Stronger together: Embracing autism on another level

APART from the influences on a child, autism has a ripple effect through a number of systems. Considerations for care and intervention for the child with autism, the parent and the family need to be at the forefront of our minds as professionals and society at large.

During autism month the key focus is on awareness, however the new “A” word we should rather consider is acceptance. Awareness around autism has increased over the years and main stream media has allowed for more exposure of the condition.

The flip side of awareness is acceptance. Within my focus of research I have had a particular interest in parents specifically how they cope and how autism may have impacted their quality of life and well-being.  Key findings that have emerged point to a bigger picture about autism. 

‘Stronger together’ has become our unique mantra in South Africa as we have faced challenges and victories as a nation. The us and them perspective so deeply engrained in humans is challenged as we take up the ‘stronger together’ mindset. 

Autism poses a challenge to our rhetoric of what is deemed typical and should push us to accepting people despite their difference. To thrust ourselves further into acceptance we need to adopt a ‘stronger together’ perspective towards autism.   

Autism is a neurodevelopmental condition that can be diagnosed in early childhood. The condition is characterised by communication and sensory difficulties which may impact on how an individual may react or behave in certain situations.

Autism is known as a spectrum disorder meaning that each individual has their unique strengths and challenges. Similarly, parents of autistic children have unique stresses and challenges which are exacerbated by systemic challenges. A few of these challenges include inadequate educational options for children, stigma and delays in health care for their children due to delayed diagnosis. 

Parents experience stigma for example, what is perceived as seemingly bad behaviour in a child with autism results in people placing blame on parents for poor parenting. Accessing health or social care facilities is challenging for parents as children with autism may struggle in crowded spaces and cannot manage the long waiting periods.

Within these contexts parents are stigmatised as not being able to manage their child’s behaviour. Parents need to plan their routines to mitigate any potential challenges that may arise in community spaces such as shopping centres where crowds, loud music and lighting may result in an adverse sensory response for the child.

At other community levels, parents are excluded from activities or events because people misunderstand behaviours and means of communication with children with autism. Society, in general, does not have the skills to relate to autistic children. Children become overwhelmed in specific environments, which leads to judgement, abuse, exclusion, alienation, and stigma from society.

Places of worship, clinics, government departments, and shopping centres are a few organisational structures that require awareness of the needs of parents and children with autism. The commonality in these challenges is the lack of awareness of autism and how to accommodate families within community structures. 

As we move from awareness of autism to acceptance health and educational systems, community structures, and society need to play an active part in considering the needs of parents and autistic children through awareness, increased tolerance, policy development, and improved service delivery. Health and educational systems, community structures, and society have the potential to be supportive of parents and children with autism. 

Communities, society and people within these systems have strengths and assets that can help reduce the stigma faced by families living with autism; aid in improving their quality of life and provide support where needed. The motto ‘stronger together’ rings true here as ALL choose acceptance and ALL choose to assist in practical ways to foster acceptance of individuals with autism who are part of our society.

Dr Debbie Fewster is an occupational therapist and lecturer in the occupational therapy department at the University of KwaZulu-Natal. With 18 years of clinical practice and 12 years in academia, Debbie has experience and interest in neuro rehabilitation, psychiatry and peadiatrics. She completed her MPhil in Group Therapy and PhD at UKZN, with a special interest in autism and caregivers. Her views don't necessarily reflect those of the Sunday Tribune or IOL.

SUNDAY TRIBUNE