In The Politics of Autism, I write:
A child’s chances of getting an autism label vary by geography as well as social class. On a broad level, state definitions of autism are consistent with the federal definition. At the practical level, there are differences, especially when it comes to assessing social and emotional development, health, vision, hearing, and motor skills. In 2011, seven percent of students receiving IDEA services nationwide had an autism determination. But the figures varied by state. The states with the highest share of IDEA students with identified autism were Minnesota (12.8 percent), Oregon (10.6 percent), and Connecticut (10.1 percent). The lowest were Iowa (1.1 percent), Puerto Rico (2.1 percent), Montana (2.8 percent), Oklahoma and West Virginia (3.7 percent each).
The clinical work being done at the University of Rochester Medical Center gives Rochester families access to world-class care, but its main points of difference are the community partnerships in the area, between health providers and families, as well as a powerful support system developed by parents, for parents.
"Families of children with autism and self-advocates have really pushed the national agenda," said Susan Hyman, chief of developmental and behavioral pediatrics at UR Medicine's Golisano Children's Hospital. "The Rochester community has a tradition of collaboration with the university in a very effective fashion, so we have a novel and collaborative interaction that really enhances the seamless service delivery."
URMC is one of 13 sites across North America, and the only site in New York that's a member of the natiowide Autism Treatment Network (ATN).
Dennis Kuo, an associate professor and division chief in general pediatrics at the University at Buffalo, said that ATN sites are special because of the multidisciplinary and coordinated approach they take to care.
"Having an ATN site in Rochester ensures the latest updates in autism treatment are both offered and delivered effectively," he said. "The ATN’s approach is to break these silos down."
But there are serious problems. Poor and minority families lack access to information and social networks, leading to delays in diagnosis and service delivery.
Beyond disparities in information, poor families in Rochester suffer from long-standing inequities in access to the minimum standard of care mandated by federal law and disparities in how special needs students are classified through school.
The Rochester City School District may be the worst in the United States in terms of educating its children with disabilities. It spent more than 20 years under a federal consent decree and faces the prospect of another.
The reason, in part, is that the district has a much greater concentration of those students than either suburban or charter schools. RCSD educates about 25 percent of Monroe County children, but 39 percent of those living with disabilities.
Even within those numbers, racial gaps are evident — white children in RCSD are classified with autism at about twice the rate of black children, who are much more likely to be counted under the catch-all category of “other health impairment.”