IN CONVERSATION WITH GILL DIXON
Hi Gill thanks for agreeing to talk to us. Perhaps the best place to start is the ‘easiest’ question of them all. What is your background and what is your interest in dyspraxia?
My background professionally is in nursing and then I retrained in teaching. Following the recognition of my eldest sons difficulties (dyspraxia, dyslexia, ASD) I went to university at age 40 and studied dyspraxia for an Hons degree I then continued and obtained an MA in disability studies from the University of Sheffield and added a PGCE onto that to formalise my teaching experience. I have written three published books relating to the condition and have spoken at seminars/workshops/conferences around the country, delivered webinars and raised awareness at every opportunity. I have many published articles and feed into any groups and organisations e awareness and information. I have spoken on radio and TV. My youngest son was diagnosed with a mild form of the condition at age 17 and I am sure my husband would attract a diagnosis if he wanted one! The professionals who fed into my sons therapies took me a lot more seriously when I had a string of letters after my name!(sad but true).I believe that If I was sliced in half that I would have dyspraxia written right through me as I have lived and breathed it for so long. I describe myself as ‘dyspraxic by proxy’ which might annoy some people but honestly I am he only non dyspraxic in my family and so I live think, plan and think to relate to those dyspraxic others who I love more that life itself. That drives me in my desire to change the world. I desperately want to see a world that understands, supports, and accepts people with dyspraxia as the remarkable people that they are. It has been my life’s work and it does hurt when people criticize because I am not dyspraxic and so can’t really understand. I can and I do.
People’s definition of dyspraxia seems to vary due to lack of general awareness and a few myths and stereotypes. What’s your own personal take of what it is?
Dyspraxia which is sometimes called DCD (Developmental co ordination disorder) is a subtle and complex condition which affects every part of a person’s living and learning. It affects co ordination, thought, processing of thought and speech and language, perception (ie the sense one makes of what one sees) and organisation, social skills and confidence. Whilst there are common features (such as handwriting difficulties) each individual has a different profile so when you have met one dyspraxic, you have met ONE dyspraxic. It often co exists with other difficulties such as dyslexia, ADHD. I would say that all the things that most people seem to just learn, they kind of absorb it and replicate it, a person with dyspraxia has to learn and practice in order to achieve some success. It ca be exhausting and exasperating. It is a very real difficulty/disability.
What are the biggest misconceptions relating to dyspraxia?
It is the same or similar to dyslexia. They are very different conditions and respond to very different interventions. It is simply ‘clumsiness’. People ‘grow out of it’.
Why are so few people aware of it. Surely if it is a life-long condition and affects people daily then more people should know about it?
I have a paper which was published in 1908 so it has been around a long time. It was the referred to as ‘Clumsy Child Syndrome’ and has had various descriptors since then. However there has only been a dedicated charity for 30 years( a very short time historically) and we are something like 100 years behind dyslexia in terms of research and understanding. The Dyspraxia Foundation is really short of resources and without funds is limited in what it can do. More money would allow the Charity to employ more people and gain kudos and initiate meaningful research. It really struggles for funding and gets no government assistance. I have to say though that when I started on my journey with dyspraxia in 1993, there
weren’t any books dedicated to the condition (some chapters in other works). Now there are hundreds of books and papers so the word is spreading and characters on TV will really help to spread the word. Ackley Bridge recently introduced one, Casualty another and there is one planned for a daytime TV show in the spring. Famous people with the condition are beginning to speak out and I believe there are some really positive moves forward. It might be frustratingly slow but the moves are in the right direction and we WILL get there. Because it’s an invisible disability and it’ s not life threatening it seems to be hard to feed into the public consciousness even though It is one of the most common developmental disorders around. It is easy to mistake certain behaviours for naughtiness/laziness rather than lack of skill/ability/understanding.
Who/what profession is responsible for diagnosing dyspraxia?
It should always be a medical diagnosis in childhood (to eliminate other conditions which can present with similar features). Ideally a paediatrician, and OT will be involved and a Speech and language therapist would make an ideal a multi disciplinary team. I know that this rarely happens but a GP in the first instance. There is some great info for GPs here http://www.movementmattersuk.org/content/documents/Leaflet%20for%20GP%20MM2012b.pdf. In adults a psychologist, OT or psychiatrist/neurologist may diagnose. It is though a real lottery. In my own area no diagnostic pathway exists! A current issue that I am engrossed in.
