Autism in the Somali Community: Where are We Missing the Point?

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Abdikadir Ibrahim
12/23/2013

With the release of the University of Minnesota study, Autism is a current topic in the Somali community that raises some intriguing questions. What percentage of Somali children in Minnesota have autism? What causes it? Why do so many Somali children have it? Do immunizations have anything to do with causing it? What are the solutions?

Autism is a developmental disability or brain disorder that causes developmental problems in communications, social interaction skills, and reparative behavior. It is a spectrum that could have wide array of symptoms in different people. It could be a mild or severe. Symptoms could appear in children as young as one-year-old.

Based on my knowledge, there are no scientific studies to definitively answer the above questions so far. Research is ongoing and statistics are not developed well enough yet. However, the recent University of Minnesota study titled, “Minneapolis Somali Autism Spectrum Disorder Prevalence to determine if more Somali children aged 7-9 had autism spectrum disorder (ASD) than non-Somali children in Minneapolis in 2010”. This study looked at just prevalence, specific age, year, and location. The researchers in the study collected data records from what hospitals and schools identified as children with ASD on that specific year and age. Also, the study did not answer, why such a high number of Somali children have it, or what causes it, or are there any changes since 2010. Even though this data is helpful, it does not add something new to the puzzle. What causes it and why such a high number of Somali children display symptoms would be more relevant for desperate parents. I hope another study would provide the much needed answers. We know that some of our children have ASD and ASD exists in Somalia too, but at a different level. We know that lack of early interventions and resources exist in our community that hits our children hard. But the study adds another piece, intellectual disability (ID), “Somali children with ASD were more likely to also have ID than children with ASD in all other racial and ethnic groups in Minneapolis”. This is a very troubling suggestion!

In its simplest form, intellectual disability means a mental retardation; it is mental ability and a lack of skills necessary for day-to-day living. People with ID have limitations in two ways: first, intellectual quotient (IQ) on a person’s ability to learn, reason, make decision and solve problems; second, adaptive behavior necessary for daily skills, such as communications, interactions with others, and self-care. It is especially important for children who will be looked for their ability to dress and eat independently among other things. I think this is where we are missing the point. This is where knowing the culture, background and upbringing of these children may play a role. This is where mistakes start and take root. This is where many children lose their self-steam and eventually their future; and this is where many generations are diminished. On another note, the Star Tribune article (December 18, 2013), published an article, “In Minnesota, race drives school labels, disciplines.” The report vividly explained how our school system segregates, discriminates, and prepares black students for prison. Schools decide who has a disorder and who does not, as well as which behavior students can be suspended for when they committed them. School districts also have special schools where students who have so many suspensions will go for discipline after they are expelled from regular schools. The issue needs fairness and equity. The report gave alarming statistics and I call on the readers to check it (http://www.startribune.com/local/minneapolis/235894231.html)

  • Disabled students account for 13 percent of enrollment in Minnesota schools but generate 39 percent of disciplinary actions, according to state records. Similarly, black students account for 13 percent of special-ed enrollment but more than 40 percent of discipline measures.
    90 percent of the school’s [special-ed school] 89 disabled students were black males. That figure is not much different from its makeup today.
    Last year, the two schools [special schools] had 10 white students and 133 black students, state records show. Blacks at Harrison were suspended 435 times last year
    “I thought, ‘Here is the racial dividing line,’ ” Keenan recalled. “When you look at the criteria for EBD [emotional behavioral disorder], it is extremely subjective. It is not a blood test. It is not an IQ test. You simply have to show signs of behavior outside of the norms.”
    In Minnesota, she said, mostly white educators decide who has a disorder and who doesn’t. “We can’t fool ourselves,” Keenan said. “[Autistic] kids are tearing up the classrooms, too. But it is perceived differently when you have a black student tearing it up than a white student.”
    Educators “look at a loud, aggressive white child and label them spirited, and the very same behavior with a black child is labeled emotional behavioral disorder,” said social worker Teresa Graham, who has worked in Minneapolis and other districts.

Students are given suspensions disproportionately and majority of the time, they were given suspensions because the way they express themselves is not matching the way of the teacher and majority in the class. They are victims of being different. Where in a normal situation difference will be praised and diversity attitude will be welcomed, for it adds value to our school system.

To my original point, all Somali children with ASD also have ID –a hundred percentages of them.  This is too high and it does not seem right. When these children are identified with intellectual disability, what perspectives are looked at to make that decision? Who and what comparison were used? Which norms we measured against what is right or wrong behavior? Some Somali parents dress and feed their children in kindergarten. If this is how the children are dressed and fed, it is not their fault. Their parents dress them and feed them and that is how they do it. And that is the point we are missing. The question here is not whether the parents are right or wrong to dress and feed their children, but it is the evaluator that needs to know the life style of these children before he or she makes the conclusions. They are not mentally retarded, that is how they were taught. They just need someone who understands them.

The school systems are already failing our students; they already have enough segregation, separation of who is normal and who is not, based on class. This study justifies and gives green-light to what schools were already doing to have more abnormal based classes. Living in the same city does not mean we act and have same way of doing things. We need to value our differences. What is normal to one may not be normal to another. We need to get the best out of our diversity and culture. Schools need to provide culturally competent education; this is a serious and often over looked issue when so many parents depend on schools. Culturally competent education does not mean hiring an outreach person and translate some flyers into Somali. Many children are not sick and do not have ID but schools fail to understand them. Schools need to identify the differences between those who are mentally “retarded” and those who have other issues. Maybe the latter child needs a little help; maybe he/she is just excited and hyper because they have not seen the toys and activities in the school in their homes. Schools need to become culturally competent and be able to know the living environment of these children.

 

Link for U of M Study (http://rtc.umn.edu/autism/doc/Autism_report.pdf)
Link for the Star Tribune report (http://www.startribune.com/local/minneapolis/235894231.html)

 

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One Response to “Autism in the Somali Community: Where are We Missing the Point?”

  1. thank you Abdikadir, our communities need people like you.

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