Sixteen-year-old Madeleine Lewis faces daily challenges that many cannot comprehend. Now diagnosed with level 3 autism, she’s non-verbal and can’t communicate basic needs or emotions. Her condition means that you need to monitor her 24/7 and make sure she’ll be safe and that others will be safe around her. According to her father, Simon Lewis, what has been done to Madeleine is “incredibly cruel,” which paints the easy picture of how deeply it affects his family.
As these unpredictable behaviors unfold, they can lead to rather distressing experiences. To give you just one example, one time she shredded a microwaved wheat bag and tried to eat the unheated grain. These events show how wacky her condition can be, making life very stressful for all of us. Simon recalls an era when infant Madeleine would literally just cry for four hours straight. This played into the early woes that started way before she ever got her clinical diagnosis.
The Challenges of Care
Caring for Madeleine is an around-the-clock endeavor. She needs constant supervision or else she will harm herself and people around her. Simon has suffered night terrors as well, waking up in a panic with sweat pouring off him, worrying about whether his family is safe. Given the history of his industry, he recalls times when he would report to work on under two hours’ notice. It’s a harsh reality that many parents like Trang are unfortunately experiencing.
Developmental delays were identified within weeks of her second birthday through standardized medical provider evaluations. For the Lewis family, the wait for a formal diagnosis was a crushing two-and-a-half years. This extension made their struggles all the more difficult, and the women felt isolated and abandoned. Simon makes clear his frustration at the resources not made available to families such as theirs.
“The pressure on families such as mine is through the roof — there’s not even a counselling service to ring up,” – Simon Lewis
Since her diagnosis, the family’s dependence on National Disability Insurance Scheme (NDIS) funding has grown more fragile. This support allows them to recruit more caregivers and send Madeleine to get her psychological after effects addressed. In the wake of recent talks that could cut this funding, the family has been worried about their future.
“If that [the funding] gets taken away or reduced, I don’t know where I’ll be,” – Simon Lewis
A Call for Awareness
Simon says it’s the most extreme end of the autism spectrum that society tends to overlook. He makes the case that autism is routinely downplayed as simply a unique personality difference. This misconception obscures the painful truth that families like his experience every single day. To that end, he encourages more understanding and compassion for the millions of Americans living with autism spectrum disorder as well as their caretakers.
“Autism has been hijacked into something of a quirk,” – Simon Lewis
He wants to make clear the experience of autism isn’t a superpower, it’s a giant pain in the butt. Unfortunately, too many people don’t understand just how intense these episodes can be, which fosters stigma around this condition. Simon remains an unyielding champion to help children and families affected by the most aggressive forms of autism receive the resources they need and deserve.
“There are families going through this today, and there’ll be families going through this tomorrow, and it’s time that the severe end of the community is noticed and is helped,” – Simon Lewis
Moments of Joy Amidst Struggles
Life might be different now, but that doesn’t stop Simon from enjoying special moments with his daughter. He remembers the two of them swimming in the ocean, with Madeleine squealing in joy. These moments are a window into her potential for delight and sweetness despite the challenges of her diagnosis.
“My favourite moment with her is when we would swim together in the ocean … she would be squealing with delight,” – Simon Lewis
Simon claims too that autism is a multifaceted condition that completely challenges families. He adds that doesn’t make it who Madeleine is as a person. He emphasizes the need to see past her diagnosis and to understand her as a unique individual.
“It is so intense — these children are often frightened, they are frustrated,” – Simon Lewis
