These FAQs were put together by members of Movement Matters. Movement Matters is the UK umbrella organisation representing the major national groups concerned with children and adults with coordination difficulties, a condition called Developmental Coordination Disorder (DCD) and sometimes referred to as ‘dyspraxia’. Movement Matters was formed in 2011 to act as an umbrella group to bring together the key bodies involved in Developmental Coordination Disorder/Dyspraxia in the UK. This includes DCD-UK, The Dyspraxia Foundation, The Developmental Adult Neuro-diversity Association (DANDA) and the National Handwriting Association. Dyspraxia/DCD Ireland support Movement Matters and we are pleased to have Prof. Amanda Kirby, a main contributor as one of our advisors.
Developmental Coordination Disorder (DCD) is a common developmental disorder that is diagnosed when an individual has severe difficulties in learning everyday motor skills, which cannot be explained by physical, sensory or intellectual impairment. Motor difficulties are seen as clumsiness, as well as slowed and inaccurate performance of motor skills. These affect all activities including dressing, using utensils and ball skills. Academic and vocational performance are also affected by the motor difficulties. The difficulties may be considered to be mild, moderate or severe.
This refers to the ‘Diagnostic and Statistical Manual of Mental Disorders’ a classification system published by the American Psychiatric Association and used internationally by researchers and clinicians. Based on the latest research evidence, it describes a wide range of psychological disorders seen in childhood and adulthood, including Developmental Coordination Disorder (DCD). Importantly, it lists the central features of each disorder to help clinicians make an accurate diagnosis. The latest version is DSM-5, published in May 2013.
A diagnosis of Dyspraxia/DCD is usually undertaken by different professionals as a part of an interdisciplinary team, after gathering information from the child, parents, and school to see how the difficulties impact on everyday life. You as a parent or carer can make a referral to an ‘Assessment of Needs officer who will refer you onto an interdisciplinary team under the HSE ‘Assessment of Need’ click on link for more information . http://www.hse.ie/eng/services/list/4/disability/Disability_Assessment/ That team would consider the information about your child’s coordination and conduct a formal, standardised assessment looking at your child’s co-ordination. They will also rule out other reasons for your child’s motor difficulties (e.g.Cerebral Palsy, Muscular Dystrophy). See the EACD UK recommendations for DCD for further information.
Dyspraxia is an impairment or immaturity of the organisation of movement. Associated with this there may be problems of language, perception and thought. (The Dyspraxia Foundation (UK) 1997). Dyspraxia is a difficulty with thinking out, planning and carrying out sensory/motor tasks. A person with dyspraxia may have a combination of several problems in varying degrees. These include poor balance, poor fine and gross motor coordination, difficulties with vision, motor planning, perception problems and poor awareness of body position in space.
Developmental Coordination Disorder (DCD) is the term used in DSM-5 to refer to a condition in which an individual has severe difficulties in learning everyday motor skills, which cannot be explained by physical, sensory or intellectual impairment. The main features of this condition are clearly described in DSM-5. The term ‘dyspraxia’ is used in many different ways by different people, which can cause confusion. Some use it interchangeably with ‘DCD’ to mean the same thing. Others use it to refer to something quite different. Unlike DCD, there is no internationally agreed formal definition of the term ‘dyspraxia’, and it is not included in DSM-5. Despite this, in Ireland and the UK the term ‘dyspraxia’ is sometimes used in a very broad way to refer to children who have motor difficulties plus difficulties with: speech,organisation, planning, sequencing, working memory and various other psychological, emotional and social problems. However, there is little research evidence to support such a broad diagnostic category..
The term ‘dyspraxia’ is used in many different ways by different people and there is no internationally agreed formal definition for the term. In Ireland and the UK however, the term ‘dyspraxia’ is often used to refer to the condition DCD. If this is the case, then a diagnosis of ‘DCD’ should be given and this only if the individual currently experiences difficulties with everyday motor skills (since this is the main feature of DCD).
A diagnosis of Dyspraxia/DCD is usually undertaken by different professionals as a part of a multi-disciplinary team, after gathering information from the child, parents, and school to see how the difficulties impact on every day life. GPs have an important role to play in this process. GPs may do an initial examination of the child and find out about their past development and current functioning. They may then refer the child onto a paediatrician and/or occupational therapist or multi-disciplinary team for a broader assessment. Some GPs have more experience of Dyspraxia/DCD than others.
