Autism in Duchenne muscular dystrophy: how to detect and what to do

Thursday April 2 is World Autism Awareness Day. Then, the world raises awareness about people with Autism Spectrum Disorder (ASD) throughout the world. On this day people reach out and create initiatives to raise public awareness of autism. This type of neurological problem can be present in some people affected by Duchenne or Becker muscular dystrophy. 

Autism in Duchenne muscular dystrophy

In general, the cells in a Duchenne patient’s brain are in good health and remain so. But in some cases, intelligence may be lower than average. However, and most importantly, learning to read and learning arithmetics – for example multiplication tables – may be an important issue during your school career. It is suggested that specific cognitive functions such as automatization, concentration and working memory may be more difficult for Duchenne boys and men. This is probably caused by the lack of dystrophin in the brain.

Signs of possible learning disabilities

So the brain may be involved, but this is definitely not progressive. It is important to watch out for signs of possible learning disabilities and to act quickly when you discover them. Reading is very important for your future as our society is reading based, like reading books, emails, or phone messages. It’s essential that your parents and teachers are aware of this higher risk of learning problems. If they have questions about your intelligence, or when speech development or learning to read is progressing too slowly, there may be a reason for further psychological testing. You can ask your medical specialist to start this procedure.

How to get tested

A speech therapist may evaluate language capacities and a psychologist may test intelligence, working memory and concentration. Testing is fun and seldom causes unnecessary stress. The results of these tests may help to make an individual therapy plan and an individual learning plan. Early detection is key. Technical aids such as computer programs or smartphone apps may also help to compensate. Boys with Duchenne should preferably go to a regular school, and the majority of them do so. Regular school has a lot of advantages for both the boys themselves and their peers. But sometimes individual or special education is needed.

Research on dystrophin in the brain

Although Duchenne de Boulogne already noted the role of dystrophin in the brain when the condition was first described, the focus in the past decades has primarily been on improving muscle function. In January 2020, University College London launched an extensive pan-European research project aiming to assess and address these needs. World Duchenne Organization is part of this BIND Project consortium to ensure optimal involvement and outreach to patients and their families.