Top 10 tips from Autistic parents to healthcare professionals

“And specifically for Autistic people, I think the best thing to do is provide support without questioning their parenting, and without questioning their ability to be a parent. Because I'm always worried about that, that someone will question. And thankfully, the support that I have received has never questioned it. Usually the people who are most uninformed are the ones that think that I'm going to be a bad parent, or something like that. Or I think it because I perceive it from other people, because I think so much, so highly, about what other people think, that it takes over my own thoughts. So yeah. I don't know whether any of that made sense.” Alex

“Interpersonally I felt supported by staff who respected my boundaries and preferences … To reiterate what was helpful to me: being treated as a human being, not being touched without consent, having my competence assumed and feelings not disregarded, having understanding about the necessity for certain interventions and monitoring and clear expectations for how they would be conducted.” Avery

“My local hospital was great, they were all very knowable about autism and gave me extra time and really tried to explain in detail any questions that I had. They also made sure that I was aware I had access to a social worker in the hospital if I required them, and that there were classes that I could attend for early parenting, labour and delivery and breastfeeding which I found all these super helpful.” Kimmi

“[My midwife] was really lovely and I felt very heard, supported and understood by them. She never made me feel judged. She accepted the more unusual aspects of my beliefs of going for a gender neutral they/them pronouns early years parenting approach. I was extremely grateful that in my first appointment she was not offended by, but instead understood and changed her approach to my pregnancy support to suit my needs. I had expressed discomfort and confusion at the super emotive “fluffy” goddess mother kind of pregnancy language, wherein I felt fears were too readily dismissed with various ambiguous statements about a woman’s innate ability to become a mother, e.g., “our bodies were made for this”. As I do not connect to such sentiments at all, they caused me to feel I was missing something that the health professionals were communicating would be essential to getting me through the scariest aspects of giving birth. This in turn increased the fear and anxiety I had about the process.” Sage

“What helped me was the midwife could see I was really upset, and she sort of stopped what everyone was doing for a second, and she looked at me, really, eye contact. She was like, "We need to do this because of this reason." And it was like, we need to do this because of this. And at that point I was like, "Yes, let's just do it." I think that being communicated with so directly and having a reason for all of the people ... And she was really just kind of, not firm, but she was very straightforward. That really helped me to know that it was really necessary, and it would be over soon basically.” Bailey

“I really appreciated the two doctors that came in after the bad doctor experience and supported me for the birthing who sat in chairs at the end of the bed and calmly discussed where I and baby were at and then told me directly what was happening and what options were there and what they recommended.” Sage

“It would have been helpful if someone had talked to me about what was happening when doctors would come rushing in. Both when I got strapped to the bed and just after Aidan was born. They would just work and talk to each other and not talk to me. I just wanted someone to explain to me what was happening. Apart from the episiotomy, which was explained to me, everything else that happened to me during labour, including the cord around the neck, Aidan’s and my own low heart rates, the vacuum extraction and the forceps, I found out by reading the report afterwards. Even after Aidan was taken away, I had to ask is someone still touching me? Because no one told me I had to be stitched back up, they just went and did it without telling me.” Bailey

“One [person I interact with a lot] is my OB, because we're going privately. Interactions with him, he is strange because oftentimes the appointments feel quite rushed. If I have questions, he'll answer them, but oftentimes like, yep, everything's good, good to go kind of thing. But then if I ever say explicitly that I'm anxious or worried, he will spend more time talking to me and be caring, but then I don't think I'm very good at expressing when I need that all the time.” Dakota

“I mean, healthcare professionals in general could get better at providing just some bullet point notes of what was said, what were the decisions we made, what are the next steps to give. I think if I went into pregnancy being diagnosed Autistic already, I would've asked for that.” Nic

“Obviously its not a great thing to have a premature baby but there were a lot of positives for me having autism. I love routine and structure. So having a premature baby, they have to be on a routine. You’ve got to monitor when they sleep, everything's on a clock basis like okay he needs to be fed at one o’clock. He needs a feed at 3 o’clock, so it was very easy for me to follow. So I think that was one of the benefits of having a premature baby was that we were already put into a structure at the hospital. So when we came home it was the same structure, nothing changed.

