Rett Disorder (syndrome)

Rett syndrome is a neurological disorder occurring primarily in girls, in which individuals exhibit reduced muscle tone, autistic-like behavior, stereotyped hand movements consisting mainly of wringing and waving, loss of purposeful use of the hands, diminished ability to express feelings, avoidance of eye contact, a lag in brain and head growth, gait abnormalities and seizures. Hypotonia (loss of muscle tone) is usually the first symptom. The syndrome was first recognized in 1966 by Dr. Andreas Rett, however it was not until a paper was published by Dr. Bengt Hagberg in 1983 that the disorder was made widely known in medical circles. The syndrome affects approximately 1 in every 10,000-15,000 live female births, with symptoms usually appearing in early childhood.

Typical characteristics:

  • Normal development until 1/2 to 1 1/2 years
  • Shakiness of the torso, and possibly the limbs
  • Unsteady, stiff-legged gait
  • Breathing difficulties (hyperventilation, apnea, air swallowing)
  • Seizures (approximately 80% have epilepsy)
  • Teeth grinding and difficulty chewing
  • Retarded growth and small head
  • Functioning level is usually between severely and profoundly mentally retarded
  • Hypoactivity

In most cases, there is a regression in cognition, behavior, social, and motor skills throughout their lifetime.


Center for the Study of Autism Website:
The Center for the Study of Autism (CSA) is located in the Salem/Portland, Oregon area. The Center provides information about autism to parents and professionals, and conducts research on the efficacy of various therapeutic interventions.

International Rett syndrome Assn Website:
As the most comprehensive worldwide organisation dedicated to Rett syndrome, the International Rett syndrome Association proudly continues its nineteenth year providing important programs and information.

Our Rett syndrome Website:
"I am the mother of a beautiful 13-year-old girl named Claire who may have a mild variant form of Rett syndrome, and of an equally beautiful 12-year-old girl named Jill who does not. I spent five years organising and maintaining an Indiana family support group, served for three years as a Regional Representative for the International Rett syndrome Association, and have maintained this site since 1995. I hope you find this site useful."