Navigating the challenges and triumphs of neurodivergent parenting

Navigating the challenges and triumphs of neurodivergent parenting: A response to Hugh’s open letter

By Dr. Nicole Carvill, Psychologist – BA(Hons) PhD MAPS

Hugh Van Cuylenburg’s open letter to parents of autistic children is not only deeply moving and profoundly honest, but also quite confronting. For many, it resonated. But for others, it was hard—maybe even impossible—to watch. Because the journey of caring for a neurodivergent child is one of immense love and joy, but also challenge, heartache, and uncertainty.

Hugh’s words capture the raw, unfiltered emotions that so many parents and carers experience. The love, the grief, the exhaustion, the fear, and the hope. As a psychologist dedicated to supporting families along this path, I want to acknowledge these feelings are normal. Caring for your child is important, but your wellbeing matters too. If you or any member of your family is feeling lost, alone or stressed, there are people who care and want to support you. You don’t have to carry this alone.

The emotional journey of a diagnosis

Receiving a diagnosis for your child can feel overwhelming. There’s often an initial impulse to sprint—to learn everything, put the right supports in place, and do whatever it takes to make the world easier for your child. But, as I often tell the families I work with, this is not a sprint; it’s a marathon. And like any marathon, you need a team around you: a support network of family, friends, therapists, and professionals whose values align with yours and who you can trust.

One of the things many parents don’t expect is the ongoing nature of grief. It’s not a single event that happens at the moment of diagnosis—it ebbs and flows. Certain milestones can bring it to the surface: starting school, birthday parties, friendship hurdles, transitions to adulthood. This is normal. Grief and love can coexist. In fact, they often do.

The weight of the world

Hugh speaks to the pain of watching a child struggle in a world that often does not make space for them. As he so eloquently put it, “The pain of being a parent to an autistic child is not the child. It is the world.” This is something I have heard from so many parents—the deep sorrow of seeing your child excluded, misunderstood, or overwhelmed.

The impact on parents and carers

Yes, studies have found that parents of autistic children experience stress levels comparable to those of combat soldiers. The research also shows that without adequate support, caregivers are at increased risk of experiencing elevated levels of stress, burnout, social isolation and a lower quality of life than those caring for neurotypical children.

Parenting is demanding, but when you add in navigating therapies, advocating for accommodations, managing sensory needs, meeting cultural challenges, and shouldering the emotional weight of it all, it’s no wonder caregivers feel exhausted.

On top of that, helping friends and family understand the diagnosis and why some traditional parenting strategies may not work can add another layer of challenge and stress. The frustration only grows when families face long waitlists and barriers to care.

But there is hope. What’s missing from this picture is the growing evidence showing that access to social support, respite care, and mental health services, along with a system that is easier to navigate, can significantly reduce caregiver stress and improve overall wellbeing.

One of the key findings from my PhD research into Caring for Carers was just how important it is for families to understand the diagnosis. For those new to this journey, finding trustworthy information, presented in a way that suits their needs and learning styles, is essential. When families feel informed and supported, it can have a meaningful impact on their confidence and wellbeing.

The impact on siblings

The impact on siblings is another reality Hugh so poignantly highlighted. The wait, the quiet sacrifices, the unspoken understanding—these dynamics are real. Finding ways to acknowledge and support siblings, to ensure they feel seen and valued, is the key to fostering a balanced and loving family environment.

Siblings of neurodivergent children often take on unique roles, displaying immense compassion and resilience while sometimes grappling with feelings of being overlooked. Giving them dedicated time, open communication, and a safe space to share their feelings, including moments that have been tough, can make a meaningful difference.

We know how important this topic is for families, so we’re diving deeper into this topic in an upcoming blog post and webinar series. We’ll share practical strategies to support siblings, strengthen family connections, and provide the guidance you need throughout your child’s neurodivergent journey.

Join us by subscribing here.

Advice for parents and carers

Supporting a neurodivergent child comes with unique challenges, but there are practical ways to create a nurturing environment that fosters their growth and wellbeing. Here are five key strategies to consider:

Help your child understand how their brain works
Understanding how their brain works—and what helps or hinders their emotional regulation—can empower your child to navigate the world with more confidence. Some kids find loud noises overwhelming, others struggle with bright lights or too much eye contact. In the beginning, they rely on you to notice these patterns and advocate for them. Over time, they learn to recognise their own needs, communicate them, and seek support when necessary. This self-awareness takes time to develop, but you can help by modelling calmness, using co-regulation strategies, and creating sensory-friendly environments where they feel safe and understood.
Embrace their strengths
Every neurodivergent child has unique abilities and interests. Encouraging their passions, fostering their talents, and celebrating their achievements can boost confidence and promote self-worth.
Create consistency and structure
Predictability can help neurodivergent children feel safe and secure. Visual schedules, routines, and clear expectations can reduce anxiety and help them navigate daily life more easily.
Advocate for their needs
So many families I see have family members who just don’t get it and believe their child is misbehaving. Whether it’s within your inner circle, the school system, healthcare, or social settings, advocating for your child ensures they receive the support and accommodations they need. Educate yourself on their rights and seek professionals who align with your child’s best interests.
Build a strong support network
Connecting with other parents, joining support groups, and working with therapists who understand neurodiversity can provide invaluable encouragement and guidance.

Most of all, remember that you don’t have to navigate this road alone. With the right support systems, space to share your experience, self-care strategies and a strong community, brighter days, more triumphs and a deeper connection with your child lie ahead.

Final thoughts

Hugh, and every parent walking this journey—you are not alone.

Your love for your child is evident in every word you write, every sacrifice you make, and every moment you hold space for them in a world that doesn’t always understand them. But you don’t have to do this alone. Find your community, trust your team, pace yourself, and know that you are doing an incredible job.

Your child is not flawed, your child is extraordinary. And like Hugh said, that’s because of their differences, not despite them. The more the world learns to see them through your eyes, the better it will be for all of us.

With warmth and understanding,
Dr. Nicole Carvill

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