This month we caught up with author Al Campbell, who recently spoke at our AUStism event in Melbourne on World Autism Awareness Day. We chatted about her debut novel ‘The Keepers,’ her love of writing, and her experience as a mother and full-time carer of two boys on the autism spectrum.  

Congratulations on publishing ‘The Keepers’! Without giving too much away, what can readers expect when reading the book?

The Keepers is a very honest and, at times, confronting story of a woman, Jay, and her twin boys, Frank and Teddy, who both have complex support needs. Jay battles a lot of demons: a Kafkaesque bureaucracy, a community that only claims to care, a husband who dialled out long ago, and a past she knows she won’t ever outrun. She does all this with the help of Keep, her lifelong half-real friend who stepped out of a pile of books one day when Jay was a child and in serious trouble.

So, readers, please note: The Keepers is not a ‘beach read’! It’s often bleak, unapologetically spiky and, as I’ve said, brutally honest. But there is also joy, and humour I’ve been told is ‘laugh-out-loud’ funny. A friend of mine, another writer, called The Keepers a love story, just not the kind most people would expect.

Feedback from readers who are also parents of children with support needs expressed an initial fear when reading The Keepers – that it would ‘hit too close to home.’ But that fear soon gave way to relief and, happily, to a sense of ‘being seen.’ The Sydney Morning Herald review called it ‘a biting commentary on inequity … marvellously scathing.’

You have a range of creative accomplishments, including acting! Is writing something you’ve always wanted to do, and what do you enjoy most about it?

Is writing something I always wanted to do? Yes and no. In my heart of hearts, I grew up wanting to be an actress, Meryl Streep specifically. These days, I think I’d prefer to be Rachel Weisz and therefore married to Daniel Craig!

That said, I have always loved words, loved mucking about with them, obsessively, in a way that most people don’t. I’ve had a lot of boring jobs and would surreptitiously read the dictionary because finding a word I didn’t already know was such a thrill! Yes, I wrote stories when I was a child, and that skill was recognised at school, but I also had no confidence, so I never did anything about it untilI was in my fifties, and in a pretty desperate state. In that way, you could say that writing saved me and now, it’s all I ever want to do. I love creating prose that reaches out from the pages to drag the reader into the book – enabling them to see and hear and experience a scene. And I love creating characters so real that you’d know them if they knocked at your door.

It's said that writing is thankless, lonely drudgery. Lucky for me, I happen to L-O-V-E lonely drudgery!

You’re a mother and full-time carer of two boys on the spectrum. What led to their diagnoses, and what was the process of pursuing these diagnoses like?  

Well, my boys’ diagnoses happened twenty years ago now, so perhaps things have changed/improved?

My first born, Frazer, was born early and sick, couldn’t breathe or feed on his own, couldn’t manage any of ‘the milestones’ first-time mothers sweat over in the baby bibles. Concerned for my son’s development, I consulted with doctors, but was waved off as an overanxious new mother, and patronising told that Frazer would catch up to his peers by the time he was five or six. That didn’t ring true to me, but what did I know – doctors are deities, and mothers know nothing, right? Ha! Baloney!

My second son, Rupert, was born on time and immediately hit all those milestones his brother had missed – waving, pointing, clapping, copying, crawling, walking, etc. But then, at 13 months, he had what was, in those days, referred to as a classic ‘autistic regression.’ He lost all eye contact with everyone but me, disengaged from the world at large, and began shuffling about on his toes. He stopped talking (and has been non-verbal ever since). As a result, all those doctors I’d stalked in relation to Frazer’s development began calling me, suggesting we ‘rethink’ Frazer’s situation in light of Rupert’s regression. So, both boys were officially diagnosed pretty early and at about the same time.

How have you come to learn the unique talents and challenges both of your sons have? Would you say this is an ongoing process?

I’ve just got to know my sons as any other mother would. And yes, it’s an ongoing process. Get used to being a lifelong learner.

You’ve spoken about how ‘The Keepers’ all but begged you to write it. Was there a specific moment that pushed you to begin writing it, or was it a combination of factors over time?  

In 2016, my constitution was mostly made up of caffeine, Red Bull and rancid, emulsified stress. After caring for my boys – without a single day off – for 15 years, I was cooked, able to count on one hand, literally, the nights we had all slept through in that time. I had to attend to my exhaustion, to my burnout. To me. Do something that spoke to my life, rather than to my reality (there’s a difference). So rather than day-drinking or working up an extra-mild pack-a-day habit, I picked up a copy of Julia Cameron’s The Artist’s Way instead. Julia Cameron urges you to always write by hand, and even on days when you can’t think of anything to write, it’s okay to simply go with: I don’t know what to write. I don’t know what to write. I don’t know what to write. Just keep your hand moving across the page, says Julia, because something will eventually come. And I had days like that, when I had nothing, only instead of repeating I don’t know what to write, I wrote:

I don’t know what to do.

I don’t know what to do.

I don’t know what to do.

I don’t know what to do. Please help me.

I didn’t know who I was asking for help, but I would have taken it, because I was exhausted and fresh out of ideas. I didn’t feel like I could make a good decision on lunch, let alone life, let alone the three lives I was in charge of, but I kept writing my morning pages, rarely stopping at only three.

