My Personal Experiences of Dyspraxia: Management strategies and resources for all
I am sitting here wondering how many of the readers will know what dyspraxia (increasingly referred to as Developmental Co-ordination Disorder - DCD) actually is. Although there is a greater understanding that it is associated with clumsiness, difficulty riding a bike or driving, messy handwriting, difficulty telling left from right, the more complex aspects of dyspraxia, the effects of it on the person with it, and the overlapping features it shares with dyslexia, are less widely understood. There are lots of definitions out there but I particularly like the description by David Grant at http://adshe.org.uk/dyspraxia which acknowledges many of the things I talk about in this article, such as the impact on life skills, the influences of environment, reference to social and emotional elements and individuality. Charities such as Dyspraxia Foundation, Dyspraxia Action and organisations like Dyspraxia UK offer definitions on their websites. However, when I am asked about dyspraxia I want to offer a wellrehearsed, easy-to-understand, short answer that illustrates the many aspects to it but I haven’t really found one, and certainly not one that I could remember to recite to others.
I find it difficult to explain dyspraxia because of its all-encompassing nature, and the way it affects so many aspects of life – often in an intrusive, domineering way.
An example of this can be found in a blog called Shoes or no Shoes documenting my experience of preparing to present at a conference – foremost in my mind was not presenting to an international audience or even the content of my presentation but rather how ‘simple’ considerations like footwear and travel dominated my thoughts before I set out to the conference. Travelling to it used up a great deal of mental energy, simply climbing the stairs in an unfamiliar train station, maintaining an internal monologue and (literally) a step-by-step risk assessment – how I positioned my foot on each step, making sure I kept hold of the handrail and my bag without losing balance, trying not to rush and bump into someone, or move too slowly and hold people up. In essence I have used this example to explain the challenges executive functioning - the combination of mental and physical processes that enable people to perform a task - presents to many people who have dyspraxia.
When helping others to describe how dyspraxia impacts our lives I find the phrase ‘spaghetti head’ often resonates. As a person who has dyspraxia there is far more energy and time that needs to go into simple logistics in order to avoid calamity, things that a nondyspraxic / neurotypical person would do without thinking.
While I want to avoid this article being thought of as a life story or journey, or a list of the negative things associated with dyspraxia, it may be valuable for those not familiar with dyspraxia to see its effects in the context of everyday life. I would like to make this an awareness-raising, positive piece that uses my personal experiences offering management strategies and signpost resources for all, not just the person who has dyspraxia. It is delivered from my perspective:
- as a person who has dyspraxia;
- as a person who has a child who has dyspraxia;
- as a practitioner supporting people who have dyspraxia;
- as a trainer;
- as someone who raises awareness via blogging and vodcasts.
Strategies that help me
This article will include examples of strategies I employ that show how I have found I need to work as a person who has dyspraxia. For example I’m dictating this to software that types for me (called Dragon that is available as a free app called Dragon Dictation). I captured and organised my ideas on mind mapping software and with a click of a button transferred it to a Word document, added colour to aid differentiation between sections and ideas and then jumped around sections, adding words gradually as they occurred.
For some, this might seem a non-linear, and seemingly nonstructured approach but experience of my own dyspraxia, and learning how others who have dyspraxia have responded to how it affects them, underlines the importance of developing selfawareness of needs, preferences and learning preferences, and being open to different approaches to achieve our goals. This individual approach is demonstrated in the vodcasts I do with Phoebe my daughter who also has dyspraxia. Although there are similarities in our ‘dyspraxic profile’ that identify areas we may need support in, and although we share a number of genetic as well as environmental influences, we often employ different strategies to reach our goals successfully. Sharing our experiences is our way of highlighting the importance of flexibility and a nonprescriptive approach in order to meet the needs of the person.
This informs my approach in working with others, and through this I know it can facilitate self-awareness, self-acceptance, self-confidence, and independence, all of which are increasingly recognised by researchers as secondary issues for people who have dyspraxia. For educators, employers and family members it is important to listen to the needs of the person, and to work in partnership with them to address the issues they find challenging, even though it may be seem frustrating or illogical to those in the support network. The goal should always be to enable the ‘neurodiverse’ person to function more effectively and efficiently in whatever way that best enables them to do so.
For educators, family members, and the person who has dyspraxia, it is important to remember that they are capable of achieving whatever they want. However, in order to achieve this, there are some things to take into consideration:
- It may take longer (I eventually passed my driving test after nine attempts over six years)
- It might involve technology (my phone and iPad mini are a substitute brain)
- Could apply unusual triggers to secure memory / recall (coding onto the body, silly rhymes, visual cues, songs to help step-by-step process)
- Having a template for each process that you do (an internal monologue or coding steps on to fingers)
- Need for the skill to be repeated often (useful to develop muscle memory or schema - when you can begin to do things with some degree of automaticity)
- Require establishing of a routine (Phoebe has a very successful (and rigid) morning routine)
- Finding a different way of doing something (I got my degree through the Open University recounted in this OU film)
- Relearning a skill if it has not been used for a while
- Have to be multisensory (Seeing an image, as well as saying things out loud, so you are hearing the information/ instructions, as well as doing or touching something)
How is this relevant in higher education?
