Evelyn Yang on autism and the pandemic: “Families are suffering … they’ve been abandoned”

"Math guy" candidate's wife on the massive challenges of raising an autistic kid right now — and why UBI can help

By Matthew Rozsa
April 10, 2020 10:00AM (UTC)
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Evelyn Yang (AP Photo/Eduardo Munoz Alvarez)

As any student of American history will tell you, a presidential campaign doesn't have to end in electoral victory to change history. From William Jennings Bryan advocating social welfare policies adopted by later presidents and Eugene McCarthy mainstreaming opposition to the Vietnam War to Shirley Chisholm breaking barriers for women and African Americans and Jesse Jackson becoming the first African American presidential candidate to run a competitive race, many defeated presidential candidates broke barriers or changed the national conversation in significant ways.

Andrew Yang was never a serious contender for the 2020 Democratic nomination, but his presidential bid accomplished both of those feats. He took a policy proposal that had once been relegated to the fringes of American political discourse — the universal basic income, in which the government guarantees every citizen a certain amount of money — and brought it into the mainstream with a catchy name, "the freedom dividend." From a symbolic standpoint, he made history as the first significant Asian-American presidential candidate.

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Yang did something else, for which he and his campaign do not receive nearly enough credit. As I wrote in December, he emerged as the foremost advocate of autism rights among any presidential candidate in recent memory.

To quote my original article:

[Yang] has done this by openly discussing the fact that his son is on the autism spectrum. It is a subject he has broached on programs like "The View" and during presidential debates. He has done this by recognizing the hard work of parents who raise children on the autism spectrum, including his wife Evelyn, and by saying that he has as much to learn from his autistic son as his child has to learn from him. He has made clear that many of his political values, including his empathy for those who struggle, stems from his familiarity with the struggles of those who must make their way through life with conditions on the autism spectrum.

Evelyn Yang, the candidate's wife, has said that these issues are "really important to talk about, because there's all this stigma around special needs, and autism specifically. And there really shouldn't be, because all our children have something special to offer. And our son has made our family better."

I reached out to Evelyn Yang for an interview because, at a time when the entire nation is under quarantine to cope with the COVID-19 pandemic, I wanted to hear her thoughts about the unique struggle facing the autistic community. I am autistic myself (one of the great joys of my career was interviewing Elmo on "Sesame Street" about this topic) and know that people on the spectrum are struggling with this quarantine in unique ways, some of them quite different from our neurotypical counterparts.

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"I've met so many families that routinely have to make difficult buying decisions, particularly around alternative therapies that are not covered by insurance," Yang told Salon by email after our interview. "There are also tons of hidden costs, like having to buy more expensive food items to accommodate a special diet, for example. Families with special needs are balancing these expenses with all of their other everyday expenses. Meanwhile a parent's capacity to work is oftentimes restricted because of more complicated childcare responsibilities. A basic income would obviously be a welcome source of relief especially now as work capacity is even more constrained for all of us. It's also obvious the economy won't snap back overnight even after the virus."

The Yangs have spent a great deal of time discussing how autistic experiences deserve more attention, and Evelyn herself is on the board of KultureCity, a not-for-profit that focuses on creating an inclusive culture for people with autism. We discussed autism advocacy, the ways parents can more effectively advocate for their autistic children, making sure the autistic community is not left behind during this crisis and how America would be better off right now if it had UBI. (As Andrew Yang tweeted last month, "You know what would have helped before the crisis, during the crisis and after the crisis? Universal Basic Income.")

The following interview has been edited for clarity and context.

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I want to focus initially on something you said last year. You told CNN that there is a stigma attached to special needs and autism specifically. Can you elaborate on what you meant by that?

First, people do not know that if you've met one autistic person, you've met one autistic person, right? I mean, there are similarities there, but I think that people, when they see the word "autistic" — I'm sure you get this too, where they ask "How can you be autistic? How can you be on the spectrum?"— they have a certain picture in their mind.

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Sheldon from "The Big Bang Theory," something like that.

Right, right, exactly! They're people, people with autism. It's not like autism defines them. And I think that way about our child. And that's how I would like the world to view autism. It doesn't define you as a person, it's just a set of characteristics that you might have that may not be identical to someone else with autism.

I think that's a great way of putting it: "If you know one person with autism, you know one person with autism." That really sums it up. People with autism are individuals. We just have a different way of looking at the world. Our brains function differently. I don't think it's necessarily inherently better or worse. It's just different.

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I absolutely agree! And the more I study it, and the more our son grows up and we really get to see glimpses into his mind, I just appreciate him so much. There is nothing that I would change about his mind, the way his brain is wired. It is special. And to your point: It's not like it's better, but it's not like it's worse. It's just unique, and I appreciate it so much. When you talk about "high-functioning,"' I really hate the way they define it. It's like "high-functioning" versus "low-functioning." Like a lot of the terminology, I find it just to be stigmatizing in and of itself.

