April is Autism Awareness Month, a time to spotlight the challenges faced by individuals with autism and their families and despite growing awareness, many misconceptions about autism still persist, and understanding remains limited.
Zaida Frank, spokesperson for Autism Connect, Nicolette Ripepi, founder of Autism Connect Learning Centre, and Nikki Simons, Clinical Psychologist at the Neurodiversity Centre in KZN, are all working tirelessly to combat these misunderstandings and promote greater inclusion and support for those on the spectrum.
Frank highlighted a key issue: the widespread misconceptions surrounding autism. "People often assume autistic individuals behave like fictional characters such as Dr. Shaun Murphy from The Good Doctor or Sheldon Cooper from The Big Bang Theory," she said.
This oversimplification of autism, alongside the damaging belief that it is caused by supernatural forces or parental actions, continues to fuel misunderstanding.
"These misunderstandings could be resolved if society as a whole became more inclusive and better informed about the condition," Frank believes.
Despite laws advocating for inclusivity, Frank pointed out that "the actual implementation and societal acceptance of these rights often fall short, explaining that parents and carers of autistic children are frequently left to navigate a system that doesn’t fully support them.
"When individuals and society fail to truly reflect inclusivity, we end up alienating and ostracising what we don’t understand.”
She calls for a shift in society’s approach, urging that autistic individuals should not be forced to conform to narrow societal standards.
“For them to thrive, they need to be seen for who they are. This understanding begins with education and simple acts of empathy. Families are encouraged to be patient and to remember that everyone develops at their own pace, in their own time."
Ripepi shared her own journey as a mother to Tyler, who was diagnosed with autism.
Inspired by the lack of understanding and resources, Ripepi founded Autism Connect Learning Centre to provide support, education, and advocacy for families like hers.
"It’s been incredible to see Tyler grow and thrive," she said, reflecting on the progress her son has made.
Ripepi’s journey, however, has not been without challenges.
She recalls the times when strangers have not understood Tyler's behaviour, often facing stares, whispers, and criticism.
"To cope, I’ve focused on educating both myself and others about autism,” she explained.
Her approach to handling negative situations involves calmly explaining how autism affects her son and using humour to diffuse awkward moments.
Ripepi also highlighted the need for accurate representation of autism, particularly in the media.
"The media often focuses on severe cases or exceptional talents but autism is a spectrum where every individual is unique.”
For parents who are new to the experience of raising a child with autism, Ripepi offered heartfelt advice: “You’re not alone. There are people who understand, and there are resources available."
She also stressed the importance of celebrating every small victory and being an advocate for one’s child.
Simons highlighted the critical issue of misdiagnosis in autism.
"Research shows that one in four children exhibiting autism symptoms do not receive an ASD diagnosis, and similarly, one in four autistic adults are initially diagnosed with another condition before receiving their correct autism diagnosis," she explained.
Simons pointed out that autism can often be missed, particularly in girls who may camouflage their symptoms.
"Girls often present differently, making autism less noticeable," she said.
She also explained that less classic cases or milder forms of autism may be overlooked, especially when symptoms are masked or social demands increase.
Misdiagnosis can also occur due to the overlap between autism and other conditions, such as ADHD or Tic Disorders, making accurate diagnosis difficult.
"70-80% of ASD cases have overlapping conditions," Simons added.
Simons urges a more thorough, multidisciplinary approach to diagnosis and emphasised the need for specialised training in autism diagnosis.
Like Frank and Ripepi, she highlighted the importance of supporting families after a diagnosis is made, advising parents to create a low-arousal, neurodiversity-affirming environment to prevent meltdowns.
"Empathy and support are key," Simons said, stressing that parents should focus on supporting the child in their environment rather than trying to change them to fit a neurotypical mold.
"Creating strong support structures for the entire family is essential for coping with the challenges of autism," she concluded.
Weekend Argus