Returning to the lack of awareness and understanding of dyspraxia, this seems – to me, at least – a particular feature of student support in higher education, and I believe there are three main and interrelated reasons or this:
- Most articles on dyspraxia are child-focused
- Many articles mention the headlines of driving, hand-writing and clumsiness and that it used to be called clumsy-child syndrome but make little reference to the activities of daily living, and to me this is the crux of dyspraxia
- Lack of research, especially into dyspraxia in adulthood
Point 1: Most articles on dyspraxia are childfocused
Any Google search perpetuates the idea that you grow out of dyspraxia or everyone is identified as a child.
There is an unspoken myth that if you have dyspraxia ‘badly enough’ then dyspraxia will be identified when a child. This can leave those who are identified as adults believing that they must have a milder form of dyspraxia and therefore should be able to cope. In my experience this can leave adults unwilling to divulge the challenges they are experiencing, less likely to disclose to others or seek support, believing they should be able to manage.
The idea that it is a childhood condition is reinforced by the three main issues listed above as well as that most publicity has a child’s face on it and websites and support groups have lots of info for primary school, less for those of secondary school age, and reduces the older you get.
Point 2: Limited range of understanding and guidance
Elisabeth Hill from Goldsmiths University, and Charlotte Miles, Liverpool Hope University are both conducting research on dyspraxia and a recent conversation on Twitter regarding lack of guidance for parents to support their children who are identified prompted this reply from me:
Whilst this research and tweet is welcomed, the lack of guidance and access to support is even more marked for those identified as adults. I can argue this from my own experience as a practitioner, those I share with, people I follow on social media and those adults we support at university and in the workplace via my company Diverse Learners. I was 33 when I was identified, had just started working as a dyslexia tutor yet only recognised the implications of what dyspraxia was when I was reading a report from an educational psychologist that could have been my life.
This lack of awareness, and focus on children, means that specialists /practitioners who often find themselves supporting adults at higher education and in the workplace are completely unaware of all the areas that are affected by dyspraxia. Most specialists complete a post graduate qualification in supporting the ‘dyslexic learner’ and can leave specialist feeling exposed or under confident in how to support adults with dyspraxia. Thus, practitioners may not have the knowledge or confidence and adults who have dyspraxia do not receive the specific support they require leaving them frustrated and feeling alone.
- My tutor kept talking about dyslexia but I’m not dyslexic - Laura
- I had to keep reminding them I didn’t have an issue with reading because I was not dyslexic - Amy
- Oh I don’t know what to do as I don’t know anything about Dyspraxia Chloe recounted a response from a practitioner
- summed up well by Lauren’s blog for support workers https://whyiwonttalk.wordpress.com/2015/03/11/advice-forsupport-workers/
It is not only practitioners who are underprepared but there is a lack of dyspraxia awareness by the adults I support who are often surprised when they see our vodcasts (video blog) on eating, cooking, and difficulty getting out on time. The people we support are also relieved when I highlight their associated anxiety about travel, getting lost and new social situations to having dyspraxia. Most people, whether neurotypical or neurodiverse, experience some anxiety regarding new situations. The severity is heightened for people who have a neurodiverse profile who experience feelings of being overwhelmed. What to expect of ‘the unknown’, can lead to catastrophising or having numerous back-up plans in case things go wrong, all of which require a lot of time and energy. The lack of executive functioning mentioned earlier can also induce anxiety and happens/extends to an environment that is familiar but you are unclear as to what is required of one. How this can affect someone is well demonstrated by this BBC video http://www.bbc.co.uk/diversity/disability/neurodiversityatthebbc demonstrating life as a neurodiverse person as video game complete with energy levels depleting and bonuses when people offer help.
There are several demonstrations of simple tactics that others can employ to lessen these feelings of being overwhelmed and I have listed some below:
- clear instructions possibly with a demonstration of what is wanted
- provide a reference document that support instructions - bullet point list, flow diagram, colour-coded list, map, (remember to ask the person how they prefer the information)
- give one or two tasks at a time - too much information at once makes demands that our working memory often cannot meet
- offer to repeat information – we might be too self-conscious to ask but welcome someone else suggesting it
- offering to physically take us places or showing us where to find things greatly helps reduce anxiety and stress levels. Be prepared to do this more than once
Some of the life experiences such as being ridiculed for lack of automaticity in tasks, tripping up, spilling things or being forgetful as well as behaviour of others encountered due to lack of awareness – the tuts and sighs - is acknowledged by Dyspraxia UK and Dyscovery Centre as a much overlooked / underestimate area the impact on self esteem.
