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We have changed our name! Kids on the Spectrum is now called Living on the Spectrum

The Overlooked Role of Parents as Carers – Exploring the need for Carer Support.

Parenting is a journey filled with joy, challenges, and an unending stream of responsibilities. When a child has a disability or is on the autism spectrum, the demands on parents multiply exponentially. Despite the immense care they provide, it’s common for parents in these circumstances not to recognise themselves as caregivers or even think about accessing carer support. Society often frames caregiving as primarily a mother’s duty, but the reality is that parenting a child with additional needs transforms us into caregivers, carrying an additional layer of stress, anxiety, and pressure.

Unveiling the Reality

The Australian Bureau of Statistics Survey of Disability, Ageing, and Carers sheds light on the multifaceted world of caregivers. Astonishingly, more than 2.65 million people in Australia, approximately 1 in 9, are engaged in caregiving responsibilities. The diverse nature of caregiving roles highlights the uniqueness of each situation.

One in three caregivers takes on the role of a ‘primary carer,’ acting as the main support for an individual with additional needs. This role often goes unrecognised, overshadowed by societal expectations of what caregiving looks like.

Read more: Therapy fatigue and carer burnout is a rising concern among parents and carers.

The Invisible Burden on Women

Contrary to popular belief, caregiving isn’t confined to spouses or professional caregivers. Just over one in four primary carers are parents, tending to the needs of their children, including adult children. This challenges the prevailing stereotype that caregiving is predominantly a maternal responsibility.

Women between the ages of 55 and 64 are statistically more likely to be primary caregivers. In fact, women, in general, are more likely to take on caregiving roles compared to men. The burden often falls disproportionately on their shoulders.

The Silent Struggle: Carer’s Mental Health

Astonishingly, carers are more likely to live with disabilities themselves. This adds another layer of complexity to their lives, demanding resilience and adaptability.

Providing care for a loved one is a noble but challenging task that can have profound effects on a caregiver’s mental health. The 2020 National Carer Survey revealed alarming statistics:

  • Nearly half of the respondents reported high or very high levels of psychological distress.
  • At least 1 in 10 carers live in rural areas.
  • At least 1 in 10 carers are aged 25 years or younger.
  • 1 in 3 carers receive a Centrelink payment as their main source of income.
  • 43% of carers are not in paid employment or looking for work.

The Hidden Toll on Health

One of the casualties of caregiving is often the caregiver’s own health. Carers, juggling the demands of their roles, frequently neglect their well-being:

  • Almost one in three carers suffer from chronic health conditions, compared to one in three Australians overall.

The Importance of Self-Recognition

It’s crucial for parents to recognise themselves as both parents and caregivers. Acknowledging this dual role opens doors to essential support systems. Here’s why it matters:

  1. Access to Resources and Services. Recognising oneself as a caregiver provides access to a myriad of resources and services specifically tailored to support caregivers. From counselling services to respite care, understanding the role opens avenues for assistance.
  2. Building a Support Network. Caregivers often find solace in connecting with others facing similar challenges. Recognising oneself as a caregiver facilitates the formation of support networks, fostering understanding and camaraderie.
  3. Prioritising Personal Well-being. Understanding the gravity of the caregiving role prompts a shift in mindset. Carers can then prioritise their health without guilt, realising that self-care is not a luxury but a necessity.

Breaking the Stigma

It’s time to break free from stereotypes and acknowledge the diverse faces of caregiving. Parents of children with additional needs are not just parents; they are silent heroes navigating uncharted waters. Embracing the dual role of parent and caregiver allows for a holistic approach to support, ultimately leading to healthier and more resilient families.

For more information on Carer support head to Carer Gateway

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