s a comedian, I probably should have seen that coming!

I was crying with laughter as she shared so many experiences that I could relate to – getting lost trying to escape from Birmingham New Street, misadventures with underwear and in relationships, and so much more. The breakages fund is a budget I also have – and a necessary one, as I’ve killed two laptops in the last 5 years by spilling too many drinks over them (you’d think I’d have learned not to have drinks near my laptop!).

Image of Harriet Kemsley holding the microphone to her mouth with her right hand and a notepad in her left hand. She is not using any presentation slides.
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After the previous speakers, I was also grateful for the humour, as it helped lighten the mood at the end of an emotionally powerful day. I think it is safe to say that Harriet has gained herself some new fans!

Jonathan, Alice and Sophie from the Dyspraxia Foundation shared some of their reflections on the day and brought the conference to a close.

My Reflections

It’s taken me a few days to get my thoughts together. I was quite emotional after the conference, which I hadn’t been expecting. I’m really grateful to have been part of it.

I had high hopes for this conference, but even so, it surpassed by expectations. The range of speakers was excellent and I really appreciated the mix of personal and professional knowledge. An awful lot of thought and work had clearly gone in to the organisation of the day, and I would say that work certainly paid off.

Alice (Dyspraxia Foundation Adult Representative) had posted some flipchart paper for us to leave feedback about the day, with questions such as ‘what would you have done differently?’ and ‘how did the day make you feel?’ The responses about how the day made people feel were incredibly moving – so many people wrote about a sense of belonging, of being understood. There was an amazing sense of community about the whole day – including my favourite ‘overheard in the toilet moment’ (someone saying how great it is that we’re all bumping into each other but nobody minds and we can just be ourselves).

For one day, it was like being in a bubble of understanding and non-judgement. Where being myself was not only okay, it was positively welcome. Where it was okay to need a few quiet moments, or to say I was tired and trust that people would know this wasn’t a personal comment on them – that I just was tired.

We talk about the importance of safe spaces a lot and this was the first time I had really felt that I was in a truly safe space as my whole, dyspraxic self. There are safe people and relatively safe places in my daily life, of course, and other Dyspraxia Foundation events have felt like comfortable places to be me. But there was something different about knowing that most of the other people in the room were dyspraxic adults, and the sense of togetherness that was created between the attendees and the range of such relateable speakers.

It was also incredibly liberating to have the chance to think in more depth about being an adult who is dyspraxic. The adult workshops at the AGM of course give some very welcome space for this, but as someone who likes depth and details, having the full day to get a bit deeper was fantastic. I feel a little more comfortable in my own skin now, a little bit more proud of who I am, and a lot more confident that it’s okay to still have needs and struggles as an adult and to ask for help – and to celebrate my successes, too.

Thank you to everyone who spoke, to all those who came and especially to everyone who was involved in organising the conference. It was a fabulous experience to be part of.

Were you also at the conference? What was your favourite moment or speaker? Have I missed something that really resonated with you?

Dyspraxia, Exercise and Me (#Walk1000miles)

I don’t remember ever having a good relationship with my body.

I don’t mean how it looks, although there is that. But how it functions, or struggles to function. I feel guilty saying that – lots of people have bigger struggles than me. And yet, for most of my life, I’ve seen my body more as an enemy than a friend.

In primary school, I realised that just because I felt like I was copying the moves right in dance and gym, didn’t mean I was. I was the last in my class to learn to swim 25m – I can’t honestly remember whether or not I managed 50m. I hated any kind of running game, because I was so. very. slow. I bumped into people a lot. PE was a lot of red-faced falling over, or failing to catch the ball or get through the hoop.

Image of a primary school-aged girl with wet hair wearing pink swimming goggles and a dark blue swimsuit

We’ve stopped asking children who aren’t good at maths to do mental arithmetic out loud in front of other students. But every sports day, I got to go out and show half the school and the watching parents how great I was at being last in every race.

By secondary school, I hated exercise. I hated sports. I hated PE. I never wanted to exercise in front of other people again. Of course, there was no escaping PE lessons being a thing, but fortunately only those who were good at PE had to compete on sports day, so there was that. Then – freedom. I left school. The only time I had to worry about doing these kinds of competitive physical activities in front of other people was team building days. Thank goodness!

But more recently, a few things have happened. Among those things was being diagnosed with dyspraxia. Also amang those things, my brother introduced me to Walk 1000 Miles – a challenge (run by Country Walking magazine) to walk 1000 miles in a year.

Image of the Country Walking Walk1000Miles 2019 logo (black text on an organge background)
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Before being diagnosed, I wouldn’t even have considered it. I’d have been too busy beating myself up for being useless at exercise, and I’d never give myself the chance.

But I had now been diagnosed. I never anticipated how having that official label would really change my relationship with myself. Something about having that diagnosis, knowing that I wasn’t making it up or exaggerating my difficulties, helped me to be more compassionate with myself; helped me allow myself to be bad at exercise, and also push myself to do more anyway. To do that for my mood, and my health, and my self-esteem. And because I have this label, I feel more okay with having to take it slow, with taking longer to make progress. I’ve finally given myself permission to give it a go even if I’m not sure I’ll succeed. It’s okay to go at my own pace.

So I started walking more. I decided I’d only count outdoor miles, and off I went, plodding round the park or the shops. Initially, I told no-one other than my brother what I was doing – just in case I failed or it didn’t last.

Image of a person walking away from the camera down a cobbled street, with parked cars on the right-hand side.

A month in, I was going okay. Some bruises, some falls, and I’d learned stretching really does help, especially when I focused on walking fast enough to count as exercise. I started to think maybe I could do this.

A couple more months. A few more bruises.

When I’ve tried to make lifestyle changes in the past, they usually fall apart around the four-month mark. This time, there was a definite dip in my progress, but I kept going. I pushed through.

Image of a woman walking along a dust path through a field of white and purple flowers

I started, tentatively, to tell people. And very quickly, all that shame from when I was a kid came rushing back.

“Oh that’s easy,” they said. “You’ll do that no problem. But it’s good you aren’t taking on anything too big.”

Or the only reaction was a raised eyebrow that I might interpret as “That’s not like you,” or “You’ll never manage that,” or “Sorry, why is that even worth making a goal?” but that I hope meant something more supportive.

And I felt stupid again. Because to me, this is not an easy goal. It’s not a sure win. I nearly didn’t make it past four months. It’s daily effort, because somehow going for that walk is still not a habit (although it’s getting there!). I kept wanting to share my progress, my success, and then thinking… to them it’s nothing. They don’t understand. I felt ashamed and thought maybe it’s not an achievement, not really – just another thing that most people can do.

Of course, not getting the reaction I wanted was also partly my fault. I wasn’t always very good at saying that it was a big deal to me, or explaining why. And not everyone reacted that way – some were much more positive and supportive. I try to focus more on that, now.

10 months on, I’m still going. I hit 500 miles during the summer and claimed my first ever medal.

Last month, I made it to 1000 miles to get my second medal!

Image of my progress tracker (partially completed as I'm still going with the challenge) and 1000 mile medal. The gold-coloured medal is on an orange and blue lanyard

I’ve started sharing that, and just telling people I’m proud to have done it.

For me, this is huge. It’s the first time in my adult life that I can honestly say I do 150 minutes of moderate-intensity exercise a week. It’s the first time I’ve set myself a physical activity-based goal, ever – let alone achieved it. It’s the first time I’ve attempted a lifestyle change and lasted more than four months. It means that I can get to places I wouldn’t have been able to get before and think about new challenges. Despite the touristy combination of walking and lots of standing still during a recent city break, I was less exhausted than on previous similar trips. I’ve started the Green Chain Walk in London. I’m thinking – very, very tentatively – that one day (with a lot of preparation!) I’d like to walk Hadrian’s Wall.

So whilst I’m really, really pleased for my friends that this strikes them as easy (and I’m actively trying to interpret that as them having faith in me rather than misunderstanding the challenges involved), please remember that what is easy for you may not be easy for someone else.

