What it’s like to parent an autistic child: Realities, challenges and lessons learned

Both Emily Writes and Angela Cuming share their personal experiences and challenges in raising children with conditions like autism, Type 1 diabetes, dyspraxia and sensory processing disorders. Photo / 123rf

Columnist, activist and writer Emily Writes and journalist and writer Angela Cuming have been friends for more than seven years, bonding first over a mutual love of all things Christmas, and then the highs and lows of parenting neurodivergent and medically fragile kids. They caught up to chat about Emily’s new podcast The Courage Club, which is designed to keep kids like theirs safe from sexual abuse, and got talking about screen-time, doing Christmas the neurodivergent way and what you should – and shouldn’t - say to parents of autistic children.

Family matters

EMILY: I have two boys. Eddie, 11, is a Type 1 diabetic and has some other medical conditions that go along with it and is immune-compromised, and so we use the label “medically fragile” for Eddie. And then we have Ronnie, 8, who is autistic and has dyspraxia, sensory processing issues and a paediatric feeding disorder.

ANGELA: In my family, there’s Charlie, 9, and then we have identical twin boys Tommy and Henry, 8, who are both autistic and who both have global developmental delay and sensory processing disorders. Tommy also has a severe anxiety disorder that was triggered by a Covid-19 infection, and he had to leave school as a result. We home-school Tommy now, and he’s doing much better.

The Courage Club

ANGELA: Emily, you are part of a new podcast, The Courage Club, which is designed to support the parents of deaf, disabled and neurodiverse children, and keep them safe when it comes to preventing sexual abuse in Aotearoa. Research sadly shows that those with disabilities are more likely to encounter violence and abuse generally, and sexual violence specifically.

As a mum to two disabled and neurodivergent children, this terrifies me. Are they at risk more because of ableism? And where do things like consent and bodily autonomy fit in, because that’s so important when it comes to neurodivergent kids and disabled kids, right? We always tell our boys “your body, your choice”, so we don’t force haircuts or baths, stuff like that.

EMILY: With neurodivergent children, one of the things we’ve talked about in the podcast is that these kids don’t necessarily have that feeling that neurotypicals do. You know, when you’re in a situation and the vibe suddenly changes, and you start to feel like, “Oh, I’m not that safe”. And we know that a lot of neurodivergent children don’t get that feeling. So, we talk about things, like saying to our children, “Hey, you know when the hairs on the back of your neck feel funny?” or “When your tummy starts churning?” We say to pay attention to that, and maybe tell your parents or a trusted adult.

I think it’s also really important that we recognise as adults that it’s not a child’s job to protect themselves from sexual harm. It’s our job as adults to really do everything we possibly can to keep our kids safe and provide what they need and think more about what safety is.

I think that a lot of neurotypical adults or non-disabled people are not great on this. Sometimes around disabled children, they tend to do things like touch their wheelchair, touch their cane, touch mobility aids, without permission. They might pick up a child with a disability when they wouldn’t do that for a child who doesn’t have a disability.

So, I think that there’s a lot of ways that we can be talking to other adults as well about how just because a child has a disability or is non-speaking or has a wheelchair, that doesn’t actually give you permission to overstep boundaries in ways you wouldn’t if they were not disabled.

Columnist, activist and writer Emily Writes has two sons, Ronnie and Eddie, who are neurodivergent and medically fragile. Her new podcast The Courage Club discusses the realities and challenges of family life.

Lessons learned

EMILY: With Ronnie, we had this idea early on around just really wanting him to speak and “communicate” with us. And I think that you unpack a lot of ableism when you’re a parent of a child with a disability. We really learned a lot about how ableist it is to view speaking as the “top” way of communicating, and that it’s the big goal. I learned from Ronnie that there are so many different ways of communicating.

We now get to enjoy the experience of having a child who communicates with us in a range of different ways. Sometimes that’s humming, sometimes that’s echolalia - which is repeating words or phrases from movies, or lyrics from songs, or just words. So, I really love that we have learned through this process to not have a hierarchy on how we communicate, and our kids can communicate just the best way they can and what feels right for them in that moment.