Yeah obviously being in the hospital wasn’t great but in terms of you know, getting to learn how to feed my baby, how to burp the baby how to change the baby, how to wash the baby ... Everything was done slowly because obviously he’s prem. He sort of does everything slower and so do I. But the structure side of things was really great. My lactation consultant gave me a whiteboard marker to mark everything down. I had like a little timeframe going on the whiteboard. Okay, he’s going to eat at this time. I was able to set my alarm to my phone to say I’ll get the feed times right. You get to go feed, you know at the nursey to feed the baby and I was able to do my pumping sessions there as well. So it was very structured, and I loved it.” Kimmi

“What would have been helpful was continuity of care but I didn’t have the privilege of experiencing that for any of my prenatal or birth care. The social drain of having to meet a fresh new person every time from scratch made the appointments that much more difficult, I think that people with neurotypes which impact social interaction, like autism, should have priority access to the programs where they try to keep you in the same small team.” Avery

“I hated going to midwife appointments. I never saw the same midwife twice, there was a different one each time. I would be so anxious not knowing who I was going to see.” Bailey

“I wish the doctor that came in when the birth first started and put their interpersonal expectations on me and rubbed my arms lots and put their face down in front of my face on the other side of the bed rail I was clinging to hadn’t done any of that as it threw me into multiple levels of sensory and mental distress. I started sinking into myself and missing things that were being said by the doctor and the others in the room. So, then I got extremely panicked that I was missing crucial information about the health and status of baby, and feared that due to my own limitations I might fail my baby during the birthing and endanger their life. This experience still haunts me.” Sage

“I get the feeling that healthcare professionals think they are trying to give me peace of mind when they say that Aidan doesn’t seem to be Autistic. They tell me it’s a good thing and I don’t need to worry. To me being Autistic isn’t a bad thing though, I actually would prefer if he was like me. Everyone wants their kid to take after them I think. But even the nurse who helped me get my own diagnosis is always telling me how good it is that Aidan can make eye contact. But if it’s so good that he isn’t Autistic, that must mean that being Autistic, and being me, is bad. It’s not very nice but I’m not sure they even realise that is what they are saying.” Bailey

“I guess [they need to] first acknowledge their own internal bias. They think that autism is bad and assume that I must think the same, despite being Autistic myself. Health professionals must think of autism like a disease, where you can live with it, but you would rather your kids not have to. But if instead they just thought of it as a different neurotype, with its own strengths and challenges, then maybe they could be more supportive of helping us find out what works best for our family. At this stage, I still think it’s too early to tell if [my son] is Autistic or not. No one noticed it in me until I was 19 because that’s when the demands on me to be independent were greater than my capacity to meet them. [My son] is 3 years old. He doesn’t have any demands to be independent yet, so of course he is coping with life just fine. I am Autistic, my dad is Autistic, [my partner] is dyslexic, my brothers and my mum have ADHD. The chances of [my son] being neurodivergent seem very high. But health professionals want to ignore that and say no he’s fine, he’s coping well. Yes he is fine and he is coping well. But that doesn’t automatically mean he is not neurodivergent." Bailey

“For me I feel that non-binary describes me best as I don’t really feel any connection with being female and don’t feel like it describes me completely accurately. It might be because I’m Autistic and don’t really relate to most women, and it could also be related to me being asexual, as I don’t feel the attraction to men that most women feel either. As far as my parenthood journey, one thing I had to get used to was the insistence that I be called “Mum” (my mum is called Mum, but it doesn’t suit me) … But everyone around him was constantly telling him that my name was Mum or Mummy … People also expect that because I am Mum, I am the one who has all the caring responsibilities. I am listed as the “primary carer” for his childcare subsidy because I was the one that took 12-months leave when Aidan was born, but if you look at who does most for Aidan it is actually Sean. He drives him to childcare every morning and picks him up in the evening. He takes him to all of his appointments. He gets him dressed in the morning, cooks his food and makes sure he has a bath. I have more of a secondary role I think. But the staff members at childcare will say things to Sean like check with Aidan’s mum if he has a water bottle, and if we go to an appointment for Aidan all together, professionals will direct their questions about Aidan to me, even though Sean is the one that knows all the answers.” Bailey

“A lot of Autistic women may also be uncomfortable/not confident in even asking for accommodations/birth plan requests. Having someone informed actually ask them, and providing examples of the type of accommodations that are actually available would be a huge help. Many don't know what type of accommodations are ok to ask for/available. This would have helped me, as an at the time undiagnosed Autistic person, feel safe and comfortable to advocate for myself better.” Nic