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Saturday, May 12, 2018

Autism Services: What You Get Depends on Where You Live

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).  
At The Journal of Disability Policy Studies, Sarah S. Mire, K. R. Hughes, Jamie K. Manis, Robin P. Goin-Kochel, have an article titled Autism Treatment: Families’ Use Varies Across U.S. Regions."  The abstract:
Many treatment types are available for children with autism spectrum disorder (ASD), and various factors affect treatment selection. This study investigated potential variations in treatment types selected by parents in all four U.S. Census Bureau Regions + Montreal, Quebec. Data from 2,647 families from the Simons Simplex Collection were analyzed, and statistically significant differences in using various treatment types were found, depending on where families lived. For example, compared with other Regions, families from the Northeast were more likely to have used most treatment types queried, whereas families from the South and Midwest were more likely to have used psychotropic medications. Statistically significant differences were also found within geographical regions. Understanding variations in the use of treatment types by families affected by ASD is important in identifying needs and opportunities for services in different locations. These findings have implications for addressing families’ treatment access and use when they are considered in terms of both research and practice policies.
From the article:
This may be in part related to where in the country children are more or less likely to receive an ASD diagnosis. In a recent large-scale analysis by Hoffman and colleagues
(2017), children born in New England (i.e., Northeast Region) had higher odds of ASD diagnosis, whereas children who lived in the central and southern (i.e., South Region) parts of the United States had lower odds. Similarly, in our study, almost all treatment types were significantly more likely to have been used by families from the Northeast
Region. On the contrary, families in the South Region were significantly more likely to report having never received treatment, though within this Region, the East South Central Division (includes Kentucky [KY], Tennessee [TN], Mississippi [MS], and Alabama [AL]) was the greatest contributor to this finding, which highlights the  importance of considering variations within (not only between) the large Regions of the United States. The alignment of our findings with those of Hoffman et al. (2017) underscores the relationship between diagnostic and treatment services. 
The interplay between research and practice policies, both of which affect ASD treatment, is complex. In 2016, the National Conference of State Legislatures (NCSL; overviewed federal responses to increased ASD diagnostic prevalence which include federal acts (e.g., Autism CARES Act of 2014, Children’s Health Act of 2000, Combating Autism Act of 2006) that resulted in National Institutes of Health (NIH) and Centers for Disease
Control (Centers for Disease Control and Prevention [CDC]) research initiatives as well as in development of the national Interagency Autism Coordinating Committee (IACC). Ascertaining the direct impact of federal actions on individual families’ treatment selections is complicated, but federal policies ultimately do affect treatment, such as
through allocation of large-scale funding and resources. We consider our findings about ASD treatment patterns with regard to both research- and practice-related policies.
Hoffman, K., Weisskopf, M. G., Roberts, A. L., Raz, R., Hart, J. E., Lyall, K., . . . Vieira, V. M. (2017). Geographic patterns of autism spectrum disorder among children of participants in Nurses’ Health Study II. American Journal of Epidemiology, 186, 834–842. doi:10.1093/aje/kwx158