As many parents of children with an autism spectrum condition (ASC) will tell you, there can be several coexisting medical conditions which seem to go hand-in-hand with autism.

Many of our children have epilepsy or Down’s Syndrome, lots of families report mental health difficulties and we often find dyslexia talked about in relation to children who have an ASC.

One such coexisting condition is dyspraxia, also known as Developmental Coordination Disorder (DCD).

Characterised as a condition affecting physical co-ordination causing a child to perform less well than expected in daily activities for his or her age, and appear to move clumsily, DCD is the specialist subject of Professor Amanda Kirby of the University of South Wales.

Founder of the Dyscovery Centre, which opened in Cardiff in 1997 as a response to a lack of provision and coordination of services for children with DCD (Dyspraxia) in the UK, and now part of the Faculty of Life Sciences and Education at the University of South Wales, Amanda has assembled a team of health and educational professionals, including medical practitioners, speech and language therapists, educational psychologists, occupational therapists, physiotherapists, counsellors and child and adolescent psychiatrists.

As a former GP herself, Amanda speaks to our staff writer, Lindsay Bruce, about how she first became interested in DCD (dyspraxia).

Amanda you’re known as an expert in this field, but where did your knowledge and interest in autism, and in particular DCD, come from?

“The main reason I got interested was because of my son. I was doing community paediatrics at the time and he was the second of my two children and I recognised that he was walking late and his speech was indistinct and he was much floppier, albeit a happy chappy.

“He wasn’t meeting some of his developmental milestones and so he was diagnosed very early as having DCD. Nowadays we wouldn’t normally diagnosis so young but because I was in the position to rule out other things, we got a diagnosis, and so we started on this journey.”

Was there a bank of resources to help you following diagnosis?

“How much is written about it today? Very little, and he’s 31 now so if you can imagine 27 or 28 years ago there was even less written about it… very little research done. It seemed to me that people weren’t recognised or were lumped together… they might have been called dyslexic or even learning disabled but the diagnosis you get is the door you go through.”

“… the diagnosis you get is the door you go through.” 

“I was lucky to have a very good paediatric neurologist doctor who gave my son the right and appropriate diagnosis. As he got older we then recognised he had ADHD which is very common.

“DCD is known to overlap with ADHD, with ASC, with dyslexia, with language impairment, and like all the different developmental disorders, they reveal themselves as and when the environment demands it.”

What is one of the most helpful pieces of advice you were given, or would give to parents today?

“I would say, look at what we call ‘affordances’. What can we do to afford success? For lots of parents desperately trying to get their child to fit the mould of recognised milestones they’re repeatedly trying to change the child. Well sometimes we can’t change the child but we can alter the environment and get the parents to think about it, ‘reasonable adjustments’ in their environment.”

When you say ‘environment’ what do you mean?

“So the environment can be where I approach you, what I say to you, but it can also be where I place you. So if I sit you on a chair and you can’t balance then maybe we need to think about a lower chair where you can balance because your feet are on the ground. So we’ve changed the chair not you.

“It’s very important for parents to see that there are things they can do.

“If you say the same thing again and again and it’s not working, that’s not helpful at all. But if you break it down into small chunks to check for understanding, that’s you doing something for the child and what you’ve done now affords the child success. And this is so important for parents to see. There are a lot of little things that can be done and often they’ll say ‘well I hadn’t thought about that’ but all those little things really can add up to being a tipping point for success.”

Professor Amanda Kirby

If you are a parent in this position I imagine it would be easy to become very task focused?

“Yes! Task focused and really thinking about what do you need to do… but ultimately the end goal for all parents is helping their child to become independent without being overwhelmed by the vast journey ahead. If you start thinking about where you want your child to be at 16, and they’re only three just now, it’s a really long way off. So I would break it down into manageable chunks.

“In the next three years I would love to see my child being able to feed themselves, dress themselves etc… this is much more manageable but it still keeps one eye on the future so we are working towards independence – but with balance.”

What kind of balance? Parenting any child can seem pretty full-on…

“I’ll give you an example. The school says your child should be able to colour in so you are trying everything you can to help your child colour in. But why? Being an avid colourer isn’t that important.

“Keep in balance what you’re trying to do. I often hear about conversations that involve children being ‘encouraged’ to do things that in later life won’t matter. If your child is having difficulty with handwriting but has a great vocabulary and knows how to spell, then get them to type it on a tablet or computer. We have the technology so why not use it?

“That’s not to say we don’t teach handwriting because we know for some children the thinking process and the shapes help you create the words, but for some kids it’s not the answer. If the end goal is the child telling a story, we need to find ways to help them tell a story. So for teachers and parents we always have to ask ourselves, ‘what is the end goal?’

