No Word for Autism In Somalia there was no word for autism Hodan Hassan, parent: I heard of a place called Minnesota. Everybody was going there. In 1991, civil war broke out in Somalia sending tens of thousands across the border to refugee camps in Kenya and Ethiopia. Many Somali refugees were later settled in the US. The largest community, estimated at over 50,000 people, now lives in Minnesota. Hodan Hassan, parent: So then when they asked us, “Where are you going to go?” everybody was going to say Minnesota, although I hadn’t seen it before. Hodan Hassan, parent: We have never seen snow, I mean, coming from the sky. And we never had kids with autism. Hodan Hassan, parent: They said she has autism, and I said, “What is that?” I asked them what it was, and they explained to me and it was so hard for me to take it. Quersha Saleh, parent: Abdimalik is seven years old right now. He’s non-verbal. He doesn’t talk. He doesn’t say a word. He doesn’t –Other than smiling, he doesn’t say a word. He’s still in diapers. Istaahil Mahlin, parent: Me and my husband, we come and they tell us: “Your son has something called autism.” We’re like “Autism . . . ok . . . what kind of medicine . . .” “What is autism? And what kind of medicine are we supposed to give him?” “And how we do . . . cure him?” And they’re like “Ok. Here’s the thing: autism is something . . .” They explained for us, and they tell us: “There is no cure.” Idil Abdull, parent: I didn’t tell anyone. I didn’t tell my parents. I didn’t tell my siblings, his father, no one. I didn’t tell one single person for a good six months. Hodan Hassan, parent: In our country, in our society there is a huge stigma with the unknown, and autism is the unknown, so I didn’t want my son to be labeled that. People are just not accepting that and they don’t want to show their kids. I think lots of people are so mean, judging, not Americans but within our community, people judge each other. You must have done something wrong for your kid to be autistic. Unidentified Somali mother, probably Mahamud Duale’s wife: My son, he’s one of the first ones in the community who was diagnosed. I only knew a couple of friends but they never shared. It’s hard to explain. So we hide instead of explaining. Quersha Saleh, parent: He’s a beautiful child and I don’t want him to be like that in his life. And I don’t know how to fix it. Istaahil Mahlin, parent: I can’t use my university certificate. I can’t go to the job I used to love; I used to go. No. So you’re not doing your dream. You settle for what you have. Anne Harrington, Autism Specialist, Formerly with Minneapolis Public Schools: In the year 2000 or 2001, I started seeing children, Somali children with autism, and it just started growing exponentially. Anne visits the Duale family. Of the four Duale children, three have autism. Anne Harrington, Autism Specialist, Formerly with Minneapolis Public Schools: And these children that were referred to us were children that you would have no doubt that they had autism. It wasn’t, I wonder if it could be a cultural issue. These were clearly children with pretty significant characteristics of autism. And we’re not just talking about a large cluster, but what is so striking to me is the severity. The Somali community is feeling like their next generation is being obliterated by autism. I don’t think that’s something that other American families are feeling as a group. They haven’t even had the word for autism. They haven’t seen it in their, in Somalia. They, and I’ve had my Somali colleagues come back to Somalia in recent years and look for it thinking, well, maybe we just didn’t know what we were looking for, and they still are not seeing autism. Idil Abdull, parent: I took my son to Minneapolis, and at his preschool classroom, there were six children. There are usually six kids in every preschool autism classroom, and, let’s see, four were Somali. I talked to Anne and she said, “Oh, you know, you just called right in time because tomorrow we’re having a Somali autism workshop, the first one ever. I got there, they were a good thirty, forty parents. I sat in the back. I remember, I sat in the back. I pretended to be an interpreter. I did. I didn’t want them to know. And then, my layers of denial just came down one after another, one after another, after a parent, a mom, a dad, a mom, a dad talked about, “What can I do to help my kid?” Anne Harrington, Autism Specialist, Formerly with Minneapolis Public Schools: The networking that they needed to do with one another, that was the best thing that came out of that evening, and I think it was the beginning of them realizing, “Maybe it’s O.K. for me to open my door a little bit and let other people know this is what I’m struggling with.” Istaahil Mahlin, parent: Now, I always attack the people. Even if they’re in denial, I keep telling them: “Hi! How you doing When you got time? You want to see my son?” You know, “Look at him.” I just – I don’t take ignore. If they say no, I say “Come on!” Unidentified Somali mother, probably Mahamud Duale’s wife: I just tell the challenge that happened to me before. And then make them feel better. Somali American Autism Foundation (SAAF) with Minneapolis Public School Representatives Hodan Hassan, parent: We decided to form an organization and a lot more people started listening and I think validating. SAAF with Senator Amy Klobuchar Anne Harrington, Autism Specialist, Formerly with Minneapolis Public Schools: My admiration is incredible with this Somali community and what they’ve done to be advocates to make those phone calls and, and not, not stop. Idil Abdull, parent: I think I’ve become the type of person that, I just take, somebody says “No,” it