Claud’s journey of empowerment with Tourette’s

Published on 26 Sep 2023

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Photo of Claud, smiling at the camera, wearing a bright green landyard covered with sunflowers, holding their dog, smiling at the camera

Claud's journey of self-acceptance and empowerment reaches far beyond his years and has positively influenced his local community of Collie, located in Western Australia’s South West region.


His journey began when his symptoms of Tourette's Syndrome began to emerge when he was in year seven, manifesting as motor (movement) tics, progressing to verbal (sound, vocal) tics.

These tics, including utterances that were unexpected and unfamiliar, presented a unique set of challenges.

"It was really like an out-of-body experience," Claud recalls, as the tics took control over his body and led to feelings and moments of vulnerability.

Claud's tics can take a range of forms, including copropraxia and coprolalia, the latter of which involves involuntarily uttering socially inappropriate words or phrases.

Since his diagnosis Claud has demonstrated remarkable adaptability and strength.

Even amid the challenging early days post-diagnosis, and the strain this took on his mental health - his academic performance remained exceptional as he moves through high school.

Claud has been supported by his teachers and friends since his diagnosis, which has helped him on his journey of self-acceptance.

Leonie, Claud’s mum, notes the significant role a supportive school environment plays in Claud’s wellbeing.

His friend Hailey's unwavering support - exemplified by her actions to shield Claud from potential harm during tic episodes - demonstrates the profound impact that compassion and understanding can have on individuals with non-visible, or hidden disabilities.

Yet like many living with life-long or chronic conditions, Claud's journey hasn't been without hurdles.

With much stigma and misunderstandings still present around Tourette’s, Claud and Leonie have done much advocacy and education in their community, including with Claud’s school.

To shed light on the challenges of living with Tourette's Syndrome, Claud emphasises the importance of awareness and sensitivity.

He urges people to respond with empathy and understanding, advising against laughter or ridicule.

"People who know me, know that it's not me," Claud asserts, highlighting the distinction between his true self and the involuntary tics that manifest.

Claud’s advocacy extends beyond his personal experiences.

Claud learned about the Hidden Disabilities Sunflower project online, a project which began in 2016, aimed at increasing awareness of hidden or non-visible disabilities across the world.

The wearing of a sunflower lanyard serves as a powerful and discreet symbol which people with disability like Claud can wear voluntarily in public, signifying they may need extra understanding or a helping hand while out and about.

Individuals. businesses and allies can get involved with supporting this cause, and learn more about inclusion for people with non-visible disabilities.

As he continues on his journey, Claud’s strength and support will no doubt continue to make ripples of positive change.

 


This story has been brought to you by the Disability Reference Group in Collie in an aim to increase awareness and acceptance of people living with disability within their communities.

The group has been formed by APM Communities who are responsible for delivering Local Area Coordination services as part of the NDIS.

For more information, please contact sarah.bowes@apm.net.au


As part of the NDIS Partners in the Community program, APM Communities help people with disability in several regions in Western Australia, Queensland and the Northern Territory to access support.

Our Local Area Coordinators (LACs) help people with disability, National Disability Insurance Scheme (NDIS) participants, families and carers to identify and access the support they need.