Parents' perceptions of communication with professionals during the diagnosis of autism

Abstract

In order to obtain the views of parents concerning their perceptions of the process of getting a diagnosis of an autistic spectrum disorder (ASD) for their child, 15 focus groups were conducted across a range of locations in England. These groups were split into parents of preschool-, primary- and secondary-aged children who had recently received an ASD diagnosis. At the time of diagnosis, most of the parents wished for a quicker and easier process. In particular, they would prefer the procedure to have a more coherent structure and content. They also requested greater professional training about ASD, in particular, regarding the information that professionals possess, and the interpersonal skills of some professionals. The idea of broad information sheets to be provided to parents at the time of diagnosis would be of value, especially to combat negative information provided from other sources.

Experiences of Receiving a Diagnosis of Autism Spectrum Disorder: A Survey of Adults in the United Kingdom

“…(1) Time taken to get a diagnosis: Several studies have found that a quicker journey through the diagnostic process results in increased satisfaction (Howlin & Moore, 1997;Osbourne & Reed, 2008;Siklos & Kerns, 2007;Smith, Chung, & Vostanis, 1994). It was hypothesised that those who experienced fewer delays between first seeking help and receving a diagnosis would be more satisfied.…”

“…3) The quality of information given at diagnosis: Research has shown that parents who are well-informed about the nature of ASDs, including how these may affect their child and where they can go for help, are more likely to be satisfied with the care they receive (Hasnat & Graves, 2000;Mansell & Morris, 2004;Osbourne & Reed, 2008). It was predicted that overall satisfaction would be greatest amongst those who rated the provison of information at diagnosis highly.…”

GPs’ confidence in caring for their patients on the autism spectrum: an online self-report study

“…Particular frustration relates to the lengthy delays associated with the process (1,10). These delays can postpone access to services and limit confidence in their clinicians' ability to help, during or after diagnosis (1,10,11,12). This, in turn, has led to calls for increased training on autism for GPs and other frontline professionals (13).…”

“…Given the significant challenges these respondents' reported, it is unsurprising that they expressed a desire for more autism training. Currently, GPs appear to rely on their personal connections of autism (through family members, friends, colleagues) as a source of tacit 12 knowledge -which may provide a more visceral and more nuanced appreciation of the realities of autism (14,18). An overreliance on subjective, personal knowledge could, however, afford a narrow, idiosyncratic view of what autism is, potentially causing clinicians to miss the signs in some individuals, potentially leading to disparities in healthcare provision (39).…”

Invisible work of using and monitoring knowledge by parents (end-users) of children with chronic conditions

“…Examination of parents' health information sources reveal that parents use a large number and wide variety of sources such as newsletters, conferences, meetings, magazines and television [8,11]. Parents' information seeking patterns have been found to change over time and relate to their children's immediate needs and concerns [8,12,13] Lastly, parents gauge the quality of the information that is given to them and desire guidance when seeking health information independently [7,11,12,14]. These studies suggest that parents engage in many activities related to accessing information however how parents actually use health information in caring for their children or in working with health providers or teachers is unknown.…”