I’ve found a place where I can be glad of my body and what it does for me. I hope that, whatever the strengths and limitations of your body, you have or can find a place like that, too.

What’s your proudest achievement so far?

Image of my silver 500 mile and gold 1000 mile medals
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Dyspraxia and Adult Diagnosis: The Aftermath and Impact

Following on from my posts about why I sought an assessment for dyspraxia and how the process went for me, in this post I’ll share the immediate and longer-term ways in which being diagnosed has had an impact on my life over the past 17 months.

How did you feel when you were told you had been diagnosed with dyspraxia?

At first, just so relieved. I wasn’t lazy, or stupid – I was dyspraxic. I wasn’t making a fuss about nothing – these were genuine difficulties. It was like those same fireworks that went off in my brain when I first learned about dyspraxia were going off all over again.

Image of fireworks going off at night

As I went home from my follow-up appointment, the other emotions started to hit. Sadness as it was now in writing that I was bad at certain things in a way that had never really been fully acknowledged before. Frustration that it hadn’t been picked up before, that my university hadn’t been able to help 2 years earlier when I’d asked. Worry about how my friends and family would react. Excitement that I might be able to get some support.

None of that could diminish my relief, though.

Over the next few months, as I started to process gaining a diagnosis, all of these emotions and more would come up. Frustration that people did not always believe me, or that they did not listen when I told them I was dyspraxic. Feeling overwhelmed by all the people my university advised me to tell – all my placement supervisors, and my research supervisor, and my personal tutor – and dealing with their varied reactions.

If I could go back, I’d have listened to my instincts more and not told people so quickly. I needed time to come to terms with it myself, first; I wasn’t ready to say ‘this is what it is, this is how it affects me, this is what I do to manage that, if you do this it will help – oh and also it gives me these strengths, too.’ It probably took me the best part of a year to process and come to terms with it enough to start wanting to talk about it.

Image of an hourglass on pebbles. Blue sand is trickling from the top to the bottom of the hourglass. White text on the image reads "Give yourself time to process, if you need it"

So there was an adjustment period, then, as you processed it?

Yes, definitely. Even though I’d thought about it a lot, having an official diagnosis still felt huge.

What do you think has been the biggest benefit of having been diagnosed?

It’s helped me be kinder to myself – to show myself the same compassion that I hope I show others. Instead of beating myself up, I remind myself that something being challenging is okay, that not being good at something is okay – and that it’s okay to continue working at it, but it’s also okay to get help or decide to prioritise something else. Part of compassion is recognising that I can’t do everything, and choosing to focus on the things that offer the best value for my energy/effort! This means I’m better at pacing myself and accepting that sometimes it’s worth a big effort to do something, but sometimes it’s not.

I no longer feel like I’m doing something ‘bad’ when I don’t have energy, so it’s not even that I forgive myself for not being good at or taking up everything I could. I’m much more accepting of who I am. Ironically, that’s also meant I’m even more determined when I do decide to do something!

It sounds like being diagnosed changed your relationship with yourself. Did your diagnosis also change your relationships with others?

I think being more open about it has helped others understand a bit more. It’s helped me be more patient when people struggle with things like organisation – things I used to beat myself up for, I would also be critical of others for, but now I’m much less critical and more focused on understanding.

Image of a person's hand holding a pink placard. On the placard are the words "Practice Kindness" in white text

It hasn’t all been positive. I’ve had some people who have said they don’t think I’m really dyspraxic, because of stereotyped ideas they have about dyspraxia. That’s been really hard for me – I hoped being diagnosed would mean I wouldn’t have to keep proving it anymore! But, having said that, some people have been really supportive and amazing, and some of my relationships are stronger than before.

What about at uni? Did it help there?

Not much so far. Partly that’s because I didn’t quite get around to applying for Disabled Students Allowance until quite recently. Partly I wasn’t really ready to explain how dyspraxia affects me to my research supervisor, so it ended up in a kind of “oh so you just need to be more organised?” kind of scenario. But I’m hoping now that I understand my dyspraxia and bit more, and especially if I do get anything from DSA, that those things will help. It’s still a work in progress, but understanding my process and how I work is valuable even if it hasn’t yet shown objective benefits. My impression is that it’s common for people to find a diagnosis does help them at university as they can access more support.

What about at work – did you get any adjustments?

Not explicitly. It’s a bit complicated because I’m on a casual hours contract, so although I think I’m still entitled to reasonable adjustments, I don’t know how you decide what’s reasonable when the person might not do any further work for the organisation in a week or two’s time!

There are some things that I’m learning I do as coping strategies – for example reading supervisees’ notes in advance of supervision so that I can process them at my own pace more easily – and there are other coping strategies I don’t have as much access to as I used to (like getting meeting agendas in advance, and my own corner desk) that I’m learning are actually really helpful for me. I’m confident my employer would at least consider adjustments if I asked, but at the moment the most helpful things for me are often things I do myself in terms of how I plan my diary etc.

What about day-to-day tasks, things like cooking and cleaning?

Feeling like it’s okay to struggle with these has been a huge help in and of itself! Then there’s being able to draw on the knowledge and resources of the dyspraxia community – tips from individuals, from the Dyspraxia Foundation conferences, from the Dyspraxic Doctor, from all the different people posting on Twitter. My favourite tip so far is pouring drinks on trays to contain spills!

Image of a man's hand pouring coffee into a grey cup on a wooden tray. There are a number of other cups on the tray.

Did being diagnosed have any impact on your health and wellbeing?

Definitely.

Psychologically, because I’m much more accepting and understanding of myself and my needs (and I can call them needs now without worrying about whether they are really needs), that’s helped me feel less stressed about a lot of things. Sometimes it’s been hard, too – there was a point where I was thinking that slow processing speeds might suggest I shouldn’t be working in fast-paced mental health settings where sometimes you’re dealing with a crisis very unexpectedly. I’ve had to remind myself that I’ve been handling those kinds of situations for 9 years just fine, but for a while I was really questioning if I could still go in that direction. I’m more confident now and some clients have even said the time I take over listening and replying has helped them to really take time to listen to themselves, too.

My physical health has benefitted, as well. I’m less harsh on myself around exercise, so I’m walking a lot more and at a speedier pace. I’m enjoying that! I’ll be talking more about it in a separate post tomorrow because it’s a huge achievement for me. And just giving myself permission to acknowledge it as an achievement has in turn been really powerful.

Image of a person wearing black leggings and blue-and-pink trainers walking on the footpath between two patches of grass. The person is only shown from the waist down.

Have there been any drawbacks to having been diagnosed?

As much as some of the things that have come out of being diagnosed have been difficult and there has been a process of coming to terms with it, I don’t think I would say I’ve experienced drawbacks of having been diagnosed. Partly that’s because I don’t feel I’ve experienced discrimination, which I know is something that other people have faced. And partly I think it’s because lots of the more difficult aspects, like other people’s reactions, are things that you have to deal with even if you aren’t diagnosed – only, instead of “you can’t really be dyspraxic” it’s comments on how often you fall over, or drop things. So for me I don’t think there have been any specific drawbacks.

Is there anything you expected would change as a result of being diagnosed, that actually didn’t change?

I thought things at uni and work would change, that there’d be more support – but equally I think the main reason those things haven’t changed is because I haven’t pushed for them to.

Knowing what you know now, would you still decide to pursue a diagnosis?

Definitely! I’m really glad that I got assessed and that I have the opportunity to learn more about myself and how I cope in the world. It’s also really helped me to feel validated and to stop blaming myself when I feel like I’m working hard for slow or minimal progress.

Thank you for reading, I hope my experience has or can help you in some way. I have one more blog post coming tomorrow, focusing more on how being diagnosed helped me walk 1000 miles this year, which is one of my proudest achievements to date.

Dyspraxia and Adult Diagnosis: How?

