University of Minnesota research scholars Amy Esler and Jennifer Hall-Lande are part of a Centers for Disease Control autism survey tracking the national rise in diagnoses in recent years. They were approached by alarmed parents to tease out specific prevalence in Minnesota's Somali community.

Amy Esler, Minnesota Autism and Developmental Disabilities Monitoring Network:

I'm glad that we were able to provide some confirmation on what parents have been talking about for over 10 years now. And, hopefully, this helps influence policy.

Fred De Sam Lazaro:

What they cannot answer is why autism so prevalent in the local Somali community, where they also found higher rates of intellectual disability than in the general population.

Amy Esler:

Literally, hundreds of genes have been identified that are linked with autism. So, knowing how to predict autism ahead of time, we're not there yet, having a biomarker for autism, we're not there yet either. There may be an environmental component, but were very much in the early stages of learning what those environmental components might be.

Fred De Sam Lazaro:

It's not only the science that's lacking, but these parents said it's also support from a system that's under-resourced, foreign to them, even hostile.

Faduma Ismail recalled taking her then-2-year-old daughter in because she's begun to withdraw emotionally and stopped eating, hallmark autism symptoms. But, she said, the doctor brushed her off.

Faduma Ismail, Mother of Child With Autism: And she said: "Oh, Somali people, you guys like fat kids, chubby kids. Your daughter, she's fine." I say, no, because 100 percent I'm sure something is wrong. So they took some blood and blood tests, and they call me before even I go home.

She was summoned back because the tests revealed severe malnutrition. She received packets of high-calorie nutrition supplements and a home visit. . . .

Idil Abdull, Parent Activist:

The doctor who was supposed to help you, not only did she not help you, but she reported you to child protective services, so that you can lose the child. . . .

Idil Abdull:

I'm just — I am baffled to hear the lack of human decency from the system.

Fred De Sam Lazaro:

Until the Affordable Care Act mandated it, few insurers covered autism care. Minnesota's Medicaid program began coverage in 2018, and while that brought in more providers, there's still a long wait to see one for an official diagnosis and then more waiting as applications are processed for services and state assistance.

Najma Siyad, Mother of Child With Autism: I have a 4-year-old son on the spectrum. Officially, he got diagnosed when he was 2, and he didn't receive any early intervention until he was 3.5. . . .

Jennifer Hall-Lande:

The earlier we intervene with children with autism the better their life outcomes, the better their functioning is in terms of communication, intellectual ability, motor.

Fred De Sam Lazaro:

In a statement, Minnesota human services officials blamed work force shortages and heavy demand for the long wait times. And there's another reason for delayed intervention, and it starts at home. . . .

Mahdi Warsama:

Some parents, unfortunately, don't want anybody to know that they have a child with autism. They hide the child from the public. The child is going to miss a lot of developmental milestones and opportunities. . . .

Fred De Sam Lazaro::

But one that will remain a daunting challenge at many levels for years to come.

_______________________________________________________________________

Although reporter Fred De Sam Lazaro called the rate of one in every 16 four–year-olds “astonishing,” and PBS anchor Amna Nawaz described it as “an alarming increase,” U. of Minnesota research scholars Amy Esler and Jennifer Hall-Lande didn’t share their concern. These two are also tracking the autism rate for the CDC, an agency that has never admitted a real increase in the autism  rate.

Amy Esler’s remarks here showed that the struggles of Somali families living with autistic children are a low priority for officials in Minnesota.

Literally, hundreds of genes have been identified that are linked with autism. So, knowing how to predict autism ahead of time, we're not there yet, having a biomarker for autism, we're not there yet either. There may be an environmental component, but were very much in the early stages of learning what those environmental components might be.

Her first comment was to call autism a genetic disorder. There is only the possibility that “there may be an environmental component,” but they’re only “very much in the early stages of learning what that environmental component might be.”

When I saw this report, I immediately looked up the coverage about the Somalis done by a number of us in the autism community going back to 2008. They show 16 years of malfeasance and coverup when it comes to officials and the Somali community

NO LINK TO VACCINES 

Nov 18, 2008, Autism Strikes 1 in 28 Somali Children in Minnesota By Nancy Hokkanen

In Minnesota, an estimated 1 in 28 Somali children have autism spectrum disorders. [Among boys, the rate is one in 17.]

In response many Somali families, advocacy groups and government agencies organized “A Forum on Developmental Delays and Autism in the Somali Community,” held in Minneapolis on Saturday, Nov. 15.

The forum’s primary objective was to raise awareness in the Somali community about developmental delays in children, with specific emphasis on autism, and to engage the community. Presentations were translated into Somali and English.

Shaikh Saad Musse stated in his introduction, “Our children are the foundation of our life.” Saeed Fahia of the Confederation of Somali Community in Minnesota (CSCM) acknowledged that “we are all worried, and we would like to have a solution to this.”

Minnesota’s commissioner of health, Dr. Sanne Magnan, told Somali families that the state would listen to their concerns. The Minnesota Department of Health’s mission, she said, is to maintain the health of all Minnesotans.

Dr. Magnan acknowledged families’ concerns over vaccines and autism, but deflected them. “My job as a scientist is to bring you as many facts as possible,” she said. “On the CDC website, you’ll find this statement: ‘the weight of evidence indicates that vaccines are not associated with autism,’” she said. . . .

