Top 10 tips from Autistic parents for Autistic expectant parents

“Being diagnosed so late in life and having done so after a lot of research into both ADHD and autism means that I’m still coming to terms with what is coming from where so to speak, how to best accommodate the needs of my disabilities. This also means that my diagnosis was after all of my pregnancy and birth experiences, I thought a lot about these experiences during my assessment process and whether and how I would have approached things differently or been treated differently had I already been diagnosed and had this on my medical record." Avery

“I experienced a huge variation between all four pregnancies which I think is worth noting … My third and fourth pregnancies were significantly more challenging in terms of burnout, exhaustion extreme restriction in foods that were “safe”, reduced capacities for responsibilities due to the fatigue and sensory challenges. I don’t know if it was age or already having a lot of caring responsibilities? The nausea was more extreme and lasting until almost third trimester. Relied on a lot of sameness/routine to stay sane.” Avery

“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 was extremely relieved to learn that my local medical clinic GP, whom I had regularly seen a few years prior (before my formal autism diagnosis), not only was back at the clinic again but also was a Shared Care partner with the Royal Women’s Hospital. We felt very safe with this GP and booked a number of appointments in advance in addition to the regular check-ins to ensure we were able to see them as needed, as this good GP normally booked out months in advance.” Sage

“So I guess practicing advocating for yourself ahead of time of appointments is really important too. The hospital gave me a bit of a list of what they talk about at each appointment, so you have an idea of this week we're going to talk about the GHS swab. This week we're going to talk about the diabetes testing. So if you know what to expect, then you can kind of go in with prepared questions and you can make sure that you become really informed. So I think that's probably the main thing for me, was knowing what to expect.” Bailey

“I would have maybe some fidgets, I would have some loops. I would probably take an eye mask. I would maybe even think about having sunglasses. I'd feel more empowered to tell people that I don't like it when you do this, or please don't move my things when I'm stressed. I like it to be ordered. So in hindsight, now that I know, I feel like I could probably articulate it a lot better and maybe also be able to champion myself in those situations. But until you know what's happening, it's very hard to explain it.” Jordan

“I had already spoken to the anaesthetist over the phone and she explained the procedure. And then I also wanted to see her in person because sometimes I struggle to take in everything. Oh, I also like it in appointments where there's a lot of information, for them to write it down for me, especially if I need to remember something that I don't have to constantly ask questions, the same ones over and over again. So I was going to see her in person. Nearly got to see her in person, but I was going to. But it was good. They took me through the different options for an elective surgery. I could either be awake or I could be asleep, or I could start off being awake and then they could put me to sleep if it got too much.” Sage

“My midwife was nice to me. I only saw her once but she gave me a one-on-one session explaining to me what birth would be like using props, since the group birthing classes had been cancelled due to COVID. She also organised for me to see a social worker a few weeks before I was due to give birth. The social worker gave me a tour of the birthing suite and even though she said I probably wouldn’t need it, she also gave me a tour of the special care unit, just in case. She organised for me to stay in a private room in the quieter end of the maternity ward and she made sure my husband had an exemption from the COVID restrictions so that he wouldn’t have to leave after the birth. I don’t think I would have coped at all post-birth if she hadn’t done this.” Bailey

“I think I've always felt a bit like I'm being too demanding or I'm being a bit of a pain, asking for more information or asking about the process of things. But I think since having the diagnosis I've been like, no, actually this is something quite reasonable that I could ask for. And it's not going to take them too much time to show me around or to just explain things in a little bit more detail.” Bella

If you can’t tour, get pictures! They sent me pictures of the room, and on the day they sort of had someone come in with me and explain there's going to be this many people and they're going to be doing these things … But having them walk me through it, they sent me photos, I could look at that ahead of time. I think that really helped. That's something that I try and request ahead of time for something that I'm not really sure of, to help with that sort of what's going to happen. Like, planning and being able to visualise it is really helpful.” Bella

