As conversations about autism are back in the spotlight, a Minnesota Somali advocate weighs in

[MUSIC PLAYING] NINA MOINI: It's our top story this afternoon. A new report from the CDC says autism diagnoses are increasing in the US. But the reason as to why is pitting members of the Trump administration against scientists, researchers, and community advocates.

In a press conference yesterday, Health and Human Services Secretary Robert F. Kennedy Jr. argued autism is a preventable disease caused by what he called an environmental toxin he vowed to identify.

ROBERT F. KENNEDY JR: This is part of an unrelenting upward trend. Overall, autism is increasing in prevalence at an alarming rate. The epidemic is real.

NINA MOINI: Kennedy's comments have drawn pushback from scientists who research autism and community advocates who work to dispel misinformation about autism and vaccines. Mahdi Warsama is the CEO of the Somali Parents Autism Network in Minnesota, and he joins me now. Thank you so much for your time this afternoon, Mahdi.

MAHDI WARSAMA: Thank you for having me.

NINA MOINI: Mahdi, for our listeners who may not be familiar with the work that Somali Parents Autism Network, or SPAN, does, can you talk a little bit about what your organization does and how long it's been around?

MAHDI WARSAMA: SPAN was founded by a group of parents with children diagnosed with autism, mainly from Somalia, in 2014. The goal was to educate and inform the Somali parents with children with autism. The type of services we do include system navigation, delivery system navigation, connecting parents to services and support.

We advocate for them. We have educational workshops, autism-related educational workshops for the parents. We have a robust autism awareness-- or autism acceptance awareness campaign. We go to the houses of worship, community gatherings, Somali media outlets, to talk about autism and how it's affecting the community, and also to debunk and to-- some of the misinformation and misconceptions about autism within the community.

NINA MOINI: Yeah. And just for context for people, we mentioned at the top of the show that some research has found that as many as 1 in 16 Somali children in Minnesota are diagnosed with autism. That's three times more than the state average. And like you mentioned, your work has been going on for more than a decade now.

When there is a newer community to Minnesota and these diagnoses begin to really grow, what is at the center of the misinformation that you are trying to dispel?

MAHDI WARSAMA: First of all, the misinformation and misconceptions about autism is not specific to the Somali community. It's not particular to the Somali community. It's in every community.

But one of the-- the difference between the American-born population and the immigrant population, particularly the Somalis, is that we are a low-information community. Many people are new to the United States. They have no conceptual understanding of what autism is. Many people are illiterate. They cannot read the public health agencies' information from their websites, or they cannot read or understand the studies that has been done about autism.

So what happens is that, on one hand, the prevalence is very high. On the other hand, it's mainly a new community to the United States, immigrant community. There's an educational gap between the American-born and the immigrant population from East Africa.

So the misinformation-- and there are no culturally appropriate information coming from the health agencies. So what happens is that the misinformation and misunderstanding fills the void. So the only information the parents have direct access to is the internet rumors, word-of-mouth information, family-to-family information, and sometimes, unfortunately, people who are deliberately targeting this low-information population to feed them with misinformation.

So it's more of lack of conceptual understanding and lack of proper information. It's not always as easy as you think-- as people think, sorry-- to reach out this kind of population to get the correct information. Because the only way they get information is through word of mouth and internet rumors. So unless we have a robust awareness campaign to debunk some of the misinformation, I think the misinformers will fill the void.

NINA MOINI: Are you concerned, Mahdi, with the rhetoric and the language that is coming now from the nation's top health official, Robert F. Kennedy, Jr.? Because that, then, goes beyond misinformation that's just out there on the internet. This is coming from the highest powers in the nation overseeing everybody's health. What does that do for your cause? And are you concerned about that?

MAHDI WARSAMA: I don't want to directly comment on what the Secretary said yesterday, but I would tell you that, because there was no reliable scientific information coming from the scientific community and the public health agencies about what the causation is, what's causing autism, the-- as I said earlier, people have to rely on misinformation. And health agencies and the scientists, they can't say, definitely, what causes autism. And that's why they are not saying anything other than, we are going to study.

But for common folks, a less educated population, that's not an answer for them. So if someone comes forward and say, I know, I have the answer. This is what causes autism. This is the research done by such-and-such person. Then people, naturally-- and the tendency is that people will believe it, whoever comes with some information, whether it's true or not.

So I think the challenge is, on the one hand, the health care agencies, public health agencies, do not have an answer. And the people who have certain preconceived notions about autism are speaking every day and are disseminating information.

So it's up to the scientists and the public health agencies to come forward and say, OK, we understand this is a huge-- a big concern for the parents with children with autism. We understand that previously we didn't have any conclusive evidence of what causes autism. But we are going to do a new study. We will try our best to find out what's the cause of autism.

NINA MOINI: I understand what you're saying.

MAHDI WARSAMA: I think that's the best--

NINA MOINI: So you're saying basically--

MAHDI WARSAMA: That's the best way.

NINA MOINI: Yeah. You're saying if people don't have a reason, they will gravitate to people claiming that they have the reason. But all of the research out there suggests there isn't just one cause that's been identified, whether it be genetic or environmental. And one of the focuses that remains is just making sure that there isn't a lot of misinformation around vaccines and vaccinations, and the misinformation there that that has some sort of a connection toward autism.

So I'm just curious to know before we have to go, what are you going to be doing to try to really double down on some of the correct health education around vaccines?

MAHDI WARSAMA: We're already doing-- in most cases, we do not directly involve ourselves with talking about vaccines all the time. Because in our community it has become a very controversial topic. However, if the people come to us and ask us the question, are the vaccines the problem? Is this caused by vaccines? We tell them straightforward-- we tell them no. There is no scientific evidence or conclusive scientific evidence that connects autism to vaccines.

In fact, I met with one of the local community leaders here in Minnesota. He has three sons. Two of them are not autistic. One is autistic. He told me the one who is autistic has not been vaccinated. So we tell the parents, this is just-- there's no conclusive evidence.

But the problem is, again, it's up to the scientific community to come forward and start debunking this information. But we are doing our part. And I also would-- may I say, this rumor that vaccinations cause autism has real-life consequences, including the measles outbreak in Texas and other places.

So on one hand, we have to be honest with the people and tell them as it is. On the other hand, we don't want to keep doing the bid of the scientific community. It's up to the scientific community to come forward--

NINA MOINI: Mahdi--

MAHDI WARSAMA: --and start educating the public.

NINA MOINI: --thank you very much. I understand what you're saying. You're saying there is a need for more culturally-specific outreach and meeting people where they are. Mahdi Warsama, thank you very much for your time.

MAHDI WARSAMA: No problem. Thank you for having me.

NINA MOINI: That was the CEO of Somali Parents Autism Network, Mahdi Warsama.