Autistic people, like anyone else with a disability, function best when given appropriate accommodations.
Parenting approaches differ, but mostly, everything we consider “good parenting” fulfills two basic needs: It makes children feel safe, and it makes them feel loved. Parents and non-parents alike tend to scorn any parenting approach that doesn’t meet these goals. That is, unless the kids in question are autistic — in which case parents are too often encouraged to pursue approaches that traumatize and alienate their kids. I call these parents “Autism Warrior Parents,” and people caring for autistic children can learn a lot from their mistakes.
Autism Warrior Parents (AWPs) insist on supporting their autistic kids either by trying to cure them, or by imposing non-autistic-oriented goals on them — rather than by trying to understand how their kids are wired, and how that wiring affects their life experience. Ironically, an AWP’s choices not only interfere with their own kid’s happiness and security, but contribute to social biases that prevent autistic people of all ages from getting the supports they need. Worst of all, by publicly rejecting their own children’s autism and agency, and by tending to hog the autism spotlight, AWPs are partially responsible for the public’s tendency to sympathize with parents rather than autistic kids — which, at its most extreme, can mean excusing parents and caretakers who murder their autistic charges.
Autism Warrior Parents (AWPs) insist on supporting their autistic kids either by trying to cure them, or by imposing non-autistic-oriented goals on them — rather than by trying to understand how their kids are wired.
But parents who learn how to spot and sidestep AWP mindsets can make their autistic child’s life (as well as their own) so, so much easier. Let’s start from the beginning.
All parenting is hard. Maia Szalavitz quips in her book Unbroken Brain that parenting has much in common with unhealthy addictions: It makes no sense to outsiders, at least from a purely rational standpoint, given that negative experiences tend to outnumber positive ones. But even though no one can truly understand parenting until it becomes reality, parents-to-be know the typical expectations: Babies don’t sleep and they cry a lot, then they smile at you and your heart breaks open, then they start babbling and you take videos and share them with delighted relatives, then they become kids and start talking for real and you post their most adorable quotes on Facebook.
If these typical parenting expectations aren’t met — and especially when, as with autistic kids, there is neither conventional wisdom nor clear-cut medical explanations to say why — parents usually flail. To make matters even more difficult, the rest of society tends to treat those flailing parents with a combination of pity, shunning, and condescending praise, which leaves post-diagnosis parents feeling isolated. What do confused, lonely people without roadmaps tend to do? They grasp at anything that gives them direction. And this is where Autism Warrior Parents come in, because they can provide both missing pieces: guidance, and ready-made community.
Autism Warrior Parents aren’t limited to the typical post-Jenny McCarthy-era diehards who — despite the unequivocal debunking of any link between autism and vaccines — still consider their autistic kids vaccine-damaged rather than, in the words of writer and autistic parent Carol Greenburg, “neurologically outnumbered.” They also include those who fund or promote questionable autism science, and parents who consider their children so impaired that the opinions and personal experiences of autistic activists are irrelevant to them — that, in other words, any autistic adult who can put words on a screen or speak must have fewer support needs than their own autistic children and should therefore be ignored. At the root, Autism Warrior Parents are those who, for whatever reason, refuse to accept their autistic child’s actual reality and needs, and instead put their energies into absolute change or control of that child.
AWP insistence on battling rather than comprehending autism derails both autism conversations and autistic lives. When AWPs focus on the “difficulty” of their children’s behaviors rather than on the reasons for those behaviors (usually sensory or processing triggers common to autistic people of all abilities), they reinforce unhelpful assumptions that autism is a mystery, and a horrible parental burden. The reality is that autistic people, like anyone else with a disability, function best when given appropriate accommodations.
