Why Parents Shouldn't Grieve Their Autistic Children

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A friend whose daughter is autistic recently told me that her therapist encouraged her to mourn the daughter she didn’t get (i.e., the neurotypical one). My friend struggles to parent her daughter, who is not quite the companion she had envisioned when she was pregnant. The imagined child was going to be different, and the task at hand was to grieve.

There is no doubt that raising a disabled child makes parenting more challenging. Things we were counting on, like an easier lifestyle, a supportive community, or clear school choices, are no longer guaranteed. But it’s vital to point out that even though many of these experiences may not happen, it’s not the child we are mourning. We are grieving our own expectations, the systems around us, and the stigma, uncertainty, and stress of raising a neurodivergent child in a neurotypical world.

A Deficit-Based Framework
This misplaced grief narrative, advocated by my friend’s therapist, stems from a deficit-based framework that views autism as a loss. The grief narrative becomes a therapy trope and a developmental mandate for the parent to mourn. When clinicians insist that parents must grieve who their child is, that narrative becomes profoundly damaging. The problem shifts to the child rather than focusing on the environment, and autistic children are highly sensitive to the emotional tone around them. They pick up the message that “There is something about me that is bad and must be gotten over.”

Parents of autistic children are right to resent all the obstacles around them. They are justified in raging against a world that makes it difficult for their children to flourish and for them to become the competent parents they sought to be. But none of this is the child’s fault.

As autistic advocate Jim Sinclair so poignantly writes in his lecture, "Don’t Mourn for Us" (1993),

“Autism is a way of being. It is not possible to separate the person from the autism. Therefore, when parents say, 'I wish my child did not have autism,' what they’re really saying is, 'I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.'”

The initial shock of discovering that your child is autistic is sometimes labeled as grief, but it is actually an acute stress response fueled by anxiety and fear of the unknown. Over time, this fear and confusion can transform into advocacy and pride once the shock is processed. When parents of autistic children feel grief, it often relates to the world around them, not the child itself. There is grief over losing perceived omnipotence, believing we can protect our child from stigma and systemic barriers. Will my child be bullied? Will they be OK when I’m gone?

When my autistic son was younger, I felt grief about his lack of close relationships. Another parent insightfully told me that this feeling was a projection of what I needed, and that was true. I was projecting my social needs onto my son because he genuinely enjoys solitude. While many autistic people crave friendship and love, some do not, and accepting this was my responsibility. My task was to get over my own fear of my child being lonely and respect his needs as separate from mine.

Structural Grief
Michael S. Hogue, a theologian and ethicist, helped develop the idea of “structural grief.” Structural grief arises from difficulties in accessing support, accommodations, and acceptance. According to Hogue, “structural grief is the emotional wake created by ongoing loss produced by social systems, losses that are often unnamed, ungrievable, and socially disavowed.”

Structural grief involves ongoing, socially created losses resulting from a culture not designed for diversity: schools that demand behavioral conformity, social expectations of “independence” and productivity, and healthcare systems that pathologize neurodivergence. When we grieve that our children’s safety is reliant on our constant presence or that we spend most of our time fighting systems rather than living, that is structural grief. It is not a failure of acceptance. It is a chronic, natural response to systemic injustice and the exhaustion resulting from constant advocacy.

On an existential level, structural grief forces parents to rewrite their values and life story. It shatters narratives around progress, independence, and “how things are supposed to go.” Normative timelines, developmental trajectories, and the idea of independence as an end goal become irrelevant. Our children’s lives and our lives are incompatible with these prevailing assumptions. And unlike traditional grief models, structural grief offers no closure, no resolution. It does not follow the usual grief arc leading to acceptance. It is a never-ending and appropriate response to institutional failures.

What structural grief can do is foster collective agency and serve as a catalyst for transformation. When we look at what is possible now, structural grief reorients us to new meanings and identities. There may no longer be predictable outcomes, but we can choose attunement and responsiveness to our child over typical measures of achievement or productivity. We can expand our connection to marginalized communities and awaken ourselves to a life that is more present and just.

This awakening comes from connecting with who our child is, not by mourning a person that never was.

As Sinclair says:

”Grieve if you must, for your own lost dreams. But don't mourn for us. We are alive. We are real. And we're here waiting for you."