Maria* is a single mother of a ten-year-old son with autism named Samuel. Maria and Samuel live in Lawrence, Massachusetts with his sister. Samuel is a student in the Lawrence Public Schools.
Maria is originally from the Dominican Republic and grew up in Santo Domingo. Spanish is her primary language. Samuel was born in Massachusetts and moved to Santo Domingo when he was 2 months old. Prior to her son’s diagnosis, Maria did not know anyone with autism.
As a baby and toddler, Samuel attended daycare in Santo Domingo. When Samuel was 2.5 years old, a woman who worked at the center he attended mentioned to Maria that she thought something might be wrong with Samuel. While Maria had noticed that Samuel had lost some of the words he had used previously, she did not suspect anything was wrong with his development. The day care worker suggested that Maria take him to a specialist.
Per the recommendation, Maria made an appointment for Samuel with a psychologist and then went to see a doctor from New York who resided in Santo Domingo and specialized in working with children with autism. There were several appointments with the doctor during which he examined Samuel and conducted a series of tests for auditory problems and genetic conditions, including Fragile X Syndrome. Maria recalls the doctor asking her to remove Samuel’s shoes and watch him walk. Samuel walked on the tops of his toes; something Maria learned was a common trait among children with autism. At the end of the testing, the doctor told Maria that Samuel was on the autism spectrum.
Heartbroken by the diagnosis, Maria was left with many questions about autism. At first, she wondered how this could happen to her son. She had taken such good care of herself when she was pregnant, making sure she ate well and took all of her prenatal vitamins. Looking back, Maria believes it may be harder to discover that your child has autism than to learn of a problem at birth because for the first few years of your child’s life, you assume everything is fine.
Although the Dominican Republic does provide limited services to children who are born disabled, there were no Early Intervention services available for Samuel. Moreover, although there are three schools in the Dominican Republic for children with autism, they charge a high tuition which Maria could not afford. Children with disabilities are not entitled to a public education in the Dominican Republic.
The financial barriers mounted as Maria tried to help her son. The doctor who diagnosed Samuel offered small groups for children with autism, but they were too expensive for Maria. She was able to obtain limited speech and occupational therapies for Samuel, but they too were quite expensive. After paying for two months of services, Maria could no longer afford to continue these therapies. She contacted the doctor and explained her dilemma: Samuel needed services which she simply could not afford. Because Samuel was born in the United States, Maria was advised to move back to the United States where better services are available.
Parents of children with autism are often forced to make difficult choices for their children’s sake. Maria said goodbye to her family and life in the Dominican Republic and went back to Lawrence, Massachusetts. One of the challenges of having a child with autism is that it can be very difficult to work. Because of Samuel’s autism, Maria is not able to get a job. Moreover, she knows that she can never return to Santo Domingo to live because of the lack of services available for children with autism.
Although Maria lives in Lawrence, her extended family remains in Santo Domingo. Her last visit home was two years ago. By speaking to others, Maria has learned that the number of children with autism in the Dominican Republic is rising rapidly. Maria is not sure why there are so many children like Samuel with autism but does not believe it is an epidemic. A friend of her mother who is a doctor told her that there is a new program in the Dominican Republic started by a doctor with two children with autism that asks autism professionals to offer to provide services to the growing number of children with autism who cannot afford to pay for services.
The situation for adults is worse. There are no public services available. For the most part, adults with autism stay home and have no employment opportunities.
Samuel just turned 10. He has some speech and is able to speak in three or four word phrases at a time - mostly to ask for things that he wants. Maria is able to figure out what he wants without speech. If Samuel wants a drink, he brings her a glass. Anyone outside the family would not be able to understand Samuel. In order to help Samuel communicate, Maria attempted to use photographs at home, but he became very frustrated with the approach. A friend in Lawrence who is the mother of a child with autism had access to an augmentative communication device designed to help nonverbal children communicate by computer. Samuel was allowed to try the specialized computer that “spoke” and really seemed to enjoy it. Maria wishes that her son could have such a device.
At school, Samuel receives speech and occupational therapy. Until recently, Samuel received speech therapy after school as well. However, the two therapists he worked with left their jobs and the replacement is not a good fit for Samuel. Communication continues to be a concern for Maria.
Maria worries about the limited progress he is making in school. She has joined a parent advocacy group of Spanish-speaking families of children with autism in Lawrence that was started by the Autism Special Education Legal Support Center at Massachusetts Advocates for Children (MAC). Maria believes that being a part of this group has helped her come to terms with Samuel’s autism. By working together with other Lawrence parents, she hopes to help Samuel obtain the services he needs to reach his full potential. Maria is also working with a MAC attorney to help Samuel obtain the educational services he is legally entitled to under the law.
*The names have been changed to protect the family’s confidentiality.
The views expressed in this story are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.