Non-verbal autistic people like my son will never write his story. That’s not to say no one should | Australian books

A another author recently alerted me to the inclusion of an autistic character in his upcoming debut. This very sweet young writer felt the need to be open with me, given that I have two sons on the spectrum and autism is outside of their lived experience. This writer also let me know that he would completely understand if, because of this description, I chose not to read his book.

For the past two decades, my two boys and I have pretty much kept to ourselves. My youngest son, Rupert, has difficulty moving around, so we tend to stick to deeply ingrained routines that have developed over the years. As a result, I’m probably the last person to consult regarding preferred terminology, since I really have no idea. My sons identify as autistic, as “autistic” and as “on the spectrum”. We may be outliers in this regard, but we have always focused on life and communication skills, on developing independence and personal security. We know who we are; no redesign of the labeling changes that.

My writer friend has certainly tried to do his sensitivity homework – involving autistic readers in the development of their manuscript – and I have tried to reassure them further, suggesting that there are surely just as many ways to portray an autistic person. that there are autistic people on this earth. It’s easier, of course, for TV and film to retain the autistic savant trope (I’m looking at you, The Good Doctor) and follow the well-worn path of the quirky but awkwardly lovable autistic teenager. , as offered by Atypical. Some on the spectrum resemble the largely independent Sam Gardner on this show, though many others share little or nothing of his high-level executive function. And while we’re being honest, well-meaning love on the spectrum really should be titled Love (Confined to a Very Small Frequency) on the Spectrum, for similar reasons.

This is because autism includes an exponentially wide range of presentations. Yet, with the skyrocketing number of people diagnosed on the spectrum, today’s autism discourse seems to be driven by very articulate people diagnosed well into adulthood, people who have undoubtedly faced to challenges – who still face them, daily – and yet have sufficient skills to negotiate their way through regular school and university. They can have doctorates, partners and children, drive cars, work, travel the world and live entirely on their own. They write and speak well, and proudly, of their lived experience on the neurodivergent (not messy) hill.

But alongside them on this broad spectrum, there are and always will be people like my boy. Rupert does not handwrite or speak; he is completely dependent on me for almost every aspect of his life. He attends a special school and will never live independently. He will never drive a car, date, or be able to walk to the stores and buy an apple for his lunch. At nearly 19, her self-care requires prompting, assistance and supervision. He will never be able to advocate on his own behalf or successfully reach out to others for advocacy. Neurological sound differences mean that Rupert needs 24-hour care and will always need it. His neurodivergence does not distinguish it in a positive way – in terms of employment, for example – as it may well be for others.

As a society, we seem to accept – finally – that every person with a disability is a unique individual, but we seem reluctant to extend this understanding to those who parent and care for them. For some reason, caregivers are treated as if we were all carved from the same homogeneous lump of clay. But caregivers are people too, and we are all different.

Different backgrounds, varied levels of study, a unique life experience. Distinct personalities with equally unique strengths, weaknesses, skills and viewpoints. Not surprisingly, we all cope differently. One carer’s outlook may be very different from another’s. Our lived truths diverge, always more than two paths in any yellow wood.

Al Campbell is the author of The Keepers, released in February 2022 via UQP. Photography: Paul Harris

For example, some people with autism have trouble sleeping; my Rupert certainly does. In fact, as I write this essay, I’ve been awake since 2:34, because that’s when Rupert needed to start the day. It’s not unusual and part of who we are. This sleep disruption, however, makes me a less than ideal version of myself. I struggle to function on only three and a half hours of sleep so I have to manage my daily tasks accordingly. I have to say “no” to things, reprioritize. After years and years of insufficient rest, a price is paid. You don’t function well at work or sometimes at home. You could lose your job or come to terms with full-time employment not being an option. This leads to financial hardship. Unable to cover your mortgage, you could become a tenant in your 50s. This is my reality, mine and that of my family.

Applauding our new Australian of the Year in Guardian Australia last week, George Taleporos wrote that ‘we can’t all love our disability’ the way Dylan Alcott does. The same goes for caregivers. In my novel, The Keepers, I tried to show that hardship and love can and do co-exist. This one does not cancel the other. What caring for people with special needs often does involve sacrifice, heartache and incredibly hard work, and it is Okay. That there is not always a clear and classic way of thinking, feeling or proceeding. Things can be complex, not neat. We fall, often fail, and only some of us get back up. We make mistakes, sometimes the same ones, over and over again. We panic, we fight our way through days and months at a time. We are not cut off, we are not all the same.

Few people on the hard end of the disability spectrum will become authors. Likewise, non-verbal, deeply autistic people like Rupert cannot be actors; obviously this is not a realistic expectation.

So when a story just can’t be told by an #ActuallyAutistic person, what then? We don’t say it at all? That doesn’t seem right to me.

My son will never speak, nor write on, his truth. His experience of life is just as valid as the experience of those who are better able to tell their stories. His voice also deserves to be heard. Otherwise, how will we know about him, about others like him? Aren’t they just as important?

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