“I think it's predominantly been pretty scary. I don't like change at all, and I guess pregnancy has been a lot of changes, and obviously, the upcoming change, actually, having kids is pretty overwhelming as well. Yeah, that's been scary. And then, obviously, the medical side of things as well. We went to weekly scans at 16 weeks, and then twice weekly scans at maybe 20 weeks, and then lots of OB appointments and things as well. It's just been a lot of trying not to panic, wanting to research, trying not to research too much. Yeah, scary predominantly ... And then, I guess, also pretty lonely. I feel like I don't really have anyone to talk to about it. I've got one close friend that I just know online. I talk to her about it, but she obviously doesn't like sitting with uncomfortable emotions, so she's like, "Oh, hopefully it'll be fine. They should be fine." I just want someone to be like, "That sucks." It's not fair that it's hard, so feeling a bit under-supported as well.” Dakota

“I'm linked in with the Enhanced Maternal and Child Health program. That kind of just eases my anxiety a little bit, because especially now, there's eight weeks between appointments, and it's too long to not see someone. And so, I've had an Enhanced Maternal and Child Health appointment, where she came to my house, and she looked at [my baby], and just checked in. And she was the one that was like, "Yeah, you need to go to the doctor about those nipples.” Alex

“The social worker that I saw before I gave birth also organised for me to be put in a special “enhanced” program with the maternal and child health nurse. So instead of me having to go to a centre for appointments, the nurse comes to my house instead. This is much better for me than when I had to go to midwife appointments at the centre, because I can’t drive and because I get anxiety going to strange places. The best part though, is that it is always the same nurse that sees us. Even now [my child] is almost 4 years old and the same nurse that saw him when he was first born came again just recently for his three-and-a-half year appointment. She was also the one who helped me get in touch with a psychologist to get my official autism diagnosis.” Bailey

“The WIN supports came and did weekly home visits for the first six weeks, I think it was. I have no idea how anyone else manages having a baby without this weekly support as it was a huge lifeline to us. They taught us most of how to care for bub in those early days, not because we hadn’t already learnt how before and thoroughly researched it ourselves, but because we were severely struggling to access our own knowledge, to assess options and to make decisions for bub amidst the extreme stress and sleep deprivation.” Sage

“I think one of the things that I've found so helpful ... they have parent groups set up by the council. And [my baby] was in the hospital for so long that the parent groups didn't really kick in until ... well, I was supposed to start in March. And that's right around my exam time, and so I couldn't go to any of them because when I have stressful things, I find it hard to leave the house. So I couldn't start a parent group until three weeks ago. And it has been amazing because I don't feel so alone, and there are so many things that I didn't know, that I now know from my own experience, but I could have learned it from someone else so I didn't have to go through the trouble of it.

I think it would've been nice to have had a parent group that had started before [my baby] left the hospital, and even one with online options that went for longer term, because I found it so helpful hearing other parents' experiences. Even though, when I went to it the first time, I was really worried, thinking that because my experience is so specific, it's layer on layer on layer of something very specific, I didn't think that I would fit in. But I do. And just hearing other parents asking the same questions that I have, and having the same concerns that I have, it's really helpful.” Alex

“Support in terms of being able to reach out to a network of close friends with babies has been invaluable, I only really had this from baby number two but it has strengthened ever since and an invaluable resource. I hate the idea of mothers groups and have never tried them but people I already like who know me? That’s who I care about sharing the trouble with.” Avery

“I got a bit myopic about birth and failed to prepare for early parenthood. My partner read a collection of books on early parenthood. I remember from about halfway through the pregnancy finding trying to consider early parenthood to be too difficult as I could not comprehend the birth itself and so could not consider what was next. I have a very linear approach to planning and if one of the steps in the path is obscured it makes it extremely difficult for me to think about what comes after it. This was what happened to me with planning for early parenting after birth.” Sage

“I also needed probably someone to help read through paperwork with me because I'm also dyslexic, but I am a good reader. It's just that when I was in that state of mind, I needed someone to help come focus me, and that meant reading the important things, and highlighting the important things in those paperwork, and what needed to be done now, and what could wait. I just needed that because I found it very overwhelming, and sometimes I had my focus and attention in a good place but other times I didn't, and I didn't know it then either.” Alex