It's inherently insulting to certain people on the spectrum.

Of course, of course! I mean, even high-functioning is insulting, right? Because you're like, "Oh wait, I'm autistic, but I'm high-functioning." I hate it. I wish we could change it, but this is how people understand it. What I prefer to say is "verbal" versus "nonverbal." But if you have a child that's nonverbal it's just difficult, even in this quarantine period. I know one of the things you wanted to talk about was, how do we help our children cope with it? And I think because our son is highly verbal, it's probably much easier to explain what's going on. And if you have a child who is nonverbal, who has more challenges with comprehension, than I imagine it to be almost unimaginably difficult because our lives are turned upside down. Nothing is the same.

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I'm glad you brought that up. At one point you said that you were the "CEO of Team Christopher," and there are a lot of parents with autistic children who are now CEOs of their own Team Christophers, but they have to deal with unique challenges because when you're raising an autistic child, there are unique needs. The three that come to mind, and I'm curious if you agree and what your advice would be, are these: The disruption of structure, because structure is so very important and routines are being upended; the need to develop executive functioning skills in order to be self-reliant in this crisis; and therapeutic services, which frequently can't be performed because sometimes they have to happen in a medical setting, and can't be done remotely.

I would say you're completely right. I know when I look at our daily routines, and what's been most challenging for us, it falls in those camps. The routine part, my advice for other families is — and maybe I'll start with the big picture — is the school routine. For school-age children, they're getting most of their routine from the school environment. And right now what the school environment looks like is all over the map depending on where you live and what your specific situation is. And that's just horrible because I think, while our son has these incredible special ed teachers and he's still keeping up with his individual therapies — albeit online and adapted — it's still frustrating and difficult, but it's almost like the best-case scenario. But in most situations, for a lot of families across the country — I would say most families around this country — they've just been abandoned.

It's tragic. And not just for kids on the spectrum, but for all kids with disabilities. Families are suffering and they're being left to figure it all out alone. What I was telling a friend the other day was that the special education problem has nothing to do with this virus. It was a massive problem before the virus. There was a lack of funding, prioritization and resources — $23 billion to be exact and the shortage of 300,000 special ed teachers — so resources were sparse before the virus, and now they're practically nonexistent. So I think one of the biggest takeaways from this is that the more prepared and with it you were before the virus, the better equipped you'd be now to try to rise to the occasion and adapt and meet these new challenges of remote learning and remote therapies for kids with disabilities.

In our situation, we happen to live in New York City, which is better equipped than other cities in terms of school districts and their access to special needs resources, but we are the exception and not the rule. And so while we still have our classes that have been moved online, and our therapies have resumed remotely, this is not the case for most people and it's horrible. There's just no replacement for that. It's impossible for parents to try to replicate that kind of school structure and that routine.

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This is really disturbing to think about, but this is probably not going to be the last time we see a crisis of this nature. We have to brace ourselves and prepare for a future where this is a new normal and we might be facing another virus at some point, presumably after having found a vaccine for this one. We just can't leave people with disabilities behind. We have to get in front of it. And that means actively thinking, preparing and allocating the appropriate resources towards protecting people with disabilities. First we need to get that done and understand that there are some parents — I would say most parents with kids with disabilities — are working from an incredibly disadvantaged place.

I want to discuss one other component specifically about being autistic during this crisis. And that is, people on the autism spectrum tend to have anxiety conditions, myself included. I once interviewed Temple Grandin and she used, in my opinion, a brilliant metaphor. She said it's like being in a dark room, standing on a table, knowing there are vipers all over the floor.

Oh my gosh.

Right now I feel like everyone feels that way, regardless of whether they're on the spectrum. But I'd say that there are hardships involved with anxiety that, when you're on the spectrum, are unique. What is your perspective on how parents with children with autism, or people who are on the spectrum as adults, can cope with that?

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I think you're completely right. We're dealing with so much anxiety right now all across the board, and I think it's a very special challenge to try to get that anxiety in check, especially when you have younger children. I'm just speaking from our own experience because, you know, we're all anxious. Our older son asks us all the time, when do we get to go back to school? When will I see my teachers again? And it's hard. I know it's much easier said than done, but trying to get your own anxiety in check I think is the best way to help them get their anxiety under control.

I think that people sometimes don't get how sensitive kids are to how we're feeling and what we're thinking. We think we're good at hiding it, but they can kind of feel it off of us. We do this, like, "family fun time," which is really important, just taking the time to be goofy together and laugh together. I mean, it doesn't help anyone to pretend like everything is normal, because they know that things aren't normal. Killing yourself to adhere to specific routines that were in place before the quarantine, I don't think is always going to be the best plan for this. It's almost like you have to establish new routines and ones that allow for a little more fun and flexibility. I let the kids stay up a little later… I might be lying about how planned that is. [Laughter.]