What would your advice be to an adult who suspects he/she has it. Even in adulthood is beneficial to have a diagnosis?
There is a checklist for dyspraxia/DCD in adult hood that can be found here http://psychology.research.southwales.ac.uk/research/developmental-psychology/amanda-kirby/
Visit a GP in the first instance. If you are at College or University seek a diagnosis through the institution or you may be able to get a work based assessment. For a list of private occupational therapists see https://www.rcotss-ip.org.uk/
The Dyspraxia Foundation can offer advice re funding and produce an excellent information sheet on this vey subject.
Most, but not all, adults tell us that a diagnosis had a positive impact on their lives and personal self-esteem.
You are involved with the Dyspraxia Foundation, could you tell us a bit about the work you do for them and the work the charity has achieved so far considering it is their 30th anniversary this year.
I came across the DF via its helpline some 25 years ago. I was struggling to be believed re my son and at a very low ebb. It was a desperate time but the helpline real saved me and I left the conversation feeling utterly vindicated. It gave me the strength and motivation I needed. Sadly this facility now runs on reduced hours due to lack funding. The Charity runs with a handful of paid staff on a very tight budget and depends entirely on voluntary contributions and memberships fees to survive. The fact that it has survived so long is a testament to the hard work and dedication of its few paid staff and army of volunteers who give their time freely and with passion. The DF has groups throughout the country, has an excellent website (with tons of information which is free to download) and conducts research and feeds into research y others . It organises and runs excellent conferences and keeps admission costs to a minimum. The Youth group has been extremely important to its members. The DF is working with government to try and affect policy change re employment. It really has achieved a massive amount considering the size of the Charity and the money available to it. These a jus a very few examples of its work and achievements.
It is impossible to write about 25 years of voluntary work, but here a few examples of my work… I have written books, talked at conferences and seminars/workshops. I write many of the information sheets (there are so many free to download), I chair the Education panel, have been a trustee and Vice Chair (regular meetings in London and I travel from rural East Yorkshire so those are VERY long days). I help to answer the many queries the charity receives, plan fundraising events, I lead a team who fed into some very important educational training with the DfE and Dyslexia Association (that was a two year project). I have assisted in the admin’ of our three Facebook groups. I write blogs and create infographics to raise awareness (some of which get shouted down by adults when I am simply trying to raise awareness and understanding). I have offered training throughout the country and have assisted in the scripts used for TV programmes when a dyspraxic character is introduced. I have run youth groups and answer lots of messages sent to me personally. I have represented parents at meetings, written hundreds for letters, and use every single opportunity that I can to raise awareness. This has all been on a voluntary basis. I wrote Dyspraxia the Foundations and published it as an e book to make it affordable. All proceeds to the DF. The DF has achieved a great deal with few staff and resources and the team really do work tirelessly. If only our 40,000 + Facebook supporters would become members, we could then finance some really meaningful work/research. As it is, the Charity really does well in very difficult times and I am privileged to be its first appointed Ambassador The dyspraxia world would be a great deal poorer if the charity did not exist. It is seen as the ‘go to’ organisation for advice and information.
How is dyspraxia currently viewed in scientific/medical/academic circles and what is the research telling us?
Dyspraxia is more frequently referred to as DCD. The DF publishes the only professional journal dedicated to research . Each issue includes: peer reviewed articles; references to recently published research and a list of professional and corporate members. Movement matters is the umbrella organisation for coordination disorders and the DF is part of that group. They have run conferences internationally and the last one was this year in Leeds. Research topics are very varied, focusing on many aspects of the condition and of course people always ask about the cause which remains a matter for discussion. If you were to ask me personally if there is a predisposition to the condition I would suggest that there is but we don’t have the evidence to back that up. It would appear to be an immaturity of neurone development in the brain rather than to brain damage. People with dyspraxia have no clinical neurological abnormality to explain their condition.
There seems to be a concern amongst a number of adult dyspraxics that there seems to be a strong focus on researching children with dyspraxia and supporting their parents. What is your view and what can the experiences of adult dyspraxics teach us about the condition.
