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

Abstract

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.

Preschoolers assessed for autism: Parent and teacher experiences of the diagnostic process

“…This is in line with previous research (Chamak et al, 2011;Ozonoff et al, 2009;Ryan & Salisbury, 2012;Siklos & Kerns, 2007). Our clinical experience is that parents, at their first visit to the clinic, do not spontaneously express great concerns, but the further into the diagnostic ''process'' they proceed, the more they elaborate on problems that they have already noted, usually several months before a referral for ASD assessment was made.…”

Parents' voices: “Our process of advocating for our child with autism.” A meta‐synthesis of parents' perspectives

“…“… it was just really a case of trying to get somebody to listen to us … they just didn't seem to latch on to the fact that this kid had a problem. They just thought he was underdeveloped … And we sort of felt on our own for a while, didn't we?” (Ryan & Salisbury, , p. e381).…”

Paediatric multiple sclerosis: a qualitative study of families’ diagnosis experiences

“…A lack of awareness, clinical expertise and specialist services appears to increase the risk of diagnosis delay and suboptimal care for children/adolescents with rare conditions 35 36. An alternative approach is required that does not depend on parents’ persistence to access expertise on their child's behalf 37. In particular, clinicians need to recognise that children/adolescents and parents are a valuable source of information about the child's health and require appropriate specialist support during the often lengthy and challenging diagnostic process 32…”