'You know what boys are like': pre-diagnosis experiences of parents of children with autism spectrum conditions.

BACKGROUND: The importance of early identification and intervention for children with autism spectrum conditions (ASC) has been established. However, there are often considerable delays from initial concern (by parent or professional) to diagnosis. Little is known about parents' experiences of primary care in the pre-diagnosis period. AIM: To identify feasible improvements to the management of primary care consultations with parents of children who might have ASC. DESIGN AND
SETTING: UK-based qualitative interview study.
METHOD: Semi-structured interviews with a diverse qualitative sample of 24 parents of children, aged between 3 and 11 years, who were diagnosed with ASC.
RESULTS: Three types of parental concern emerged: first, parents who had no concerns about their children's development before their diagnosis; secondly, parents who reported that they had some concerns but had not raised them with health professionals (passive concern); and thirdly, parents who had raised concerns about their children with health professionals (active concern). The passively concerned parents could not pin down exactly what it was about their children's development that concerned them. Many of the actively concerned parents had been prematurely reassured by health professionals that there was nothing wrong. This left them feeling isolated and alone. Actively concerned parents who already had a child diagnosed with ASC did not experience a delay in diagnosis.
CONCLUSION: Health professionals should acknowledge parents' concerns carefully; contrary to intentions, early reassurance may result in parents feeling that their concerns have not been heard. Parents may be the best resource in identifying ASC.