Earlier this week, I posted about why I sought an assessment for dyspraxia as an adult. Following on from that, this post covers my experience of the assessment process via my university. I’ll also share some tips that helped or would have helped me during the process – some will be aimed at people seeking diagnosis, others will be more relevant to professionals involved in making that diagnosis.

Sounds good. So what were the first steps you took towards getting a diagnosis?

The first thing for me was learning more about dyspraxia. I worry a lot about taking up time or resources unnecessarily, so if I was going to ask for an assessment, I wanted to be reasonably confident that I really needed it. I read a lot from the Dyspraxia Foundation website and the NHS website, among others.

An image of a library with white floors, walls, shelves and stairs, to symbolise the amount of research and reading I did.

I also watched lots of YouTube videos about what dyspraxia is and what it’s like to be dyspraxic. The Diverse Learners videos about things like eating, brushing your teeth and kitchen gadgets were really helpful in normalising the things that I struggled with as something that other people with dyspraxia also struggled with, which helped me feel more validated in seeking an assessment. I also found videos by the Two Dyspraxics helpful, they are a bit longer and I sometimes found it hard to concentrate but they were interesting.

But probably the biggest thing which helped me to feel more confident to seek an assessment was downloading and completing the Adult DCD Checklist. It was incredibly validating to have my score and to know that I was scoring in the ‘probable DCD’ range. It really helped me to challenge my fear that what I thought was dyspraxia was actually just normal and helped me to re-frame my thoughts from “What if I’m actually just lazy or bad at coping with things I don’t actually find any harder than anyone else?” to “What if I actually do find these things harder than other people and I’m being unfairly hard on myself by beating myself up over that?”

That’s a lot of research! What next?

Well, now I was sure I wanted to get assessed. As I mentioned in my last blog, this is no mean feat as an adult! But fortunately my university was – 2 years after I first enquired about it! – now able to facilitate an assessment. I sent an e-mail to my university Neurodiversity Support Team explaining that I suspected I was dyspraxic, included a copy of my completed DCD checklist to support this, and asked about the process for assessment.

Within a couple of days, I had been sent a form to sign to confirm that I was a UK student (so I’m not sure if international students can get a funded assessment through their universities). I also had to confirm that I’d had an eye test within the past 2 years and agree to wear my glasses during any assessment appointments. Once I e-mailed that back, I was quickly contacted to book a screening appointment.

A screening appointment? What’s that?

The assessment is quite long so I was asked to go to a 30-minute appointment first to check if I have any signs which might indicate that a full assessment would be beneficial.

What happened during your screening appointment?

I had to fill out a couple of questionnaires, including re-completing the DCD checklist. There was a brief spelling and mental arithmetic task, and the tutor also looked at my handwriting. They assessed my working memory (working memory is about information you need to remember temporarily in order to complete the current task or tasks) by asking me to listen to and repeat back sequences of letters, then sequences of numbers. There was a task to copy some shapes, sometimes also being asked to alter them (for example, by drawing the mirror image rather than just copying the shape). And I was asked some questions about why I thought I might be dyspraxic.

Image of a person writing on a piece of paper on a wooden desk. The image focuses on the person's hand; they are writing with a pencil which has a white eraser on the end.

At the end of the appointment, the tutor said I was scoring largley normally on the tests and that there was no indication of dyslexia, so she wouldn’t normally recommend any further assessment, but that on this ocassion she’d make an exception because of my DCD Checklist score.

How did you feel about the appointment?

Truthfully, I was a little disapointed. It was all quite fast-paced and it was obvious that it was essentially a screening for dyslexia with a couple of add-ons because of what I’d said about dyspraxia. I had also hoped that my process would be considered as well as outcome – for example, I found drawing a mirror image very challenging, and could only do it by tracing each individual line of the original backwards, then doing the same action in the space where I was supposed to put the mirror image, but this was not considered. Or maybe that’s normal? I don’t know. There also wasn’t any consideration of whether I was using strategies to compensate for difficulties (eg on the working memory tasks, I pictured the letters/numbers, and as the sequences got longer also found myself moving my hands as if writing the sequences down, to try to remember them).

I don’t know if this is something most people would have been disappointed by? As part of my course, I’d just completed training in assessing things like working memory, so perhaps having just learned about the importance of asking about strategies and process made me more sensitive to that!

But, since the outcome was that I would be offered an assessment for dyspraxia, I set aside my disappointment and hoped that the full assessment would be better.

What happened after the end of the screening appointment?

Image of a yellow sign with  ablack arrow pointing to the right, hung on a wooden picket fence with some trees in the background

I was sent a brief email confirming that I’d be contacted shortly to arrange an assessment. About a month later, I was offered an assessment appointment. It was another few weeks before the assessment appointment, but the appointment would be at my university and with a specialist tutor who had completed a qualification specifically in assessing for dyspraxia (and was also separately qualified to assess for dyslexia). I was told it would take approximately 3 hours, with the opportunity for a break.

How did you feel at the time?

I was quite nervous, but reassured that the assessor was at least qualified to assess for dyspraxia. Truthfully, I was so busy that I did my best to put it out of my head until a couple of days before the assessment!

Did you do anything else to prepare?

I didn’t plan to. I got a bit anxious again that I was making a fuss about things that are just normal, especially given what had been said at my screening appointment, and I compensated for that by reminding myself of my DCD checklist score and going back over the questions to reassure myself I’d answered fairly and honestly, but that was mostly to manage my anxiety.

One thing I did that was actually helpful was to dig out my old school reports. Seeing teachers commenting that my coordination was bad, all the way back to primary school, was useful. Their comments also reminded me of things I’d forgotten – like how often I mislaid belongings!

Image of a chalkboard with the text "Bright but uncoordinated" and "Needs to work on presentation of work" written on it in white letters.

What happened on the day of your assessment?

My assessment was in the afternoon, but I headed to uni a bit early to make sure I was there in good time. My assessor met me and took me through to the room where we would be having the assessment. She gave a brief overview of the agenda for the afternoon – which I promptly forgot – and encouraged me to ask for breaks if I needed any in addition to the break we’d take about halfway through. I was given a selection of pens and pencils which I could use if I wanted during the tasks.

I was asked some questions about my childhood, my medical history, whether anyone in my family had any learning difficulties, my education and work history and my hobbies. I was asked about why I suspected dyspraxia and the assessor picked up on things in my answers to ask more in-depth questions. Sometimes she made assumptions about what I meant – for example, when I talked about being tired at school, she made a note of this, but it wasn’t until I would get my report a few weeks later that I learn she’d thought I meant mentally tired, when I’d meant physically tired.

Then I was screened for visual stress by completing a short questionnaire about things like glare from paper/computer screens, andwords/letters being blurry or seeming to move on the page. This indicated I might experience visual stress, so I was helped to try out some coloured overlays to see if any helped and to choose one to use during the rest of the assessment.

Then there were some cognitive tests, assessing things like working memory (now with an additional test involving recalling and imitating sequences of shapes with one hand, such as making a fist or holding you hand flat, palm down), verbal ability and visuo-spatial awareness. The tasks included things like giving definitions for words, or combining combinations of diamond-shaped counters to recreate a given shape. My assessor noticed some things I had not even considered – for example, she commented that I seemed to find it difficult to line up the counters against each other, which was so normal to me that it hadn’t even registered! And unlike in my screening assessment, I was asked about strategies and process. My assessor explained that even though I was just hitting the average range for working memory, the number of strategies I was using to do so suggested I was working hard to compensate for what was likely to actually be a poor working memory.

There was a spelling test and some tests that I associate more with dyslexia than dyspraxia – such as a test of phonological awareness (as I understand it, this is to do with identifying and processing the different sounds that make up language). This involved listening to separated sounds (eg mm, oh, st) and identifying the word that they form (in this case, most).

