Rhi is a late-diagnosed writer, playwright, public speaker, and mother of five from Wales. She started her own theater company, Autact Theatre CIC, and her award-winning play, The Duck, has been performed at theaters across the UK. She also delivers training workshops and talks on a range of topics surrounding autism, such as autism in women, health and wellbeing, supporting Autistic people in the workplace, creativity, and the value of a diagnosis. This week Rhi shared her experiences advocating for herself during childbirth, managing life in the middle of the pandemic, and her current advocacy interests.
How did you become aware of your Autistic identity? What prompted you to pursue a diagnosis as an adult?
I had always felt different but assumed that we were all struggling with these things and had learnt over the years that asking questions just made you seem more different. I spent a lot of my teen years and time as a young adult studying how other people behaved and became very good at masking and mirroring in order to cover up my difficulties.
When I was about 30, I read an article in a magazine about a late-diagnosed autistic woman and was shocked to see myself described in great detail. All the things I tried to hide were right there. I showed it to my husband, and he just said, “That’s you!” It took me a few more years before I decided to find out for sure, and finally got my formal diagnosis when I was 35. I needed to know one way or the other. I wasn’t going to stop comparing myself to everyone else until I knew for sure – I was my own worst enemy. Once I was diagnosed, I could see that pushing myself to react to things like a non-autistic person was only going to end up damaging me. It gave me permission to really work out who I am and how I work.
Were you aware you were Autistic before your pregnancies? You have written about how Autistic women handle pain differently than NTs and how this can be problematic during childbirth. In what ways did you have to advocate for yourself prior to childbirth?
I was only really aware for one of my pregnancies. My first pregnancy was made so much harder by not being able to communicate my needs at all in labour. I remember one moment when my birth partner put their hand on my leg during a contraction. I desperately didn’t want to be touched, but had no words to express that. It seemed an age before they moved their hand, and it made it so much harder to focus on getting through it.
Once I’d been through it once, I was better able to explain what I would need beforehand. It’s really important for me that the sensory environment is right; no one should touch me without expressly being asked, no one should be talking during contractions, lights should be dim, it should be quiet. All these things help me focus and move through the process.
Having a midwife who trusted me always made a huge difference. I have shocked midwives by how verbal and lucid I can be between contractions – right up to birth – and how that is all completely gone during contractions.
With my youngest daughter I had a home birth, and due to a very fast labour, the midwife only arrived with about ten minutes to spare. When she came in, I calmly explained how close my contractions were and how I thought I was ready to push. Afterwards she confided that I was so calm that she thought I was talking utter nonsense, until she saw the next contraction and literally ran to my side. Two more contractions and there was a baby! It can be difficult when people expect you to be performing your pain in a way they recognise at a time when you have nothing spare to spend on doing the right facial expressions!
In what ways has it been easier (and more difficult) being responsible for five children in the middle of the pandemic (as opposed to living alone)?
It’s been a great reason to build a structured routine quickly! It was also good to have my problem-solving brain take over in the early days. There was so much change and everything was new and scary, having the children need me to be their stable force meant I just had to get on with it.
I’m not going to pretend that I didn’t crave some alone time though. I need recovery time to deal with change, and the sooner I get it, the less exhausted I get, but that wasn’t really an option. They all needed me for reassurance and to be there for them, which took a lot of energy. It was also tricky home schooling children at very different stages of their education, but we managed. More than managed! We’ve genuinely had some amazing highs to go with the lows this year.
Based on your personal experience (or the experience of others whom you have spoken with), what are some important supports that should be in place for pregnant Autistic women or new Autistic mothers?
Information is probably the big one for me. I wanted to really know what it was all going to be like – there are some great online forums for that sort of thing. I know that non-autistic people can be made more worried by factual information about things like pain, but for me, I find that comforting. I want a dentist to tell me it’ll hurt, I don’t want pain described as a slight pinch! I find that interpretation confusing and upsetting.
It would also be great to have autistic support groups for new mums. It can be so isolating. I remember forcing myself to go along to toddler groups in order to meet people and spending the whole time screaming on the inside. It was all too loud, too much small-talk, too new; what I wanted was to be able to make one friend who I could walk with and talk about anything except babies! It was hard going at times.
Autistic people need social interaction too, but often those lifelines for other mums are just too much for autistic mothers to access. It’s another barrier that just isn’t considered. Everyone’s supposed to love going to baby and toddler groups, and I loathed them. I much preferred things like baby massage where we would all be focused on doing something practical.
Tell me about your play, The Duck. What is it about, and is it being performed anywhere now–or are there plans for its continued production post-pandemic?
The Duck is a play about a late-diagnosed autistic woman, who has just received her diagnosis, working back through her memories and experiences and leading to understand herself. It’s been touring the U.K. since 2018, directed by Jo Loyn and starring Lucy Theobald. Sadly our 2020 tour was cancelled, and we don’t have any future dates planned yet, but I did make a reading of the play available on a pay-as-you-feel basis at autact.co.uk/audio. The response to it has been amazing. It’s wonderful to feel understood!
I’ve had to do so much adapting this year as so much of my work was cancelled. At the moment the future of The Duck is uncertain, but I know I’ll always keep writing and wanting to make the world a better place.
What speaking topics are you most passionate about?
Inclusion is a big one; so many of the ways we can improve things for autistic people help everyone. It seems so obvious to me that you should consider sensory environments when you create work spaces, that you should give more information than people need, that you should consider that other people may have different communication preferences to you.
I’m also passionate about getting autistic women and girls recognised and supported. There has been such a longstanding bias when diagnosing women. I know some people say that it’s down to autistic girls being better at hiding their traits, but that feels like a cop out to me. When you look for autistic girls, you find them, which suggests we’re still not looking hard enough. It’s one of the reasons I wrote my play The Duck; I wrote the play that would have made me realise I wasn’t alone in how I saw the world.
Is there anything else you’d like to talk about that I didn’t ask?
So much of what I do comes down to kindness really. If we all stop assuming everyone else thinks just like us, and work towards understanding instead, then the world would be a better place. When I found out I was autistic, it wasn’t really the autism that was the big thing I discovered, it was finding out that the rest of the world didn’t think like me. I love our differences, I think we all have strengths and difficulties, and the more different we are, the more we can balance those things out. We only get to see the whole picture when we’ve seen it through more eyes than our own.
Connect with Rhi
Autism and Expectations–Demystifying Autism