Habitat for Autism: Building Dignity and Community

Every parent of an autistic child faces a profound grief that must be processed: a son or daughter who will outlive us, and who, except in the rarest cases, will never be fully independent in daily life. All of us have asked why this happened to us. All of us have wondered how not to feel shame at our children's behavior. None of us were prepared for anything like this. All of us wished for a normal family life—a future for our children. Some parents cannot accept this reality and withdraw into themselves, chasing one therapy after another in hopes of the cure they have dreamed of. As an association, we work to discourage all therapies lacking scientific foundation. We try to celebrate our children's peculiarities along with their achievements. And we encourage parents to preserve spaces of normalcy in their own lives—for themselves, and for their other children. These moments of normalcy, we believe, are essential. When we step back and recharge, we can offer our children our best selves. Our meetings exist to support parents who feel most fragile. We remind them that we fight for small victories that, taken together, help our children become more accepted by society—and secure them a dignified, acceptable life both now and after we are gone. We fight with the hope of building social farms where they can live and work alongside qualified staff, under family oversight. The nonprofit association Habitat for Autism was founded in July 2003 by five parents of autistic children who wanted to pool their efforts. Our goal: to defend our children's rights and build a certain, safe path for the time when we are no longer here. Today, we have more than 200 members. The Italian Constitution guarantees all citizens the medical care necessary for their health. Yet for our children, this right is not upheld. Once diagnosed with autism, they receive almost no "rehabilitative" care—perhaps one hour per week of physical therapy or speech therapy. But scientific research and the guidelines of SINPIA (the Italian Society of Child and Adolescent Neuropsychiatry) emphasize the critical importance of intensive, early intervention: 10 to 15 hours per week of advanced educational and rehabilitative approaches. This is already standard in America and many other European countries. Our children do not receive it. The right to education is barely protected in Italian schools either. Schools do not guarantee adequate hours of special education support matched to students' needs, unless parents file formal complaints with the education authorities. Teachers who provide this support are almost always on temporary contracts and lack specialized training. Professional development for support teachers is optional. Other disabled communities—the deaf, the blind—have secured not only support teachers but also specialists in gesture communication and Braille. Our children receive far less. Our children face severe attention difficulties, often paired with moderate to severe intellectual disability. They struggle to understand the purpose of interaction between two people. Most cannot comprehend words, especially those spoken during classroom lessons. Their behavior shows many verbal and motor stereotypies. In cases of particularly self-injurious or aggressive behavior, schools do not guarantee specialized staff. Instead, education authority hiring lists often open to young, inexperienced classroom teachers who, seeking to accumulate seniority points, accept temporary assignments in special education. Add to all this the fact that schools, invoking their autonomy, often refuse to collaborate with external specialists. The only mandated contact with specialists comes through the GLHOs—the official committees that meet twice a year by law. Twice a year. What are the results? Years that could have been transformative—for skill-building and for peer integration—are squandered, depending entirely on the goodwill of whichever teacher you happen to encounter. Is all this the fruit of lucky coincidence, or simply disaster without end? And then, once school ends, there is nothing. We are left to choose between half-day programs (when there is room) and residential facilities or group homes with endless waiting lists. The emerging trend is social farms, where our children can do supported work and participate in occupational workshops. For these reasons, Habitat for Autism exists to represent our young people's rights, to develop educational support and training using the most advanced techniques, to raise public awareness of this condition, and to create a training center at various levels for families, teachers, and staff. The center will open soon in Pavilion 14 of the Santa Maria della Pietà Hospital in collaboration with the local health authority. We are also working to open social farms where our children can live a dignified, acceptable life—even after we are no longer here. I think our association's success comes from seeing the whole life of each young person—recognizing the different needs at each stage of development. We also believe it is vital to support families with concrete, practical tools they can use every day: parent training, monthly meetings with a psychologist, dinners, gatherings, and events. These create moments where families feel connected to one another, no longer abandoned to face this alone. We are determined not to settle for what exists today, but to propose real, tangible solutions in the near and medium term. Our struggle is not just for our members, but for all those who must face this challenge—for all who cannot defend themselves and cry out for their own rights. This is why our most recent awareness campaign was titled: "Aut not Out, I'm Here Too" (www.habitatautismo.org)