I was asked to read a passage aloud and then answer some questions about it, and then given a longer passage to read silently before answering multiple-choice questions about the information I’d just read. There was also a rapid-word naming test, which involved reading a list of words as quickly as possible. I think these were intended as assessments for signs of dyslexia, but suspect my performance at least partly reflected dyspraxic-type difficulties – for example, I couldn’t remember much of the passage I’d read aloud because I’d been focused on forming the shapes of the words clearly and pacing my breaths so that I didn’t run out of breath mid-word. I remember thinking it was quite an interesting passage, so it must have made sense to me, but afterwards I could remember almost nothing about it!

Person reading from a book which is resting on a wooden table. The person is following the line of test with their finger as they read.

There was a break in there at some point, so if you’re thinking it’s a lot of tests – it is, but most were quite short and when I asked for a break a little early, it was happily given.

I was also asked to do some physical tasks – jumping as high as I could on the spot, for example, and walking forwards and backwards in different ways (such as on tiptoes). I was quite anxious about doing this as there were some plastic boxes with things like large Lego-type bricks in them behind me, and I think my assessor was scared I’d fall over them at one point as she shouted ‘stop, stop, stop!’ but I did the exercises as best I could (which is to say, generally quite poorly!).

Finally, there was a 15-minute writing task where I was asked to write as much as I could in the time about my thesis question.

Then I was free! I was really happy the assessment was over as I was pretty tired by that point, but it had been an interesting experience and there were a few times my assessor pointed out things I hadn’t been aware were unusual, such as how tightly I gripped my pen. I was told I’d be contacted within a week or two to arrange a follow-up appointment to discuss the outcome of the assessment.

Sounds exhausting!

It was, but also kind of enjoyable. Although lots of the tasks were challenging, I found some really easy, so it also reminded me of my strengths.

So what happened after your assessment?

As they’d said, I was contacted a couple of weeks later to book a follow-up. This should have been with the person who did my assessment, but unfortunately I couldn’t get any more time off placement to attend during my assessor’s working hours. It was therefore arranged with another member of the team.

What happened at the follow-up?

I was given a copy of my assessment report and the ‘key themes’ were explained – I was told that I had been diagnosed with both dyspraxia and dyslexia, and was also advised to seek an assessment for visual stress (unfortunately, that’s another one where you have to pay privately for an assessment). I was also told that my verbal and spelling abilities were excellent, so that was nice! Since there aren’t spelling tests after school, I’d pretty much forgotten I was good at spelling.

Image of two women meeting in a room with brick walls and a wooden meeting table. One has their laptop open and the other is taking notes on an A4 pad of lined paper.

There wasn’t time to go through the report in detail, but there was a limited amount of support offered for how I felt emotionally in terms of asking how I felt about it. Most of the follow up was really focused on telling me the routine adjustments the university makes (extra time in centrally-booked exams, of which I had no more to sit; longer loans on library books so long as no-one else has requested that book; and a yellow sticker for lenient marking of spelling and grammar on written work except for my thesis (all of which I had already submitted, by that point! It also seemed odd to effectively say ‘your spelling is great but we’ll take into account that it might not be when marking assignments!’). I was told allowances aren’t made for my thesis as it’s expected that by that point I am able to write to a professional and academic standard (I am still not sure what I make of that).

And then I was on my way, with a copy of my report and a list of recommended reading!

What was helpful about the assessment process, for you?

I liked that the communication from the neurodiversity team was very clear about process and timescales, and the waiting times were shorter than I had expected. I really appreciated that my assessor shared their observations about how I completed tasks as it was quite validating to hear that and also helped me feel less embarrassed.

Image of a grean tick with a white clay-model style figure leaning on the tick with their arms crossed, as if lying back on a reclining chair

What was less helpful about the assessment process?

It was unfortunate my follow-up couldn’t be with my assessor, and perhaps if I’d pushed my uni/placement may have permitted me to make up the time later, but I didn’t want to wait the extra time it would take to arrange that before finding out the outcome!

I was really disappointed how much the whole process focused on dyslexia (and really shocked to be told I’d been diagnosed with dyslexia after almost being refused an assessment because the dyslexia screening did not indicate dyslexia, but that’s another story). Thinking back on the assessment, I wish I had shared that the reading out loud tasks were affected by thinking about articulation and pacing my breathing, or asked how performance on those tasks is combined with performance on other tasks to separate out dyslexic and dyspraxic difficulties – but that might be my professional hat speaking!

I also wonder if such a long assessment is helpful – although mine overran, so that probably didn’t help either! In retrospect, although the assessment was long and tiring, I do think that’s preferable over splitting the assessment into two, shorter sessions – at least I didn’t have to make time for it on multiple days, or factor in the additional travel time and cost that more sessions would have involved!

And of course, I wish I’d been able to access an assessment earlier in my course, before I’d submitted everything except my final placement sign-off and my thesis!

Do you have any tips for someone approaching an assessment?

Image of a yellow piece of paper with a light bul drawn on it. The paper is pinned to a corkboard with a red pin.
  • Spend some time pulling together a list of the reasons you think you are dyspraxic.
  • If you still have them, look through school reports or feedback on previous work – I was surprised how much additional evidence I found! Sometimes you may also be asked to bring copies to your assessment if you can.
  • Spend some time identifying what strategies you use to compensate for difficulties – I found this a challenge as I’m so used to some of my strategies that I’ve forgotten how much I struggle without them!
  • Ask for breaks during the assessment if you need them.
  • Ask the assessor if they want you to use your coping strategies during the assessment. Whether they say yes or no, it will almost certainly prompt a discussion about your coping strategies!
  • Remember that your assessor has likely seen lots of people perform these tasks; even if you are struggling, they will be used to people finding these tasks challenging.
  • Remeber that you have strengths as well as difficulties and that the assessment will highlight these, too.
  • If there’s anything you’re unsure of, ask.

What about for professionals who are doing these assessments? Any tips?

  • Check that the environment is comfortable. What my assessor thought was a quiet and brightly-lit room was overly warm to me, and the desk was too high. Opening a window or fetching a higher chair were relatively easy and helpful adjustments.
  • If you are more used to assessing one condition than another, consider whether this impacts on how you interpret the tests or other information. Are you used to listening for signs of dyslexia? If so, is there a risk you might interpret some information as indicating dyslexia that could also indicate something else? What additional questions or information might help counteract this?
  • Ask if there is anything the person thinks is important for you to know about how they approached or achieved a task. You may get extra information that helps you understand the person’s process or difficulties, and even if you don’t, it will help the person to feel understood/considered as an individual and not just as a series of difficulties.
  • Remember that a good assessment experience can be the first time anyone has tried to understand our experiences, and as such has a lot of value to us in its own right, separate from the outcome.

Are you glad you got assessed?

Yes, definitely. It hasn’t always been easy and being diagnosed has not been wholly positive, but I am still glad and the benefits have far outweighed the negatives. I’ll be talking more about the impact getting my diagnosis has had for me in another post later this week.

Image of a woman with blond hair smiling at the camera while walking away from the camera on white sand. The sunlight is hitting her face and she looks happy.

I think I or my child might be dyspraxic, how can I arrange an assessment?

  • Contact your GP (be aware that the extent to which people have found their GP helpful has varied greatly)
  • If you are at university, contact your Student Support service, ask your personal tutor or contact your university Disability Team or Neurodiversity Team
  • If you are employed, consider whether you would want to ask your employer or union for support/advice
  • Contact the Dyspraxia Foundation Helpline.
  • Start gathering supporting evidence – for example, this questionnaire is a screener questionnaire for possible dyspraxia.

I hope this post has helped to answer any questions you have about diagnosis. The process is likely to look different depending on what professionals you see – an Occupational Therapist may do a very different assessment, for example – so please do bear in mind that this is only my experience of getting a diagnosis through my university.

For more information about getting a diagnosis, you can contact the Dyspraxia Foundation or contact your GP.

Dyspraxia and Adult Diagnosis: Why?

I was in my late 20s when I first seriously considered that I might be dyspraxic. For much of my life, I had wondered if there was something wrong with me that would explain my general lack of coordination, but I didn’t know what that something might be.