A little while later, in 2016, Nikki Gemmell wrote a column called ‘Never too late to start’ about writers I admired like Annie Proulx, Elizabeth Jolley, Anita Brookner and others, all of whom only began their careers in their 40s and 50s. That column started me thinking that maybe, just maybe, time hadn’t yet run out.

Then Rupert, at age 14, suddenly got sick, dangerously ill, unable to eat. He ended up in coma, a feeding tube inserted, doctors confounded. Rupert and I were in and out of the Queensland Children’s Hospital, admission after lengthy admission, for the next 18 months.

Anyone who has ever spent a night by their child’s hospital bed knows there’s no sleep to be had, and I was camped there for weeks at a time, nothing to do by my listless son’s bedside but panic, pace, hound doctors, fever-dream, cry, and plea-bargain with whoever or whatever might have been listening. And write. A lot. Far beyond Julia’s three pages. Fun fact: Almost half of my novel, The Keepers, was written on the ninth floor of the Queensland Children’s Hospital.

Only later, when my darling boy was home and strong enough for a part-time return to school, did I see that what had spewed out of me all those dread-filled days inside his quarantined room looked a bit like a book. Raw and misshapen, but a story. About mothers and sons, about difference, about being that most overlooked and invisible thing – a carer. About monsters real and imagined, good and bad. About love’s magic and the emptiness of the unloving. Yet my story still had a long way to go.

How to find the time, right?

Toni Morrison, a single working mother, got up at 4am to write, so I began setting my alarm and had a go, an early-hours routine that works for me to this day. As the boys slept, my small world at its most still, the words and ideas flowed, unguarded, daring, the spew-it-all-out-on-the-page method pioneered by Rupert’s bedside all I knew how to do.

And in September of 2020, only four months after typing “The End”, UQP offered to publish my book.

If there was one thing you would like readers to take away after reading ‘The Keepers,’ what would it be and why?

We all know the old saying: ‘When you’ve met one person with autism, you’ve met one person with autism.’ Cheers to this; no one would disagree.

But the same can said for carers too. We all experience it differently. We all do it differently. Sure, enlist help, solicit advice, but do it your way. No one can tell you how to feel.

What advice would you offer to parents/carers whose child or children have recently been diagnosed with autism?

As I’ve done with all these questions, I can only respond honestly, based on who I am, the path I chose to take (there’s always more than one in any yellow wood), and what I’ve learned.

I’m tempted to offer a platitude here: you are not alone, because there certainly are support groups and networks you can reach out to for information, advice, recommendations, and referrals. You’ll be kept busy becoming a student all over again, because there is much to learn not only about autism itself and the services that are available, but about your own children who, like any other, will grow and change. My son, Frazer, was a completely freaked-out five-year-old, utterly terrified of the world and all who sailed in her – nothing like the confident, relaxed young man he is today. By contrast, my younger son, Rupert, a calm and sanguine toddler, struggles now with paralysing anxiety and fear. He can barely stand to lose sight of me. Two sons on the spectrum, yet I know never to assume that what works for one will work for the other.

As a parent or carer of a person with autism, you will need to become a lifelong learner – able to adapt, rethink, adjust. You will need to accept that giving upon something that isn’t working – which may go against the grain as it did for me – is only being sensible, not a sign of failure. Systems and services will let you down; people will let you down, and you will have to right the wheels of your family yourself and start over.

And so, given all that, it is equally true to say you are very much alone. I can’t tell you how much I abhor being told you’re not alone. Yes, yes you are, in so many ways. To think otherwise is quite fanciful. So you are going to have to adjust to that.

Because no one can do all this learning for you. No one will be by your side at three in the morning when things seem most grim. You will cry on your own. Your friends and colleagues won’t understand. You won’t be able to fix everything and working yourself into the ground in the service of your children won’t help anyone in the long run. Take this as fact from someone who didn’t prioritise self-care: you’re no good to anyone if you’re falling apart.

So, while you may feel more alone than you’d ever thought possible, you’re not exactly Robinson Crusoe either, traversing unknown territory. Other parents have been where you are now, plenty of us. Share in the knowledge of others; any advice you solicit you don’t have to take.  

But if there’s one thing I’ve learned through two decades of loving and parenting, it’s this: you learn little and go nowhere by always saying ‘no.’

Autism, we accept, is a spectrum. Yet we still seem unwilling to extend this understanding to the parents of autistic people, carers often treated as though we are all carved from the same uniform clump of clay. But carers are people too, and we are all different – different backgrounds, varying levels of education, unique life experience, varying skill sets, peculiar strengths and weaknesses. Not surprisingly, we all cope in our own ways. Autism is a lifelong developmental difference and highly disabling for some, as it is for my son, Rupert. One parent’s outlook on having a child with autism may be wildly different to another’s, and that’s okay. Learn, adjust, love, but still be you because, as Oscar Wilde would say, everyone else is taken.

We’re always excited to hear about your writing and other projects. What’s next for Al Campbell?

Well, the next book is quite a mash up – a literary historical crime fiction with my usual speculative fiction bent. My main character is a traumatised house with a few scores to settle. I’m very excited about it, have had some fabulous feedback from beta readers, and I hope you’re intrigued!

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'The Keepers' is on sale now. Use KEEPERS30 on the University of Queensland Press website to get 30% off plus free shipping! Stay up to date with Al Campbell's latest news and projects by following her on Twitter.