National Association of Parents of Autistic People
In the US, Clara Claiborne Park has produced two books now available in Italian translation, published by Astrolabio:
The Siege: A Family's Journey into the World of an Autistic Child (1967), translated as L'assedio, in which she chronicles her autistic daughter's childhood and describes her parents' "obstacle course", mirroring the "obstacle course" undertaken by many Italian parents today;
Exiting Nirvana: A Daughter's Life with Autism (2001), translated as Via dal nirvana, the sequel to The Siege, which deals with her autistic daughter's adolescence and adulthood over the following 30 years.
The Park family had to confront the issue of how to bring up an autistic child at a time and in a place where they had no access to comprehensive, intensive early intervention services appropriate to her condition. Therefore, to the best of their ability, they had to play the roles not just of parents, but also of specialized teachers, rehabilitators, educators, coordinators… Thanks to the help of her united, solid family Clara Park in particular has had the patience and perseverance required to implement her educational 'do-it-yourself' programs, without ever giving up, no matter how limited, slow and often ephemeral her daughter Jessy's learning curve might be (Jessy becomes Elly in The Siege). Jessy's progress, later assessed with admiration by professionals in the field, became evident only over a period of many years, and continues today, even though Jessy is over 40 and her mother over 70.
When Jessy was only 22 months old, Clara Claiborne Park started keeping a diary, in which she charted her daughter's behavior. Each day, for 40 years, she continued to write down all that happened to the child, her reactions and eventually her speech when she began to talk many years later - all without interruption over 40 years! This large volume of material represents firstly a reliable account of Jessy's life which we can read in the two published volumes; secondly, it constitutes an extremely valuable databank on the lifelong development of an autistic individual and the environmental factors which may prove beneficial.
If we think about it, keeping a diary is not a costly exercise and does not require highly specialized training. It is something most parents could do easily. By chronicling their children's development, in conjunction with any ongoing treatment, parents would not only greatly help their children, but would also further scientific knowledge. Parents alone are in a position to accomplish what no researcher can do, i.e. continuously maintain thorough, detailed, daily records in diverse circumstances, possibly over long periods of time, from the child's birth to the parents' death.
A b determination and much perseverance are obviously required on the part of the diary keepers. However, the larger the number of individuals who participate in this exercise, the more comprehensive will be the pooled data, based on a substantial number of 'unique cases'. Such a 'critical mass' of data would enable competent researchers to derive important indicators as they identify the relevant variables in defining the numerous sub-groups making up that heterogeneous set known as 'the autistic spectrum'.