I facilitate a drop-in group for parents of children with SENs. Most of the parents who attend have children who have high functioning autism or Aspergers amongst their diagnoses.
Even though my research focuses on those who care for and support children and young people with diagnoses of Aspergers and HFA, I decided that it would be inappropriate to include this group in my research, apart from making personal requests to some specific individuals to interview them. My role in the group is to offer support and share from my own experiences and there was a clear conflict of interests between hearing confidential information in a support role and using such information in my research role. Further, if I had asked the consent of group users to use knowledge gained in the setting in my research, it may well at best influenced the operation of the group and at worst led to some parents deciding not to use the group because they could not rely on their circumstances being kept cinfidential.
However, from time to time I find myself in a conversation when I just wish I hadn’t made that decision. One such was a conversation this week. There were two parents with primary age sons, both with diagnoses of Aspergers and ADHD, and the discussion was about their concerns about aspects of their sons’ behaviours which were a cause for concern. As they spoke of some of their young sons’ aggressive acts, fascination with their bodies, and threats of violence to the point of murder, I was so reminded of my experiences with my son when he was much younger. Like them, I had been concerned by the cold and calculating way he had spoken of killing, and, like them, I was terrified that I might have a psychopathic killer as a son. I had forgotten those thoughts and feelings, but as I participated in this conversation, I remembered some of those dark times, and was so thankful that my son, now adult, is so different from what I feared he might be. Although nobody can guarantee how any child will develop, it brought some reassurance to these women that my son was now OK. But for me there was the dilemma of how do I include some of this content in my discussion of the struggles parents face in raising young people with ASDs.