I hear that criticism a great deal but the DF really do take the adult population very seriously. There are three members of the board who are diagnosed with the condition and one of those is the adult rep. That’s unusual in charities and the DF believes that the lived experience is essential. There is a training day this month re adult diagnosis.
It publishes articles for adults, there is a Facebook group for adults, books for and by adults. Last year the conference was dedicated to adults and this year we looked at matters relating to anxiety, employment, and there was an inspirational talk by our adult rep. The website has a section devoted to adults http://dyspraxiafoundation.org.uk/dyspraxia-adults/ The Charity fed into changes on the driving test criteria and works with the Westminster Achievability Group focusing on the difficulties adults experience in the work place. It recently published a book for employers. Of course the Charity would love to do a great deal more but everything requires funding. It hopes to appoint a fundraiser to try and address that as we need someone dedicated to that area. With so few staff there is only so much that can be done and believe me they are a dedicated team who work over and above what their job descriptions require of them. There are other people, like me, who devote endless hours to the Charity in their own time for no financial reward, amidst many other commitments and pressures often to the detriment to their own family lives. The Charity worked closely with the much lamented Mary Colley who formed DANDA (what a fantastic achievement). I loved Mary and all she achieved and miss her dynamism and passion. The board really does listen to what adults have to say and view them as an extremely important component of future projects and drives. It may simply be that people like me who produce materials have their own interest and experience rooted in childhood studies and that is reflected in their work. However three board members have the condition and the remainder, either live with, work with, love or battle for family members with the condition. I have three adults in my own family with the condition and care very much about what happens to and for them.
Dyspraxia and Developmental Co-ordination disorder – are they the same thing? What’s the difference?
There is a consensus document that can be found here and explains much of this.
http://www.movementmattersuk.org/dcd-dyspraxia-adhd-spld/uk-dcd-consensus.aspx The UK guidelines can be found here http://www.movementmattersuk.org/content/documents/Revised%20EACD%20UK%20Recommendations%20Pocket%20Guidelines.pdf
Many years ago the term dyspraxia was used to explain difficulties in the planning and organisation of movement, full stop. It was often used in relation to injury or acquired brain damage. It was a purely medical term.
The term DCD is an umbrella term for co ordination difficulties but when the DF were asked to come on board with that change of terminology it really listened to what adults said. They told us that most of the difficulties they experienced in adult hood were due to issues related to things other than co ordination (perception, organisation, social issues, processing etc) and the DF stood fast and added to the definition in order to maintain dyspraxia as a unique condition, one of the aspects of which relate to coordination difficulties. This required sensitive negotiation but we have maintained our stance and continue to do so. So the Dyspraxia Foundation adds to the Movement Matters description, recognising the many non-motor difficulties that may also be experienced by people with the condition and which can have a significant impact on daily life activities. These include memory, perception and processing as well as additional problems with planning, organising and carrying out movements in the right order in everyday situations. Although dyspraxia may occur in isolation, it frequently coexists with other conditions such as Attention Deficit Hyperactive Disorder (ADHD), dyslexia, language disorders and social, emotional and behavioural impairments. So they a not exactly the same thing, and some people may have DCD but no dyspraxia if that makes sense. Dyspraxia is DCD and then some…….
We often read about the term neuro-divergence. There’s an idea that a number of dyspraxics also have dyslexia, ADHD and ASD and that traits of these often overlap on a ven diagram. Could you explain this for us. Dyspraxia is its own spectrum in the same way autism has its own spectrum? Is that right?
There is a growing recognition of the fact that people with dyspraxia/DCD may live with a number of co existing conditions. I believe it is very often the case. Often a diagnosis relates to the predominant difficulties at the time of diagnosis and these can of course change over time. We don’t specifically talk about a spectrum with dyspraxia and it is indeed a very different condition to ASD. There are certainly degrees but each individual will present with a different profile so the condition can be seen as individual rather than as a spectrum really. People with ASD may have dyspraxia as well of course.
