Somali Gloves Come Off: Autism in Minnesota

SOMALI GLOVES COME OFF – A mother’s letters to the Minnesota Department of Health

By David Kirby

When I first wrote about the Somali situation 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 “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 a series of letters between Idil and the Minnesota Department of Health. I asked Idil if they could be published online at AoA, 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 Magnan, as well as Judy Punyko and Patricia Adams, also of the health department, sent on Sunday:

________________________________________
From: idil
To: judy, Sanne, patricia
Subject: what is next towards progress
Date: Sun, 16 Nov 2008 13:55:05 -0600

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 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 effects 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 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 Vit 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:

> Date: Mon, 17 Nov 2008 18:50:39 -0600
> From: Edie.French
> To: Idil
> Subject: Response to e-mail 11/16/08
>
> 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).

From: idil
To: Edie
Subject: FW: what is next towards progress
Date: Tue, 18 Nov 2008 01:23:09 -0600

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 to why should MDH?
 
thank you!

Idil

David Kirby is author of Evidence of Harm and contributor to Age of Autism.

Note: You can read David's Huffington Post piece on the Somalis along with a follow up to the meeting last weekend that he posted at Age of Autism and another follow up by Nancy Hokkanen.

Comments

[BARB]

At the Resettlement Watch website...they wrote that 90% of the woman in Somali have undergone ritual genital mutilation. Is this tradition being carried out in this country? There seem to be thousands of Somalis in Minnesota. Does anyone know or care if the young girls here are being mutilated? Has the Minnesota Department of Health looked into this?

[Keith Chellsen]

We need to do something on a personal level united as a community.When we consider every
parent,grandparent,relative and the friends of our children who are on the spectrum the numbers are staggering.Let's start in Minnesota,bring everyone to the capitol while our legislature is in session and meet with them and let them see the numbers,and let them know they need to be on board or next election they will be gone.
They don't need to be for or against,just willing to commit to the research to find some answers and in a short period of time.We need to impress upon them this can't wait. Also,what a wonderful expression of the reality of the situation by Idil

[Cherry Sperlin Misra]

To Karen Atlanta, Are you being too harsh with the CDC ? They are really worried about those individuals who got the bird flu, and those couple hundred people dont even live in the U.S. Most or all of them live in Asia but the CDC is such a humanitarian organization,that they care for those too.

[John Fryer]

How do you tell people who know but want to continue murdering and maiming children?

In a normal society you would charge them with attempted murder.

In France this is happening.

In the USA they keep on killing and maiming and its the parents and carers that face the maiming and murder charges.

Mercury still in vaccines as at 2008 but don't tell anyone!

Anaphylaxis or adverse reactions to vaccines was proved 100 years ago but again don't tell anyone!

Let's just knock out 1 in 28 and pretend its too difficult to count to such high numbers!

Do these people know what day of the week it is?

Do these people know what time it is?

They should take there own medicine first.

What was the comment a repeat of the same vaccine won't matter?

French scientist and Nobel Prize winner for 1917 has been overtaken and denied by incompetents and no hopers in 2008.

Epidemiologists of "We dont know nothing about nothing" more like?

[Ginger Taylor]

"I can not believe that Judy does not have her numbers since August and it will take her another six months. Why so long?"

Smell's like Verstraeten.

He was supposed to take a few weeks and do a simple study to see if an increase in thimerosal correlated to an increase in neurodevelopmental disorders.

He found that it did.

So he had to spend the next FOUR YEARS trying to bastardize the study to UNFIND what he found.

I am sure that MDH has their best epidemiologists on board trying to come up with new exclusion criteria or perhaps include children who have not yet been born, or redefining autism as "never spoken a word in life", so that they can come up with a no association outcome.

Won't the Somali's be relieved to discover that none of their kids actually have autism!

Some one get on the phone and get a copy of the raw numbers from the school system before they are "misplaced" and no one can check MDH's work.

I am so damn sick of this.

The unmitigated hubris of MDH and CDC is totally disgusting.

These people deserve better. All our kids deserve better.

[Ginger Taylor]

Give'um hell, Idil!

[Jack]

The CDC should be falling all over themselves trying to study these kids as fast as they can. The fact that they aren't, that they are making no attempt tells me they already know the answer.

[Meg N]

Wow, Idil...you are a true hero. I'm reading your words, picturing your dreams of coming to America, raising a family and living the American dream...dreams that I know so well...only to have the dream turn to a nightmare when you hear the words "I'm sorry ma'am, your child has AUTISM." Truly heartbreaking. But you, like so many of us in the Autism community, have not let Autism be the theif of dreams, you have used it as a catalyst for change, and a new dream is born out of the ashes. I admire your courage, and I will continue to pray for strenghth for your family and your community. 1 in 150 is insane...1 in 28 is downright, well, I don't have a word for it.
The MDH really ought to consider itself lucky, as they have possibly been given a huge piece of the Autism puzzle if they would just take a look. Who among them will rise up and face the music? We need strong leaders in our government...I'm tired of these pansies in suits and their private jets, playing rounds of golf and doing "research" on exotic islands. Shame on you!!! The American people are not being represented by their government, and it is tragic.
Idil, you represent the spirit of true Americans...a strong, determined sense of purpose, an undeniable yearning for the truth, and a willingness to be a catalyst for change! Thank you for using your voice. Thank you, Mother Warrior!!
And thank you, David Kirby, for caring about us. You are a force to reckoned with, sir.

