Searching for a cure, Improving lives

Learning and Behaviour risks in Duchenne

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 .

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

Decipha CIC  is subsidised by Action Duchenne to work with young people with Duchenne, their families and schools.  Decipha’s work in Duchenne is 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 work 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:

You can contact the Decipha team here:

Your Name (required)

Your Email (required)

Which program would you like more information on?

Your phone number

Your address

Any additional details?



Some of the published studies about learning and behaviour in Duchenne:

Cotton, S., Voudouris, NJ. & Greenwood, KM. (2001) Intelligence and Duchenne muscular dystrophy: full-scale, verbal, and performance intelligence quotients. Developmental Medicine and Child Neurology, 43(7), 497-501

Hendriksen, J.G. & Vles, J.S. (2006) Are males with Duchenne muscular dystrophy at risk for reading disabilities? Pediatric Neurology, 34: 296–300

Hendriksen, J.G. & Vles, JS. (2007) Neuropsychiatric disorders in males with Duchenne muscular dystrophy: frequency rate of attention-deficit hyperactivity disorder (ADHD), autism spectrum disorder, and obsessive-compulsive disorder. Journal of Child Neurology, 23: 477–81

Hinton, V.J., De Vivo, D.C., Fee, R., Goldstein, E. & Stern, Y. (2004) Investigation of Poor Academic Achievement in Children with Duchenne Muscular Dystrophy. Learning Disabilities Research and Practice, 19 (3), 146-154

Hinton, VJ., De Vivo, DC., Nereo, NE., Goldstein, E. & Stern, Y. (2000)  Poor verbal working memory across intellectual level in boys with Duchenne dystrophy. Neurology, 54:2127–2132

Pane, M., Lombardo, M.E., Alfieri, P., D’Amico, A., Bianco, F., Vasco. G., Piccini, G., Mallardi, M., Romeo, D.M., Ricotti, V., Ferlini, A., Gualandi, F., Vicari, S., Bertini, E., Berardinelli, A., Mercuri, E. (2012) Attention Deficit Hyperactivity Disorder and Cognitive Function in Duchenne Muscular Dystrophy: Phenotype-Genotype Correlation Journal of  Pediatrics  Oct;161(4):705-9





Support Action Duchenne with a monthly or one off donation



View our events

View All Events


Join the DMD registry for access to clinical trials


Action Duchenne launches new Research Strategy for Duchenne muscular dystrophy

November 17th, 2017

  Action Duchenne, a leading UK-wide patient and parent-led organisation for Duchenne Muscular Dystrophy, is

Tell me more

Long-term microdystrophin pre-clinical work, moving towards a potential therapy restores muscle function in canines

July 26th, 2017

Promising microdystrophin pre-clinical work, moving towards a potential therapy has shown to restore muscle function

Tell me more

FDA new approach would reduce number of patients treated with placebo

December 11th, 2017

The U.S. Food and Drug Administration (FDA) has published its recommendation for a new approach

Tell me more

Results announced from survey ‘Juggling care and daily life’

December 11th, 2017

The 17th October 2017 was an important date for the rare disease community.  The highlights of the

Tell me more

Duchenne – How do you measure a life?

Living with Duchenne – an animation

Taking charge of Duchenne

wordpress counter

Stay informed with regular updates from Action Duchenne