The ultimate trigger on my autism journey is encountering people who passionately claim that autism is not a disability and does not need to be “fixed”. Understandably, these sentiments are often voiced by highly functional autistics who live independently and possess the ability to articulate their thoughts eloquently. While the discouragement of labels is a common theme on this path, for the sake of clarity, this group would typically be described as being high functioning or having mild autism.
The issue lies in the fact that these individuals often become the de facto representatives of the entire autism spectrum, advocating that autism should not be viewed as a disorder needing correction. However, this one-sided narrative does not encapsulate the vastly different realities experienced by families and individuals on the more severe end of the spectrum.
As a mom of a 14 year old who is not yet speaking and struggles immensely to express his needs – often resorting to aggression and property destruction as a form of communication – I see the world of autism from a very different angle. My son, whom at 14 still experiences poo accidents or sometimes forgets to clean himself after using the toilet and has a history of smearing and consuming his own excrement, faces challenges that are unimaginable to many. Parenting him is, without a doubt, the most difficult task I have ever undertaken. It has changed the trajectory of my life and that of my entire family, confining us to a 24/7 caregiving cycle that limits our ability to generate income, engage in social activities and even travel together as a family.
Our days are often punctuated by hospital visits for injuries, either self-inflicted or sustained during meltdowns by us (the caregivers) – and efforts to replace shattered windows and repair other damage, sometimes even in the homes of neighbours or strangers. The public, informed primarily by the narratives of those with mild autism who can self-advocate, often fails to understand the depth of these hardships. This misunderstanding feeds a dangerous myth: that our need for support is exaggerated. It clouds public perception and, more concerningly, confuses policymakers and government agencies, resulting in inadequate allocation of resources such as specialized schools, assisted living facilities, and financial aid.
This romanticized view of autism perpetuated by mainstream media showcasing mostly the high-functioning, glosses over the severe cases that are becoming more prevalent each year. This selective portrayal further silences families who face overwhelming challenges and denies them the empathy and assistance they desperately need. We need to reevaluate the narrative surrounding autism to encompass its full, complex spectrum. This would mean acknowledging that while some individuals may thrive and celebrate their neurodiversity, others are burdened with challenges so severe that they impede basic daily functioning.
It is essential to question whether we should even treat autism as a single unified condition. What if the varying degrees of autism have different root causes? While I can understand hereditary factors contributing to high functioning autism, what if severe autism stems from, or is intensified by, other factors – such as environmental influences like GMO diets, toxins, or even spiritual imbalances?
The conversation around autism must evolve to reflect its multifaceted reality. We must create space for all voices – from those who champion neurodiversity and acceptance to those who desperately seek interventions that could provide relief from debilitating challenges. Only then can we approach autism with the nuance and empathy it demands and drive policies that support everyone on the spectrum, not only those who can advocate for themselves.