Alright, if you read this blog then you know we in the Somali community of Minnesota have been struggling with high incidence rate of autism which we did not see back home in Somalia.
As a result and to make a long, hard, difficult journey & story short – we were able to advocate from the Federal government (NIMH, CDC, NIEH, Office of Minority Health at NIH) and Autism Speaks for over $400,000 to do a Somali Surveillance Study in 2010. Well – the results of that study done by University of Minnesota with help from CDC, NIEH and Autism Speaks is to be released on Monday Dec 16, 2013 at 10:30am at African Development Center 1931 S 5th Street Mpls. (it is our friend’s business the Late Hussein Samatar who was instrumental in assuring ICI at UMN did not do business as usual and exclude minorities)
To give a little history this study was second step to Minnesota department of health’s study back in 2009 which said autism cases were higher among pre-school Somali born children in Minneapolis.
It is suppose to re-look that by using the ADDM surveillance system and either confirm or not the 2009 MDH study.
I have been told I would be OK with it by the Principal investigator of the study Dr. Hewitt at University of Minnesota which to me sounds like not good news of autism is high and not bad news of we found nothing.
My guess is this;
CDC and Univ of Minnesota will say on Monday – Autism is NOT higher among Somali American children born in Minneapolis, but it appears to be on the severe and/or minimally verbal side. They will also say – most of these children are not getting early intervention and/or medical diagnoses on time. On the other hand, I could be wrong and they might say – YES Autism is HIGH in our community. That is for sure what I hope for because I can see autism in every family and in terms of disparity, we already know that per all of the great work done by Dr. Mandell and others.
I mean we don’t need to ask Jack and Jill if autism disparity exist in minority children for late diagnoses, less intervention and services. I see that everyday for so many families.
I honestly did not think I would be this emotional about this study, but I am. I feel a sense of relief it is done. By the same token, if it proves or disproves nothing then we are back to where we started back in 2008. Then the question will be how did ICI at UMN count and engage with families to get the best accurate numbers.
I guess few more days until we all know what the results are and what happens next. These results took twice as long, it was suppose to be done by summer 2012 and it is now winter 2013. I am not sure why it took so long, perhaps it is the fact that ICI at UMN was sort of clueless at the beginning and has never done an autism surveillance study. In fact, no one in MN has ever done it or thought they could get funding for it. Remember our state health dept has always refused to do a population autism count and has never applied for CDC’s ADDM Surveillance grant. Their reasoning we are not qualified, that is one agency that frustrates me even more than ICI at UMN.
Whatever the result – and don’t get me wrong I rather get results that state what we see with our eyes in our community, I am very grateful and can not thank enough so many people that were responsible for this study, not just financing but really giving their time and expertise.
Dr. Insel at NIMH who is the reason this study was funded because he asked IACC members to coordinate and look into our concerns. Dr. Daniels at NIMH – not enough nice words to describe her, I learn from her everyday. I don’t know how she does so much with such calmness and humility.
Dr. Allsopp at CDC whom I am so fond of and has been the backbone of our advocacy.
Dr. Wiggins whom I admire and respect wholeheartedly and is probably one of the nicest and sincere researchers at CDC.
Dr. Dawson whom I also like and respect and was the reason Autism Speaks contributed $100,000 to this study along with Michael Rosanoff and previous AS President Mark R.
Dr. Lawler at NIEH who is so approachable and knowledgeable.
Finally, Dr. Punyko an epidemiologist at MDH. I think she is probably one of the best researchers MN has and probably in the country. Dr. Punyko is so detailed, yet so human – what a rare combination. Oh & my fav – she does not crave attention like Hewitt does, Punyko just does her job behind the scenes and calls it a day.
Regarding the lead researcher Dr. Hewitt – No love lost there & I can’t say we stared on the right foot. I think there are still lots of issues to work through since we fought hard and long to even get a Somali hired in a Somali autism study that was advocated by Somali autism parents, imagine the level of arrogance in that. Diversity and inclusion should NOT be this hard in every corner here, but it is and it is emotionally exhausting. My final assessment of Hewitt will be on how the study is released, what exactly it says and what it accomplishes, as they say it is in the fine print, or the proof is in the pudding.
Here are some stories done on this previously:
As usual, above words are my own and do not reflect any committee.
Thanks!
Idil – Somali Autism Mom & Minority Advocate