Rett's Syndrome

Rett’s Syndrome is one of five pervasive developmental disorders. Rett's Syndrome, while in the past was thought to only occur in females, can also very rarely be found in males. With males who have Rett’s disorder, often the mother will have a miscarriage or premature death will occur.

Dr. Andreas Rett first described the disorder but it wasn’t until 1983 that Rett’s Syndrome received some attention and Dr. Bengt Hagberg wrote a paper on it.

Children who have Rett’s disorder will have a normal development until between the ages of 6-18 months. Then, the development will stop and often regression will occur.

The child with RS will have problems that are similar to the other pervasive developmental disorders in terms of communication. Other areas of concern are seizures and dyspraxia (apraxia). Apraxia basically affects the body’s way of performing motor skills.

Every girl with Rett Sydrome will be affected differently. As a result of the different levels, Rett’s has often been misdiagnosed as Autism and sometimes Childhood Disintegrative disorder. Scientifically speaking, RS is due to a mutation of the MECP2 gene on chromosome Xq28.

Rett disorder occurs in about 1 in 10,000-20,000 girls. Rett’s disorder often is confused with the Autistic disorder as girls with RS become irritable and distraught with crying spells similar to Autism.

Parents later reflected on how it was nearly impossible to comfort them during their episodes. As many as 75% of all girls with RS had been previously diagnosed with the Autism Spectrum Disorder.

Finding resources on RS can be extremely difficult. Target has a few selections of books that you can find by using their search feature. The official parent’s sourcebook is a compressive book for new parents. You search for Rett's Syndrome here.