Autism activists are concerned that the appointment of vaccine skeptics to a newly formed state council gives credibility to views the state has struggled to dispel.
The MN Autism Council was formed last fall by Sen. Jim Abeler, R-Anoka, to discuss autism and advise the Legislature on public policy.
Abeler said he wants the group to represent diverse viewpoints and said it will be focused on issues like housing, employment and education, not vaccines.
But some advocates take issue with having people who have vaccine concerns on the council.
Anti-vaccination groups have focused on Minnesota's Somali-American community in the past as they tried to perpetuate the hoax that vaccines cause autism, contributing to a drop in vaccinations and the largest measles outbreak in the state's recent history in 2017.
"Even if it's not something that's discussed or that a policy is going to come out of, giving them this large contingency on this council is dangerous. It's giving credence to a theory that's false," said council member Noah McCourt, an autism self-advocate who also serves on the Minnesota Governor's Council on Developmental Disabilities.
Measles cases on the rise
Doctors have widely concluded that vaccines, like the one for measles, mumps, and rubella, are not linked to autism. The World Health Organization list published last week includes "vaccine hesitancy" as one of 10 threats to global health in 2019, and notes measles cases have increased 30 percent worldwide.
Two of the more than 30 members on the council are known vaccine skeptics. One of them is Wayne Rohde, who is one of three initial members Abeler picked to help shape the group. Those three selected the rest of the members from a pool of applicants.
Rohde took issue with the World Health Organization's characterization.
"Those who question vaccine safety are quickly marginalized as saying 'We're anti-vax,' " said Rohde, who is co-founder of the Vaccine Safety Council of Minnesota, which raises concerns about vaccine safety. Another MN Autism Council member, Patti Carroll, is also part of that group. Rohde and Carroll are also on the executive leadership team of Health Choice, another organization focused on making sure vaccines remain optional.
He wants to defend parents' choice to not vaccinate their children, Rohde said, but that discussion will not take place in the MN Autism Council.
"We're not about causation within the council. The council is all about how to deal and help those who are afflicted, and their families and those who provide services," said Rohde, who has a son on the autism spectrum.
Abeler, who is chairman of the Senate Human Services Reform Finance and Policy Committee, said that what someone believes about vaccines doesn't negate their other expertise and experience with autism-related issues. He personally believes doctors should offer patients "the pluses and minuses" of vaccines and talk about potential injuries that could result from them. However, he said the council's work is answering questions like how best to help someone's 25-year-old son who has autism and wants to live on his own, but is struggling to find a job and housing.
The MN Autism Council met Wednesday and Abeler started the meeting by reiterating that the commission is not pro- or anti-vaccine and said, "I'd suggest we don't discuss that anytime soon, or maybe never."
It was the third meeting since the council formed. The group is building on the work of a state autism task force that disbanded in 2014.
Legislators who formed that task force emphasized the need to help the thousands of children with autism in the state and their families, but a string of resignations by committee chairs followed personality conflicts. The disintegration of that task force provides the backdrop to this council's efforts and quarrels.
Idil Abdull, a longtime autism advocate at the Capitol, was part of the previous task force and clashed with some members of the group. She is not part of Abeler's committee, but has aired concerns with it.
"The fact that he appointed so many people from the anti-vaccine community who will try to divide us is heartbreaking," Abdull said.
After the previous group ended, the need to advocate for a "fast-growing, highly complex community" remained, MN Autism Council Chairwoman Ellie Wilson said.
One in 59 children were identified with an autism spectrum disorder nationwide, according to the Centers for Disease Control and Prevention. But in Minnesota, it's one in 42 children.
The MN Autism Council allows a diverse group of advocates to get their goals and concerns on the radar of legislators and Gov. Tim Walz's administration, Wilson said. Vaccine discussions are not part of the council's agenda, she said, adding, "I'd like to stick to that."
Kris Ehresmann, director of the Minnesota Department of Health's infectious disease division, has been working to debunk fears that vaccinations are tied to autism. She said she is interested in seeing what the council comes up with.
Focus is supporting families
"If their total focus was to come up with a recommendation related to vaccination, yes, it might give me pause," she said. "But on the other hand, it seems this group is focusing more on how they can support families."
Sonya Emerick, who is involved with the MN Autism Council, said she is worried about having vaccine skeptics in the group. But she wants to focus on the work, rather than lingering on that. If a group with such a wide range of opinions can move forward with shared policy priorities, she said it could have major effects on Minnesotans.
"The work is vital," said Emerick, a Minneapolis mother of two who has autism, as do her children. "Every aspect of my life and my children's lives stands to be positively impacted."
Jessie Van Berkel • 651-925-5044