1. maura maura United States says:

    It is frustrating for a parent of a daughter with Retts syndrome to hear it associated with Autism.  Many clinitions in the field of Retts seem to agree the Autism has little relationship to Rett other than a lack of normal verbal development.  Retts due to a challenge with motor commands, which I do not believe is the challenge with folks living with Autism.  A small point to some perhaps.  My daughter is very social and adores human interaction.  It is a lack of oral motor skill that creates the social challenge not a lack of desire to connect.

    • Jill Johnson Jill Johnson Australia says:

      Dear Maura,
      I think Rett has a little more in common with autism than lack of normal development. My Rett daughter (48y.o.) who types has told me of her sensory perception difficulties which in many ways resemble those of autistics  -  auditory, visual and touch in particular. She sees the scene "in bits" (ref Donna Williams), has no touch perception over most of her body (temperature and pain Yes!)but not touch. She cannot bear having her nails cut (why???) and is intolerant to loud noises. She also needs a gluten and casein-free diet in order to be able to chew and swallow.
      Regards
      Jill

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