Post by Amy Hess, site coordinator for the Autism Speaks Autism Treatment Network (ATN) center at Nationwide Children’s Hospital, in Columbus, Ohio. Ms. Hess is also a parent of a child who has autism.
At our Autism Speaks ATN site, we emphasize outreach and education for families and healthcare providers in Columbus, Ohio, and surrounding communities. This includes free educational sessions on autism-related medical care through our Families with Autism Medical Lecture Series. Hundreds of parents and medical professionals have attended these popular talks.
I’d like to tell you about a unique program that grew out of this lecture series. It serves our local Somali immigrant community, the second largest in the nation. As you may have read on AutismSpeaks.org, research suggests that autism – especially autism with intellectual disability – affects Somali immigrant communities at unusually high rates. (Read the news story here.)
We began this outreach effort about three years ago when a local Somali community leader asked us for information on autism. This sparked a discussion on how we could best meet the autism-related needs of our Somali community. Through an on-going partnership, we began to provide educational sessions. Importantly, we decided not to hold these sessions at our usual clinic and hospital locations. Instead, we went to places that were more comfortable for Somali families – places such as community centers and houses of worship.
Our ATN center’s principal investigator, Eric Butter, led the first outreach session. Drawing on his experience as a clinical psychologist, he explained the process of autism assessment and diagnosis within a general “Autism 101” introduction for families.
We also worked with members of our Somali community to translate three Autism Speaks ATN/AIR-P Tool Kits:
* An Introduction to Behavioral Health Treatments for Autism: Horudhaca Daaweynta Caafimaadka Dabeecadda La Xiriira: Hagaha Waalidka
* A Parent's Guide to Applied Behavior Analysis: Baaritaanka Dabeecadda Ee La Dabakho: Hagaha Waalidka
* A Parent's Guide to Toilet Training in Autism: Tababarka Musqusha: Hagaha Waalidka
(Follow the text links for free download from the Autism Speaks website.)
We received additional support for the translation of these Autism Speaks/AIR-P Tool Kits through “REAL,” a state implementation grant project that supports outreach and dissemination of healthcare materials.
Since then, there have been several more events for our Somali community. These included “A Night of Unity: Autism Awareness and Support for Families in Ohio” – Habeenka Iskaashiga: Taageerida iyo Wacyigalinta Autismka ee Soomalida Gobalka Ohio. The event was organized by Nationwide Children’s psychologist Elizabeth Donovan and community liaison Rowda Olad with support from Nationwide Children's Hospital, and several community organizations. The successful evening drew more than 200 members of our Somali community and featured a wide range of autism information and resources with simultaneous translation into Somali. (See slideshow below.)
This spring, Dr. Donovan followed up with sensitivity training for our staff, with emphasis on the Somali language, culture and immigrant experience. The cultural insights she gave us were powerful and improved how we work with Somali families who come to our ATN center. For example, did you know that, for Somalis, exposing the bottom of your foot is considered rude? We also learned that there is no Somali word for autism. Instead, many of our Somalis families refer to someone affected by autism as having “the American disease” or simply as being “sick.”
Later this month, several members of our REAL state implementation grant team will meet with those doing outreach work with the Somali community in Minneapolis – the largest in North America. This meeting will include the University of Minnesota research team that has received support from Autism Speaks to investigate autism prevalence and services in the Minneapolis Somali community. In the last few years, they’ve done a tremendous amount of outreach and resource development for their community. Our team hopes to benefit from their experience as we learn how to better serve our immigrant community through education and resources for families and individuals affected by autism.