Four-year delay in getting autism diagnosis, but online tools can cut the wait

Parents concerned that their child may have autism spectrum disorder (ASD) can wait up to four years for a formal diagnosis, but online assessments can help reduce these delays, two new research studies from Swansea University have shown.

In the first study, 200 parents and carers of children with experience of ASD services were surveyed. Parents had been prompted to seek help by concerns such as sleeping and eating problems, high activity level, tantrums, wandering, aggressive or destructive behaviour and difficulties with playing or interacting with others.

The survey showed:

• Most parents saw five or more professionals before obtaining a formal diagnosis of ASD for their child;
• The average delay between first seeking help and obtaining a diagnosis was 46 months.

Manahil Alfuraydan, Swansea University Medical School, who led the study, said:

“Our research shows the scale of the problem currently facing parents and carers. Delays can be due to a shortage of expertise, to several appointments being necessary, and the fact that the process can be very stressful for individuals who might later be diagnosed with ASD. As these are specialist services, they can also require lots of travelling for families and experts alike.

"Delays in diagnosis can lead to poor outcomes for both the families and individuals.”

However, a second research study just published by the Swansea team offers hope of improving the situation.

It showed that using internet-based tools in healthcare – a field known as telehealth – has the potential to improve services in autism care when used alongside existing methods.

The results are timely as the COVID-19 pandemic is prompting fresh thinking about providing services online.

Telehealth is already used successfully in areas such as radiology, cardiology, mental health, and for monitoring patients with diabetes and hypertension.

The research team surveyed twenty years’ worth of research in fields related to autism and telehealth, and identified two main approaches to using telehealth:

1. Real-Time method – for example, videoconferencing, which enables different health professionals to meet the family to assess the child or adult, reducing the need for travel or multiple appointments
2. Store-and-Forward method – this provides a way for parents/carers to upload videos of a child’s behaviour to a web portal, so clinicians see a child in their everyday surroundings

The team found evidence that these two approaches:

• are acceptable to both families and clinicians;
• have good diagnostic accuracy;
• enable families from a wider area to access professionals;
• reduce costs for accessing care;
• enable the natural behaviours in the home setting to be observed;
• may enable both parents in divorced families to contribute to the diagnostic process.

Professor Sinead Brophy of The National Centre for Population Health & Wellbeing Research, at Population Data Science at Swansea University Medical School, said:

"Telehealth can potentially improve the efficiency of the diagnosis process for ASD.

"The evidence reviewed in our study shows that it can reduce delays and improve outcomes when used in conjunction with existing methods. It could be of particular benefit to those with clear autism traits and adults with ASD.”

Dr Jodie Croxall, Director of the BSc Population Health and Medical Sciences Programme, Swansea University Medical School, supervisor of the research, said:

“They reduce the time to diagnosis, particularly for those with more severe autism where there is good agreement in terms of the diagnosis compared to the face to face methods.

"Our study highlights the potential of telehealth. Larger randomised controlled trials of this technology in relation to ASD are warranted.”

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Health and Care Research Wales funds The National Centre for Population Health & Wellbeing Research. The above article has been taken from a press release which first featured on the Swansea University website.