Aspect Autism Friendly has partnered with BreastScreen NSW, South Western Sydney, to address low breast screening rates among autistic women and those with intellectual disabilities.
It comes after Aspect Autism Friendly reviewed two screening sites in South Western Sydney and the online booking process, and made some recommendations on how to improve accessibility.
The recommendations were:
- Enhancing the online booking system to include text-based options for those who find phone calls challenging.
- Providing clear, accessible pre-visit information, such as a step-by-step visual guide of the screening process.
- Creating quieter waiting areas and offering flexible appointment times, such as first or last appointments of the day.
- Training healthcare staff to improve communication and understanding of autism-specific needs.
It’s hoped the findings from the initiative can be shared around the country.
Dr Tom Tutton, executive manager at Aspect Autism Friendly, said it’s an urgent initiative, especially considering 1 in 40 Australians are diagnosed autistic.
“Almost 50 percent of NSW women aged 50-74 have not had their recommended breast screen in the past two years, and for autistic women, the numbers are likely to be even lower,” Dr Tutton said.
“It is a privilege to partner with BreastScreen NSW to better understand the barriers preventing women on the autism spectrum accessing these vital screenings. Through this collaboration, we are ensuring autistic women feel supported in booking and attending their appointments without unnecessary stress or confusion.”
Autistic individuals often face barriers to accessing healthcare, including:
- Difficulty recognising when symptoms require medical attention
- Challenges with phone-based appointment systems
- Communication barriers with healthcare providers
- Feeling misunderstood in medical settings
- Overwhelming sensory environments such as waiting rooms.
These barriers can lead to poorer health outcomes and higher rates of untreated medical conditions.
When it comes to breast screening, additional concerns include fear of the procedure itself, difficulty understanding the importance of mammograms, lack of accessible information and sensory sensitivities in medical environments.
Mandy Williams, director of population health at South Western Sydney Local Health District, said the organisation is committed to equitable access.
“By working with Aspect Autism Friendly, BreastScreen NSW, South Western Sydney, are making meaningful changes to improve the experience for autistic women. These include physical and environmental adjustments, visual stories as part of the pre-screening process, and comprehensive staff training to better understand autism and communicate effectively with neuro-divergent women.”
Working in Partnership senior officer at Aspect and autistic mother of two, Ainslie Robinson, recently walked through the screening process in Liverpool and praised the initiative.
“Healthcare can be daunting for many autistic people, especially when it involves medical equipment and close interaction with staff. Simple adjustments to the booking process and clinical environment can make all the difference—and in this case, could save lives,” she said.