[Andrew Lehman]

Simon Baron-Cohen's studies suggest that a mother's elevated testosterone levels may influence the incidence of autism in her children. Somali's migrating to a Northern Climate, are exposed to radically different light patterns, and likely a higher fat diet. Light and diet influence testosterone levels. Norman Geschwind wrote about the pineal gland, influenced by light, altering uterine testosterone.

Visit http://www.neoteny.org/?p=154 for additional information.

[sdtech]

ObjectiveAutismDad

Sounds like a plan - “Count the number of autistic kids in the school system, count the number of kids in the Somali community of the same ages (can't include the younger kids because the may not be showing signs yet) and DIVIDE.”

Get the data through freedom of information act information for Minnesota. Look at http://www.mnspj.org/freedom-of-information/ .

And then email Age of Autism for the National IDEA data in EXCEL using that basic formula for a comparison.

[kat23]

Thanks David, and GOOD LUCK Idil!
One day, when our children are safe, and autism is behind us, we will be learning in our history books of a Somali mother named Idil....

I'll pray for this.

[anonymous]

Time to hire an independant firm (with permission by the parents of course) to crunch the numbers. I say it will take a week tops!

[Nora]

THIS SHOULD BE ON THE FRONT PAGE OF THE NEWSPAPERS ACROSS THE UNITED STATES. SO HOW DO WE GET IT THERE? A CAMPAIGN WHERE THE ENTIRE AUTISM COMMUNITY PRESSURES THE STATE OF MINNESOTA TO INVESTIGATE. DRAG THE MEDIA THERE AND MAKE THEM LOOK! USING THE MIGHT OF ALL OF THE ATUISM ORGANIZATIONS COMBINED CALL TOGETHER AN EMERGENCY MEETING AND DEVELOP A GET OUT THE MESSAGE ABOUT AUTISM IN MINNESOTA CAMPAIGN. IT COULD BE INCREDIBLY POWERFUL AND HELPFUL TO THE SOMALI FAMILIES. DIVIDED WE FALL UNITED WE STAND!

[Rachel Ford]

"I can not believe that Judy does not have her numbers since August and it will take her another six months. Why so long?"

My question exactly!! This is not rocket science! Looks like an obvious attempt to stonewall.

[Lucius]

The CDC will not look into this because they know what is causing it. This is all part of their plan. Only those who are not affected by the vaccines are the ones who will be able to reproduce. Autism may very well be genetic afterall and they have found a way to block the CNV from replicating normally. Therefore the person's DNA becomes Altered/Mutated and then it becomes a Genetic Disease. This is why Autism is a Spectrum with so many symptoms/behaviours that make it close to impossible to match two children with the same symptoms/behaviours. Somali's may be related a lot closer than they think. They may have a gene that is not equipped to handle the dangerous toxins from vaccine overload. Good Luck everyone. May God have mercy on their souls.

[karenatlanta]

Kelli the CDC is under a rock.
Go into any elementary school or homeschool co-op. Autism,ADHD,Asthma is exploding.
I was a volunteer in my daughter's Kindergarten class last year. Learning disabilities and speech problems abound.
The Sunday school class I taught had 18 kids, 9 on the Spectrum.
The CDC is completely OUT OF TOUCH.
Anyone involved to any degree with children can tell you chicken pox is not the problem.
I went to the library today, to just do simple research for my daughter's high school paper - and ended up talking to a home school mom who has a child on the Spectrum. They are everywhere.
The other night I went to a high school dance and another mother has a son with Asthma and GI reflux and hyperplasia due for surgery. She was at wits end, her child taking 3 steroids a day nothing helping his horrible GI dissease, sound familar?
Why is it the CDC so worried about a few hundred people with Avian flu and ignoring a generation of very sick kids????
Why is that?
How pediatricians can sleep at night is beyond me. There is a global crisis of chronic disease thanks to over vaccination.

[ObjectiveAutismDad]

Wow, again, wow! This lady is my new hero. Go get 'em Idil we're right behind you.

And, to the MDH. What the f--- are you doing??? How hard is it to figure out how many kids in this community are autistic??? Count the number of autistic kids in the school system, count the number of kids in the Somali community of the same ages (can't include the younger kids because the may not be showing signs yet) and DIVIDE.

[nhokkanen]

The Somali families in Minnesota are not only educated, they are wise. They understand what is going on with our state's public health bureaucracy.

All those well-intentioned people in the Department of Health, many of them mothers, have been silently allowing a percentage of their product consumers to be harmed. They hide behind false statistics instead of going out of the office and looking at the sick children -- doing medical testing and treatment.

On Saturday Dr. Sanne Magnan said that she was "a child of God." Perhaps in theory, but not in practice. We're not seeing much evidence of the Golden Rule -- do unto others as you would have them do unto you.

[Anne Dachel]

Kelli Ann,
Unfortunately, they still don't known if the rate of one in 28 is really accurate. It seems the MDH is still counting. We were told that by March they should have an idea about the numbers. Somalis are 6 percent of the student population in Minneapolis and 25 percent of the special ed autism program, but no one knows yet if that's anything to worry about.

Anne Dachel
Media editor

[Sonja]

It is time for a march in Minnesota on behalf of the Somali children. We need to show these wonderful people they are not alone. They hold the key to unlocking the cause and of course the CDC is nowhere to be found. Classic.