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Inclusion into Life in Peru

Posted by Andy Shih, PhD, Autism Speaks senior vice president of scientific affairs, and Michael Rosanoff, MPH, associate director of public health research and scientific review.

Martin has autism and works at Peru’s Ministry of Health. His desk stands next to a busy set of elevators, and his supervisor admires his ability to stay focused on work and not get distracted by all the comings and goings.

Gustavo, one of Martin’s colleagues at the ministry, likewise has autism. He helps catalog journals and periodicals and is known among his co-workers for his pleasant demeanor and strong work ethic.

Sandro was 5 and living with his family in Lima’s shanty town when he was diagnosed with Martin at his desk at the Ministry of Healthautism. Now 35, he works at Alcoa, managing the company’s messages and packages. His meticulous hand-written log is so neat and precise, it looks like it came out of a laser printer. “The best thing about Sandro?” one of his co-workers replies. “He’s organized, organized and organized.” His family’s breadwinner, Sandro has transformed their lives by putting his siblings through school and paying for his father’s medical bills as well as a new home.

Martin, Gustavo and Sandro are all former students of the Ann Sullivan Center in Peru (CASP), a school for children with autism and other developmental disorders. It first opened its doors over 30 years ago in a garage. That garage belonged to the parents of its director, psychologist Liliana Mayo, PhD.  

It’s been many years since Martin, Gustavo and Sandro graduated and embarked on their independent, productive and happy lives. Yet each remains an active part of the CASP family that Liliana and her small team of dedicated professionals have built over three decades.

The folks at CASP take the concept of “family” seriously. The staff keeps in touch with former students, providing support when needed. CASP’s programs emphasize family-mediated support and treatment, building on the Peruvian culture of large, deeply engaged families.

Indeed, the center’s motto is “70 percent family and 30 percent staff.” Staff teach family members to deliver evidence-based interventions at home, while providing ample supervision and support. The curriculum emphasizes adaptability and independence. It focuses on leveraging the strengths and talents of each child. Liliana and her staff don’t see disabilities, just different abilities.

CASP’s approach weaves treatment into life’s daily fabric. Its family-centered curriculum creates an immersive environment where everyday interactions and routines represent opportunities for learning. The center’s first students have literally grown into adulthood with the CASP team. The staff learned from their experience and deepened their expertise by creating feasible and effective solutions to the challenges that life presented their families along the way. With their first students now in their late 30s and early 40s, one teacher says, half-jokingly, that they’ll soon need a “seniors division.”

During our visit, we also met Josue, an 8-year-old living in a shanty village of Lima. Josue is just beginning his journey. Despite financial challenges, his entire family is committed to his success. Mom, dad, brother, sister and even grandma use the techniques they learned through CASP training to teach Josue the skills he needs to survive and thrive in a city full of challenges.

As with Martin, Gustavo and Sandro – and all CASP students – the focus is on finding and developing Josue’s special abilities.  His family is already excited about his talent for technical drawing. They call him "Josue the architect." Clearly, he’s on his way to the  "independent, productive and happy" life that is the mantra for CASP students.

Now serving over 400 families, many of them very poor, CASP offers an intriguing model for community-based education and intervention – one with particular value in low-resource settings.

Recently, the First Lady of Panama replicated the Ann Sullivan Center in Panama City. Clearly, its family-centric, culturally sensitive approach is resonating beyond the Peruvian borders.

Many aspects of the CASP approach deserve further investigation: How well does this model work in other low- and middle-income countries? What happens when it becomes part of a state-sponsored program as it has in Panama? How well does it “scale up” to care for thousands of families, even the needs of an entire country? Would it work in underserved communities in high-income countries? How does it compare with existing education models, inclusive or otherwise? Does it reduce the overall economic costs of autism to society? What are its “active ingredients”?

It’s clear that the model is working for Peruvian individuals and families living with autism. CASP’s “inclusion into life” ethos helps its students realize their full potential as independent, productive and happy citizens. “I am so proud of him,” beamed Gustavo’s mother. “Our dream has come true.”

Editor’s note: On October 15, Andy and Michael traveled to Peru to introduce the mission of Autism Speaks Global Autism Public Health (GAPH) Initiative. They met with First Lady of Peru Nadine Heredia; Peru’s vice ministers of health, education and women; and representatives of 14 organizations that work with persons affected by autism in Peru. Participants shared their successes, challenges and top priorities, and the first lady expressed her personal commitment to future collaborations with the goal of better serving children and adults with autism.

“It was an historic visit, because Autism Speaks sent a clear message of hope that this international organization will help in the development of priorities the government decides are the most important for people with autism in Peru,” Dr. Mayo writes in her center’s press release.

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.