It’s Time to Remove Fear From How We Talk About Autism and Parenting

This is part of Help! Wanted, a special series from Slate advice. In the advising biz, there are certain eternal dilemmas that bedevil letter writers and columnists alike. This week, we’re tackling them head-on.

We get a lot of letters from Care and Feeding readers about kids and autism, so we thought that it would be a good idea to take a step back from the weekly churn and bring in an expert to help us make sure we’re giving the best advice possible on this important and complex subject. To that end, I’ll be speaking with Zoe Gross, director of advocacy at the Autistic Self Advocacy Network. In addition to her autism advocacy, Zoe is known for establishing the annual Disability Day of Mourning vigil, which, according to the ASAN website, is “a national, cross-disability event which commemorates the lives of disabled people murdered by their family members or caregivers.” She received a White House Champions of Change award for this work in 2013.

Our conversation has been edited and condensed for clarity.

Nicole Chung: Zoe, can you start by explaining what you do in your role with ASAN?

Zoe Gross: The Autistic Self Advocacy Network is a policy organization run by and for autistic adults. My role there is to, with a deputy director, manage the operations department, which oversees publications, communications, programs, social media, grassroots advocacy—everything except the direct policy work.

As a self-advocate, what do you think is especially important for columnists like me to be aware of when we’re offering advice about autistic children and parenting?

I think it’s important to be aware of the state of play in the autism world and what parents are dealing with, because unfortunately, parents are dealing with a lot of fear-based messaging when it comes to autism. Even from trusted authority figures, like doctors and teachers, [parents] can be hearing really scary things, like “Your kid will never do X, Y, Z” or “You’re missing a developmental window for Y” or “If your kid doesn’t play with toys in this way, then their social skills and development will be bad.” Every aspect of a kid’s life—how they eat, how they play with their toys, how they spend their free time—unfortunately, parents are encouraged to obsess over the question “Is that optimized for making the kid less autistic?”

That’s a very bad message for parents, both because it creates a lot of anxiety for them and because it includes the message that the goal of raising an autistic kid is to have them be less autistic—which is damaging both to how the parent views the kid and to the kid’s self-esteem. It also sets the family up for failure, because autistic people are autistic for the rest of our lives.

Absolutely. For our readers, just for starters, to catch up on that state of play you mentioned, ASAN has a guide called Welcome to the Autistic Community for autistic people. For parents of autistic children, like me, I can recommend Start Here: A Guide for Parents of Autistic Kids. Are there other educational resources you think could be helpful for our advice team that you’d recommend, whether from your organization or others, that would help us give better advice to our readers?

Yeah, there are other anthologies and books that have a lot of different first-person perspectives on autism. A couple are put out by the Autistic Women and Nonbinary Network; one is called Sincerely, Your Autistic Child, and the other one is What Every Autistic Girl Wishes Her Parents Knew. Those have a lot of autism-from-the-inside-out kinds of viewpoints that I think can be very helpful for many people.

I thought it might help to get into specific scenarios a little bit. I remember getting a question from a letter writer who suspected that the child of one of their friends is autistic, and wondered whether they could or should say anything to the kid’s parents. Of course, these are often murky situations and there’s no one-size-fits-all answer, but I thought perhaps you’d have some other guiding ideas for people who might be in a situation like this.

There are many things that it’s important to think about. Do you have the kind of relationship with this person and this family that might allow you to do this? Are you planning to just say, “Kid might be autistic—bye!” and run away, or can you add some value after raising that? Because, like I said, if the parent just goes on the computer and Googles autism, there’s a lot of stuff out there that might not be the best thing for them to see when this has been raised potentially for the first time. Are you going to be able to provide some education or some resources that will help get them on a path that will be affirming for their kid and is not so scary for them?

Sort of related to that, when I get questions where someone suspects but doesn’t know, I generally try to strike a balance between acknowledging and making room for the possibility of neurodivergence without attempting to armchair diagnose people briefly described in letters whom I obviously don’t know and who may or may not actually be autistic. But I’ve noticed that we also get a lot of comments from readers in response to some of these questions—for example, a question might be focused on a particular child’s behavior, or a very passionate interest, or a sensory sensitivity or issue—saying something along the lines of, “This kid is probably autistic.” And sometimes the comments are from autistic people trying to be helpful. While I understand the motivation, I also wonder what, if any, reservations we should have about these sorts of drive-by observations and diagnoses, and the snapshots of one or two traits that people are basing them on.

I say this not to invalidate anyone’s diagnosis or self-diagnosis, but it is possible to have autistic traits without being autistic. This is especially common in family members of autistic people who may not meet the full criteria but definitely share some traits in common with their autistic family members. It can be known as broader autism phenotype or just as being an “autistic cousin”—that’s another way it’s been put in the autistic community. Just because somebody has a very passionate interest or stims or hasn’t met certain developmental milestones in the same way or order that a neurotypical kid would or other things that could be clues that the person may be autistic, one data point doesn’t add up to a diagnosis.

That’s helpful. I never want to just shut down the possibility, but sometimes I’m not quite sure how to respond to that.