Winning Drawing

"The Prison of Colors" by Yassin Zavkour, Grade III B Comprehensive Institute Via Vibo Mariano, Rome

Campaign for Awareness and School Integration of Autistic Children

Winning Theme "I'm Here Too!" I used to say that a lot as a child, whenever my parents gave something to my brother or did something for him. Now that I'm older, it still applies. When my parents argue, I remind them I'm here too. So when I find myself somewhere that children are sort of pushed to the side, I speak up: I'm here too. Even though I'm small, I don't want to be left out. I demand that the people around me remember that I exist, that they respect and consider my presence, and that they act in ways that won't cause me trauma—even in situations that might be unpleasant for me as a child. I'm here too also means that when I can help someone less fortunate, I do—when I can give something for them. And I'm here too when my friends are together talking and I'm ready to say something so they don't fight. Most of all, I'm here too for children like Ilaria and Federica, who look at us and communicate with us, saying so many things we sometimes don't understand. But one thing is certain: they communicate with us, and we communicate with them, in a language that only we children have—and we hope we never lose it as adults. I am here and I will always be present and ready to try, through my presence, to lend a hand to anyone who needs it and asks if I'm here. Giovanni Corsi

Luigi Di Liegro Middle School

"The work of older elementary and middle school children reflects a calm school life alongside their autistic classmates." A Mother

Giulia de Finis, 2008

Vice President of the Association

Projects Under Development

Autism Rehabilitation Center To create a specialized, multidisciplinary rehabilitation facility for autistic children that addresses all stages of their development—from diagnosis through a personalized life plan. We believe our children's rehabilitation should happen in the ordinary places children go: school and home. Current best practice is to offer therapy at home. Integrated Center for Consultation and Training on Autism What Italy urgently needs is a cascading process of education: training all those who surround our children's lives—starting with us parents and reaching every part of their world—in advanced rehabilitative techniques and autism management. Family consultation and training is the first step, and despite what exists today, it is no small thing. For this reason, the association has proposed and launched a program developed with the local health authority and three city districts. The program will train and update all professionals involved in our children's care through specialized modules, including long-term training. The center will be housed in spaces within Pavilion XIV of Santa Maria della Pietà Hospital.

I'm Here Too

"As therapists and parents know, capturing the gaze of an autistic child is one of the hardest things to do. In this campaign, I thought of reversing that fact, giving these children a gaze that is difficult to escape from—almost magnetic—a gaze that truly says: I'm here too." Giorgio de Finis, 2008

(filmmaker, anthropologist, and photographer)

Campaign for Awareness and School Integration of Autistic Children

Winning Poem I am Ilaria and… I'm here too So many people around me, I can't speak, I don't know why. I am the only one here who doesn't react, who says nothing. I am isolated, locked inside myself, my classmates and teacher talk to me. They do me favors but I don't know how to repay them, yet they understand without hesitation; I thank them anyway for having always beside me, in my class, a child who is here. For this I say a special thank-you to you: you accept me and I am normal; one last thing I want to tell you: I am autistic but I can still feel! Riccardo Pellegrini

Class II H, Luigi di Liegro Middle School

Projects Completed

Active School Now in its third year, Active School is an integration program for children with autism spectrum disorder in kindergarten, elementary, and middle schools across Rome. Twelve schools participate, serving 21 children total. The program is a collaboration between schools, families, the local health authority, and the community. It creates genuine integration of each autistic child within the classroom and the broader school context through labs in art, music, and language development—seven hours per week led by educators who specialize in autism. The program also includes family support with monthly meetings with a psychologist, and is coordinated and supervised by a child neuropsychiatrist. One mother describes it this way: "The educators who trained through our association's courses join the classroom teacher team without being intrusive. They organize activities both for the autistic child alone and for small groups in the class, teaching children how to play or simply how to behave with such unique classmates. They teach the other children to recognize communication signals that may look different from words or conventional gestures, to be patient, and to notice those fleeting glances that our special children give them." The Playground A protected playground designed with the needs of autistic children in mind, available free of charge to all members and their families at any time. The area is fenced and equipped with slides, trampolines, and swings. During warm months, we set up a pool about 16 meters long where our young people and their parents—or therapists or home aides—can meet, relax, and get through the months without school more easily. We know how hard it is for families to find safe places for their children to have fun. At the same time, the playground offers socialization for both the young people and the families themselves.