Understanding Autism: A Journey Of Love, Acceptance, And Realities

Langston Hughes professed, "Go home and write / a page tonight. / And let that page come out of you— / Then, it will be true." This quote resonates deeply with me as I reflect on my life as a 42-year-old mother of two boys, the youngest of whom is autistic. Over the past eight years since his diagnosis, I have grappled with the notion that autism could be seen as a blessing or a gift. Though many claim to find silver linings, my experience has led me to believe that such a perspective does not encapsulate the complexity of our journey.

In the realm of autism parenting, there exists a pervasive culture of toxic positivity. Social media, well-meaning fellow parents, and even medical professionals often discourage the open expression of negative feelings regarding autism. We are led to believe that any hint of negativity is unacceptable, which often leaves parents feeling isolated and unheard.

We are not allowed to voice the challenges we face in a world that often fears differences. The reality is that watching my child navigate a society that can be unkind and unaccepting is heart-wrenching. There are days when it feels overwhelmingly lonely. Instead, we are told to "embrace the journey," "find the joy," and be grateful that "it can always be worse." However, these platitudes fail to address the real struggles that autism families encounter daily.

At least he’s happy. At least he’s healthy. These are the reassurances I often hear, and while they are well-meaning, they reflect a misunderstanding of the complexities involved. When I began teaching high school English in 2004, my fear of autism stemmed from a lack of knowledge. The students I encountered often seemed enigmatic, and their parents sometimes appeared overly protective. I feared that the same fate would befall my family.

Children with autism frequently face isolation, being labeled as "weird" or patronized with sympathetic smiles. The thought of having an autistic child was terrifying, and I often worried about how society would treat him. My experience as an autism mom has deeply influenced my teaching philosophy, where kindness and acceptance now take precedence over curriculum.

I regularly share stories about my son’s traits and experiences to normalize autism in my classroom. I strive to connect with parents of my students on emotional levels, hoping to foster understanding and acceptance. This journey is mirrored in my personal life, where I have learned to embrace my son’s uniqueness, even amidst the challenges he faces.

In public settings, I make it a point to address onlookers who may be whispering about my son. My goal is to educate and enlighten them about autism, hoping they will extend that understanding to others. However, I must admit these discussions often serve a dual purpose: they are also a plea for kindness towards my son.

As an autism mom, I often feel isolated, even among friends who genuinely care. Their well-intentioned questions can feel superficial, as they can’t fully grasp the unique challenges I face. I may find myself feeling envy towards other parents celebrating typical milestones, while I worry about my son’s future.

Authentic connections often arise from conversations with other autism parents, where we can discuss our experiences candidly. The difficulties we face are often not comprehensible to those outside this community. Only fellow parents truly understand the small victories, like successfully potty-training my son or managing a trip to a new store.

While I continue to fight for my son and believe in his potential, I will never say that I am grateful for this tumultuous journey. I often find myself mourning the life we once envisioned, filled with plans that now feel out of reach. I will always wish that I could take his autism away, but I also recognize the deep love I have for him and the complexities of our reality.

My experience has taught me that loving my son does not mean I have to embrace autism unconditionally. Two truths can coexist: I will always love my child, and I will always wish for a different path for him. We do not have to convince ourselves that every aspect of our journey is a gift; sometimes, it is just a struggle, and that is okay.

Beth Ruggiero Bell has been teaching high school English literature and composition for 20 years in her hometown in Upstate New York. She is a married mother of two boys, the youngest of whom was diagnosed with Autism Spectrum Disorder at age two. She is a strong advocate of speaking candidly and vulnerably about the realities and complexities of parenting special needs children.

All views expressed are the author’s own.