When I read about and learned about dyspraxia, a bubble of hope sprung up inside me. Could this be the thing, the answer, the reason? Could it be possible that I wasn’t making something out of nothing?

Getting assessed wasn’t a possibility for me at the time – not unless I could find hundreds of pounds to fund it. My university didn’t help with dyspraxia assessments.

Image of a selection of copper and silver coins spilling out of a clear jar, which is positioned on its side on a wooden table.

Truthfully, even if I could have gotten an assessment, I was a bit too scared to have gone through with it. What if I got assessed and was told it was all in my head? That there wasn’t a reason I was struggling, that I really was just lazy? Working in mental health, a fair number of people come to the service explaining that they think they have a particular diagnosis; and although I can usually understand how they have reached that conclusion, sometimes another label and/or treatment approach might make more sense with what they actually describe experiencing. So I was very cautious about self-diagnosing dyspraxia. I know that self-diagnosis is not always accutate (although, equally, it absolutely can be accurate and can be an important step towards accessing appropriate services and support, whether it is accurate or not!).*

But over the next couple of years, the idea just wouldn’t go away. Eventually, I checked back with my university and – amazingly – there had been a change. They would now offer an assessment for dyspraxia.

Nervous, even frightened, but also excited, I jumped at the chance.

Why did I want an assessment?

  • To answer my question – was I dyspraxic?
  • Validation – to know I wasn’t making up all these difficulties, that I really did struggle more than might be expected
  • Self-understanding – to be able to know myself better
  • Potential support and adjustments – I didn’t really know what support or adjustments might be available or helpful, or what it would be reasonable to ask for
  • Potential to learn coping strategies
  • To be able to explain my struggles better to others
  • To make sense of past experiences
Image of a chalboard with the words 'Be proud of how hard you are working' written on it, alongside 2 pencils, a mobile phone, wireless headphones and an open exercise book with lined paper.

In particular, I was really struggling at university. Not so much with any particular element – if you only saw me on placement, or in class, for example, you’d be forgiven for thinking everything was fine. But trying to shovel the amount of information I needed to learn into my brain, trying to process that and be able to apply it on placement, alongside juggling 2 placements, lectures, assignments, reading and my thesis, as well as needing to work during the holidays? I felt like I was always running, never on top of things, never fast enough. I felt really stupid and incompetent, despite the positive feedback from my supervisors. I took breaks from choir so that I wasn’t always travelling, which helped me have more energy but also meant I lost a form of stress relief. I reduced how many hours I worked (paid work) during the holidays – but that meant I had more financial worries. I tried so, so hard to pace myself – but I couldn’t find a pace that genuinely worked both for my coursework and for my energy levels and wellbeing. I was permanently exhausted, and increasing amounts of my mental energy were going on weighing up whether to even continue. Maybe I was just never meant to qualify. Maybe my career goals were too ambitious – it wouldn’t be the first time I’d aimed for something outside my ability to achieve.

I needed to know. Was I dyspraxic? And if so, what might help? Or was I clutching at straws, hoping for a reason, when in reality I just wasn’t cut out to do a professional doctorate?

It sounds like it felt really important to you. Are those the main reasons people seek assessment?

It was. Different people will seek a diagnostic assessment for different reasons. They might hope that a diagnosis will help improve their relationships or mental health, for example. There might be lots of overlap with my reasons, or their reasons might be quite different. That doesn’t make them any less important than mine were.

Some people will be happy with self-diagnosing or with suspecting they have dyspraxia, and not feel the need for an official diagnosis. Unfortunately, especially for adults, it’s hard to get an assessment – unless you’re rich enough to pay. Often universities can fund or part-fund assessments, and some employers may also be willing to help, but not everyone can be in university or lucky enough to have an employer prepared to fork out the cash. I’m very conscious that a certain amount of privilege in my life was necessary for me to access diagnosis, and it’s deeply unfair that some who would like an assessment don’t have the same opportunities that I did to access one.

If some people are happy without a diagnosis, does diagnosis really matter?

I would say a big yes to this. Partly this is based on my own experiences and the impact having a diagnosis has had on my life – I’ll be posting a follow-up blog about that later this week, but (spoiler alert) the impact has been greater than I ever anticipated and I’m incredibly glad I swallowed my fear and sought an assessment while I could.

Image of a rainow ending at the sea

The Dyspraxia Foundation also recently released findings from a survey of their adult members which support the importance of diagnosis. I won’t repeat all the findings – you can read them on the Dyspraxia Foundation website here – but, of those who had been diagnosed:

  • 71% were relieved by this
  • 52% reported a positive impact on their mental health
  • 52% reported a positive impact in terms of activities of daily life
  • 36% reported a positive impact of family relationships

Of those who had not been diagnosed:

  • Over half considered that not being formally diagnosed had a negative impact on education or career progression
  • Over two-thirds reported that not being diagnosed negatively impacted on their relationships, mental health and everyday life.

To me, that’s a pretty clear message – diagnosis matters, even in adulthood.

I think I or my child might be dyspraxic, how can I arrange an assessment?

I’ll be posting later this week about how I approached getting an assessment, the process and things I found helped, so keep an eye out for that. In the meantime:

  • Contact your GP (be aware that the extent to which people have found their GP helpful has varied greatly)
  • If you are at university, contact your Student Support service, ask your personal tutor or contact your university Disability Team or Neurodiversity Team
  • If you are employed, consider whether you would want to ask your employer or union for support/advice
  • Contact the Dyspraxia Foundation Helpline.
  • Start gathering supporting evidence – for example, this questionnaire is a screener questionnaire for possible dyspraxia.

I hope you’ll check back later in the week for my posts about my experience of the assessment process via my university and about the impact of my diagnosis on my life. And whether you decide to pursue an assessment, are not in a position to pursue an assessment, don’t have access to appropriate assessment, or decide you don’t wish to get assessed – remember that you are not alone, you are not lazy, and that dyspraxia comes with important strengths alongside the struggles.

Image of three white placards fastened to a metal fence. The placards state "Don't give up," "You are not alone" and "You matter" in black text.

*This does NOT mean that self-diagnoses are always wrong, sometimes people are absolutely spot on with their self-diagnoses. I am just saying that because I know self-diagnosis is not foolproof, I personally felt too anxious about getting it wrong to self-diagnose.

Attempting to Apply for DSA

After being diagnosed with dyspraxia and dyslexia in the third term of the third year of my doctorate, I was advised to apply for DSA (Disabled Students’ Allowance). In the light of recent news reporting that huge numbers of students miss out, I thought I’d share what got in the way of me applying, and what I’d suggest as a result.

Image of 2 feminine hands typing on a laptop keyboard.

What is Disabled Students’ Allowance?

Disabled Students Allowance enables students with a disability to access funding for support with adaptations or additional needs during their studies – for example, it might cover assistive technology or specialist tutoring. What you get depends on your needs, so it can vary a lot. I’ve heard of things ranging from mind-mapping software to adjustable-height desks to BSL interpreters to an additional allowance for printing, but it’s different for different people.

So did you apply straight away?

Honestly, I wish I had, but I didn’t. I was given mixed advice about when to apply. The university were changing the process so that third years would automatically progress to a fourth year (having previously been required to request this as an extension), but my student records still said there were only a few months left of my course. Some people said I should wait until my records were updated. This is because in the last 6 months of your course, you aren’t invited for a needs assessment and are given much more limited support. Others said I should apply anyway because the process can take up to 14 weeks.

I really needed a clear answer and someone to tell me what to do at that point. I was overwhelmed with coursework, my thesis, placements, finally getting diagnosed, and my mum being incredibly distressed due to her own ill health. My time management skills had disintegrated, I was so very tired all the time, and I was doing the bare minimum I needed to do to make it to the end of the year. The only thing I could muster up energy for was placement. It would have been really helpful if someone had said: this is how you apply, you can get help with the form here, this is what you’ll need.

