Sotos Syndrome

What is it?

I had never heard of this before this year but have since met two children with Sotos Syndrome in my local area. It is quite a rare genetic disease caused by mutations in the NSD1 gene and occurs in 1 in 10,000-14,000 of births. Some features of Sotos Syndrome can also be attributed to other conditions so it may not be accurately diagnosed at first.

Watch a documentary about Sotos Syndrome below

How can we recognize it?

Children with Sotos Syndrome tend to grow more quickly than their peers so may be much taller and have a larger head than the average for their age. In early childhood children may be recognizable by their long, narrow faces and large forehead. Cheeks tend to be flushed and eyes may point downwards at the outside corners.

As other children hit puberty they will catch up with the growth made by children with Sotos Syndrome earlier in their lives so adult height tends to be within the range considered normal.

What are the associated health or behavioural problems?

Other health problems associated with Sotos Syndrome may (but not always) include:

  • weak muscle tone (hypotonia) which often delays development of early motor skills
  • intellectual disability, with a wide range of symptoms
  • problems with sound production, therefore speech and language difficulties
  • a stutter or monotone voice
  • heart or kidney defects
  • problems with hearing or vision loss
  • curvature of the spine (scoliosis)
  • in young babies, poor feeding and jaundice

Some behavioural problems may include:

  • Attention Deficit Hyperactivity Disorder (ADHD)
  • Phobias, obsessions and compulsions
  • Impulsive behaviour and poor emotional control

(Information adapted from Genetics Home Reference: Sotos Syndrome, 2015)

How can we support learners with Sotos Syndrome in the classroom?

Many strategies used to support children with Sotos Syndrome can also be useful for other pupils. It could even be argued that many characteristics of good teaching are inclusive by their very nature.

In our school the student with Sotos Syndrome has an experienced one-on-one TA as his support and he leaves school at midday to avoid becoming over-exhausted. He takes part in some activities with his current year level and joins in with younger classes for some sensory and outdoor exploration. Since starting school his motor skills have noticeably developed and he has made some friends in the class with whom he wants to communicate so he has started to attempt speaking.

Within children diagnosed with Sotos Syndrome there are various degrees of severity and it is important to remember that development usually catches up by the time the child reaches their late teens.

Teaching strategies we can use:

  • Visual support e.g. visual timetable
  • Sticking to a routine with support if routine has to change unexpectedly – can cause distress due to obsessive nature some pupils exhibit
  • Activities designed to support gross and fine motor control
  • Use of non-verbal communication methods e.g. Makaton to allow communication even when the child is pre-verbal
  • Short activities with frequent changes to allow for shorter attention span and a feeling of success
  • Research from Birmingham University (J. Saddington, 2007, Sotos Syndrome and Theory of Mind) seems to suggest that children with Sotos Syndrome may display some similar symptoms to children with Autism so some of the strategies for supporting children with Autism could also be helpful


Genetics Home Reference (2015) ‘Sotos Syndrome’

Saddington, J.(2007) Sotos Syndrome and Theory of Mind. Available from:

Further information on Sotos Syndrome

Further information on ADHD

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