Abstract
The struggles faced by individuals and families affected by autism can vary tremendously. This, in turn, means that each family’s reality is quite different. The extreme differences in the experiences faced can lead to different needs and different perceptions of autism. In this essay, a physician shares her experiences as a pediatric physician and a mother of a child with autism, and describes a dichotomy of experiences noted within the autism community. As medical professionals, we must understand the differences in perceptions and experiences to properly care for patients with autism and their families.
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On April 16, 2025, the newly appointed US Health and Human Services Secretary Robert F. Kennedy Jr held a press conference that included remarks about autism, calling it a “tragedy” that “destroys families.” His words—suggesting that many children with autism will “never pay taxes,” “never write a poem,” or “never use a toilet unassisted”—ignited strong reactions. For many in the autism community, the comments were painful, even dehumanizing. But the responses to his statement revealed a deeper divide within the community—a divide between different lived experiences with autism that are often worlds apart. As medical professionals, we must understand the differences in perceptions and experiences to properly care for patients with autism and their families.
I witnessed polarizing reactions emerge from families and self-advocates within the autism community. Some were outraged by Kennedy’s depiction. Many individuals with autism do live independently, hold jobs, write poetry, and date. Many reject the idea that autism is a disease needing a “cure” and instead see it as an integral part of their identity—something to be accepted and celebrated. For them, autism is not a tragedy but a different way of experiencing the world; it is their “superpower.”
Others did not share this outrage. Imagine being a caregiver to a child or adult with autism who is nonverbal, not able to prepare food or use the toilet without assistance and requiring supervision every minute of every day. Imagine constant worry about elopement from the safety of caregivers. These parents are desperate to decrease the obstacles their children face and find a path to greater independence. To them, autism is not merely a difference—it is a profound disability that impacts every aspect of daily life. Their goals may not be to “cure” autism in the traditional sense, but to remove the barriers that prevent their children from thriving and sometimes from just surviving; the opportunity to ease struggles that can impact every minute of the day and interfere with tasks others easily take for granted. Both perspectives have truths rooted in lived experience.
As a physician and mother to a child with autism, I understand the variation in perspective. As a pediatric oncologist, I partner with families to ease the burdens of disease and cure cancer—to remove a disease that threatens to cut their futures short and diminish their full potential. This same energy, passion, and love that inspires me on a daily basis to help others in need reach full health and quality of life, also drives me to advocate for my son. I seek every therapy that might help him communicate more, cope better with disappointments and change, and gain independence—not because I want to change who he is, but because I want to ease his struggles and see him flourish in the world. And I celebrate every victory—I celebrated the first time he called out “mommy” or said, “I love you.” I celebrate each moment he makes a connection with others. These victories might seem small to others, but for us, they are enormous. They represent progress toward a future in which he can thrive on his own terms. I have witnessed him transition from a frustrated toddler who seemed locked in his own world to a happy and energetic boy who is learning to navigate the world. I see endless possibilities, and I want to continue to give him the tools to reach his greatest potential. Today, he is a child with autism with me to support him and advocate for him, but this situation will not last forever; I must prepare him for his future beyond childhood.
I know there are families who reject certain interventions or therapy, fearing it might suppress their child’s authentic self. I’ve watched my son become visibly happier as he learns to cope with sensory overload and change. I’ve seen his meltdowns decrease and his joy increase. To me, therapy is not about reshaping who he is but unlocking more of what he can be
Autism is a spectrum not just in medical terms, but in the way it touches families. For some, it is an identity or even a special advantage. For others, it can be a relentless, exhausting caregiving responsibility. Many live somewhere in the middle—often struggling to balance hope and hardship, celebrating strengths and progress while fearing the future. I think we are all united in some way by fear—fear of the unknown, fear of the inability to conquer challenges, and fear of not being accepted.
For all the members of the medical team caring for patients with autism, I urge you to truly listen to the patient and family and hear their concerns and reasons behind their choices. Please share your professional opinions, provide individuals and families with the scientific data behind your recommendations, and partner with them on their journey navigating this world.
To the many self-advocates with autism who are able to share their achievements (whether they are verbal or not): I honor and celebrate your “voices” and how autism may have shaped you. You are living proof that autism is not inherently limiting. Your stories are powerful and necessary. And for everyone struggling, I see your exhaustion and dedication. I see families stretched thin, trying to manage therapies, appointments, school placements, and financial burdens. I see the heartbreak when their child self-injures or cannot communicate. I see the fear of all the potential harms in the world that a vulnerable individual might encounter and the fear that this harm may never be communicated, the guilt over putting a child on a long bus ride to get an appropriate education, for example, and the constant parental worry about what will happen to their children with autism when they are no longer alive or able to care for them. I see the loneliness and frustrations living in a world not made for your child. I see a world that seems to create infinite roadblocks for the autism community. I also see boundless love—love that overcomes the sheer exhaustion, guilt, and disappointment. I see the desperation to find more help and more answers. These parents are not trying to erase their children’s uniqueness—they are trying to give them the tools to live in a world not built for them. I know, because I am one of them.
The contrasting examples presented here aren’t meant to suggest that autism has only two endpoints. The reality is, autistic experiences are diverse and nuanced, and no single narrative defines them. Autism isn’t a linear scale, but a multidimensional spectrum in which strengths, challenges, and support needs vary across different areas of life. Most individuals fall somewhere in between the extremes. Each individual carries a unique mix of traits that can shift over time and across environments. Each person—and each family—deserves to have their specific experiences understood on their own terms, rather than being placed along a single continuum.
This is not a political statement. It is a call for understanding and compassion. I want the world to not only accept and include individuals with autism but also recognize that they possess incredible talents and important viewpoints. I also want to acknowledge that the reality for each family affected by autism varies; the struggles and degree of independence and disability vary significantly. Autism did not and will never “destroy” my family, but it has fundamentally changed the way we navigate the world.
I hope for more scientific research, more evidence-based therapies, and more resources for families across the spectrum. But most of all, I hope for a community—within and beyond the autism world—that sees each person, each story, and each truth with open eyes and open hearts. Let us not judge one another for how we cope with the realities of autism. Let us instead lift each other up—so every person with autism, and every family, can thrive in their own way.
- Received for publication July 16, 2025.
- Revision received January 19, 2026.
- Accepted for publication January 26, 2026.
- © 2026 Annals of Family Medicine, Inc.