Image of a man and woman at a desk. The woman has a notepad in front of her and a pen in her hand, and the man is helping her with her work.

It wasn’t until after the summer that it even occured to me that the Neurodiversity Support team at uni might be able to help – that’s how tired I was!

What got in the way of applying?

Partly it was down to fatigue and trying to pace myself through to the end of the year in a way that allowed me to still be fit for placement. I was 2 hours from campus and travelling in just to get a report printed and a form stamped felt like a huge effort!

A lot of it was a combination of the application form and how my uni processed my progression through the course. It’s quite a straightforward form, really – it asks things like your course dates and you condition, whether you have student finance and your personal details.

It was the course dates that stumped me the most. The first year of my course was advertised just as part of the doctorate, but the way the uni enrolled us was that the first year was a masters and then you’re enrolled on a doctorate in your second year. So I didn’t know whether the course start date on my uni records was the year I actually started at the uni, or whether my records would show my start date as my second year (the first year at doctoral level). Then there was the end date – officially just a few months away on my records, but in reality a year and a few months away. So was I now meant to still put the original end date, or a year later, even though my records still had the earlier date?

Image of an Asian man in a black suit with his head against a concrete wall.

The evidence was easy as I’d been so recently diagnosed – I know sometimes that can be tricky for people to obtain, though. You might need to pay for your GP to provide it if you don’t already have it.

The next hurdle was proving my identity and status as a UK citizen. I’d let my passport expire to save money. You can still apply, you just need alternative identification and an additional form. Unfortunately, when I read that it didn’t say where to get said additional form, that I could. Cue me sitting, feeling very stupid, thinking “Well where do I get that then?”

Turns out it was from the same place I got the original DSA application form. Which is embarrassing as I would like to think if I’d been struggling less, I’d have thought to look back to where I got the DSA form!

I won’t lie, by then I was just too exhausted from coping with the last three years to do the work to get the information I needed to fill in the form. I should have pushed myself to do it anyway, it wasn’t all that much effort really. But I didn’t.

Image of a white male student sitting at a table with his left hand in his black hair while he looks at his laptop, appearing frustrated.

What about later? Did you apply then?

I didn’t.

I did eventually go to Student Services and get my official course dates. I found the form I needed to get completed to confirm my identity, and I even found someone to vouch for my identity on said form. All I needed to do was print the report from my dyspraxia assessment and put them in the post.

So what stopped you sending in the application?

Well, a small part of this was down to my poor awareness of time – that form I’d had to find someone else to sign? It had to be submitted within 3 months. I kept thinking, I must remember to print my dyspraxia assessment report so that I can send my DSA application off. Invariably I’d remember when I didn’t have access to a printer and think, I’ll do it tomorrow. It felt like maybe a month or two had passed – but when I finally remembered and was in a place I could access both my report and a printer, it had been over 3 months.

Image from above of a person in a black hoody sitting in a brown chair in the centre of a large clockface, which is painted on the floor in a bronze colour with the numbers in black.

I should have set myself reminders. I should have made it a SMART goal. I didn’t. I’d lost my coping strategies along the course of my doctorate – both a result of struggling and a contribution to maintaining my struggles!

But the largest reason I didn’t apply was emotional. I felt too guilty to apply – why should I get extra help? Did I really deserve it? I’d made it this far, surely I should be able to cope? Surely if no-one had picked up on my dyspraxia it must be quite mild? Was I just making excuses? Did I have any right to apply for something aimed at disabled people? Did I think of myself as disabled – and if I wanted to, did I have a right to?

Do you regret not applying?

Definitely. Yes, I was exhausted, but I’m sure it would have been worth the extra effort. I think I’d be in much better position now, or at least be more confident that I’ve tried everything I can if I don’t manage to complete my course.

Now I’m waiting to hear if I’ll get a 6 month extension – if I do I will apply ASAP, even though what I can get will be much more limited than it would have been if I’d applied sooner.

What would you say to anyone applying or considering applying?

Image of a lightbulb outlined in black on a yellow post-it note and pinned to a cork noticeboard with a red pin.

Do it as soon as possible! The earliest I’m aware of that you can apply is when you’re applying for Student Finance, even if you don’t have a university place yet.

If you need additional things – like medical evidence, or forms signed – make getting those things a priority. Set reminders on your phone, put it on your to-do list or in your diary, whatever helps you get it done.

If you’re struggling with the form, contact Disability Support, Neurodiversity Support or Student Services at your university and ask them to help.

You can submit the form either by e-mail or by post.

You do deserve this support.

Update: My extension has been granted (hurrah) and I sent off my DSA application just under 2 weeks ago. I’ve had a letter confirming it’s been recieved and I should hear more soon!

Where can I find out more and apply?

You can visit https://www.gov.uk/disabled-students-allowances-dsas to find out more about DSA and apply.

The UCAS website is also useful: https://www.ucas.com/finance/additional-funding/disabled-students-allowances-dsas

Dyspraxia Foundation AGM and Conference 2019

Yesterday I went to the Dyspraxia Foundation’s AGM and conference in London. The sun was shining when I left the house and I was all set to have a great day – except for the pounding headache that painkillers had so far failed to shift.

I was really pleased with myself when I got to the venue, as I didn’t get lost once en route. Considering that last year I got so lost I ended up walking a full loop around the building, as well as visiting two other buildings in the meantime, I had anticipated needing more time to find the place! Instead I took a few minutes to gaze out over the Thames, watching the water glinting in the sunlight and a couple of kids playing amongst the water fountains, before heading upstairs.

Just like last year, I was impressed with the organisation of the conference:

  • Detailed instructions for getting to the venue – check
  • The information pack I’d requested being handed to me without me needing to ask – check
  • Being easily directed to the right place in the building – check
  • Clear signs on the rooms and to the toilets, etc – check
  • Plenty of refreshments available – check
  • Resources stand already set up to go – check
  • Wi-fi code displayed in multiple locations – check

So I helped myself to a glass of water, and settled myself in my seat. I spoke with a few people I already knew, and some I’d not previously met in person, and waited for the sessions to kick-off.

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AGM

I’m not going to lie – usually I avoid AGMs like the plague. They have a combination of ‘we’re giving an overview of the year so not too much detail’ and ‘we’re going to give you some really precise details’ that hurts my head a little.

But I enjoyed Sophie Kayani’s summary of the year and it’s good to remember that, although we will always want more, the Dyspraxia Foundation does a LOT with limited resources. The presentation of the awards was lovely and the awards were incredibly well-deserved. I was really pleased to see the helpline volunteers given the Mary Colley award, I thought that was a lovely recognition of their contribution and hard work.

A Last-Minute Step Up to the Plate

The first session was due to be a talk from Emma Lewell-Buck, MP, about dyspraxia and politics. Unfortunately she was not able to join us due to unforeseen circumstances requiring her attention in her constituency, so Sally Payne (OT and DF Trustee) stepped up to fill the space.

Sally spoke about challenging the assumptions people can make about dyspraxia. Two she spoke about which most irritate me are:

  • that it’s just clumsiness – it’s not
  • and that it’s on the autistic spectrum – it’s not. This misconception does not help either dyspraxic or autistic people, and I don’t think it does justice to the experiences of people who are both autistic and dyspraxic, either.

Sally went on to talk about the importance of collaboration. She highlighted, borrowing from Gill Dixon, that once you’ve met one person with dyspraxia, you’ve met one person with dyspraxia. Sally spoke about the importance of recognising and listening to that person (and their parents, where appropriate) regarding what they need and what helps them.

Sally also launched a survey the Dyspraxia Foundation are running, which looks at diagnosis of dyspraxia. If you have or suspect you have dyspraxia and are aged 18+, please take a few minutes to fill it out by following this link or by following the QR code on the left of this paragraph.

Living and Working with Dyspraxia

For the second and third sessions, the conference split into three strands, with a strand aimed at those (working) with children with dyspraxia, young people with dyspraxia and adults, respectively. I went to the workshops aimed at adults.

