Behind every diagnosis is a family learning to inhabit an unexpected future. In the Azores, mothers of children with autism speak of therapies costing more than €1,000 a month, inadequate public support, social misunderstanding and a question that becomes heavier with time: who will care for their children when they are no longer here?
There is a particular kind of grief that does not come from losing a child, but from having to relinquish the future one had silently imagined for that child. Susana Couto describes the diagnosis of her son Rodrigo as standing on a railway line while a high-speed train approached. There was relief in finally knowing what was happening, but also something she compares to mourning—a “mini horror film” populated by questions for which nobody could provide answers. Rodrigo had developed typically until around eighteen months, when changes began to appear: instead of building with Lego, he lined pieces up; he stopped responding consistently when called, developed repetitive hand movements, became intensely absorbed by television and suddenly rejected foods he had previously eaten. The definitive diagnosis came only when he was three, after the family traveled to a clinic in Porto.
Rodrigo, now described by his mother as having level-two autism, is still largely nonverbal, although he has developed some words and simple phrases for basic needs. What followed his diagnosis was not a treatment but a succession of possibilities. “There is no pill,” Susana explains, and no therapy accompanied by a guarantee. What works for one autistic child may do little for another. At one point, she and her husband were spending more than €1,000 every month on therapies. Each new intervention became another experiment undertaken with hope, expense and uncertainty. It is here that autism ceases to be merely a clinical diagnosis and becomes a family economy—measured in appointments, hours, journeys, rearranged routines and money that parents somehow find because the alternative is wondering whether they failed to provide something their child needed.
Natércia Amaral encountered a different version of the same loneliness. Her son Jaime, who has level-one autism, was first identified as possibly autistic after entering first grade. The diagnosis itself was difficult, but she says the reaction of others was harder. Members of the family believed she was inventing a label for her son. Even now, with Jaime approaching twelve, people tell her that he “doesn’t look autistic.” “It hurts,” she says. The remark exposes one of autism’s enduring social difficulties: because there is no single appearance, behavior or experience that defines the spectrum, children whose needs are less immediately visible can find those needs minimized. Natércia says Jaime has received speech therapy, psychomotor therapy, psychological and educational support at school, but as he moves to Domingos Rebelo she has been warned that those services may not continue.
It was from listening to experiences such as these that mental-health and psychiatric specialist nurse Silvina Marques recognized another unmet need: parents needed one another. Her research into hope among mothers of autistic children repeatedly produced the same response, particularly from those confronting a recent diagnosis. They wanted to speak with someone who had already walked—or was still walking—the same road. At APPDA Açores in Ponta Delgada, Marques therefore helped create a support group that now has 40 registered participants. Its importance lies partly in allowing parents to say things that require no explanation. Mothers, Marques observes, are frequently overwhelmed by the ordinary demands of work and family combined with therapies, rigid schedules and the need to maintain routines that give their children stability. In her assessment, political authorities still do not adequately understand the weight carried by these families.
And then there is the word “inclusion,” perhaps one of the most frequently invoked words in contemporary education and one of the most painful when families believe reality does not correspond to policy. “Inclusion is a word written on a piece of paper,” Natércia says. “In my case, I did not feel inclusion.” Susana remembers feeling exclusion when Rodrigo, who had been enrolled in a regular class through second grade, moved into occupational education. She believed the new setting no longer provided the stimulation he required. Their testimony does not suggest that every autistic child needs the same educational model—indeed, their own experiences demonstrate precisely the opposite—but it asks a more difficult question: whether inclusion can truly be called inclusion if the individual child is present within a system without receiving the support necessary to participate, communicate and develop.
For 23 years, APPDA Açores—the Portuguese Association for Autism Developmental Disorders in the Azores—has tried to occupy some of the spaces left between diagnosis, services and family life. The organization defines its mission broadly: education, empowerment, family support, community awareness and the defense of the rights of autistic people. It argues that inclusion cannot simply mean attending school or technically having access to a service. A person must also have the conditions necessary to communicate, make choices, develop autonomy, participate in community life and construct a dignified life project. Across an archipelago of nine islands, however, the association acknowledges that access to specialized services remains unequal. Its current work includes diagnostic consultations, psychological and psychoeducational support, family counseling and the CAARPD social rehabilitation service, as well as GAMPE, a mutual-help group developed with the São Miguel Island Health Unit.
Behind all these immediate concerns stands the question parents find hardest to contemplate: adulthood. Therapies, classrooms and educational accommodations dominate childhood, but children grow older. Parents do too. For Susana, Natércia and many families like theirs, the future therefore carries a fear deeper than the next appointment or school year: what happens when they are no longer present to interpret a gesture, defend a right, organize a routine, accompany a journey or recognize what their child is trying to say?
That may be where any serious discussion of autism in the Azores must ultimately begin. Not with the comforting vocabulary of inclusion, but with the structures that make inclusion real—from diagnosis and therapy to education, employment, autonomy, supported living and care across an entire lifetime.
Because inclusion cannot remain a sentence in legislation, a paragraph in a school policy or, as Natércia Amaral puts it, “a word written on a piece of paper.”
For a family living autism every day, inclusion must become a place in the world.
Based on a story by journalist Sara Sousa Oliveira for Notícias que Contam.