An overview of autism was given by Dr. Daniel McLellan, a pediatrician from Children’s Hospital of Minnesota. He said that developmental milestones can be delayed by illness, injuries, poor nutrition, or problems in the “nurturing environment,” or home. Dr. McLellan said that autism involves genes – how genetics will program our brain to move from one stage to another. He declared that autism dates back to the 1500s, with descriptions in literature of people who probably had autism. “There is no single blood test, x-ray or scan that can make the diagnosis,” he said. . . .

Data, theories and research are the province of MDH’s Judy Punyko, who is working on a Somali autism prevalence study based on observation of behaviors. “If there is an increase, we’ll get other research and physicians to help Somali families,” she said. 

Nov 20, 2008, On Autism, Somalis Feel the Chill in Minnesota By Anne Dachel

In the early 1990's, they first came to the Twin Cities. Thousands of refugees fled from civil war in Somalia and settled in Minnesota, believing that they had left tragedy behind them in Africa.  What they never expected to find in their new country was a mysterious disorder that would strike their children at an epidemic rate.

Last summer, stories about the explosion in autism among American-born Somali children got the attention of the U.S. autism community. 

The numbers are staggering.  July 25, Amelia Santaniello at WCCO-TV reported that autism was something unknown back in Africa.  Santaniello cited autism specialist for the Minneapolis schools, Anne Harrington.  'It's so glaring here in Minneapolis, I couldn't not see it.'

Somali parents linked the vaccines their children were given to autism.

Harrington was also interviewed by Reuters reporter Elizabeth Gorman.  In "A mysterious Connection: autism and Minneapolis' Somali children" on July 24, Harrington talked about the role vaccines might play in this crisis.  'They're given more [vaccines] than we get and sometimes they're doubled up.  Then their children are given immunizations.  In Somalia, their generations have not received these immunizations, and then suddenly they're getting just a wallop of them in the moms and then in the babies.  That's certainly a concern that's been expressed to me by the Somali population.'

SOMALI PARENTS GET OFFICIAL BRUSHOFF

April 5, 2009, The Minnesota Somali Autism Study: That and a dollar will buy you a hot dog. By Tim Kasemodel

The Minnesota Somali autism study released on March 31st 2009 has created quite a stir, but not as much as it should.  It creates a certain enigma, a conundrum of sorts.  While it attempts to assure the Somali community that the Minnesota Department of Health cares for them and wishes the best for them, it gives them no answers to the questions they have been asking them for so long.

Why?  Why us? they ask.  Yes, the MDH admits the Somali community was right, that their observations were correct.  It appears there are indeed more Somali children receiving autism services than other children.  But the MDH makes the strange disclaimer that the data they used for this study is not actually good enough to say for sure one way or the other. . . .

The Commissioner of Health Dr. Sanne Magnan started her media briefing with the basics of the study, moving on to a series of shameless self-congratulatory remarks about how the hard work and sincere efforts of many agencies combined into a collaborative effort to get to the bottom of the concerns of the Somali community.  She mentioned that the MDH had met with “members of the Somali community” the day before, as if she was implying that the whole community was happy with the study. Then she ended it with the unbelievable clarification that the study means essentially nothing at all, no real conclusions were established.  In the end, the answers to the questions from the Somali community were never answered.  .  . .

I guess it all comes down to what the Somali community will take away from this study.  The MDH believes that the headlines in the paper and the pretty faces on the news will help them succeed in getting their message to the Somali community, That there is nothing to worry about, they have it under control, to trust them.  I think they are sadly mistaken.  They are looking for real answers, not platitudes. . .  

ONE FATHER’S  STORY

Mar 28, 2011, Measles, Minneapolis and Somali Kids
By Abdulkadir Khalif

. . . I have a gut feeling (trust your gut feelings always) that my son was affected by what got into his body around the time he was 18 months. My son grew up a normal, healthy and bouncing baby. He started speaking a few words by the time he was about 15 months. He waited for me at the door everyday as I got back home from work and welcomed me inside. He knew how I opened the door and the approximate time I came home each day. He raced down the stairs and hugged me, then held my hand and led me inside. I looked forward to those moments and they were perfect moments as they relieved me of the day’s tensions and small workplace frustrations. Then one day, I came home and he did not welcome me as was his wont.

REGRESSION

A few days earlier, Abdimalik got his 18 months MMR vaccine as scheduled. I still remember that day. His mother was coming back from his appointment and passed my place of work to give me a ride home. Abdimalik was sitting in his car-seat, very quite, subdued and absent minded. As I took my seat I glanced back wondering if he was asleep or not. He was seated squarely in his seat but was looking straight ahead at a point in space. I called out to him and he did not respond. I shook him and he did not move. I looked at my wife and asked what happened and she explained where they came from and that everything went well. She explained how he thanked the nurse as she put a sticker on his chest before the injection in order to build rapport. After that we rode home in silence and life was never the same again.

On all subsequent days after that, Abdimalik went from one extreme behavioural problem to another. . . .

Just like sixteen years ago when the rate of autism among Somali children in Minnesota was at one in 28 children, one in 17 boys, today’s latest rate of one in every 14 children, one in every 10 boys, WILL NEVER MATTER.

No one cares about the rate in California, one in every 22 children, one in every 14 boys or the rate in Florida, nearly one in 20, one in 12 boys.

The future is even more horrifying if these rates continue to climb, but this story too will die. Officials will continue to scratch their collectives heads about autism even as the rate reaches one in 10.

IF they did take this seriously, too many questions would be asked. It’s far better if those in charge just keep autism as a puzzle we have all the time in the world to figure out.

Addition:

CBS News reported in 2011 that the CDC and NIH were going to look  into the high rate of autism in the Somali community. 

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