“If the end goal is to tell a story then we can tell a story. If the end goal is to write shapes to improve your flow then let’s do shapes with no content. We sometimes get confused as to what we are actually asking the child to do. If a child had no limbs we would be looking for ways to help them record their creativity, why not do the same with children who have DCD or autism?”

Can parents take part in this process?

“Absolutely. If you are a parent you might want to demonstrate what your child can do. I.e. intelligence is there – can use keyboard – just can’t write. Often parents will say he’s great at telling stories but when he comes to write it nothing comes out, so then why not tape it? Or get them to tell it to you and you type it so you can show the difference between a story he’s handwritten about going to the beach and one that he’s told you where the vocabulary is richer, more expansive, it’s longer… and that demonstration will allow teachers to see the ability that’s often missed.”

So what are the signs and symptoms parents can look out for in relation to dyspraxia (DCD)?

“What’s the only thing you do without coordination required, growing up? Sleeping. Everything else requires it, so any area where you see an issue is your signs and symptoms.

“How are they getting dressed, brushing teeth, combing hair? A young child may be late walking but not all children who are late walking will be DCD and not all DCD children will be late walking. Late walking may be a sign to look more closely across the board.

Professor Amanda Kirby

“In early years – speech and language difficulties. So if you have a child who already has speech and language delay they may have other problems as well like motor skill tasks needed for buttoning, threading, scribbling, feeding, running might be ungainly…

“As you move into school; writing skills, using scissors, using rulers, playing ball games, throwing, catching, getting changed for PE would be slower, problems with shoe laces or fastening things… maybe even a lack of balance.”

So this must look different at different ages?

“Yes. We don’t often know where issues are with very small children because their needs are pre-empted. They don’t need to walk to or ask for a drink if mum gives them a drink routinely. It’s only in social settings as they progress where we see difficulties emerging. So a child may be fine running in the garden on their own but as soon as a crowd forms around them they can’t do it. They can perhaps kick the ball, but not kick and run at the same time.”

Can children ‘feel’ the impact of being different?

“I’ve seen children as young as four with very marked self-esteem issues, being withdrawn, not having many friends and maybe even being bullied. Ultimately we are animals and animals recognise something different. Your peers recognise there’s something different and you know there something different which can have a knock on your confidence and self-esteem.

What are the ‘next steps’ for parents concerned their child may have DCD?

“I would begin to make a list for the GP because any referral would come from your local doctor.

“List concerns, what the problems are in everyday life, what you’re worried about, has anyone else noticed it, if there is any other factors like premature birth (because it increases the risk factor)… are there any family members who are particularly clumsy?

“I can’t tell you DCD comes from one gene but we do know it’s genetic – there could be a link in the family. DCD doesn’t pluck you from the air.”

For our families, can you tell us about the overlap with DCD and autism?

“The overlap with autism is around 50-60%. But in terms of what that looks like it’s difficult to pin down. Often motor difficulties are attributed to DCD but the child could have ASC too. Just like autism, it’s a spectrum and traits of both cross over.

“The most obvious aspect of both that would be assessed is how the child is in a social context. Kids with DCD, because they can’t engage due to their motor difficulties will then have less opportunity to engage and will be more socially withdrawn so have ‘social delay’.

“But there will be some children with motor issues and autism who will have social disorder. It’s a broad spectrum that covers those children who are socially confident, those with social delay due to lack of opportunity and those with social disorder. Social disorder would be the end of that spectrum where they’re not picking up on social cues, for example.

“Children with social delay are often empathic, have good empathy skills, and have got the potential skills but have lacked the practice, so they have the potential for social confidence, but lack of opportunity means they’re not there.”

Is it more or less difficult to spot in teenage years?

“I think it’s harder because as we get older we learn to avoid situations that cause us problems so we can’t spot the awkwardness. One thing that often occurs, however, is children wanting to engage with other people from outside their peer group. This is easy to see when a six-year-old wants to spend time with a sixteen-year-old, but not so easy to spot when a 20-something wants to spend time with people in their 30s.

“I know one parent who’s had success with martial arts because it’s a mixed age group – opportunity to mix with children younger and older - but have an opportunity to do something age appropriate as well.”

Any final words of encouragement or advice?

“I think just strive to give your children opportunities to be social and to be healthy. If football won’t work then let’s look at rambling or rowing when they’re older. Maybe leave the bike to one side, or look at taking off the peddles or lowering the seat at first. If the child is motivated to learn to ride a bike then as parents it’s our job to find ways to make that happen safely.”