There are established behaviour and learning risks in Duchenne.  Published studies have shown difficulties in the following areas:

  • speech delay and/or language comprehension

  • learning to read – especially phonics

  • problems with counting and arithmetic

  • short term and working memory (holding something in your head while you do something else) – this is very important when you are learning to read or do maths, as well as when you are following instructions

  • making (and keeping) friends

  • keeping your emotions under control

  • difficulties adjusting to having Duchenne/ not keeping up physically with everyone else

If you have Duchenne you have a higher risk of having the following diagnoses as well (but not everyone with Duchenne has them!):

  • Attention Deficit and Hyperactivity Disorder

  • Autistic Spectrum Disorder

  • Obsessive Compulsive Disorder

See the Standards of Care Treat-NMD guide (page 39) for more information.

Please also see the PPUK Learning and Behaviour Toolkit (please note, that, although the information is still pertinent, the email addresses are likely to have changed since publication).

Nobody is looking for extra labels but it is important that you let school and other people working with your child know about these possible risks as it may help to make them understand his or her behaviour.

Action Duchenne subsidised Decipha CIC to work with young people with Duchenne, their families and schools.  Decipha’s work in Duchenne was based on research in Duchenne and best practice interventions for young people with a variety of Special Educational Needs and Disabilities from 0 – 25 years. We worked with young people, families and schools/colleges to assess, support and intervene with any educational needs.

Decipha has also been funded by the Council for Disabled to run a Leadership Programme for young adults aged 19 – 25 years in East London who have a life limiting/threatening or complex condition.  Have a look at our blogs to find out about the programme's impact.

Further reading