ANGELA: Tommy talks quite a bit, but a lot of it is echolalia and scripting (the use of certain words or phrases), and Henry is what they would classify as semi-verbal; he doesn’t talk much at all. The biggest lesson I’ve learned is that all communication is valid, and the goal for any autistic kid is autonomous communication and not just trying to force them to talk. I remember when they were first diagnosed, their speech and language therapist was doing a home visit, and I was sitting on the floor crying to her and saying the only thing I wanted was to hear Tommy say, “I love you, Mummy.” And she said, “Maybe he tells you that every day already?” And then I thought about all the times Tommy would press his wee face into the back of my head and pat my back and say “so cute, so cute”, and I realised she was right. All along, Tommy had been telling me he loved me, I just wasn’t listening.

Emily Writes with son Ronnie, who is autistic and has dyspraxia, sensory processing issues and a paediatric feeding disorder.

Navigating big events like Christmas

ANGELA: My boys love – LOVE – things like Easter and Halloween and Christmas, and while something like Christmas and Santa can bring them so much joy, it can also be a stressful time for neurodivergent kids and their families.

When our boys were diagnosed, it was right before Christmas, and I remember all these feelings of stress and loneliness and grief because I was looking at all these photos on social media of other families doing Santa photos and going to Christmas lights and parties and stuff, and we were sitting at home in the living room with all the curtains drawn because the boys were so sensitive to sound and light and the outside world in general. But over time, I’ve given myself permission to do Christmas our own way. Now we stage Christmas photos at home with all three boys, I put up lots of gentle fairy lights and decorate the garden with tinsel, and generally just bring Christmas to the boys, rather than having to leave the house to find it. They love it, I have created new family traditions, and there’s no stress or loneliness, only fun.

EMILY: I really relate to what you say about big events like Christmas. It’s why we go all out on the Christmas decorations - we bring Christmas into our home because outside of home doesn’t always feel like a safe place for our Ronnie. I think that there is a level of kind of grief and isolation around seeing what everybody else is doing. We learned a few years ago that travel isn’t something we can do at Christmas, that we need to be at home on Christmas Day. And I think sometimes other people’s expectations are the thing that makes it harder, like when they say, “You haven’t visited for Christmas”, or, “Why can’t you just do this?”, or, “Why can’t you just do that?” And sometimes there is a little bit of grief around the loss of spontaneity. Over time, I’ve learned to just let go of all the societal expectations around Christmas, and now I actually just really love it. I love all the decorations, and I put them up early because I want joy in my life, and these things make me happy and make the kids happy.

Families with neurodivergent kids, like journalist Angela Cumings' three boys, can put their own unique spin on Christmas festivities, fostering a sensory-friendly gathering.

Screen-time

ANGELA: Sometimes when I am around families that only have neurotypical children, I will see parents do things like placing limits on screen-time or getting funny about food. We do unlimited screen-time and the twins eat the same foods, and sometimes I wonder if there’s something in looking at whether what works for neurodivergent kids also works for all kids? Like, just let kids be themselves - let them regulate their own screen-time, let them decide what they feel comfortable eating (as long as it’s not a bag of sugar!).

EMILY: I absolutely agree. I mean, just on the topic of screen-time, we have a lot of, “How do you manage screen-time?”, and we don’t. He can use the screen whenever he wants. I went to a parent information night on screens, and it was just so ridiculous. I was just rolling my eyes; you know, somebody offering a $600 course to teach parents how to use a screen. And I’m just kind of like, have you ever watched a neurodivergent child on a screen? Right now, Ronnie will be on his screen, and he’s probably making a PowerPoint presentation on one of his special interests, like what all the United Nations member countries are. But society is so binary, right? Everything has to be good or bad. Screens are good or they are bad. Foods are good or bad. I also think we don’t consider our little rituals that are really important to us, like people who have a cup of tea at the same time every morning. That’s a ritual no different to an autistic child wanting to have lunch at 10am every day and have the same lunch.

Angela Cumings' twin boys Tommy and Henry are both autistic and have global developmental delay and sensory processing disorders.

The biggest challenge

ANGELA: I know you’ve said this before, that probably the biggest challenge as a parent of a neurodivergent child is raising them in a world that’s not designed for them in any way, shape or form. We both know how ableist society in general can be. I don’t know if you’ve experienced this with Ronnie, but I’ve found that as Tommy and Henry have grown older, people can seem a lot less tolerant of them and their autistic behaviours when out in public. Recently, Tommy was at an interactive science museum, racing about in excitement when he accidentally bumped into a lady who was there with her daughter and granddaughter. And I got the look from the lady, you know the one I mean? Just absolute disgust. A real “I can’t believe you allow your child to run about like this, you are a terrible parent” look. It just broke my heart. What do you do in those situations? Just go home and cry?

