Photographers' Blog

A child’s autistic world

Havana, Cuba

By Enrique de la Osa

When I arrived early at the Dora Alonso School, Julio came over, shook my hand and gave me the latest weather report. He did it with such precision that I didn’t know what to say. Julio is 24 years old and a die-hard meteorology aficionado. But instead of working as an expert predictor of the weather, he was making a living sweeping the school’s patios. Julio is also a patient at the school – he suffers from autism.

The Dora Alonso School specializes in treating children who suffer from autism spectrum disorders. The building housing the school was a military facility before the Revolution, and it was inaugurated as a school for children with special needs ten years ago by Cuba’s former President Fidel Castro. The school is surrounded by a lush green garden and there is no outside noise. It is extremely peaceful. More than 40 children, ranging from the age of four to six spend their days at the school with a group of therapists, doctors, physiotherapists and psychologists who not only work with the children but prepare parents and teachers as well.

The disorders can range from severe mental retardation with a profound inability to communicate, to relatively mild symptoms combined with some high levels of function such as those seen in people with Asperger’s. When I saw the students I found they looked physically normal, but seemed apathetic. They live in a world different from others. In Cuba we are used to children running around, laughing, crying, and doing everything with lots of noise and bravado; they wear their emotions on their sleeves. But these children were quiet and detached. They were completely unfazed by my presence and the camera, showing no curiosity.

The teachers, almost all women, were cheerful and deeply caring, and I was impressed by the enormous amount of affection the therapists showed to the children as they tried to make them feel at home. In class the children painted, listened to the sound of musical instruments, and with the help of a therapist they did movements in front of a mirror. In one classroom two boys were working at computers in front of a mirror. The mirror was positioned in a way so they could recognize themselves. They concentrated completely and worked on the computers with great ease.

The children do a lot of activities outside the school as well. I went with a small group to the aquarium. The National Aquarium of Havana each week hosts groups of children on guided tours where they learn to interact with dolphins and seals as part of their therapy. The therapists say this kind of therapy helps the patients to interact with others, despite their disabilities.

Living with Fragile X

By Jim Young

1 in 88

Those are the odds that a child in the United States is born with Autism or a related disorder, according to the latest estimate from the U.S. Centers for Disease Control and Prevention; and Fragile X is the most common known genetic cause of autism.

Both of Holly Roos’ children have Fragile X. Parker is an energetic and expressive 12 year old; and Allison, though possessing the same amount of youthful playfulness, displays much milder symptoms than her older brother. They play together like most brothers and sisters, enjoy the same cartoons on television, and even play the drums and video games together. Both are enrolled in a clinical trial of a drug to help treat Fragile X.

SLIDESHOW: LIVING WITH FRAGILE X

I introduced myself and right away Allison wanted to show me her room. It was pink and purple, with toys and princesses everywhere, much like many 9 year old girls. Parker was curious at first but soon just went about his routine. After Parker went to bed, I stayed up with Holly for a few more hours just to talk and learn about their story and where they are now. As a child, Parker started out developing normally but slowed when it came to his speech development. He has been on the clinical trial drug STX209 since he was 10.