The first of the two adult sessions was on living and working with dyspraxia. I have to confess, this was so broad a title that I didn’t really know what to expect. It was interesting to hear the speaker’s experiences as a dyspraxic filmmaker shooting a documentary which followed a dyspraxic pinpall champion, and there was some discussion afterwards about challenges with getting ideas from your head onto paper and everyone being different. This included discussing the impact of tiredness and the time of day on our abilities.

For me, the pace of this conversation moved too quickly for me to process – especially with a headache and painkillers in my system – and I found it a bit hard to keep up. That said, I had the sense that the conversation could have continued for much longer that the time we had available, so hopefully that’s a good sign that others were keeping up better than me!

Lunch

I was so very ready for lunch by this point! And as a lovely bonus treat, we got to go out onto the balcony and enjoy lunch in the sunshine, looking over the Thames and being serenaded by music wafting up from the pavement below.

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I was not as talkative as I’d have liked to me as I was pretty tired by this point, but on the plus side I could take some more painkillers (my headache, it turned out, would finally start to subside mid-afternoon). I was really grateful to be able to switch off and not have to process too much information for a while, but I’m sorry to those I didn’t get to speak to as a result.

Dyspraxia in the Workplace

The second of the adult workshops was facilitated by Laurence Turner from GMB. He spoke about the Equalities Act 2010 and the rights disabled workers have, before leading a discussion about the barriers dyspraxic people face at work and some examples of adjustments different people have found helpful.

I really enjoyed this session, I thought there was a nice balance of content and discussion and that the session was well-paced. I liked that Laurence checked in that everyone who wanted to say something had been given the opportunity.

It also meant a lot to me that the background colour on Laurence’s slides was not white – between sensitivity to bright light and visual stress, looking at slides on a white background that morning had only made my headache worse so it was a great relief not to be looking at more of the same!

Again, I felt the discussion could have gone on much longer, but I suspect that would be true no matter how long the session had been. I’m hoping this is a theme that will be picked up again at the Adult Conference later this year, but we’ll see.

Dyspraxia and Depression

Mark Robinson delivered an outstanding final presentation for the day. He spoke eloquently and courageously about his own experiences of dyspraxia and mental health, neatly outlining the vicious spiral that can easily set in.

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I was really moved by Mark’s talk. His struggles came across clearly, and as far as I could tell he didn’t try to make it neater than it actually was. I sometimes feel there is so much discussion of strengths and perseverence that the real struggles can unintentionally get a bit swept under the carpet, but in that moment when Mark was speaking, I knew I was not alone. I knew that someone else understood how hard it is.

In that moment when Mark was speaking, I knew I was not alone.

Mark’s openness to speak about needing to choose to look after himself was inspiring and so, so very important. We talk about this idea that dyspraxia doesn’t stop you doing anything, it just makes some things harder. And I think that is mostly true. But sometimes – sometimes we need to honour how hard it is. We need to make a different plan. It doesn’t mean we don’t still get there, but it does mean being allowed to do things a different way and in our own time.

Reflections

Sophie Kayani ended the day with some reflections and thanks. What has stayed with me are themes around everyone being different, and also part of a community; and around the effort involved in keeping up and appearing neurotypical. These themes are both important to me personally, and I think it’s so important that they aren’t forgotten.

Thank you to everyone who helped make the conference happen. To those reading this who will be at the Adult Conference, I look forward to seeing you there.

What stayed with you from yesterday’s conference?

Dining Out and Dyspraxia

What kinds of things do you consider when planning to eat out at a restaurant, cafe or pub?

I always imagine most people think about what kind of food they want, whether they like the atmosphere, how much it will cost, where they want to go.

Like many people, I enjoy catching up with friends or family over a meal out. Quite a few of my friends have celebrated recent birthdays by getting a group of friends together for dinner. It’s nice to relax, let someone else take care of preparing the food, and catch up with whoever I’m meeting. I think about all the things I mentioned above, and a lot more (maybe you do, too). This means eating out can be exhausting.

Why would dining out be any more exhausting with dyspraxia than without?

To be blunt – dining out involves:

  • the gross motor skills to get to a table without tripping over
  • the spatial awareness to not bump into anyone or anything on the way to your table
  • the coordination and fine motor skills to chew your food and use your cutlery
  • a whole heap of sensory experiences, and
  • trying to deal with all these challenges whilst also being sociable and keeping up with the conversation.

Most people who have eaten out with me will have seen me spill my drink, drop my knife/fork on the floor, lose food over the edge of my plate, drop food in my lap, or fail entirely with cutting up my food.

They’ll have seen me not finish my meal because it’s gone cold long before I was halfway through eating.

Maybe they’ve seen me bump into someone or a table. Probably they’ve seen me struggle to get my chair under the table – not my most graceful look!

They’ve most likely seen me go bright red when I think they notice my clumsiness.

If I eat out with you, it probably means that I trust you quite a bit.

It can feel humiliating when you feel like someone is watching you fail to achieve tasks most children can tackle. I’ve long since gotten over worrying about what the restaurant staff strangers at other tables think, but if we’re eating together, you’re probably important enough to me that it hurts if I feel judged by you.

But you know I don’t judge you, right? I already know you’re clumsy, that’s ok!

True! But it still takes a lot of mental and physical effort to co-ordinate all the motor tasks involved in eating. At home or work, I’m pretty quiet when I eat and focus on my food – and I still drop things or make a mess. Now I need to have all that same focus, and also give you my attention. That’s usually effort that’s worth making, and I’m happy to do it – as I say, I enjoy catching up.

Well, okay. But you said there’s more – something about senses?

Yes. Anyone who has eaten out with me will have noticed I’m a fussy eater. I like fairly bland flavours most of the time, and there are lots of food textures that I’m hypersensitive to. Sensory processing difficulties are common in dyspraxia – one of the ways this affects me is that some food textures make me feel sick and others set my teeth on edge. Eating a combination of textures at once is especially difficult. This makes it trickier to find foods that I like.

But it’s not just texture.

I also struggle with separating out background sounds from the noise I actually want to focus on – so picking out your voice in a noisy restaurant from the sea of conversation, clinking cutlery and glassware, background music, footsteps and rustling clothes can be really difficult. I have to concentrate a lot. It gets harder when we’re in a bigger group.

If I stop concentrating, there’s just a huge swell of sound. The closest analogy I have is that it’s like being at sea in the middle of a storm, with the wind and waves crashing and thunder – and you’re trying to listen for a horn or a whistle but you’re not quite sure if you heard it or not.

You’ve mentioned concentrating a lot.

Well, eating out requires a lot of concentration! Add into that the fact that I process information more slowly in general, and there’s a lot going on. That doesn’t stop me having a good time – it just means I find it tiring, too.

Do you do anything to make it easier?

Sure, there’s plenty of things which help:

Choose the venue carefully

  • Do they leave a decent amount of space between tables?
  • How easy is their cutlery for me to use? I like heavier cutlery, but others might have different preferences.
  • Is there enough light to see easily if I lose track of who is speaking and need to check visually? But not such bright lighting that it’s uncomfortable?
  • Are there foods on the menu that I want to eat? I tend not to try new foods when out unless I have no choice, since if it triggers hypersensitivity it is really, really hard to keep eating!
  • Is there background music, and if so, how loud is it?

Choose what time I go

I prefer to eat out a little earlier so that it’s less busy and noisy.

Consider who is going

If I’m the one organising, I’ll tend to limit the number of people unless it’s impractical to do so. I find it easier to keep up when there are only 2-3 other people at the table.

If possible, I’ll usually try to go for a drink with someone I don’t know well, before arranging to go for a meal. Although some of the difficulties overlap, motor-skills wise a drink (for me) is less involved and therfore less pressured!

Choosing a table

I’ll usually avoid the middle of the room if possible; being by a wall or window can help reduce the sense of being in the middle of an ocean of sound.

