Living the beauty, fury, and contradictions of severe autism.
Jackie Kancir is CURE SYNGAP1’s Patient Advocacy Director. She is nationally recognized for her experience in public health policy, disability rights, and special education, among other areas. She has authored and participated in numerous articles, projects, and public forums, several of which are noted on her bio page. Jackie’s daughter, Jadyne, was diagnosed with SYNGAP1-related disorders in 2019.
You can listen to this article in Jackie’s own voice on Substack. It has been reprinted here with her permission.
I love my daughter with every fiber of my being. I love her wide grin that bursts forth with abandon, her laughter that bubbles up without reason, her tender hands that stroke baby rabbits as though they were spun of glass. But I loathe the reality that she has no occupational therapy. On paper she qualifies, yet every agency has turned her away with the same verdict: “behaviors.”
I marvel as she speeds down the road on her ten-speed bicycle, shouting through laughter, “Me! Watch me! Faster, Mom, faster!” But I am dragged back to the sterile hospital room in the 2000s, where a sea of white coats pronounced her future: seizures, autism, a girl who would never walk or speak more than ten words.
She sure proved them wrong!
I delight in her silly “knock knock” jokes, her joy needing no punchline apparently. But I ache that she cannot tell me if someone has harmed her, or even if her words are memory, scripting, or a cry for help.
I am profoundly grateful for the doctor who pulled her back from acquired malignant catatonia. But I dread the two-hour drives every other week, her fists sometimes pounding against the vehicle partition as I white-knuckle the steering wheel at seventy miles per hour, praying the partition holds.
I am filled with awe when she gathers eggs, her face alight with pride, a natural chicken whisperer. But I seethe when I remember she cannot sell them at the farmers market, because despite a waiver promising support, she has none.
I cherish every day with her, even the hardest. But I live with gnawing terror every night before I close my eyes: if I die in my sleep, how long until anyone finds her, alone in this house with her dead mother, unable to call for help, to make food, to order food, to survive? If she survives that, the types of placements that she’d be shuttered off to will haunt me from my grave.
I adore her compassion, her humor, her fierce spark. But I also remember the cafeteria emptied by her meltdowns, the tiled hallways ringing with her screams, the bathroom cleared of other girls so staff could change her urine-soaked clothes. Her older sister swears she was destined to be “hell on wheels” if she had been dealt a better hand, the star of every stage, the class president, the wild one surrounded by friends. I cannot help but agree.
I count myself fortunate to know the cause of her autism, a de novo mutation in her SynGAP gene. Knowing this has guided treatment and given us hope. But I burn with indignation when politically-motivated ideology smears causation research as “eugenics.”
I love my independence as a single woman, the freedom of my own life. But I mourn the marriage that ended, not from lack of love, but because crisis upon crisis from autism crushed what even love could not hold together.
I am thankful for this quiet rural life where my daughter can scream into the hills without neighbor complaint. But I grieve the dream home I sold to give her the farm, the space, the daily rhythms she deserved.
I am proud of all my children. But I ache with my oldest over the ordinary sisterhood she feels was stolen from her, and for the all-star brother who lost a cheering mother in the stands because his sister could not tolerate the crowds.
I am grateful for friends and family who tell me I am a good mother on the days I most doubt myself. But I carry the enduring guilt of knowing my other two children received only fragments of me, because their sister could never be left without me.
Autism, like epilepsy, gastrointestinal distress, immune fragility, and catatonia is not her superpower. It is her disability. It has shackled her dreams, including her deepest: to become a doctor, like the kind heroes who saved her life. And I know she would have been an extraordinary one.
I feel no shame or guilt that my daughter has autism. What I feel is fury at the multimillion-dollar campaigns that dress suffering as a gift, that promise genius if only the mom “never gives up,” that sell the fantasy of transformation, while in the same breath preaching acceptance as one is. I have not given up. She still has autism. She always will. That’s not my fault. It’s not because of something I did or didn’t do. It just is.
What we need is not more patronizing, but a system that will not deny her services because of “behaviors” that are involuntary symptoms of her disability, that will not leave her without therapies she is entitled to, that will not pretend suffering is special abilities to celebrate. The gap between their rhetoric and our reality is the true crisis.
And yes, I know what will follow. There will be voices, indoctrinated by the tyranny lens of disability ideology, who will not see the nuance of these interdependent relationships. They will echo the predictable attacks, falsely accusing me of having a deficit-based mindset, of ableism, of denying her access to robust communication aids—none of which are true. They will dismiss what they cannot comprehend, but this is not written for them.
This is being written for the possibility that one person reading will look at severe forms of autism through a more authentic lens. That they will abandon the hollow mainstream narratives and join families like mine as allies. That they will fight for the better tomorrows our children have waited for far too long.
Autism does not define my daughter. It’s not her identity. It is her disorder. It diminishes the light that emanates from her core being, which she fights every day to shine despite autism. And the cruelest injustice of all is the mainstream narrative that dares to tell us otherwise.
