By Nancy Hokkanen
In Minnesota, an estimated 1 in 28 Somali children have autism spectrum disorders. 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. She warned that recently a Minnesota baby died of an infection because its parents decided not to immunize. “These are facts – you will have to make your own opinion about the facts,” she said.
After Dr. Magnan left for the day, facilitator Huda Farah discussed Somali family life. Sarah Thorson from MDH offered parents a developmental wheel tool for assessing age-appropriate milestones. Donna Ashton of Minneapolis Public Schools stressed that all agencies are invited to attend MPS meetings.
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. The study report may come out in March 2009. According to Punyko, the U.S. federal government, academic institutions and the Mayo clinic are “the best people to figure out what the causes of autism are.”
Next came a question and answer session; questions were submitted on notecards handed out to select members of the audience by Patricia Segal Freeman, a communications coordinator with MDH. The panel was asked, is autism contagious? The panel said no.
Nurse practitioner Janet Mims was asked how to help children who have trouble sleeping. Her advice was to get them into a structured routine. After further non-biomedical discussion, a panel member mentioned the word melatonin without explanation, then suggested prescription medications.
After lunch, longtime Somali pediatrician Dr. Ahmed Osman said that it is unfortunate if people make a link between immunizations and autism. “It is possible that a child may have this condition, who has not been immunized,” he said.
Adem Abdirahman’s professional responsibility is facilitating communication between parents and educators. He discussed screening and Early Childhood Special Education, saying that “We have two years to correct problems with the child.” Writer Anwar Mohamed discussed Somali culture and said that immigrants came to the U.S. “because God wanted us to be here, and conditions like autism come up.” He said that disabled people exist “for those who have legs to get a lesson from that person…. Whatever condition we have is a destiny.”
Kris Ehresmann of MDH’s immunization division manages several programs including refugee health and tuberculosis. She mentioned that she has a son on the autism spectrum. She also said that she was appointed to a 15-member panel that makes decisions on vaccinations for the U.S. – that is, the ACIP committee.
“Before vaccines, thousands of children died of diseases we can now prevent,” Ehresmann said. Now thousands of children participate in vaccine studies with their parents’ permission, she said.
“No one wants to see a child harmed by vaccines,” Ehresmann said. “Because they’re given to healthy adults and infants, the government wants to see that they’re safe. Safety standards are much higher than for drugs, like antibiotics approved via the FDA. Many studies are done before release, to make sure they’re safe.”
According to Ehresmann, dozens of studies of thousands of people in various countries have not shown a relationship between vaccines and autism. She stated that in 1999 the government began taking Thimerosal out of vaccines, and by 2002 none contained more than trace amounts. The only remaining one is the flu vaccine, but she said that Thimerosal-free flu vaccines are available. But since Thimerosal was removed, autism rates have climbed, she said.
Ehresmann said that parents should not delay childhood vaccinations. She said that because autism is diagnosed at the same time as vaccinations, “It’s easy to think one think is linked to the other – but it isn’t.”
Idil Abdallah has a son with autism. She said that it’s difficult to find help for autism issues, that as a mother you’ll feel angry, sorry and sad. “Donating a kidney for our son would be much easier than this condition,” she said. She encouraged parents to work past initial denial, have strong Muslim faith, and believe their children will get better. Her son overcame his inability to hold a pencil and resistance to handling wet things by receiving occupational therapy.
Abdallah’s voice became more spirited as she addressed her remarks to the many representatives of advocacy groups and government agencies. “All parents must be listened to, respected, and taken into account,” she said. At first her subsequent remarks were not translated into English until audience members spoke up. Abdallah said parents need to be listened to by their doctors, saying that parents have noted children’s regression after some shots like the MMR. “It is not helpful when you say no link… please do not disqualify mothers. When doctors say ‘no link,’ that may not be the answer.”