Many children with Dyspraxia/DCD will have more than one other developmental disorder overlapping with Dyspraxia/DCD, and so may be at a greater risk of epilepsy because of this association. Some work has looked at the association with Benign Epilepsy with Centrotemporal Spikes (BECTS), also known as nocturnal or Rolandic epilepsy. Motor difficulties have been seen to be present with this form of childhood epilepsy although more research is still needed. This does not mean that the majority of children with a diagnosis of Dyspraxia/DCD will have epilepsy.
No.Verbal dyspraxia falls under DSM-5’s Communication Disorders, and not Motor Disorders. A diagnosis of verbal dyspraxia is given where a child has difficulty making the precise movements needed to produce individual speech sounds and putting these sounds together in the right order in words. Some children with communication disorders also have a diagnosis of Dyspraxia/DCD but in this case the two conditions are separate but co-occurring.
It is not recommended for a formal diagnosis of Dyspraxia/DCD to be given before 5 years of age. This is because there is a lot of variation in children’s development before this age and also variations in the opportunities children have to experience motor skill. However, this does not mean that a child who appears to be delayed in their motor skills before the age of 5 should not be closely monitored, or some form of intervention given. The child can be informally noted as having movement difficulties and appropriate actions taken to support the child’s needs.
The first step is for someone to recognise that the child is not progressing in their motor skill development as one would expect. This can be the parent, a nursery nurse or equivalent, a pre-school teacher, friends and family. At this stage it would be advisable to obtain some form of professional help, probably through either the health or education services. This may involve some form of assessment to help plan intervention that can be given by parents and others in the context of daily living. A diagnosis should not be given at this stage, but the child can be helped by providing appropriate activities that are geared to his/her needs. Some children improve quickly with this intervention, while others will need support throughout their childhood.
Once the child has been recognized as having motor difficulties, his/her parents are in a unique position to support the needs of the child. First, parents can provide their child with exposure to, and experiences of activities that one would expect in the course of daily living and not as separate ‘intervention’ schedules.It is much better to participate in the activities often for shorter periods than having long but infrequent formal sessions. Help and guidance for parents can be obtained from Dyspraxia/DCD Ireland and health and education services. However, it may be that the child may require more than simply experience. In such cases,direct teaching of an essential activity is needed. For this the parent may require additional assistance in the form of more specific guidance from a professional.
Most children with motor coordination difficulties do not grow out of them so it is likely that they will still experience problems in this area as they get older. A formal diagnosis needs a recent assessment of motor skill to establish that all the DSM-5 criteria for Dyspraxia/DCD continue to be met.
Any diagnosis of Dyspraxia/DCD should include confirmation of motor difficulties in childhood and continuing motor difficulties in adulthood. However, there is no standard process of confirming a diagnosis in anyone over 16 years of age. This is because there is no standardized test to assess motor competence after this age. Movement Matters has provided some guidance which gives suggestions on how to tell whether an adult has Dyspraxia/DCD.
Universities do not cater specifically for students with Dyspraxia/DCD, but provide support for all students with additional learning needs usually through student support services. However, if a student makes it known that s/he has experienced this type of difficulty in the past, s/he will be advised of any provision which s/he can take advantage of. It is always sensible to contact the University’s Student Disability Team/Disability Office.
Executive functions is a broad term that refers to planning, working memory, impulse control, inhibition and mental flexibility, as well as the initiation and monitoring of action. Parents, teachers and individuals with Dyspraxia/DCD sometimes report difficulties with executive functioning (including poor planning, memory for instructions and sequencing information). Research is considering whether these are common in those with Dyspraxia/DCD, whether they might be a core part of the disorder or whether they can be co-occurring difficulties in some people.
Dyspraxia/DCD is not as widely known in the general population as conditions such as dyslexia or autism. An employee with Dyspraxia/DCD should give his/her line manager, employer and Human Resources (HR) staff information about Dyspraxia/DCD to show them that it is a real condition. Contact the HR department and ask for an appointment with Occupational Health who can suggest reasonable adjustments. Adjustments might include using the computer rather than handwriting or starting work a little later than other employees. However, many people have different needs and there will be a range of solutions that will be appropriate for different people.
Parents go through a range of emotions when given their child’s diagnosis of DCD/Dyspraxia. Many parents are fearful that labelling their child will make them feel different or less-than other children. Giving your child information on the nature of his/her differences gives them a better understanding of why they behave differently or can’t manage the same activities as their peers, and can provide them with the motivation that is needed to drive through challenges.