If there are tables of different heights (more common in coffee shops, cafes and pubs), I’ll usually avoid the high ones requiring clambering up on a high stool. Particularly when I’m tired, I’ll avoid coffee tables, too, as leaning down to the table increases the risk of spillages.

Is there anything I can do to help?

Thanks for asking! I’m pretty used to managing, so most of the time you don’t need to think about it too much. I don’t tend to make a fuss about it when I’m clumsy or uncoordinated, it’s normal in my life so doesn’t need comment. It’s easier for me if you don’t make a big deal out of it, either.

If I’m the one organising, I’m probably going to stick with places I know and find most comfortable – hopefully you can understand why. If you’re okay with that, great! But if you’re not, please tell me. We can find a compromise.

Please also keep inviting me out! Even to new places.

It’s good for me, and like I say – if I’m choosing to eat out with you, it’s because I want to. I’ve decided spending that time with you is worth the effort.

Is it the same for all people with dyspraxia?

Everyone with dyspraxia will be affected in different ways and have found different coping strategies. There may be some (even sometimes a lot of) overlap, and there will also be differences.

What kinds of things do you think about when deciding to eat out? Are there other things which are important to you or which you find helpful?

The Clumsiness Connection

For a long time, being clumsy was one of my least favourite things about myself. I’d try to hide it (which made it worse). I’d burn with embarrassment whenever I dropped something, tripped, or bumped into something, and pray that no-one commented.

And, yes, there is still that moment of feeling hot and red when someone sees me fall over, or spill my drink, or knock something over. But mostly that’s all it is: a moment, then forgotten.

Someone asked me recently if I’m really as okay with being clumsy as I seem. Surely I would prefer not to be clumsy, if I had the choice?

And well, maybe. It would be easier, sure. I’d spend less on crockery and first aid supplies. I’d be more comfortable doing exercise with people I know just well enough to want to avoid looking useless in front of them, but not (yet) well enough to know they won’t judge me for being uncoordinated.

But – and here’s the thing – I’d have lost a lot if I wasn’t clumsy.

The stories of my clumsiness that I tend to tell? Mostly they’re moments of human connection.

There’s laughing with a friend over the time I tripped over a traffic cone, or with another friend about that time I fell down the hill and was laughing so much I couldn’t get up again.

Or the time my friend insisted I go see a first-aider after I fell over at school (dropping the pizza I’d made in class and doing a good job of shredding my knees in the process). Only the first-aider wasn’t allowed to give me anti-sceptic wipes/cream or a plaster in case I was allergic – so we just sat in reception, giggling over teenage-girl things, dabbing at my knees with wet paper towels until they stopped bleeding. When it was my friend’s turn to make pizza, she tried to give half of it to me, since I hadn’t been able to take mine home.

There’s that time I tumbled sideways off the gym horse and my PE teacher looked so frightened and concerned that I insisted I was fine to go again, more to reassure her than because I wanted to. (And, even though I was shaking and thought I was sure to go flying again, I managed it, so the perseverence paid off!).

I could tell you how my supervisor reassured me after I dropped his plant, neatly drawing attention to the plant rather than my clumsiness. Or about my friend and colleague who, when I told her about my dyspraxia, worried she shouldn’t laugh when I’m clumsy – until I pointed out that it would be kind of lonely if I’m the only one laughing.

Then there are the strangers who I sort of wish wouldn’t come running up when I fall over, but who I’m also a bit glad of – because it’s nice that a total stranger cares if I’m okay after I’ve landed on my butt at the bottom of the stairs at the tube station, or tripped over thin air walking down the street.

There’s knowing that my brother knows me well enough to tell me where not to tread or which paths to avoid when it’s wet out, because he knows what’s likely to cause me to slip over, even when most people would be fine.

And of course, there’s the sense of community with all the other people who know exactly what it’s like to be so clumsy that everyone knows you’re clumsy, even the people you can’t remember doing anything clumsy in front of. There are the moments of realising someone else is like you, or that you’ve been able to reassure someone that they aren’t alone, just by being you. Of sharing your latest ‘dyspraxident’ with people you know won’t judge you. Of laughing at yourself and knowing – it’s fine.

So, yes, it would be nice not to be so clumsy.

But it’s also pretty nice knowing that I’m held in mind by the people who matter to me. It’s nice to know that there are caring people in the world, who care even though they don’t know you. Its nice to have stories to laugh over – and if I happen to provide those stories by accident? Well, it beats having to make a conscious effort to be funny, because I am absolutely useless at telling jokes.

If I wasn’t clumsy, I wouldn’t have these stories to tell. These memories of laughter, care and empathy. Of persevering and of learning to trust. These are stories that I treasure – why would I get rid of the trait that helped create those moments?

What are the best reactions you’ve had to moments of clumsiness? How do you like people to respond?

My Dyspraxic Childhood: Early Years

Growing up, we didn’t know I had dyspraxia. Learning about dyspraxia prompted me to look back at my whole life in a different light. Over the next few posts, I’ll share what challenges I faced growing up and how that affected me. Where I can, I’ll suggest what might have helped. I’ll end by sharing my thoughts on going undiagnosed for so long.

It’s important to remember that this is just my experience of dyspraxia – I hope you’ll find it useful, but please also remember that other people will have different experiences.

In this post, I’ll focus on the early years – before I started school.

Of course, I don’t have as many memories of this age, so I’ll be drawing on things my parents have told me, too.

As a Newborn

It’s really hard to reliably identify dyspraxia in very young children, but being born prematurely or underweight have been associated with dyspraxia. For me, I was quite underweight when I was born and had to spend some time in intensive care.

As a Toddler

Most of us start hitting motor skills milestones as we move towards toddlerhood – sitting, crawling, walking etc. Missing these milestones can sometimes be an early indicator of dyspraxia.

As for me? Well, my mum tells me she was worried I wasn’t learning to walk when she thought I should and that I still needed to use sippy cups later than she expected. My dad was more chilled out, by the sounds of things, and I seemed to get there eventually.

So I may have been late walking. But that wasn’t the only sign.

I’m told I was clumsy – dropping things, bumping into things. I remember dropping a toy piano once; it took both hands to hold and I remember the crash of noise as it hit the ground and all the different notes clanked at once. But mostly I remember being confused. I didn’t understand how I’d dropped the toy.

My clumsiness wasn’t limited to dropping toys. I remained a messy eater, so I’m told, and I can well believe it since this is something I still struggle with! My parents tried getting me different cutlery – mostly, prettier cutlery – to encourage me to use a knife and fork rather than my fingers, but it was a skill I wouldn’t master for years.

And then there was play, especially at nursery or in the park.

I remember hating the ‘swooping’ feeling in my tummy going down the slide – but not half so much as I hated trying to climb down backwards, searching out the next step with my foot! It always seemed to be much further away than I thought it should be. As an adult, I can name the feeling as anxiety. At the time, I just knew I didn’t like it.

So, I was clumsy and unco-ordinated. There were other signs, too.

Signs I now consider part of the sensory processing difficulties that can come with dyspraxia. I didn’t like all the loud noises and bright colours at nursery. I was a really fussy eater – I’m still a fussy eater, but mostly because of food textures rather than taste.

There were a host of textures I disliked – including grass under my feet, sand (especially wet sand) and certain fabrics. If I could avoid them, I would!

Should anyone have picked up on the possibility of dyspraxia?

Given the above, you may be thinking – shouldn’t someone have noticed something was different? But I don’t think anyone would have thought anything of it, certainly not before I started school. Even now, when awareness of dyspraxia has improved, I don’t think anyone would have suspected. Children all grow and develop differently and at different speeds – it’s difficult to know what’s just part of that normal variation. Plus lots of kids are clumsy and unco-ordinated at that age, so I daresay it didn’t stand out as much.

As I started school, however, the differences between me and my classmates were perhaps a bit more obvious! Next up: My Dyspraxia in Primary School.

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