Autism Spectrum Australia has developed an online hub for autistic women expecting a baby. Dr Abigail Love runs the hub and says it's an invaluable resource for expectant mothers and medical practitioners.
00:00We've created a hub of research-informed resources and training to offer guidance and support validation to autistic people who are pregnant or in that early parenthood period, and then also and most importantly to offer training to the professionals that are supporting them how to deliver respectful, neuroaffirming care.
00:21So can you give us a sense of how difficult navigating the whole pregnancy care system is for a woman with autism over and above, of course, the usual challenges of having a baby?
00:33Yeah, that's exactly right. So having a baby is tricky, is hard, but what we learned in our research just last year in Australia, we conducted some research interviewing autistic women
00:45and really heard about the challenges they had navigating the communication differences with healthcare professionals trying to figure out that literacy,
00:54to navigate different ways of communicating, to navigate sensory challenges, the sensory challenges that come with just being pregnant in general,
01:02but also that come with interacting in a really tricky, overwhelming healthcare space with bright lights and unpredictable things.
01:10So those sensory challenges and the communication challenges all make it really hard to get good quality care and we don't know enough,
01:19we don't have enough training in the healthcare space to deliver that high quality care yet.
01:24And if a woman is feeling anxious and that brings its own issues with it, does it?
01:29Absolutely. So we know that anxiety and depression, prenatal and postnatal are both, we have higher incidence of this in autistic people during pregnancy
01:39and in that perinatal period and so carrying that extra level of anxiety and not knowing how to communicate with healthcare workers
01:48and healthcare workers not understanding the differences and the nuances in autistic people themselves as well.
01:54So it's this back and forth, it's not just about autistic people not understanding.
01:59And Abi, is there currently an acknowledgement of autism or even questions about the condition to prospective mums during maternity care?
02:07Yeah, that's a great question. So we don't actually have good numbers around autistic pregnancy experiences in Australia because we don't have a standardized way of collecting this data at hospitals.
02:18So there's no standardized disability indicator. Some hospitals do a great job of it. Others do it differently or don't even ask.
02:25So we don't have great data on these experiences and things like higher rates of cesarean sections in early preterm birth.
02:33We're really just guessing on and we really need to kind of draw attention to the lack of standardized disability indicator.
02:42So what are the best ways then to help autistic women going through pregnancy and beyond?
02:47What are the main aspects that need to be considered and what can be done to help just make the whole process easier for them?
02:54Yeah, so we've highlighted a lot of resources and strategies and training on the hub, but really we're trying to draw professionals and clinicians' attention to different ways of communicating.
03:05So asking what's the best way to communicate, how can knowledge be shared with these people when they're coming through the midwifery system, for example, increasing continuity of care any way we can.
03:17So trying to increase that predictability, thinking about things like overwhelming sensory experiences and how we can reduce that either by asking people what their needs are or by increasing things like telehealth appointments or GP appointments in a more predictable and safe environment.
03:36But really it's about providing neuroaffirming care, which is an individualized care model.
03:40It means thinking about that person and their needs and delivering care, adapting care to their needs.
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