EMILY: We just went through something similar. Ronnie is the world’s biggest Queen fan – as in Freddie Mercury and Queen – and there was a Queen tribute show on at the Wellington Opera House, and he was so excited about going. It was always going to be really overwhelming thing for Ronnie to try to do, but he really wanted to go, so we did everything we could to prepare; we went in early so he could get used to the space, and the Opera House staff were so incredible, they helped so much, but as soon as we walked in with Ronnie and his friends, who were all so excited, we sat down and you could tell right away that the people in front of us were angry that there were children there. You just get that look… And then it was just too much for little Ron. He started to get so overwhelmed, even before the performance started, and got really upset, so I immediately took him out. I really think that kids can pick up on when they feel like they’re not welcome. We both cried on the way home, and then we had cuddles and listened to Queen in bed. Often what we do is, we try to do a “do-over” with something when it goes really pear=shaped. We will be like, “Okay, we’re going to try it over”, and the “do-over” might be that we’re gonna sit there and watch one of the big concerts on TV, and your friends will come over and we’ll have popcorn, you know?

The right thing to say

ANGELA: We talk a lot about what not to say to parents of autistic children or parents of disabled children; don’t say, “Oh, they don’t look disabled” or “They don’t look autistic’, or “Have you tried a gluten-free diet?”

EMILY:  Or, “Were they vaccinated?”

ANGELA: Right?! Or, “Just put them to bed at the same time every night, and they’ll eventually learn to go to sleep”. But no one ever talks about what to say to the parent of an autistic child. And I think it’s an interesting thing to think about, because I don’t mind talking about their diagnosis. I like speaking with people about their neurodivergences, I love them. And I’m very proud of them. I think they’re amazing human beings as well. So, I was wondering if there was anything that you think that you should say to parents, if you come across one at the next play group or school mum night, or, you know, a casual catch-up in the playground, if a parent was to mention, “Oh, by the way, my child is autistic.”

EMILY: I always say, “Oh, that’s wonderful.” Because I just genuinely think it’s such a joy to have an autistic child. And I think that I’m so lucky, because the things I know now are solely because of being his parent. So, if people say to me, “Autism? Oh, that’s really bad”, I’m like, “Why?” I mean, he’s an awesome kid.

If somebody says that their child’s been diagnosed with Type 1 diabetes, I say, “I’m so sorry”, and, “How can I, you know, how can I support you?”, and everything like that, because it’s very different.

Autism is not something that needs to be cured or taken away. We need to make changes in society to make it easier for people who are neurodivergent to be able to be their full selves - we make it harder than it needs to be. And we put a hierarchy on how people talk to each other, how they behave. And that makes it difficult for autistic people. And when someone has a new diagnosis, I will say, “Yeah, it feels very daunting right now. But you’re going to get the hang of this, and you know, you’re going to find real joy.”

Any advice?

EMILY: For parents of neurodivergent children, I really say, listen to and speak to autistic adults. I mean, it’s really a game-changer in understanding just how, and what, is needed to make change in the world. I’m so grateful for the generosity and kindness of the adult autistic community, who work so hard in a sometimes really violent space, especially with a lot of “autism mums” who are really ableist.

The advice I give to families of medically fragile or disabled children or children with a lot of medical health needs is that accepting help is really important – even things like saying yes to meal trains or someone to help you with housework - and so is being a “squeaky wheel”. When you are a parent in the hospital system, it can feel like your voice doesn’t matter, but it does. And doctors and specialists, well, they do actually have to explain to you what’s going on; that’s part of their job.

ANGELA: I am always thinking about those parents that are just starting out on the diagnosis journey or who just found out their child is autistic. I remember when we found out, I was told that the only piece of advice that really matters is to listen to autistic adults, because my autistic children will one day be autistic adults too, and to listen to autistic voices and nothing about them without them. That, and never ever leave autistic identical twins alone in a room with a bean bag that has a faulty zipper!

Emily Writes’ podcast The Courage Club is available now wherever you get your podcasts. Visit courageclub.co.nz.