sounds like a “Maybe” to me, so I keep going back until I get a full “Yes.” Anne Harrington, Autism Specialist, Formerly with Minneapolis Public Schools: We don’t know the exact cause of autism, which makes it even harder, and, um, I think as a parent you’re always looking for something that you can say, “This is what caused it.” Idil Abdull, parent: If it’s something about us that’s just a trigger when you bring it to Minnesota, if there is stress, because a lot of these parents came from civil war. They’re families who moved away from Minnesota, maybe to another state, and there are some even who went back to Somalia. One mom, she took her kid back home, and she said, “Maybe camel milk will help.” Camel milk is supposed to be healthy and it’s what we drink a lot. Anne Harrington, Autism Specialist, Formerly with Minneapolis Public Schools: There’s been some research about the lack of sunlight and Vitamin D. There’s been some concern that it could be what they’re putting on their bodies to lighten their skin. But we don’t know, and so we need to do more research. Istaahil Mahlin, parent: Some people think nutritional problem. Since we used to eat different food. And a lot of sun most of the time. Maybe the environmental problem. Maybe where we live. Who knows? Nobody knows. Anne Harrington, Autism Specialist, Formerly with Minneapolis Public Schools: The Somali community is a verbal community, and it is so heart wrenching that it’s exactly that voice that’s been taken away from the children. Idil Abdull, parent: There are families who are seeing, you know, after two and they’re both autistic, and like we’re done. We’re not having any more kids because something is going on. That’s why we want the doctors and the medical community and the universities. Look at us, research us, study us. There’s something, if you’re interested in helping all children with autism, here is your answer. University of Minnesota Dr. Michael Reiff, Medical Director, University of Minnesota Autism Clinic: Parents in the Somali community were quite concerned and quite good advocates for, uh, getting people’s attention on a national level for this, so the CDC and the NIH got very interested. We are starting these studies looking at prevalence, and I know a lot of community people are really hoping it would have started with what’s going on. But to know if it’s higher prevalence will give us some clues to what exactly to look for. Dr. Amy Hewitt, Co-Principal Investigator, Somali Autism Study: The goal of the University of Minnesota’s study is really to identify the number of children in the Minneapolis public schools between the ages of seven and nine who have a confirmed ASD diagnosis. Those children then in phase two of our study will go through what we call a case-verification process, and that process will help us confirm that what we found in their medical records and their educational records is really true, that there is a clinical diagnosis of ASD. Dr. Michael Reiff, Medical Director, University of Minnesota Autism Clinic: The criteria for autism are a Western concept that we don’t really have the scales for looking, that we know are validated in Somali communities, so it becomes really complicated to make sure that you’re on the right track with this. University of Minnesota, Driven to Discover Dr. Michael Reiff, Medical Director, University of Minnesota Autism Clinic: Autism is definitely not going to turn out to be one thing. Researchers are looking at the genetic component and it’s called apogenic factors. So there are factors that environment influences how your genes express themselves, and it’s a tremendously complex issue. Dr. Amy Hewitt, Co-Principal Investigator, Somali Autism Study: When I think about a small group of people like the Somali immigrant population in the United States, I do think there are some potential answers there if there is a higher prevalence of autism in that community or if we find that there’s more significant symptoms of autism in the Somali community. I think it can help us get closer to that next set of questions related to, “Well, why?” Hodan Hassan, parent: It’s things that you have to do. It’s not one shot thing that you can do and she’s all of a sudden O.K. and normal. It’s many, many, many things and hard work, but the best thing that came out of autism is me and her being close to each other and being friends. She’s my best friend. I can say that. Hodan Hassan’s daughter, Geni: Unintelligible, but affectionate. Hodan Hassan, parent: Thank you, thank you, sweetie. Quersha Saleh, parent: The way I feel about Abdimalik is very big. I feel like he’s a blessing. Istaahil Mahlin, parent: I think autism is somebody who is really intelligent, but he is wired differently. A lot of people who have autism can succeed in the world and do better. And they can change the world. Anne Harrington, Autism Specialist, Formerly with Minneapolis Public Schools: I think the emotion of getting that diagnosis crosses all cultures and language barriers, but this is a different kind of crisis that this community is facing. And these families want answers. I want answers for them. Quersha Saleh, parent: I pray for all the families who are affected with autism. I’m praying for them all whatever they are going through. It’s not only affected Somalis. Every family. Especially the mothers. Especially all the mothers. I wish them – they get the answers one day. The results from the University of Minnesota Study “Do Children of Somali Descent Have Higher ASD Prevalence?” are expected in spring 2013. Beyond Minnesota, autism clusters have been reported in Somali refugee communities in Seattle, London, Stockholm, Toronto and several other cities.