Neurodiversity Through the Eyes of Parents and Caregivers
By Safiah Hussein, Institute Of Neurodiversity Singapore
Over the past several months, I have had the profound privilege of engaging with a remarkable small community of parents and caregivers of neurominority children in Singapore.
These conversations, often shared through one-on-one exchanges, have revealed the deeply personal, multifaceted and complex journeys these families undertake. Their stories illuminate both the profound challenges they face and the extraordinary resilience they embody.
They are the quiet architects of possibilities, the steady hands behind countless milestones and the bridge between systems and the individuals they love.
From the vantage point working in this space, I have seen how their role extends far beyond the home.
Why Parents and Caregivers Matter in Neuroinclusion
- The First Advocates
Parents and caregivers are often the first to recognise strengths, navigate challenges, and advocate for the right support. Their insights are not just valuable, they are essential in shaping truly inclusive environments. - The Emotional Backbone
The journey of supporting a neurominority loved one is layered with moments of celebration, frustration, resilience and profound love. Recognising this emotional labour is key to building empathy across our communities. - The System Navigators
From education to healthcare to employment, parents and caregivers navigate complex systems daily. Their lived experience can guide organisations in designing services that are relevant, respectful and effective.
These are not just “personal” skills, they are transformative leadership qualities that our communities, schools and workplaces can learn from.
The Emotional and Systemic Load
Behind every public policy win or workplace inclusion initiative, there are personal stories:
- Endless paperwork to secure educational support.
- Repeatedly explaining differences to those who may not understand.
- Managing the emotional labour of both care and advocacy, often while balancing careers and other family responsibilities.
These realities are rarely captured in statistics, yet they are the human engine behind much of the progress in neuroinclusion.
Beyond Support: Towards Partnership
True neuroinclusion cannot happen in silos. Parents and caregivers can be partners in design, decision-making and dialogue. This means:
- Listening to their lived realities without assumption.
- Involving them in programme creation and policy development.
- Acknowledging their expertise as equal to professional knowledge.
By recognising their lived wisdom and embedding it into how we design and lead, we:
- Support the neurominorities they care for
- Strengthen the fabric of our entire society
Because behind every neurominority individual, there is often an unshakable, unseen network of love, advocacy and persistence.
It’s time we make that visible.
Safiah is a DEI leader with over 8 years of experience leading transforming initiatives to foster inclusive recruitment, workplace cultures & belonging and promote social mobility for marginalized and neurodiverse communities.
Her work sits at the intersection of equity and action, building inclusive hiring practices, leading diversity training and forging partnerships that create real impact.
Above all, she is committed to justice and dignity creating spaces where every voice is heard, valued and empowered to thrive. A strong advocate for equity while being committed to creating an environment where diversity is celebrated and every voice is heard.
