Navigating Grief and Autism

Allison Brown considers the heartbreak of parenting children with autism. 

My child stands before me, tears streaming down their face, which is bright red with emotion. Pain is etched across their features. "Why can't I be normal like everyone else?" they ask, collapsing into my open arms, sobbing. 

My heart shatters into a million pieces. 

Oh, my dear child, I think to myself. How can I alleviate the burden you are carrying at such a young age? 

Beauty, Burden, and Grief 

I have often said I see the beauty in autism and how my children perceive the world, but I also recognise the heavy cross they bear due to it. As a parent, I feel like I'm in survival mode, riding the turbulent waves and holding tightly to my child's hand. With each new diagnosis, and with each meltdown, panic attack, breakdown, and wave of anxiety, I stand by their side, often trying to carry their burdens on my shoulders. 

No one prepared me or warned me that my heart would break a million times in a single day. No one told me that when one child in the family is diagnosed, the whole family carries that diagnosis with them. 

No one warned me about the loneliness I would experience or the guilt of wondering if I could have done something differently. And no one warned me about the grief I would carry for my child and myself as a parent raising children on the spectrum. 

It never occurred to me that my child might also experience stages of grief when they begin to realise they are different from their peers or when they learn about their diagnosis. 

Struggles, Milestones, and Pride 

My little one understands they have a diagnosis and has been in tears from frustration, not understanding why they react a certain way in specific situations. They have expressed that their reactions aren't truly them; it's the ASD or the ADHD, and they feel they have no control over these diagnoses. 

Autism has dramatically influenced our family. We've learned to be flexible and prepared for sudden changes. Advance notice helps our child know what to expect, whether it's the clothes they wear or the places we go, as unfamiliar environments can trigger stress and anxiety. Open communication and a supportive atmosphere have also made a significant difference. 

Despite our efforts, there are times when our child feels overwhelmed and needs comfort. It's common for me to manage a hyperactive child while another clings to me in tears. I often watch other families with envy, seeing their children thrive and enjoy social activities, while my heart breaks for my children, who struggle to meet typical milestones. I deeply feel their challenges and the pain they carry. 

However, amidst the struggles, there is also a profound sense of pride to watch them give their all and work hard, determined to meet these milestones and goals. Their achievements, no matter how small, fill me with joy and pride. In our house, we celebrate the tiniest milestones with joy and enthusiasm, reminding us of the progress we've made and the journey we're on.  

Helping My Children Navigate Their Grief 

I realise that as my child's parent, caregiver, and safe space, I must help them navigate their feelings of grief related to their diagnosis. As I hold them in my arms, I reflect on my own journey of accepting multiple health conditions, diagnosed at just 13 years of age. 

I understand how vital it is to explore and express feelings of anger and frustration about the circumstances surrounding our diagnoses. I also recognise the grief that comes with losing the person I was and the identity I once had before becoming ill.  

I know in my heart of hearts that helping my child through this is to show them that they are seen, heard, and loved exactly as God has made them. To help them understand and acknowledge their worth and identity through Jesus Christ, allowing them to see that their uniqueness is a gift, even though it can feel like a heavy cross, but a gift that one day they can use to walk beside other families who are struggling on their journey of autism. 

I have cried with each new diagnosis, feeling overwhelmed by the long list of recommended therapies and assessments. There have been times when I've turned off my phone, unable to speak with doctors, teachers, or insurance agencies, while my inbox filled with requests for forms and my signature. 

I have grieved over the latest assessment results, knowing their implications for my child's future. There is a fear of what lies ahead and the realisation that one day I may not be here to protect them from a harsh world. 

The fear and grief sometimes weigh heavily on my heart. 

I don't understand why the Lord has allowed multiple diagnoses in my family or given me children with specific and special needs. However, I trust that by surrendering it all to Him, He will use these challenges for a greater good — bringing salvation to my family and those around us. 

By surrendering my grief and entrusting my children to the Lord, I allow Him to work in our lives. These trials are meant to prepare us for something greater that we cannot yet understand. 

And so, while I still carry a grieving heart, I find comfort in knowing that the Lord has a plan in all of this. He is in control; I never was. I pray for the Lord to come into my life and the lives of my husband and children, and ask Him to take over our lives, while comforting our hearts and pouring out His graces in abundance, so that we may grow in faith, trust, and courage to continue walking this journey of autism. 

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Copyright 2025 Allison Brown
Images: Canva