Coffin–Lowry syndrome (CLS) is a rare genetic condition that affects physical development, intellectual functioning, and sometimes behaviour. It is caused by a change (mutation) in a gene on the X chromosome, which means it can affect males more severely, although females can also experience some features.

While every person with Coffin–Lowry syndrome is different, early recognition, the right supports, and a compassionate, person-centred approach can help people with CLS live safe, connected, and meaningful lives.

In disability support work, the term “challenging behaviour” is often used to describe actions that are aggressive, disruptive, or difficult to manage—such as yelling, hitting, withdrawing, bolting, or refusing to follow instructions. But what if we stopped viewing these behaviours as problems to fix, and started seeing them for what they often are: a form of communication?

When we turn on the TV, scroll through social media, walk past a billboard, or open a magazine, we’re met with countless images and stories that reflect back to us what’s considered “normal,” valuable, or beautiful in society. But for people with disability, those reflections are often missing—or worse, misrepresented.

Representation isn’t just about visibility. It’s about being seen accurately, respectfully, and without stereotypes. When people with disability are portrayed with authenticity in media, advertising, and everyday life, it helps break down barriers, challenge stigma, and promote a more inclusive world.

Not all disabilities are visible. Some people live with chronic pain, neurological conditions, cognitive impairments, sensory processing differences, or mental health conditions that may not be immediately noticeable to others. And yet, when they ask for support, accommodations, or understanding, they’re often met with a phrase that can feel invalidating and dismissive: “But you don’t look disabled.”

Rett syndrome is a rare neurological condition that primarily affects girls and is most often caused by a mutation in the MECP2 gene. Children with Rett syndrome typically develop normally in their first year, before gradually losing previously acquired skills such as speech, purposeful hand use, and coordination.

As the condition progresses, it can affect nearly every aspect of a person’s daily life—from walking and eating to breathing and communicating. Though the challenges are significant, supportive care and inclusive attitudes can help individuals with Rett syndrome live meaningful, connected lives.

Effective disability advocacy is crucial for ensuring that individuals with disabilities receive the services and support they need. As a parent or carer in Australia, understanding the systems in place—such as the National Disability Insurance Scheme (NDIS) and various community services—can empower you to advocate for your child’s rights and well-being. This guide outlines practical steps to navigate the system and create a supportive environment.

The first step in successful advocacy is to educate yourself about the available policies and rights. Familiarise yourself with the details of the NDIS, government services, and local community resources. This knowledge forms the foundation of confident advocacy and helps you understand what your child is entitled to. Building a network of support is equally important. Connect with local advocacy groups, support networks, and other families who share similar experiences. These connections can provide both practical advice and emotional encouragement.