When Michael was young and had little words to say, I was desperate to understand what he needed so I started following and listening to autistic adults. I wanted to make sure I am helping him; and what could be better than figuring out how older autistic individuals perceive the resources available for parents of younger ones.
I Immediately realized the divide in online advocacy: Parents of young autistic children define autism as a medical condition. On the other hand, adults fight for autistic identity and acceptance.
As a mother of a young autistic child, and working with several autistic adults, I cannot help but feel at a loss, as I empathize with the arguments that each side makes.
I am a fierce advocate for acceptance and inclusion. I firmly believe that everyone deserves his/her identity to be acknowledged and rights to be respected.
However, when do we draw the line on acceptance and celebrating neurodiversity?
Accepting the autistic identity does not mean disregarding many health issues that once identified and treated can improve life quality and wellbeing. One of the sad memories I have from Michael’s childhood is that pediatricians never questioned his inability to sleep or his constipation battles. In fact, they considered it as some of his autism’s manifestations. It was not until I met other moms who were brave enough to challenge the status quo, that I realized that these struggles should not be an integral part of any autism diagnosis. In fact, the healthier we are, the easier it is for our personality and individuality to shine.
As a mother, all I want for my children is to be happy, and good health is the foundation for happiness. Striving for better health does not equate refusing the autism diagnosis or wanting to restrict a child’s individuality. If anything, it is the ultimate manifestation of love. Treating Michael’s allergies and digestive problems allowed him to feel better and allowed us to see his uniqueness that was once covered under layers of pain, frustration, and anger.
I completely support his unraveling love for trains and water parks. I respect his inability to tolerate crowded places and loud noises. I continue to fight the education system that enforces compliance and does not nurture special talents. Yet, I am forever grateful for all the moms who paved the way to biomedical interventions. They helped us improve his health and wellbeing.
To all the autistic self-advocates out there, please know we, as parents, are on your side. Most of the biomedical interventions aim to improve our kids’ health, and not change who they are. We celebrate autism and neurodiversity, but we refuse the pain that is confused with a “Severe Case of autism”.
To Michael, you are my sunshine and the reason for my existence. I will forever fight so you are healthy, accepted, and celebrated for the amazing human being you are.