Over the past few decades, increasingly precise prenatal diagnoses, shifting social attitudes toward disability, and an obsession with the perfect child have fundamentally reshaped the epidemiology of disability. The result: fewer children born with chromosomal abnormalities, thanks to testing and therapeutic abortion. Yet at the same time, we've seen a sharp rise in what we call neurodevelopmental disorders—particularly intellectual disabilities, autism spectrum disorders, and attention-deficit/hyperactivity disorder (ADHD).
Take autism spectrum disorders. In 2000, roughly 1 in 150 American children received an autism diagnosis. Today, that figure stands at approximately 1 in 54 among eight-year-olds. In Italy, we estimate about 1 in 77 children between seven and nine years old has an autism spectrum disorder, with significantly higher rates in boys (4.4 times higher than in girls).
These rising numbers demand serious attention—especially as they shape how we deliver primary care and support disabled children and adults (and their families) across the healthcare system: pediatricians, general practitioners, urgent care, specialists, community health services, appointment systems, rehabilitation services, prosthetic and assistive devices, home care, residential facilities, and pharmaceutical care.
In each of these domains, the key players are families and professionals—doctors and workers across many levels and specialties. Families, far too often, are left to navigate the system alone—not just older families, but young ones too. It's bewildering: how do you access a service? Where do you find a phone number? How do you book an appointment? The professionals don't fare much better. There's a real, concrete difficulty among doctors in approaching any disability, in building a genuine relationship and dialogue with families—especially during that crucial moment when a diagnosis sinks in.
Disability carries so much weight, and we're not always prepared to handle it. There's still tremendous fear that a child will be judged, stigmatized. One of my young patients had obvious school difficulties. I asked her mother several times to meet with the teachers, but she kept saying everything was fine at school. When I finally managed to speak with the teachers, I discovered they were asking to talk to me too—but the mother gave the same answer: "Everything's fine." When I pressed her for an explanation, she said: "Do we want to be the family of idiots?" Two of her nephews, you see, had been diagnosed with intellectual disability.
We don't have enough child neuropsychiatrists—professionals who are essential for assessment, charting a course, and closely following domains like school, where inclusive practices often falter. A child with Down syndrome might see a neuropsychiatrist once a year. A child with neurodiversity should probably go three times. Early evaluations often take hours. When I refer a child for a neuropsychiatric evaluation because I believe he needs school support, the first appointment in my district is a year away. So Andrea, a boy with serious learning difficulties, moved to middle school without any professional evaluation. His teacher had flagged the problem with his mother, explaining that without documentation from a specialist, she couldn't let him use a calculator during math—something he'd had in elementary school. Andrea risked losing an entire school year. A whole year of his life, with no support.
And then, after years of care, these patients turn sixteen and move to adult psychiatry—a completely different system for them and their families. "My autistic son is cured," one mother told me. "At sixteen, he doesn't need anything anymore. They stopped his speech therapy. Thank goodness I have an unmarried sister living with us, or I honestly wouldn't know how to manage the day."
We doctors design countless programs. Yet disability barely features in our training.
We doctors design countless programs. Yet disability barely features in our training.
Accessing primary care is far harder for people with intellectual disability than for those with physical disability. These are individuals with multiple conditions, multiple comorbidities. Often we treat the main problem and defer the "secondary" ones—but conditions like severe cavities or polycystic ovary syndrome, if neglected, clearly damage quality of life.
Families struggle too. Opening multiple healthcare fronts when daily life is already exhausting is daunting. Services exist on paper, but they don't always function properly. When I arranged for an autistic patient to see our district's dental service, they couldn't do much—the anesthetist wasn't available. The family had to find a private dentist and bear considerable expense.
In public healthcare, specialists—dentists, gastroenterologists, gynecologists—who work with disabled patients are rare as hen's teeth. We doctors design countless programs. We focus on adolescents, eating disorders, sexual identity—and that's good. Yet disability gets almost no mention in our training. When it does come up, we concentrate on autism, as if intellectual disability were only that. We're rarely given useful tools. Everything depends on each individual doctor's sensitivity in working with young people and families.
I'm luckier than many colleagues. My time with Faith and Light has taught me to see the whole person—not only the limits (that would be dishonest), but also the potential, the capacity to do other things. What's truly missing is the ability to see the person whole.
Once I accompanied an autistic boy to surgery for an inguinal hernia repair. There I witnessed firsthand how doctors struggle. The surgeon couldn't grasp Roberto's relational difficulties. He'd been told the boy attended university, took the bus alone to get there and back. Those autonomies, in the surgeon's mind, meant that Roberto was being stubborn about needing a friend to accompany him. The surgeon missed the point entirely.
This kind of misunderstanding—rooted in ignorance—remains widespread. In our pediatric practice waiting room, I once caught the eye of a mother as other patients watched her autistic son, clearly anxious, sitting hunched in his chair. I saw in her gaze the weight of habit—the fear people feel around her son. I saw the fatigue of having to explain him, again and again. Families grow used to it. They tire. They age.
Some intellectual disabilities become psychiatric. In my Faith and Light community, there's Mrs. T., eighty-six and widowed, and her daughter Anna, sixty. "I've been fighting for sixty years," T. told me, "and now, after two decades at the day center, they don't want Anna anymore. The moment she finishes eating, she wants to clear the table for everyone." Anna has become a psychiatric patient. At home, the gate must stay permanently ajar; the worry is immense given the women's ages. When the center made its decision, T. responded with resignation, without protest: "You're in charge. You decide what to do." But who knows about Anna? Probably not even the family doctor. Anna has a sister upstairs: does she help? Why hasn't anyone taken Anna to a neurologist? Family dynamics are complex, and as a friend in this case, I have no right to judge. What's certain is that what little quality of life Anna had is now completely lost. The social and care system has abandoned her.
I hope I'm wrong, but as a doctor and from my experience with Faith and Light, I'm left with a bitter sense that people with disabilities are treated as second-class citizens. Citizens expected to be grateful for whatever they receive. What we experience in the Church seems to mirror what we see in society: there's space for children, for young people, for the elderly, for couples, for the separated. But rarely time and space for the person with disability. The fundamental question always remains the same: Who are they to us? Does disability come first, or the person? If disability comes first, the person will always be second-class. If the person comes first, they're exactly like any other citizen.
Looking back at this lack of knowledge and these prejudices, I see that while progress has been made, there's still so much work ahead—for doctors, for schools, for the Church, for families who must not be left alone. True inclusion still feels far away.