Reflecting on parents' experiences of a child's autism diagnosis

Recent studies of parents’ experiences surrounding an autism diagnosis explored what predicts an early diagnosis and the family’s support needs after their child’s diagnosis. We recently caught up with clinician-researchers, Dr Bent and Dr Rabba, from the Olga Tennison Autism Research Centre to share their key findings on how to provide the best support and care to families at this time.

Tell us about your research regarding parents’ experiences of autism diagnosis?

Our team has recently conducted a series of studies investigating parents’ experiences around the time their child is diagnosed with autism.  We invited parents to share with us how they obtained a diagnosis for their child, and their experiences of the service pathway, through an online survey.  We also explored in-depth what it was like for families following diagnosis through focus groups and semi-structured interviews. Listening to parents’ voices to truly understand their experiences surrounding diagnosis is fundamental to providing best practice support and care to families. This research has allowed us to gain an understanding of what can contribute to families receiving a timely diagnosis for their child, as well as what can make it difficult to access the services they need.  By talking to parents about their support needs following diagnosis we were able to gain the knowledge required to develop appropriate interventions to support families at this critical time. Listening to their lived experiences has helped us to understand parents’ needs, which is critical to improve service delivery and post-diagnostic support.

What were your reasons for researching pathways to, and experiences of, an early autism diagnosis?

By conducting this research, we hope to be able to contribute to a future in which families can access the services and support they need, when they really need it. Research conducted in other countries suggested that parents were generally dissatisfied with the diagnostic process, and that long waiting times to access services as well as the unsatisfactory standard of post-diagnostic support were among their largest concerns. But similar studies had not been conducted in Australia.  While there have been large advances in the early identification and diagnosis of autism, such that it is often possible for children to be diagnosed as pre-schoolers – this is not the case for all families, with many reporting that after they first raised concerns with a professional, it took several years to obtain a diagnosis.  Delays in diagnosis often means that families are unable to access early intervention and family support services, which can contribute to better outcomes later in life.  Furthermore, after receiving a diagnosis, families face a unique set of challenges and parents consistently report the period post-diagnosis as an emotional, overwhelming, and uncertain time. With this in mind, understanding the pathways to an autism diagnosis become more important to ensure adequate family support is provided to parents throughout this process.

What key issues did parents experience in accessing a timely diagnosis for their child?

The process of navigating services in order to obtain an autism diagnosis is complex and places a lot of demands on parents. Many families described their frustration with being told to ‘wait and see’ and felt that their concerns were not always being listened to.  Indeed, more than one third of the parents engaged in our study reported that they were initially told by a health/education professional that ‘there was no problem’, which is concerning given that they all went on to receive a diagnosis.  The process of obtaining an autism diagnosis typically took about one year for parents of younger children, however parents of older children often waited much longer.

What did parents tell you about their experiences and support needs post-diagnosis?

Parents who shared their insights following their child’s early diagnosis revealed that their ability to manage uncertainty, access appropriate supports and resources, and share their child’s diagnosis were critical influences of their post-diagnostic experience. A further crucial finding, which is often underestimated, was self-care. Both mothers and fathers stressed that ‘time-off’ parenting was critical to their overall wellbeing and described it as an opportunity to ‘recharge’. It is important to recognise that promoting self-care in parents can have ripple effects on the entire family’s wellbeing.

Were there any surprises in the parents’ responses? If so, what were they?

One of the greatest surprises was the influence of uncertainty, which is inherent in a diagnosis of autism, and how this affects parents’ emotional wellbeing post-diagnosis. For example, parents reflected on their fear of the unknown which caused much distress and anxiety. Additionally, parents shared the challenges experienced in disclosing the diagnosis and the impact this often has on social and family life. In terms of improving clinical care, this study demonstrated a requirement for diagnosticians to be better equipped to deliver an autism diagnosis with compassion and confidence from an early age.  While the pathway to an autism diagnosis can be difficult for many families, it was positive to hear that obtaining a diagnosis often helped parents to understand their child’s needs and facilitated access to further services and supports.

Overall, what are the conclusions of these studies and where to next with the findings?

This research has helped to demonstrate that, when it comes to autism diagnosis, it is important to support both professionals and parents.  Ongoing professional education is an important component of building the capacity of the sector to deliver timely and accurate diagnoses, with confidence and compassion. We now understand that parents want and need a tailored approach to post-diagnostic support. As a result, we designed and implemented a family clinic guided by parents’ unique needs to support families immediately following their child’s diagnosis. Ultimately, the aim is to provide parents with the best pathways during and following diagnosis so that they can make informed decisions about their child’s early intervention and beyond.

Where can we read more about the research?

A summary of this research can be accessed via the two published articles in their respective journals Research in Developmental Disabilitieshttps://doi.org/10.1016/j.ridd.2020.103689 and Research in Autism Spectrum Disorders https://doi.org/10.1016/j.rasd.2019.101415.

Thanks to Researchers:

Dr Catherine Anne Bent1

1Research Fellow, Olga Tennison Autism Research Centre, School of Psychology and Public Health, La Trobe University.

Dr Aspasia Stacey Rabba1,2

1Affiliate, Olga Tennison Autism Research Centre, School of Psychology and Public Health, La Trobe University, 2The Cooperative Research Centre for Living with Autism.