Most of the people who write to Care and Feeding are adults seeking advice on parenting—or advice for dealing with their own parents or relatives—but we occasionally get letters from minors who are having some issue with their parents. I’ve seen a couple of letters from autistic youth whose parents don’t seem to understand or accept them, which is really sad to me. I remember one letter from a kid whose parent kept insisting that they couldn’t be autistic, and wouldn’t get them evaluated, even though they were pretty sure that they are. When we’re attempting to support or advise minors in these situations, what’s the most helpful and supportive advice we can give them?

Obviously, there are many barriers to diagnosis. Those could be financial; those could be, like, these kids are experiencing not having anyone around them who could help them go through this process; they could be based on discrimination—people in certain groups are less likely to be diagnosed than other groups, and that includes adolescents and adults, but also people of color and women. So there are a lot of barriers to diagnosis, and the autistic community understands this, so just because you don’t have an official diagnosis doesn’t mean you’re not autistic. At ASAN, we run programs for autistic young adults, and we don’t require that they have paperwork in order to do those. If you know, then you know.

Maybe to take it a step further, we could let them know that if they want to seek out a group like yours or other communities, they have every right to do that, even without the parental support they deserve or without a diagnosis.

Absolutely. There are self-advocacy groups out there if they want to go to something in person. Self Advocates Becoming Empowered has many in-person meetups of its People First chapters—those are people with intellectual disabilities, specifically. There are also autism meetups that are more like social events. There are a lot of ways to find autistic community.

Another type of letter we get is from people who might be concerned or upset by a child’s behavior—a child they know or think might be autistic—and are wondering whether they can or should say anything to the parent. I’m usually Team Mind Your Business when it comes to other kids’ behavior, but I think when there’s a real safety concern, that’s when I’d probably want to say something. Any advice on how people should be thinking about this?

I think the urge to offer advice is really strong, especially if you’re looking at a situation and you’re like, “Oh, I know what would help this situation with this kid—I’ve been through something similar, and this is what worked for me.” But what works for one family may not necessarily work for another, and many families of autistic kids find it really frustrating if they’re asked, “Have you just tried X?” or told “You just need to do Y.” Because these are often things they’ve tried or things that just wouldn’t work for them, or because of the kid’s autism they don’t process information the same way. So, yes, like you said, if there’s a safety concern that might be different, or if there’s a bullying situation where the kid is harming other people and the parents don’t know and need to intervene, that’s one thing. But if a kid is just acting out in public or having a tantrum or a meltdown, or is just acting differently than other kids do, yeah, I would fall on the side of “mind your business” as well in most of those cases.

We sometimes hear from people who want to know how to talk to their non-autistic child about, say, an autistic sibling, cousin, or friend at school. It’s hard—because of all the unhelpful information and stereotypes out there, I’ve personally heard other parents give really terrible definitions or explanations of autism to their kids and mine. How can we best advise people trying to talk about autism and neurodivergence with more neurotypical kids to encourage acceptance and appreciation of people’s differences?

ASAN has an “About Autism” page on our website, which is written in fairly plain language and would be appropriate for older kids and teens. For younger kids, you may need to go a little simpler. I think it’s fine to just start by saying, “This person has a disability that’s called autism, and it means that their brain works a little differently than yours does.” And then, if you know, it’s fine to go into some ways that autism affects that person—which is going to be different for every person and give practical advice to the kid about what that means for them. So, like, “This other kid in your class is autistic and they speak with a communication device, and when they use it, you should listen in the way you would if they were using their voice.” Here’s what’s happening, here’s why, here’s how it affects you and what you should do.

I’ve seen other questions from parents who want to help an autistic child in a sibling relationship or a friend relationship. I sometimes think we overlook the fact that a relationship doesn’t have to look like a “typical” sibling relationship or expected friendship to be really valuable to both people. But I wonder if you could elaborate on this as an expert and an advocate—a lot depends on the kid in question, but are there general things to keep in mind when giving advice in the area of friendship?

I think it’s important to start from the basic understanding that autistic people may show friendship in different ways, may be comfortable receiving friendship in different ways, and just generally might have different settings regarding how much socialization we might want or what works best for us when hanging out with someone. So when you’re looking at friendship between either an autistic person and another autistic person, or an autistic person and a non-autistic person, it could be very different from what you might expect—whether that’s what they do when they hang out together, or how they talk. Some people might see autistic kids together and say, “They don’t ask about each other—they just go back and forth taking turns saying the thing they want to say in that moment,” and to them that’s concerning. But it’s just a different way of communicating, and it’s working for both kids, so I wouldn’t see a huge need to intervene.

What can happen is that the expectations can be different. A neurotypical kid is going to expect things that an autistic kid might not provide in an interaction or in a friendship. And I think that’s something that’s good to talk to kids about, and say that there are many ways to be friends, and different people will do different things with their friends. If someone wants to be alone sometimes, that doesn’t mean they’re not your friend. If all you do with someone is play video games and you don’t talk about what’s stressing you out—or you do talk but you don’t play pretend—that’s still a friendship too.