Let me just tell you right now, that's just awesome. That automatically makes you a cool mom!

Well, yeah, but exactly! Things like that, you know, you kind of think, "I'm being a terrible parent right now," but I think it ends up feeling more fun for the kids. And sometimes I refer to it like, 'Oh, doesn't it feel like we're on vacation? You know, we'll eat Oreos." We have this thing going on now where we have these Oreo parties. Really, it's just us eating Oreos together. But you know, we never did Oreo parties when we weren't in quarantine. And for them it's very special. Not to send everyone's kid on a sugar high, but small things like that — that are a little different, a little more fun, that make it seem a little more special — I think can help with the anxiety. And also just not killing yourself and putting a ton of pressure on yourself to try to maintain that perfect normalcy. We all know that that is not the case.

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We were discussing earlier how people on the spectrum think differently. Has your son or have other autistic people you've met offered you any unique insights on this crisis?

I feel like it's been quite a short time. We're on Week Two. Both Andrew and I have been holed up, trying to figure things out at home. Homeschooling is such a beast. I would describe this period as trying to keep our heads above water right now.

I don't know if I've had incredible insights or epiphanies, but I think that one thing — I don't know if it's a new discovery — but is that it's really important to give information, especially to your kid. Sometimes you think like, "Oh, the less information I give them and the more I pretend like things are normal and the more I try to shield them from what's happening, the better it is for them." I think there is a middle ground between scaring them and then completely shielding them from the truth. Just like adults, kids appreciate truth and logic. And this may be more true. I mean, I think you are in a better position to tell me, but you know, it's something that you appreciate more so than neurotypicals. You know, just facts, right?

I would say just facts, because when you're on the spectrum, it is difficult to be adept at navigating social situations. The direct and honest approach is more comforting than adding a bunch of layers of social nuance that have to be picked apart first. Does that make sense?

Yes, yes! So it is like, just the facts. And our son, he's seven, but he's totally like that. And a lot of parents with kids on the spectrum are familiar with these things called "social stories." And we use them to prep our kids for what's to come. In this case it couldn't really be prepped because it all unfolded and escalated so quickly. One day you are going to school and seeing your friends and teachers and then the next day, everyone's quarantined. But if you're anything like that, then you don't really shy away from the gruesome details. He wants to know everything, he wants to know the facts.

There's this great book online, it's from NPR. It's a comic book about the coronavirus, explained to children. It explains what the virus is, what's happening, why we are all practicing social distancing now, how we're trying to continue, how doctors are working on treatments and a vaccine so that we can all get back to normal life. I think this is very helpful in my son's case, to remind him that the virus doesn't typically kill children or healthy adults — which we all as a family are — but we're staying home to protect the people who can get very sick. He really wants to know the details, like the hard details like that. He's also taken to researching pretty much like every single disease, and he can probably tell you exactly how many lives each one has claimed. He's that type of kid. He's like a walking encyclopedia.

So I think, in broad strokes, just trying to be as honest with your kids as you possibly can is a good practice, without getting into very scary territory.

I was just thinking about how the idea of a universal basic income, before the Yang campaign, was not mainstream. And now, with the stimulus package, the main way that people are going to receive relief is through a one-time payment of $1,200 for every adult. That's kind of the idea behind a universal basic income, albeit applied to this specific crisis. Do you think the campaign deserves some credit for helping to mainstream that idea, and could this lay the foundation for a more permanent UBI in the future?

I would say yes. Andrew has this funny thing — I don't know if it was a tweet or something he said to someone — about how he never thought that he was going to wrap up this campaign in February and then we would be getting UBI in March. He certainly is getting a lot of credit for helping to mainstream this idea, just putting this idea on the table of putting cash in people's hands. I mean, if you would just sort of propose it out of the blue without him, I don't know if it would have taken off as quickly. It's almost like he created this space for it. 

For the second part of your question: I really hope so. I mean that is the goal, right? That's the main reason why Andrew ran for president, and he saw the premise was automation and the changing workforce, but you could just replace automation with the pandemic, and I think that once people see that money in your hands does nothing but help, I think it will help popularize the idea and pave the way for this to become a more permanent social policy.

I think the argument against universal basic income is, "Oh, it'll make you lazy" or It will somehow encourage people not to work. I think people are going to find that is not the case. It will just free people in ways that we couldn't fathom. I mean, this is obviously a horrible situation, but if this could help pave the way for a more permanent basic income, then that's a good thing.


Matthew Rozsa

Matthew Rozsa is a staff writer for Salon. He holds an MA in History from Rutgers University-Newark and is ABD in his PhD program in History at Lehigh University. His work has appeared in Mic, Quartz and MSNBC.

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