There is no link between vaccines and autism. But many communities still have questions and concerns about vaccines and safety.
To be successful, orgs that support people with autism must consider existing biases, language barriers, and cultural differences. They also face the added challenge of disproving harmful myths that keep parents from vaccinating their children from deadly diseases, like measles.
In Minnesota, for instance, Somali children have both the lowest vaccination rates in the state’s history for the measles, mumps, rubella (MMR) vaccine and higher autism rates in Minnesota’s Somali community compared to the general population.
To learn how health care workers can better inform their communities about autism and the importance of getting vaccines, PGN talked with Mahdi Warsama, who leads the Somali Parents Autism Network (SPAN); and Ellie Wilson, who heads the Autism Society of Minnesota (AuSM).
They shared insights about their work supporting individuals with autism and their families and the cultural approaches they’ve developed to help.
Here’s more of what they said.
[Editor’s note: The contents of this interview have been edited for length and clarity.]
PGN: How do your organizations confront stigma and misinformation? What are you learning from the conversations you’re having with people in your community?
Mahdi Warsame: Just a couple of years ago, it was not easy to find so much power in publicly saying that I have a child with autism.
Many parents were shy. They felt embarrassed to bring their child with autism to their house of worship or to take them anywhere where the community can see. But thanks to our autism awareness campaign and the work of other organizations, like AuSM, there’s more acceptance nowadays.
There are still some misconceptions and misunderstandings about autism in the community, so health care workers need to know that it’s a work in progress. We’re not there yet.
There are a lot of things that are still happening. There is still misinformation. It’s not necessarily particular to Somalis only.
For example, as illegitimate and debunked as it is, there’s a theory out there by a man named Dr. Wakefield that there is a correlation between the MMR vaccines and autism. He lost his license as a result, but the information is still out there. It’s on the internet.
There are also people who still believe that autism is demon possession. There are people who believe that it’s caused by the evil eye.
So, all these things are going on, but while they are going on, the community is making a lot of progress when it comes to seeking services and support.
For example, when it comes to helping their children to get an early intervention or evaluation, or when it comes to publicly coming out and saying, ‘You know, I have a child with a disability, developmental disability. I need support. I need help.’
PGN: Mahdi, what are some challenges your organization faces in debunking these common vaccine myths?
M.W.: One of the problems is that the National Health Service, the CDC, and other public health agencies do not provide enough information about the causes of autism, because they don’t have any. It’s still under research.
Many people think that autism is a new phenomenon. And that’s not true.
There’s an Arabic proverb that says people are enemies of what they don’t know. Because of a lack of correct information, sometimes people create things in their minds.
It’s also very important to understand where people get their information in the first place. In the Somali community, in most cases, and I would say for the majority of parents with children with autism, they’re not going to check the Minnesota Department of Health website. They’re not going to check the CDC website, or any research or public health study on the University of Minnesota website.
They’re going to look for simple, easy-to-understand information. And where is that information?
That information is on the internet. That information is found through word of mouth, calling a friend or a neighbor to say, ‘What do you think about this? What do you know about this?’
So, that kind of information is circulating around, and it creates an echo chamber within the community.
PGN: Ellie, what’s at stake for the health of communities in Minnesota?
Ellie Wilson: When you’re working with a vaccine hesitant group, especially one that is not only marginalized by culture, language, race, but also marginalized by this high probability of disability, what’s really important to consider is the sort of underlying logic to their concern.
It’s not productive to think of them as solely an under-informed community, because that’s not really a fair description of them.
There is a reason to pause and acknowledge a couple of things. One is that public health and medical autonomy are not competing variables.
Sometimes we think of them as either individualistic and [working] for your own self, or you’re [doing it] for the public good. And that dichotomy is not real.
I think it’s OK to promote people’s medical autonomy and [validate their concerns.]
If you have real questions and concerns about the medical care you’re getting for your children, that should be a dialog that providers are open to so that we can figure [it] out. Maybe you’re worried about getting all your vaccines at one time, maybe we can spread them out across a schedule that makes you more comfortable.
I know that’s higher utilization and maybe not efficient, but efficiency is never king in the disability community. You’re never going to get high efficiency in supporting our people.
Two, I’ve heard some of Mahdi’s and my colleagues share—sometimes vulnerably over time—the fact that Western and standard U.S. medicine protocols are mostly informed by the mainstream and are historically informed by mostly white males. That is a systemic bias that I think is real and does exist.
So, to treat vaccine hesitancy as if it’s only a function of, ‘You don’t understand,’ or ‘You just need to fall in line,’ or ‘You just need to somehow prioritize your child’s immediate health over their development over time,’ like, all of that is too reductive.
The conversation from providers and from those of us that want to support the Somali community and to protect them is really about not being too high and mighty to engage with those parts of the underlying concern, which I think are legitimate.
PGN: Are there any recurring common worries or topics that could help health workers talk about autism in a better way, come up with new ideas for discussing it, or better ways to explain the need for vaccinations?
E.W.: We have a segment of our population that has been approached with active disinformation as a mechanism to capitalize on a family’s vulnerability.
What we get scared about are people who are coerced to spend thousands and thousands of dollars or to travel halfway across the world to some non-accredited, non-evidence-based center that might even practice dangerous things in order to tell you that they’re going to cure your kid of autism.
And that is not something that everyone experiences in the community, but for those who do, it’s a very, very scary experience. And I think that where stigma is the highest and where fear is the highest is where that opportunity is the highest.
There is a mechanism that [those who oppose vaccines] use: They invest in tools and outreach to go find people. And when they find them, even if you’re approaching intelligent, reasonable, relatively resourced people, if you’re accessing them in their most vulnerable moment—like, ‘My kid was just diagnosed with something that we don’t know what their life is going to look like, and we’ve heard a lot of negative things about what their life could look like,’—there’s something there that’s activated.
In general, at the Autism Society, we don’t talk about a cure for autism because it’s too harmful in the broader community. It’s a very hurtful thing to say to a lot of people.
There are some people who will say, of course, ‘I wish I wasn’t autistic,’ or ‘I wish my kid wasn’t autistic.’
So, it’s hard to sort of paint in a monolith for that. But on the whole, there is a lack of recognition for the very human response to diagnosis, which is grief and fear, and we have to make space somehow.
We have to be smart enough to both know how to talk about disability with a little bit of authority and affirmation to say things like, ‘Not only can this be OK, but it will be OK.’
But we also have to realize the needs of parents. That there’s no right way for them to respond.
Their emotional response, no matter whether it’s ideal or not, is predictable. Like, it is a stage that every family goes through, no matter what color their skin is or where they’ve been exposed to these ideas.
And that’s a hard thing to talk about in the disability community. It brings us so dangerously close to the idea that it’s OK to be sad that you’re disabled, and we don’t want people to think that.
But it’s really hard to create space for the full complexity of that emotional reaction.
Not very many groups take responsibility for that complexity, you know. I’m not saying that it’s easy; I’m saying we miss a lot of opportunities in making families feel seen.
This article is supported by the Centers for Disease Control and Prevention of the U.S. Department of Health and Human Services (HHS) as part of a financial assistance award to the CDC Foundation totaling $69,392,486 with 100 percent funded by CDC/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by CDC/HHS, or the U.S. Government. In addition, the CDC Foundation does not guarantee and is not responsible for the accuracy or reliability of information or content contained in this article. Moreover, the CDC Foundation expressly disclaims all liability for damages of any kind arising out of use, reference to, or reliance on any information contained within this article. This article are not intended as, and should not be interpreted by you as, constituting or implying the CDC Foundation’s endorsement, sponsorship, or recommendation of the information, products, or services found therein.