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Somali Autism Mom: "We Thought America Was the Last and Best Stop in this World"

Posted: 11/18/08 03:18 PM ET

When I first wrote about the large number of Somali children with autism in Minneapolis, back in August, I was contacted by a young mother named Idil, who told me she had been trying for more than a year to get Minnesota officials to pay attention to all the sick kids in the local Somali community.

Idil, like a few other Somali parents in Minnesota, is now "taking off the gloves," as they have put it.

(NOTE TO THE TIM PAWLENTY ADMINISTRATION: These Somali parents are smart, tough, media savvy, and very primed for a fight - I for one would not like to have them as adversaries).

What follows is an exchange of letters between Idil and officials at the Minnesota Department of Health. I asked Idil if they could be published online, and this is what she wrote back to me:

"David - Yes, from now on you can forward anything I write to you to anyone. I am done waiting for them to take us seriously. Please go ahead and post it on the site. I would be honored. Idil"

Here is Idil's letter to MPH Commissioner Dr. Sanne Magnan, and to Judy Punyko and Patricia Adams, also of the state health department, sent on Sunday:

(A report on the Somali autism forum, held Saturday in Minneapolis, can be found here)

Hello Dr Magnan, Judy and Pat.

When I was young and lived in Somalia I used to believe that America was the last bus stop in the world. There was no country better than America and everyone was equal regardless of race, color or religion. This was an image carefully created and exported by the American people to the rest of the world.

No one and no country is perfect however, yesterday I realized that most of what I believed was and is still true.

Was I disappointed that Judy (a state epidemiologist who was expected to present prevalence data) did not have the report that was promised to us by Nov 15th? Of course. I am also hopeful that the truth will prevail, and all three of you will think long and hard how and what you do and what you say affects so many of our children.

Regardless of what that report would have said, my eyes tell me the real numbers. All one has to do is visit any Minneapolis pre-school autism program and see that in every class of 6 kids 2-3 are Somali children. Judy, I know that you said every number there is a family and a story behind it.

I'd like you to think about that every night as you go to sleep. Think about how there is a Somali family that thought America was the last and best stop in this world, yet they are struggling with their child that has autism. They have no idea of what to do and how to help. Chances are they have never heard of autism.

I don't read minds, but if I tried to read your body language yesterday, it seemed to say that you think there is no real problem here and whatever you report will try to put the fire out among the Somali community. Since you said every number represents a face, please visit any pre-school in Minneapolis and tell the parent of that child that you don't think there is a problem here.

We want to trust you (our government officials that is suppose to serve all people) to do the right thing for us. Treat us the way you would want to be treated if you were in our country. Please don't tell us the status quo is fine and to expect different results. Autism is real, it is happening to our people higher than the rest. It will not go away be doing the same things.

We all Somalis believe that children are the best gift god can give a person. Autism is interfering with that precious gift god gave us and we will not watch more and more families' god given gift be destroyed by it. We ask that you validate our concerns not by just telling us everything is fine and don't panic, but opening your minds and souls and take what we say seriously.

I urge you all to start looking into doing a study on Somalis. Perhaps the real cause and cure of autism will be found in one of us. We are not blaming any one thing, but this is real and all areas from low Vitamin D, to our immune system, to etc etc must be looked at a non-bias and objective manner that will benefit all of us.

I would like some response from all of you on how you really, really like to address this. (Insanity is defined by doing the same thing and expecting different results). Please tell us how and what you will do that is different, positive, productive and beneficial to the Somali community.

Finally, I am so grateful to three of you for all that you have done so far. We just would like action towards this, not just polite words. Please help us help you find the cause and cure of autism. I whole-heartedly believe it is in one of us. And what a waste if we did not take advantage of such an opportunity.

Thank you so much and I look forward to hearing from you and what your thoughts are as we move forward.

Idil

And here is the response that Idil got on Monday:

Dear Idil,

Thank you for your e-mail yesterday morning to Commissioner Magnan, Patricia Adams and Judy Punyko. We have had a long conversation about follow-up, both short and long term, and I have been asked to respond on behalf of all three. First, please do not mistake my letter of thanks to the Forum planning committee as any indication that the Minnesota Department of Health feels that our work in this area is done. We know that we still have a long way to go and we are committed to working on this issue until it is resolved.

Please know that we hear your voice and the voices of so many others that are affected. The Minnesota Department of Health is committed to protecting, maintaining, and improving the health of all Minnesotans. We are committed to continue to work with the Somali community on the concerns, doing what we can at MDH, and advocating for further investigation at higher levels.

This is just a preliminary response to your letter to let you know that it has been received. I will continue to be your faithful liaison and to keep you updated on the work that is being done at MDH, and with other agencies as that information is available. Thank you for your courage and your commitment to action on behalf of your community. I am happy to meet with you in person, or on the phone any time.

Warmest regards,

Edie French
Special Populations Coordinator
MDH Communications


And this what Idil sent back to MDH on Tuesday - (In private, she uses much stronger language than this).

Hi Edie,

Thanks for replying the email that I sent to Sanne, Judy and Pat. I understand that you are the person that answers for the dept and that is fine. I will also include Huda in this email because we (the somali community) would really like more substance than empty words. I can not believe that Judy does not have her numbers since August and it will take her another six months. Why so long? the school district already gave her the numbers. Could it be perhaps she saw what we see with our eyes and is in panic mode?

MDH must be honest with us if they truly are the people's agency. No sugar - just straight talk.

If MDH is telling us everything is fine and lets keep doing everything the same way, then they either are lying to us or lying to themselves. either way no one wins. I think everyone at MDH knows there is a huge problem here and we must work together.

What is it that now this department is proposing? We need action now no more empty words. Tell us in plain English what is next?

You know the commissioner is hired by the governor of Minnesota and the governor is hired by the people of Minnesota and the people of Minnesota elect who will address their needs and concerns. The Somali parents of children with autism and the Minnesota parents of children with autism have been extremely polite and politically correct in waiting for this department who is suppose to work for all people of Minnesota to address our needs. As far as I can see that has not happened.

Autism did not exist in Somalia, if it did we would have a word for it. We would have seen Somali adults with autism. I have no idea what is causing this, but I know it is only happening this high in Minnesota.

Therefore, Minnesota dept of health must take action now not later but now. Autism does not wait, so why should MDH?

Thank you!

Idil

I predict that we will be hearing quite a bit more from - and about - these remarkable Somali parents in the weeks and months ahead.