Cultural and linguistic determinants in the diagnosis and management of development delay in a four year old.

CASE. Jose is a 4-year-old Puerto Rican boy diagnosed with high-functioning autism. His mother, who speaks Spanish and knows little English, has brought him in to see you, his new bilingual pediatrician. She felt that Jose's former pediatrician did not provide her son with adequate treatment and services because the doctor doesn't speak my language and didn't seem to understand my culture. Jose's mother also is concerned because she believes he is in a regular, English-only mainstream classroom at school and worries that he is not receiving appropriate services in the school. Jose's mother brought copies of her son's medical records to the office visit. They reveal that Jose was born at term after an uncomplicated pregnancy. He had normal developmental milestones at all of his health supervision visits through 9 months of age. During an acute care visit for gastroenteritis when Jose was 10 months old, his mother noted that she thought Jose was suffering from empacho, which she treated with a special powder. At 12- and 18-month-old well-child visits, Jose's only words were Mama and Papa. Between 13 and 20 months of age, he had seven episodes of bilateral otitis media, which were treated with antibiotics; the last three episodes occurred with antibiotic prophylaxis. During this period, tympanometry demonstrated flat tympanic membranes bilaterally. Jose was uncooperative during two attempts at audiometry. He underwent bilateral myringotomy and tympanostomy tube placement at 20 months old. The former pediatrician was not concerned about Jose's language delay because, as documented in his notes, it is expected that children who are trying to learn two languages at the same time will have more speech problems and language delay. Because of other areas of developmental delay noted on the 2-year-old well-child visit, Jose's former pediatrician referred him to the Developmental Assessment Clinic (DAC), where a severe delay in cognition (12- to 15-month-old range) and expressive and receptive language were observed, associated with appropriate social interactions. At this time, Jose's mother was not concerned about his language development, but was worried that he still was not toilet trained. He was referred to an early intervention program, where he received weekly speech therapy (in English), occupational therapy, and applied behavioral analysis. At the follow-up DAC visit at 3 years of age, Jose demonstrated marked delays in all areas on the McCarthy Scales of Children's Abilities, and mild deficits were seen on the Vineland Adaptive Behavior Scales. He was able to indicate yes and no with gestures only, and he understood fewer than 10 words. His mother reported that at times he would not use words for hours at home, and she felt that he was actually losing some of the improvements in speech that he had previously made. His diagnosis was now global developmental delay with possible autistic spectrum disorder. Subsequent evaluations were negative, including a neurological assessment and genetics consultation, an MRI of the brain, a Fragile X DNA molecular probe, and high resolution chromosome analysis. Jose is now attending an early childhood special education classroom, but the program is held only in English. Jose's mother told the pediatrician that she is worried because his speech therapy is in English, and she was told that there are no school programs for special-needs children in Spanish. She is also worried because he rarely makes eye contact with her or anyone else, and he often screams or bangs his head when frustrated. As Jose's new pediatrician, four major issues confront you. (1) How can you provide the most culturally sensitive and linguistically appropriate pediatric care to this family, both in your office and in his specialist visits? (2) How can you arrange for appropriate bilingual treatment and services at Jose's school? (3) Are children raised in bilingual environments at higher risk for language