Families of children with autism and asperger disorderinformation about the disorder and the attitudes of parents towards family composition

Resumen

This main aim of this project is to provide a description of parents' knowledge about autism and the genetic influences involved, as it could prove relevant to the decisions taken by parents regarding whether or not to have further children after one child had been diagnosed as having ASD. There are also two specific issues involved and related to the main aim: the extent to which such parents' decisions on planning their families were influenced by, on the one hand, the burden of looking after an autistic child and, on the other hand, their appreciation of genetic risk. One key issue underlying the aims of the study is whether stoppage effects were operating in families with a child with autism or Asperger Disorder. Do parents of a child affected by autism or Asperger Disorder, for any reason related to the disorder (fear of having another affected child or burden of looking after the child), stop having children by taking contraceptive measures? If this is the case families with autism will have a characteristic birth order pattern; with the child with autism being the only child or, in families with more than one child, the last born (stoppage by termination) or second-to-last born (stoppage by replacement). A questionnaire elaborated by the authors of this study was sent to 1.112 parents of a child with autism or asperger. 874 were returned. More than 90% of parents believed that genetic factors were important in autism. A high proportion of parents believed in a higher recurrence of autism in their families than thecorrect one. Only 25% of parents had genetic counselling and this was related to a better knowledge on aetiology and recurrence of autism in families. 2/3 of parents used regular contraception and 24.9% related to the fact of having a child with autism. The study found evidence of stoppage by termination because families with the child with autism being the only one or second of two were related to use of contraception because fo the fear or burden of having a child with autism.