Many adults are affected and a Facebook message from a 78 year old man said he felt so emotional when he watched our eating vodcast, he was going to show it to his family before dinner on Christmas day so they would understand why he ate so messily and not make fun of him. As well as doing vodcasts I freely share Kerry Calamities on my Facebook page to show others they are not the only ones these incidents happen to in the hope of boosting self-esteem. I encourage others to share similar incidents.
What you can do for self-esteem issues strategies
- Avoid the exasperated sighs, the tuts at how long it is taking us to do something, or if we’ve just spilled our dinner down our front – we can hear them you know and it is not helpful - you are just making it worse and damaging self-esteem and selfconfidence.
- Stop using the statement ‘if you tried/ concentrated harder / focused more…‘ We are trying harder than you can imagine so my top tip is praise the effort not the outcome.
Some simple solutions that can be incorporated into everyday life without effort
- reinforce success by acknowledging improvement, contributions and ideas
- say ‘take your time’ as it can make a HUGE difference – we work better or we’ll find that thing in our bag we’ve been searching frantically for
- give prior warning – in 5 minutes we will… time is nearly up you might want to think…
- strategies reminders – ask ‘do you need time to mind map that’ or ‘ send a voice file if easier’ or use ‘I can wait whilst you put that date in your phone/diary/calendar’
- build in time to let us practice skills/tasks – adopt a multisensory approach (say, see, hear, do) model, scaffold the task and repeat
I used the simple solutions listed above when I worked at a university. Students who had dyspraxia were often referred to me to have specialist support sessions supposing that as I had dyspraxia too I would be better placed to support. Whilst I understand why this happens, organisations must heed that this approach limits expertise as the knowledge becomes held within one person and leaves a skills gap when the person leaves the organisation. Indeed I did develop expertise and also embarked on and led research projects in supporting health and social care students who had specific learning difficulties/differences. The outcome was that I identified a void in information specifically about, and designed for, adults who had dyspraxia.
Thus, in late 2012 I decided that if I wanted more awareness of dyspraxia it was up to me to share my experiences and knowledge in the hope of reassuring others and offering advice to all offer some tips for everyone – not just the person who has dyspraxia but friends, educators and family too. Firstly, through my Facebook page then doing vodcasts via YouTube and finally via Twitter. It has been successful and I’ve had pieces in various newspapers, radio interviews, and featured in articles like this blog from BBCOuch and an invitation to parliament from Emma Lewellyn Buck (MP) and the Dyspraxia Foundation to thank me for my activities and celebrate Dyspraxia Awareness week 2014.
Raising awareness and getting feedback has boosted my selfconfidence and self-esteem but change will happen faster with research to provide underpinning evidence which brings me onto point 3 the lack of research.
Point 3: Lack of research
There is little research about dyspraxia compared with other neurodiverse conditions categorised specific learning differences/ difficulties such as dyslexia, attention deficit hyperactive disorder, and autism. There is anecdotal information that is widely acknowledged within the field such as increased likelihood of obesity, less engagement in sporting activity, higher levels of unemployment and links to mental health issues, though little data to support it and even less qualitative (personal experience) evidence regarding adults and dyspraxia. I recognise the role that research has in changing practices, and as I want changes in attitudes and awareness to happen more speedily. Therefore, I complete and disseminate questionnaires as well as voluntarily participating in a number of research projects focusing on dyspraxia in adulthood - most recently Goldsmiths University of London and Lincoln Psychology Lab. I do this not only because as a researcher I know how hard it is to get participants, but also to enable more awareness to be raised through the publication of the research. If you are an adult who has dyspraxia I encourage you to do the same.
And so to culminate in the last and most important bit of awareness raising I leave you with an insight of what it is like for adults who have dyspraxia - ask yourself
How well do I operate / function when I’m tired?
That way you may understand better why an 18 year old changes into pyjamas as soon as they come home exhausted mentally and physically from navigating school and why students cry, paralysed by tasks they don’t know where to start, so do nothing. Finally, why writing this article has sparked tears and an almighty tantrum.
Tiredness and fatigue are overwhelming for many adults who have dyspraxia due to the effort it takes in planning, prioritising, processing and performing everyday tasks whilst trying not to get distracted. Please consider this, remembering how you feel when tired before you make your next tutting noise.
Incorporating some of the simple solutions in this article will be appreciated. By listening, reassuring, reminding and giving more time you can make a big difference. All of those things were freely given to me by the editors of this AHEAD publication enabling me to find success – at my pace and in my way.
Elisabeth Hill, Goldsmiths College, University of London http://www.sciencedirect.com/science/article/pii/S0891422215000505 Twitter @ElisabethLHill 55% of parents dissatisfied with process leading to child’s #DCD diagnosis http://bit.ly/1LKzLpC @NICEcomms @DYSPRAXIAFDTN @DCDLiverpool
Dr Charlotte Miles Liverpool Hope University https://calm201.wordpress.com/why-it-matters/
Lincoln psychology lab
Dyspraxia, exercise, sport and team games (vodcast)