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Professionals routinely judge parents while claiming to collaborate with them.

A moral philosopher found that seeing a disabled person as fully human requires sustained "moral energy."

The solution is structural: ecosystems that keep families visible, not individual willpower.

A few years ago, a professional told me I was in denial about my autistic son's abilities. She had assessed him twice. She had her own report of things he "couldn't" do. I had a decade of evidence that he could do more than her report said.

What I didn't understand then is that this type of communication between professionals and parents is also a structural problem, one that two Dutch researchers I interviewed for my upcoming book, What Will You Do When I'm Gone, have spent years trying to name.

Little Space for the Parent's Voice

Edith Raap, a researcher at University of Applied Sciences in Utrecht who studies what she calls levend verlies or living loss, studies the chronic grief that parents of disabled children carry, not because their child has died, but because the life they imagined turned out radically different. Raap's research began with a simple observation: There seems to be little space in the Dutch care system for the parent's voice. Professionals are trained to look at the child, while the parents are placed more as an observer than an integral part of the conversation.

The judgment, Raap argues, is in the language itself. Professionals talk about "involving parents" as if parents aren't already involved, as if they need an invitation to care about their own child. Parents should involve professionals, she says, since parents are the ones navigating the system, filling out the paperwork, proving every year that their child is still disabled.

In her interviews with parents, Raap found something that professionals rarely hear: a quiet hopelessness. "I sometimes don't want my child," parents told her, and while at first she found this shocking, she learned that this statement came not out of a lack of love, but because the weight of their caregiving and the sidelining by professionals is slowly crushing them. When a parent confesses their despair to another parent, the response is recognition. When a parent says it to a professional, the response is often risk assessment, a note in a file, and, often, reporting to another institution.

Draining of Moral Energy

Simon van der Weele, a moral philosopher at the University of Humanistic Studies in Utrecht, comes at the same problem from the institutional side. He has spent years doing ethnographic fieldwork inside Dutch group homes for people with severe intellectual disabilities.

When I interviewed van der Weele, he often used the term "moral energy" or the capacity to see another person as fully human. There is a gradual decay of empathy among professionals who work long hours, get little recognition, but must use a range of creative energies to constantly connect with the severely disabled. He told me he noticed it in himself during fieldwork, the everyday repetition of disregard creating what he called a "moral atmosphere." You walk in alert, ready to work and care for those with profound differences, but after a few weeks, the energy begins to drain.

For families, the erosion is slower. Van der Weele described parents who once told richly detailed stories about what their child's gestures meant, who searched for personality in small anecdotes, gradually going quiet. When the professionals did not see what the parents saw, when they missed out on the slight gestures, or showed outright skepticism, the friction of understanding warmed. With every conflict, with every professional's empirically backed dismissal of a parent's evaluation, the moral imagination, so imperative in keeping someone visible as a full person, began to atrophy.

The places where families stayed engaged, van der Weele found, shared specific qualities. For example, the staff had been there for 19 or 20 years, collaborating with parents instead of dismissing them, drawing each other into shared narratives about residents. The places where it broke down had constant turnover. "When there's a different person working with your child every two years," van der Weele said, "you start from zero every time."

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Raap and van der Weele are describing two ends of the same failure. Raap shows how the system silences parents from the start—through judgment embedded in language, through professional authority that overrides parental knowledge. Van der Weele shows what happens decades later, when that silence has calcified into numbness, and the family has stopped imagining a future for their child.

My son's Dutch school predicted he was only capable of "non-wage-earning day activities." He now holds a paid job in New Jersey. But that outcome required a decade of refusing to accept the professional consensus—of maintaining moral energy when every institution around me was draining it. Not every parent has the resources or energy for that fight.

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