I personally like the neuro diversity/divergence stance (although I think it is grossly misunderstood) and would prefer that as a population we recognised that we are all diverse and we all have strengths and weaknesses and we are all of equal value. Sadly assessments and procedures tends to be negative in nature and impact rather than focusing on strengths and the education system in its present form is very much skewed to those who learn in a conventional manner. That does not suit everybody and remains rather medical model in nature. The DF was part of an excellent training initiative which was put into all schools that participated (it was open to every school, free of charge) and we looked at reaching for neurodiversity rather than at different conditions. This involved post 16 training too and lots of useful resources were published. These can be downloaded free of charge here https://dyspraxiafoundation.org.uk/spld-project-2016-17/
It was an exciting project as it saw really meaningful collaboration between different charities and organisation which is a huge step forward. It also saw all of us focusing on neurodiversity rather than individual conditions.
What would be your advice be to a parent with a dyspraxic child in school who may not be familiar with the condition?
Certainly to contact the DF for advice and information. To be pro active/ to learn as much as they. See my book https://www.amazon.co.uk/DYSPRAXIA-Foundations-Gill-Dixon-ebook/dp/B00TA4ZYUS/ref=sr_1_1?ie=UTF8&qid=1535285094&sr=8-1&keywords=dyspraxia+the+Foundations
It’s as cheap as chips and really is full of useful info, so a great starting point.
Be honest with the child. There is an excellent information sheet for children here https://dyspraxiafoundation.org.uk/wp-content/uploads/2018/08/DyspraxiaFoundation-ChildFriendlyDefinitionOfDyspraxia.pdf
Finally I would ask them to not despair because children with dyspraxia can be supported and can achieve and do grow up into valuable adults.
Would you like to see dyspraxia assessments available on the NHS?
Absolutely and standardized so that everyone has an equal chance of diagnosis and support.
Are there any coping mechanisms you have coming across in your time which you find particularly useful?
That’s a million dollar question. Our family mantra has always been ‘In the great scheme of things…’ because very little really matters. Parents are under a huge amount of pressure and want their children to do well and be happy. We can get hung up on things like tying shoe laces and riding bikes neither of which are a measurement of worth.
Three things that worked well for me are.. I videoed my son trying to get dressed, ride a bike and use cutlery each year. In those moments when we felt despair and that we were not making progress we could look back and recognise how far he had come.
I also had a cut off point of 8 pm for questions. Joe asked questions incessantly in his endeavour to understand a world that was /is very confusing to him and I found that I would lose patience after a while. So I told my sons that my brain stopped working at 8pm. Much needed respite.
Also cutting corners is not cheating, it’s all about equality of opportunity so if a person needs certain adaptations embrace them.
Living with dyspraxia can often be a frustrating and testing experience and a case of ‘if at first you don’t succeed, try, try again’ do you have any advice for adult dyspraxics who may feel beaten down or emotionally exhausted by it all?
Self-care is very important and often very hard when one’s feeling defeated. I suffer with reactive depression as a result of my terrible battles to get my eldest sons needs met and in my constant efforts to advocate for him. At times life seems very bleak indeed. I find that for me exercise is very beneficial, and also animals are a huge therapy to me. One need so find something that helps to relax and remove pressure. That may be watching a film, a walk in the fresh air, phoning a helpline, blogging, painting, ta chi whatever helps. Also chat to others who may feel the same. Our Facebook groups are excellent for that and our youth group is hugely proactive on an emotional/solidarity level. The adult group is used very much less for that but it is for adults to change that and to trust that the DF is not there to criticize or ignore them. Quite the reverse is true. Know your limitations and try to plan ahead. I also think that voluntary work can be very beneficial. Something without the pressures of paid employment, where one can mix with others, practice new skills and be valued without time or target commitments.. My own sons and my husband and I volunteer in various capacities.
We all know that dyspraxia does not mean a lower IQ and than many dyspraxics are high achievers, academically and professionally. Are there any unique positive traits that many dyspraxics have that we should be proud of?
Oh tenacity has to be up there as a big one! Also forgiveness, humour, creativity and the ability to think out of the box. I have met many, many people with dyspraxia (and other co existing conditions) and they are always remarkable at some level. I have learned a huge amount re humanity and human compassion from them.
Do you recommend adult dyspraxics networking in real life and across social media?
I think it has its place but all social networking has to be done with care as there are many dangers out there. The DF Facebook page is monitored and a great place and if there is a group in your area go along. If there isn’t why not consider starting one (the DF will assist). I believe it can be very rewarding and uplifting to be others who ‘get it’. I witness and feel that at our conferences all the time. On the whole I think that networking has a very important place.