A parents first instinct is to gather as much information as possible to help them make informed decisions on how best to support their child. It’s just as important to consider that your child should also be given information and support for understanding and coping with their new diagnosis. Children should have the chance to understand, accept and appreciate their uniqueness by being given information about their diagnosis.
You may fear a number of things if you tell your child (and others) about the diagnosis. You may fear that your child will not understand, that your child may lose some of his/her options in life, that your child will become angry or depressed. These issues and others may or may not surface whether or not your child and others are told of the diagnosis, and if so they can be addressed. Your child may know that s/he is different, but like all children at certain developmental stages, they may come to the wrong conclusions about their perceived differences.
There is no exact age or time that is correct to tell a child about their diagnosis. A child’s personality, abilities and social awareness are all factors to consider in determining when they are ready for information about their diagnosis.You can look for the presence of certain signs that the child is ready for information. Some children will ask “What is wrong with me?” “Why can’t I be like everybody else?” These types of questions are certainly a clear indication that they need information about their diagnosis. Other children, however, may have similar thoughts but may not be able to express them well.
A number of young people do not get a diagnosis until they are in their teens or older. Frequently, those who are diagnosed later have had some bad experiences that can influence the decision of when to share information with them about their diagnosis. They may be very sensitive to any information that suggests they are different. On the other hand, an older child may already know about a previous diagnosis such as Attention Deficit Disorder, Dyslexia, ASD. Because of this history with another label or diagnosis, it may be an appropriate time to share the diagnosis and some concrete information about DCD/Dyspraxia.
Many adults with DCD/Dyspraxia express the view that children should be given information that will assist them in understanding their differences and their unique strengths before they hear it from someone else, and/or overhear or see information that they sense is about them.
A child may believe that people do not like them and/or that they are always in trouble, but do not know why. If given a choice, waiting until a negative experience occurs to share the information is not the best option.
It is important that the process of explaining a diagnosis DCD/Dyspraxia to a child is individualized and meaningful to them. As you begin, it can be hard to decide what and how much information to share.
Consider your child’s ability to process information and try to decide what and how to tell. Staying positive when talking about the diagnosis is very important.
If the child has asked questions, it will give you a place to start. Make sure that you understand what they are asking. Many families have found that setting a positive tone about each family member’s uniqueness is a wonderful starting place.
A positive attitude about differences can be established if you start as early as possible, and before the diagnosis is mentioned by others.
Everyone is in fact unique with his or her own likes and dislikes, strengths and weaknesses, and physical characteristics. Differences are discussed in a matter of fact manner as soon as the child or others their age understand simple concrete examples of differences. With this approach, it is more likely that differences, whatever they are, can be a neutral or even fun concept.
Matter of fact statements such as “Mommy has glasses and Daddy does not have glasses” or “Bobby likes to play ball and you like to read books” are examples. The ongoing use of positive concrete examples of contrasts among familiar people can make it easier to talk about other differences related to your child’s diagnosis with him or her.
Most children may need minimal information to start. More information can be added over time. Again, be as positive as possible. Your positive attitude and the manner in which you convey the information is important. To make what you discuss with your child meaningful, you can begin by talking about any questions that s/he has asked.
You may want to write down key points and tell him or her that others with this diagnosis/disability also have some of the same questions and experiences. Then you could ask if they would like to find more information by reading books, watching videos, and by talking with other people. Let them know they can ask any question they want at any time they want.
Frequently, when individuals with DCD/Dyspraxia have an opportunity to meet others with a similar diagnosis, they find it is an eye opening and rewarding experience. Interacting with others with DCD/Dyspraxia can help children to realize there are other people that experience the world the way they do, and that they are not the only one. This is particularly important if your child has received a diagnosis in their teens or young adulthood.
Certainly circumstances vary from family to family. If your child is asking questions don’t put off answering them. You should be forthcoming and not suggest talking about it later. Not providing an answer could increase the child’s anxiety and make the topic and information more mysterious.
For many families, using a knowledgeable professional to begin the process instead of a family member or a friend of the family might be the best option. Having a professional involved, at least in the beginning stages of talking about the diagnosis leaves the role of support and comfort to the family and those closest to the child. Having a professional discussing information with the child can also help the parents understand the child’s reaction and provide suggestions for supporting their child.
Explaining a diagnosis cannot be done in one or two encounters. Your child will need time to assimilate the new information about him/herself at their own pace. It may take weeks or months before the child initiates comments or asks questions about the new information. The process of explaining a diagnosis is ongoing. Making the information meaningful from the child’s point of view will greatly enhance the learning process.