Normalcy Grief: An honest self-reflection from a parent of children on the autism spectrum

Normalcy Grief: An honest self-reflection from a parent of children on the autism spectrum 

I was in the car with Finneas, my six-year-old, after school pickup. His AAC device rested on his lap as he flicked between words: up, down, above, below. He navigated to a storybook about animals that would not make good pets. Elephant. Monkey. Cheetah. Every so often he vocalised a word, sometimes the shape of a phrase. 

I was trying to decide what treat to get him after school. “Ice cream?” “Chicken nuggets?” These are words that he knows. Words he has said many times before. Still, there was no response. 

This kind of exchange is fairly normal for us and part of our everyday lives. After enough attempts, I find myself guessing. Making an assumption. Deciding for him based on past patterns rather than a preference voiced in the moment. 

 

If we get an ice cream, Finneas will usually have 1 or 2 licks, then place it down somewhere in the back and I find myself scrubbing down a melted puddle of icecream soup from the back seat. Going straight home is a disruption to his routine. We don't always get a treat after school, but today was not a day I wanted to deprive him of that and risk the upset. So, chicken nuggets, was the decision. 

 

As parents of autistic children, we live in a world of assumed needs, implied consent, and delayed or non-linear independence. Progress is rarely predictable. Milestones are fragile and often unreliable, especially when measured against peers. 

 

And woven through all of this is something we do not talk about enough. 

 

Grief. 

 
What is normalcy grief? 

Normalcy grief is sometimes described through frameworks such as ambiguous loss and chronic sorrow. Ambiguous loss refers to a loss that remains unclear and without resolution, where closure is not available in the way it is after a death (Boss, 2008). Chronic sorrow describes recurring, ongoing grief responses associated with continuing losses and reminders, and it has been applied to parenting and caregiving in disability contexts (Scornaienchi, 2003). 

In a more ordinary definition, normalcy grief is the quiet mourning of the life you expected, while your child is still here and deeply loved. 

Because our children are alive, growing, laughing, and learning, this grief is often socially unrecognised. Carer grief is frequently minimised or overlooked, even when it has significant emotional and physical impact (Carers Victoria, n.d.). 

It can be difficult to name, and even harder to admit out loud, because it exists alongside deep love and fierce devotion. 

 
Loving fully and grieving truthfully 

This is the part that feels hardest and the thing I struggle most to say out loud. 
 
You can love your child exactly as they are with so much of your chest. You can hold the precious moments with them when you’re tucking them into bed, or they come up to you and sit in your lap and rest their heads against you.  

 

You can enjoy and relish the beautiful, ordinary joys of being a parent. Still this description wouldn’t encapsulate just how much love you have for them. And all of this can be true, while you also mourn the life you thought they might have. 

 
These things are not opposites. We love our sons so much. we see their brilliance, their humour, their determination, their joy. Finneas with his unfathomable ability to spin vortex-style on his aeroplane chair, or free-form balancing on one foot. Tobias’ unshakeable and fierce love for connection and people and the way he seeks and craves friendship – with the neighbours' kids, his cousins, school friends and adults, he loves all people from babies to adults.   

 

All of these things make us proud. They bring us so much happiness. And still, there are moments when grief rises up unexpectedly. 

 
A video from school depicting a learning scenario that you can see the gap of learning between your child and their peers. A stalled skill or forgotten series of words that were there one day and all of a sudden you can’t remember the last time you heard them. A sudden and jarring reminder of how much support may always be needed. 

This grief does not mean we want our children changed or fixed. It means we are human. 

In te reo Māori, the term takiwātanga has been used as a Māori word for autism, derived from the phrase meaning ‘in your own time and space’ (Opai, 2020). I carry this meaning with me as a reminder that there are no dependable timelines. No universal roadmap. No clear answers about what independence will look like or when it might arrive. 

Some days this feels beautiful. Other days it feels frightening. Often it is both. 

 
Signs of caregiver grief 

Caregiver grief does not always look like sadness. 

It can show up as: 

•  exhaustion that does not lift,  

• irritability or numbness,  

• resentment followed by shame, or  

• withdrawal from friends who do not understand.  

 

These reactions are common when grief is ongoing and unacknowledged (Carers Victoria, n.d.)… When it has no language, it often finds other ways to surface. 

 
Naming it gently 

Grief does not cancel hope. 

Naming normalcy grief does not take anything away from our children or our love for them. It simply makes room for honesty. 

Acknowledging it allows us to breathe again. To stop policing our own emotions. To recognise that strength does not mean silence. 

If your grief feels heavy or isolating, there are carer supports designed specifically for this kind of emotional load. Carer Gateway is an Australian Government program that connects carers to counselling, peer support, respite pathways, and practical supports (Australian Government Department of Health and Aged Care, 2025; Carer Gateway, n.d.). 

 
Holding both truths 

Our children are not broken. Their lives are not lesser. Their paths are simply different. And we, as parents and carers, are allowed to feel everything that comes with that. Joy and grief. Pride and fear. Acceptance and longing. 

All of it can coexist. 

We walk beside our children in their own time and space. And we walk ourselves too, learning how to hold love and loss in the same hands. 

 

References 

Boss, P. (2008). Ambiguous loss: Learning to live with unresolved grief. Harvard University Press.  

Scornaienchi, J. M. (2003). Chronic sorrow: One mother’s experience with two children with lissencephaly. Journal of Pediatric Health Care, 17(6), 290–294. https://doi.org/10.1016/S0891-5245(03)00123-8 

Carers Victoria. (n.d.). An unrecognised grief: Loss and grief issues for carers. https://www.carersvictoria.org.au/wp-content/uploads/2025/06/3242-carers-vic-carers-unrecognised-grief-guide_fa_lo2.pdf  

Opai, K. (2020). A time and space for takiwātanga. Altogether Autism. https://www.altogetherautism.org.nz/a-time-and-space-for-takiwatanga/  

Australian Government Department of Health and Aged Care. (2025). Carer Gateway. https://www.health.gov.au/our-work/carer-gateway  

Carer Gateway. (n.d.). Carer Gateway: Emotional and practical services for carers. https://www.carergateway.gov.au/