EDUCATION BEHAVIOUR

EDUCATION BEHAVIOUR

Although many individuals with Duchenne are highly intelligent and do well at school and university, it is undeniable that some have learning difficulties and some are diagnosed with more severe conditions such as autism or attention-deficit hyperactivity disorder (ADHD). Depression, anxiety and behavioural problems can also be issues faced by families. These problems can stem from several different sources or a combination of factors.


Firstly, it is known that the protein that is missing in Duchenne – dystrophin – has a role in the brain, although this is not fully understood as yet. For the majority (about 65%) intellect and cognitive abilities will not be affected, or only mildly affected, by the lack of dystrophin.

It is thought that this may be related to the location of the genetic change in the dystrophin gene. However, intellectual problems or learning difficulties do occur in approximately 35% of boys with Duchenne (the rate in girls is unknown). In these cases, working memory seems to be the worst affected.

This is the ability we have to hold in mind and mentally manipulate information over short periods of time, which is particularly important when following instructions and doing tasks such as mental arithmetic.

Although many individuals with Duchenne are highly intelligent and do well at school and university, it is undeniable that some have learning difficulties and some are diagnosed with more severe conditions such as autism or attention-deficit hyperactivity disorder (ADHD). Depression, anxiety and behavioural problems can also be issues faced by families. These problems can stem from several different sources or a combination of factors.


Firstly, it is known that the protein that is missing in Duchenne – dystrophin – has a role in the brain, although this is not fully understood as yet. For the majority (about 65%) intellect and cognitive abilities will not be affected, or only mildly affected, by the lack of dystrophin.

It is thought that this may be related to the location of the genetic change in the dystrophin gene. However, intellectual problems or learning difficulties do occur in approximately 35% of boys with Duchenne (the rate in girls is unknown). In these cases, working memory seems to be the worst affected.

This is the ability we have to hold in mind and mentally manipulate information over short periods of time, which is particularly important when following instructions and doing tasks such as mental arithmetic.

EDUCATION, LEARNING & BEHAVIOUR

Learning problems in Duchenne are not progressive and good help can greatly improve outcomes. Early intervention from a speech therapist is also essential for those with language difficulties. Other factors that can affect behaviour and learning include the many adjustments that are required by the child and their family and the related stress that comes with a progressively disabling condition. Most children with Duchenne also take steroids that can affect mood and behaviour, although this usually settles down or can be managed with a change in dose. Behavioural difficulties can affect social interaction at home, at school and in all areas of life. It is important to get help early from a qualified psychologist and/or counsellor for these issues. Support from school will also be needed with physical limitations as the condition progresses. It is advantageous to anticipate any problems and work with the school to overcome them.

The resource list below contains advice on all aspects of education, learning and behaviour to help you on your journey.

  • Our New Diagnosis Packs and Teachers Packs also contain a book called “The psychology of Duchenne muscular dystrophy”; which includes information about intelligence, learning, behaviour and other relevant issues for parents, family members, teachers and other persons involved.
  • Peer to peer support for teens can be found at Livewire – a safe online space connecting teens living with illness and disability, a program run by Starlight Children’s Foundation.
Order Your teacher pack
  • Information about cognitive function in DMD, which you may find you can apply to our Australian educational settings.
  • There are also guides for parents, teachers and PE teachers to help you talk with educators about how Duchenne affects your child.
  • Teachers will find this page helpful. Why not print and share with your son’s teachers?

For more tips and ideas you could subscribe to Source Kids – an Australian magazine for parents, carers, families, professionals and teachers working with children with special needs.

EDUCATION, LEARNING & BEHAVIOUR

Learning problems in Duchenne are not progressive and good help can greatly improve outcomes. Early intervention from a speech therapist is also essential for those with language difficulties. Other factors that can affect behaviour and learning include the many adjustments that are required by the child and their family and the related stress that comes with a progressively disabling condition. Most children with Duchenne also take steroids that can affect mood and behaviour, although this usually settles down or can be managed with a change in dose. Behavioural difficulties can affect social interaction at home, at school and in all areas of life. It is important to get help early from a qualified psychologist and/or counsellor for these issues. Support from school will also be needed with physical limitations as the condition progresses. It is advantageous to anticipate any problems and work with the school to overcome them.

The resource list below contains advice on all aspects of education, learning and behaviour to help you on your journey.

  • Our New Diagnosis Packs and Teachers Packs also contain a book called “The psychology of Duchenne muscular dystrophy”; which includes information about intelligence, learning, behaviour and other relevant issues for parents, family members, teachers and other persons involved.
  • Peer to peer support for teens can be found at Livewire – a safe online space connecting teens living with illness and disability, a program run by Starlight Children’s Foundation.
Order Your teacher pack
  • Information about cognitive function in DMD, which you may find you can apply to our Australian educational settings.
  • There are also guides for parents, teachers and PE teachers to help you talk with educators about how Duchenne affects your child.
  • Teachers will find this page helpful. Why not print and share with your son’s teachers?

For more tips and ideas you could subscribe to Source Kids – an Australian magazine for parents, carers, families, professionals and teachers working with children with special needs.