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 Guide to Duchenne Muscular Dystrophy : Information and Advice for teachers and carers.

This contains useful information and advice from leading experts about learning and behaviour in Duchenne and how to work sucessfully with school to ensure that your young person is able to achieve his/her potential. Nobody is looking for extra labels for children with DMD,  but it is important that you let school and other people working with your child know about the possible risks as it may help to make them understand his/her behaviour.

Include Duchenne project

From 2008 - 2011 Action Duchenne ran the 'Include Duchenne' project which worked with 60 children living with Duchenne and their families and schools across the UK. Through an online reading intervention that was delivered in partnership between home and school, children made significant progress in their reading comprehension, decoding and fluency skills. This project used a synthetic phonics approach to reading, and showed the importance of finding children's strengths and interests so that they feel more confident and engaged when learning to read. (Hoskin and Fawcett 2014). The 'Include Duchenne' project  won the 2011 National Lottery Award for Education and you can read about it in this Telegraph article.

Decipha and SEND in Duchenne

Work on Duchenne and learning and behaviour has since been continued by Decipha CIC who have a wealth of experience in SEND and Duchenne and who work on a one to one basis with children and families and offer training and support to schools. 

EHC Plans

All children with Duchenne should have an Education Health and Care Plan that clearly identifies outcomes that are measurable. It is important that school works closely with the child with Duchenne and their family to produce these outcomes. 

Further reading