Before break Hodan Hassan received recognition for helping to organize the forum. (She was mentioned in investigative journalist David Kirby’s Nov. 14 article “Minneapolis and the Somali Riddle” on the Huffington Post.)
During the next Q&A session, someone asked about the effects of double immunization if a child was vaccinated first in Somalia and again in the U.S. “We have an immunization registry that helps track, to get just the shots that they need,” said Ehresmann. “If a child got double doses, it would be okay.”
A parent asked why schools are bringing autism to their attention, and not their children’s doctors. Ehresmann said it’s because schools screen large groups of children, and doctors see smaller groups of patients.
Someone asked, is Thimerosal the same as mercury? “Thimerosal contains one kind of mercury as part of its makeup,” Ehresmann said. “So yes, there is a small amount of mercury in vaccines…. it’s ETHYL mercury.” A few sentences later Ehresmann answered another question saying “but Thimerosal is not in vaccines anymore.”
Another question asked MDH to respond to a former head of the National Institutes of Health stating that some children can’t detoxify chemicals in vaccinations. The Age of Autism’s Anne Dachel stood up to fill in omitted details. “That’s only one person saying it,” said Ehresmann, adding that population studies have not found a link between vaccinations and autism.
[Another vaccine question by a non-Somali parent was put to the bottom of the pile and not answered. That question was: “How can you tell people that doubling up vaccinations (or overvaccinating) is perfectly ‘okay,’ when the U.S. Department of Health and Human Services conceded in the Hannah Poling case, and the head of the CDC subsequently stated that they concur, that too many vaccines CAN cause autism in certain children?”]
Presentations were abbreviated as the forum wound down. Phil Sievers from the Minnesota Department of Education urged Somali parents to submit e-mail testimony to the Senate autism task force on which he serves. Sue Benolken from the Department of Human Services listed some available services. Zahra Omar from ARC talked about medical assistance for therapies, and psychologist Pat Pulice discussed services at Fraser, an autism treatment center.
Anne Harrington, a psychologist who spent 21 years with Minneapolis Public Schools, was the only non-Somali to greet the group with “salaam.” Harrington has an ASD son with Down syndrome, and testified to the importance of early interventions. She advised people who work with Somali families that “they prefer to be listened to, and to ask questions, rather than be given the answers.”
The final event was an all-too-brief parent panel that offered information and inspiration. One Somali mother credited fellow parent Idill Abdull with guiding her on getting therapies for her child, including biomedical treatments. She told other parents to call them for help.
Another Somali mother said that after her child got early intervention, he finally started talking. She told parents they must have “less talk and more action,” asking parents to involve all generations of the entire family in helping the children with autism to achieve their fullest potential
Abdulkadir Khalif had written an essay about his son, which he copied for others to read. He spoke both in Somali and English. “If autism has existed throughout history, it’s not what my child has,” he said. Khalif described how years ago people thought malaria came through the air (“mal-air” = “bad air.”) When at first people theorized that mosquitos transmitted malaria, the government ridiculed them.
Khalif mentioned kwashiorkor, a protein malnutrition described in the home country as “the disease the old baby gets when the new baby is born.” He also expressed concern that there are “certain things in the vaccines that can cause autism.” He wondered whether some children are allergic to chemicals in them, and asked whether there was a way to find out. (No one from MDH answered that question.)
The loudest applause of the day came after Khalif issued a call to action. “A lot of rich people have improved the lives of their children,” he said. He urged parents to work with insurance companies to get coverage for their children’s treatments.
Social worker Abdillahi Mohamed said that parents can reduce the stigma of autism by educating themselves about the condition, and looking for services and resources.
Facilitator Hassan Samantar closed the forum by saying “This is a baby step” to open up the dialogue on autism in the Somali community – a dialogue that will continue.
Nancy Hokkanen lives in Bloomington, Minnesota with her husband and 10-year-old son. She contributes to autism listservs and volunteers for Generation Rescue, A-CHAMP, and the Minnesota Natural Health Coalition.