The children: The children 

One of the key themes that came from the interviews with the parents was that the children were all very individual with different personalities and characteristics. We asked parents to describe their children and here we present a selection of those descriptions. 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Having given a taste of what the children are like, we discuss in more detail the experiences of the parents we interviewed. These include how the children were diagnosed, experiences of going out, the activities the children enjoy or dislike and how parents view their children’s future.

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