Parents' perceptions of communication with professionals during the diagnosis of autism.
Parents want a simple, hopeful info sheet and a named contact the day their child is diagnosed with autism.
01Research in Context
What this study did
Porter et al. (2008) ran small parent focus groups across England. They asked mums and dads how the autism diagnosis felt and what staff said or did.
Parents told stories of long waits, mixed messages, and little written help. The team wrote down every word and grouped the comments into themes.
What they found
Parents want a clear road map the day they hear the word autism. They asked for a short, hopeful sheet they can take home.
They also want one named person to call and faster next steps. Without these, families feel lost and worry more.
How this fits with other research
Mansell et al. (2004) asked the same UK parents to fill a survey four years earlier. The same gripes—delays and poor info—show up, so the problems are steady, not new.
Mulligan et al. (2010) later tested the very booklet parents asked for. Families who got it said it filled the exact gap Porter et al. (2008) found.
Mulder et al. (2020) in Australia counted the wait: parents told to “wait and see” lost almost a full year. This number backs the UK parents’ call for speed.
Why it matters
You can fix two pain points right now. First, hand every family a one-page sheet with next steps, websites, and a hopeful note the same day you share the news. Second, give them one named contact, even if it’s just a scheduler, so they leave with a person, not a mystery. These tiny moves cut parent stress and may speed your own referral queue because families stop ringing every department for answers.
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02At a glance
03Original 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.
Autism : the international journal of research and practice, 2008 · doi:10.1177/1362361307089517