Queens residents contemplate disparities in access to autism services
Health data reveals lack of access to services for the autism population in Queens
When Jasmine Ferrer sits down with a care coordinator to discuss potential services for her adult brother who is on the autism spectrum, she leaves the conversation with more questions than answers. “It’s frustrating trying to navigate the system,” she says. “Services don’t always fit my brother’s personality or his interests.” Ferrer’s family lives in Jamaica, Queens. The neighborhood falls in the borough’s 12th Community Board district, which has an estimated quarter of a million residents. Ferrer’s brother, who is in the process of receiving Medicaid, has not had occupational therapy for the past two years.
According to data released in 2017 from the New York City Council website, residents like Ferrer’s brother who live in the zip code of 11427 received zero services for their autism diagnosis. The data pulls information from 44 agencies contracted with the Department of Health and Mental Hygiene to count the number of individuals living with autism who received services for their diagnosis. Roughly 4,800 individuals were counted and about a quarter of them lived in Queens. While Queens ranks second in New York City’s most populous borough with 2.2 million residents after Brooklyn, it has the lowest average of individuals across all boroughs who received at least one service.
On average 23 people in Queens received a service for their diagnosis.
Why Queens has the lowest average of individuals on the spectrum who received services for their diagnosis in 2017
Ferrer’s family is from the Philippines. Her parents do not communicate in English. She navigates the system as the family translator, interpreter for providers and a caregiver to her older brother. She suspects that the language barrier in her family and in other immigrant families puts the population at a disadvantage when seeking services.
About half of the residents who live in Community District 12 are foreign-born, according to New York City Department of Planning’s Community District Profiles.
Janet Tang has the same belief. Tang, a caregiver to her younger brother who she suspects is on the spectrum, moved out of her family’s home in Forest Hills in 2016. Up until her move, she was a hands-on caregiver who had helped her brother see a psychiatrist after a few incidences of bullying at his middle school worsened his outbursts at home.
“Anytime he is in a crowd he has an outburst. His speech will get repetitive whenever something changes,” says Tang. She gave this scenario, “If the road is being fixed and he can’t get to school, it’ll be a disaster.”
She listed other scenarios of how her brother would respond to prove the point that her brother may have autism. He is 15 and has never had a diagnosis. The stigma of disability plays a role, says Tang.
“My brother is high functioning. He’s fairly easy to miss.”
Over the years, the prevalence of autism in the United States has increased significantly. According to the Centers for Disease Control, it went from 1 in 150 individuals identified with a diagnosis in 2000 to 1 in 59 individuals in 2014. Autism is a spectrum disorder, so the disability looks different on everyone. Some of the common symptoms for a person on the spectrum range from lack of eye contact, engaging in “stimming” or self-stimulatory behavior, and challenges with socializing. With national rates of autism steadily increasing due to a broadened definition for autism and greater public awareness about its symptoms, it is assumed that the disorder will continue to affect more people in communities of color, those of non-English speaking backgrounds, people who are undocumented.
Tang’s family is from China, and neither of her parents speaks English fluently. But that doesn’t keep her mother — who she almost jokingly called a “tiger mom” — from being involved in her child’s life. Tang says she remembers her mother asking for help editing scripts in English whenever she’d want to use them at parent teacher’s conferences.
Twenty-eight residents from the Forest Hills zip code of 11375 received services in 2017. However, Tang’s brother wouldn’t be counted in the data, which raises another facet of disparities in access to services. Without a diagnosis, an individual is not eligible for services.
Over 120 residents with autism in the 11236 zip code of Canarsie, Brooklyn were the most served in the borough
Michele Somerville has lived in different zip codes in the Bronx, Manhattan and now lives in what she calls “the less prosperous” section of Park Slope in Brooklyn. “A lot of the early diagnosis is being present with the child,” she says, about individuals who go undiagnosed or underdiagnosed. She says her son received a diagnosis before the age of 3.
