Parents and others in Minnesota’s Somali community are concerned about the prevalence of autism in children. Now, for the first time, state funds will go to researching autism in that community.
The health and human services omnibus bill Gov. Mark Dayton signed Friday allocates $200,000 to the Minnesota Department of Health to work with the University of Minnesota on the research.
Autism spectrum disorder is defined as “developmental disorders characterized by impairments in social skills and communication, and unusual repetitive or stereotyped behaviors,” according to a 2009 MDH report. The range of disorders includes autistic disorder and Asperger’s syndrome.
The rate of autism in Somalis is unusually high in Minnesota, said Idil Abdull, co-founder of the Somali American Autism Foundation and the mother of an autistic child.
Abdull said autism may not be accurately measured in Somalia, but she doesn’t remember seeing a single case of it being diagnosed.
“What is it about [Somalis] that when they come to Minnesota that just screams autism?” she said.
The number of Somalis ages 3 to 4 who participated in Minneapolis Public Schools’ autism programs was disproportionately higher than other races, but currently there’s no evidence that autism is more prevalent in Somalis, according to a 2009 MDH report.
There’s been no research on the prevalence of the disorder within any specific population, said Judy Punyko, an epidemiologist with MDH, though she said minor studies have been conducted.
The reason for this is the lack of an autism “surveillance system” for populations based on records, she said.
The bill charges researchers with recommending a way to implement a population-based public health records system of autism spectrum disorders.
The primary purpose of the funds is to conduct a qualitative study on the cultural and resource-based aspects of the autism spectrum.
There are no plans yet on what exactly will be studied, and “cultural” and “resource-based” research still needs to be defined, Punyko said.
“The bill appropriation was just signed. It will take some time before decisions are made about this research activity,” Amy Hewitt a senior research associate with the University’s Institute on Community Integration, said in an email.
Rep. Jim Abeler, R-Anoka, chair of the Health and Human Services Finance Committee and chief author of the bill, said the amount of funds for the research may be low, but it is an adequate start.
“This is meant to push the start button,” he said.
The funds will be made available July 1, and the commissioner of health is required to report the findings to the Legislature by February 2014.
Abdull said she was grateful Abeler pushed the bill through, but she wished the University was doing more.
She said she’d like to see the University looking for more funds and hiring more researchers.
If the state doesn’t fund more research, autism will grow more rampant, she said.
“If we don’t do this,” she said, “[people with autism] will become tax collectors rather than taxpayers.”
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