Parents' experiences of the service pathway to an autism diagnosis for their child: What predicts an early diagnosis in Australia?
Skip the “wait-and-see” step—parents told to wait averaged almost a year longer to secure an autism diagnosis.
01Research in Context
What this study did
Mulder et al. (2020) asked 136 Australian parents to recall the road to their child’s autism diagnosis.
Parents wrote how long it took from first worry to final answer. They also ticked boxes about advice they got, family structure, and child age.
What they found
Three things stretched the wait: a doctor saying “wait and see,” being the only caregiver, and the child already being older.
Families told to wait-and-see waited almost a full year longer than those who were sent straight on for assessment.
How this fits with other research
Mansell et al. (2004) in the UK already heard parents complain about long waits. The new numbers show which waits you can predict and maybe prevent.
Wilson et al. (2021) talked to the same Australian parent group and found that after the long wait they still juggle cost, travel, and stress when picking interventions. Put together, the story is: delay first, then more hurdles.
Pye et al. (2024) show that once diagnosis finally happens, kids now pull down an average of two NDIS-funded therapies. The wait hurts twice—lost early time plus later service scramble.
Why it matters
If a parent says “I’m worried,” write the referral now. Skip the watch-and-wait step. Flag single-caregiver homes and older kids for priority intake. Cutting the first delay gives families quicker access to the services the NDIS data show they will later chase.
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02At a glance
03Original abstract
BACKGROUND: The early identification and diagnosis of autism is critical to ensure access to appropriate early intervention and support. Few studies have examined the association between potentially modifiable characteristics of the service system and timelier diagnosis. METHODS: An online survey was conducted to examine parental experiences of service pathways to an autism diagnosis for their child, and to identify child, family, and service level characteristics that predict the age and timeliness of diagnosis. Participants included 107 parents of children with autism who were diagnosed by 7 years of age and a smaller subgroup of 29 parents who were diagnosed after 7 years of age. RESULTS: Parents of younger children reported that, on average, it took approximately 12 months and 8 professional consultations to receive a confirmed diagnosis for their child. Parents of older children, as well as those who reported they were a sole caregiver, or were advised by professionals to 'wait and see', reported more time between first raising concerns and diagnosis. CONCLUSIONS: The findings reiterate the importance of proactive professional responses to parental concerns. They also highlight the need for standardised screening and assessment and professional development and training to build capacity in the sector to deliver timely and accurate autism diagnoses.
Research in developmental disabilities, 2020 · doi:10.1016/j.ridd.2020.103689