AWPs have also turned the internet into an autism information minefield, which is especially frustrating given that online resources are often invaluable for families who lack access to therapists, specialists, and other key resources. In his book Unstrange Minds, author Roy Richard Grinker describes a South African traditional healer using the internet to correctly diagnose a boy’s autism after mainstream medical approaches failed. But the internet can also lure credulous or desperate people to try dodgy, potentially bankrupting treatments, such as “recovering” autistic kids using intravenous chelation, or via off-shore stem cell injections. And once parents have internalized AWP messages that their autistic kids are projects rather than people, it’s not much of a stretch when they empathize with, and refuse to judge, parents who murder their autistic children.
AWP insistence on battling rather than comprehending autism derails both autism conversations and autistic lives.
What autistic children actually need are parents who focus on accepting their kids’ current realities as autistic individuals, so those kids are equipped not merely to cope, but to thrive. Since the rest of the world tends to be unforgiving to kids who fall outside standard social operating parameters, it’s important that autistic kids are treated like people rather than works-in-progress by their own families. But with all those AWPs making their kids feel not just unloved but unsafe in their own homes, it is no wonder autistic kids are known to have such high rates of anxiety.
How can parents do right? I recommend making sure your kids know they’re autistic, and also that you accept them, love them, and have their backs. As autistic writer Emily Paige Ballou observes:
“If you had a kid who was gay or transgender, would you want or expect them to go the rest of their lives without the self-knowledge and self-acceptance involved in claiming those labels? Or without the ability to seek out information, history, appropriate health care, emotional support, and community with others if they wanted it? Why should those things be denied to an autistic kid?”
Your autistic kids depend on you, but if you’re not autistic, then you have to learn how to be the parent they need, and autistic people’s perspectives can help you tremendously. So do your best to absorb how autistic people of all abilities think and perceive the world. If people describe your child with labels like “low functioning” or “high functioning,” tell them why autistic activist Amy Sequenzia, who types to communicate, considers those terms useless. If professionals insist that your non-speaking child must do speech therapy and Applied Behavioral Analysis, tell them how focusing solely on those approaches prevented Ido Kedar from getting appropriate communication and education options until he was a teenager. If your child prefers to talk by repeating what other people say, quote Amythest Schaber on why that echolalia is a functional communication strategy. If you are told that you’re in denial about your kids’ challenges by accepting autism, refer them to Ruti Regan on why accepting being disabled is not the same as liking every aspect of being disabled.
Listen to people who listen to autistic people, like Dr. Clarissa Kripke, an expert in understanding and supporting autistic people who are aggressive or self-injurious, Kerima Çevik, an unapologetic intersectional disability activist, and Steve Silberman, a science writer who brings clarity to autism history — and explains that autistic people like your child have always been here.
Show respect for your kids as human beings. Don’t talk smack about them in public, even in the name of “honesty.” Openly express acceptance for them, in ways that work for you both: This includes understanding that some autistic people don’t like to be touched, not letting family or friends bully touch-sensitive kids into being hugged, and instead observing or asking how your child prefers to demonstrate affection. Try to avoid falling into the trap of assuming everything your child does is because they’re autistic, or making everything about their autism. Let them like liking things like memorizing dialogue and riding elevators, and go with their flow when you can, instead of worrying about what non-autistic people do.
Do your best to ensure your autistic children get accommodations: If they need noise-canceling headphones, get them. If they can’t tolerate certain noises, if they need a quiet room for taking school tests, if they need an object to fiddle or “stim” with in order to process input, if they don’t speak orally — get them whatever setup they need to function and communicate, and make sure everyone who interacts with your child on a regular basis knows their accommodations are not optional.
Show respect for your kids as human beings.
Find communities full of people who value autistic people, that include them as leaders and equals, and that rally behind them. That way, when your children grow up, these communities will respect and include them, too — however they can participate, and even if they don’t.
Learn to identify and dodge organizations that emphasize curing, disenfranchising, or punishing your children instead of helping them. They are often misleadingly named, as with the autism cure-oriented organizations National Autism Association, and Medical Academy of Pediatric Special Needs. When unsure, take a look at orgs’ mission statements and community discussions, notice whether they include autistic people, if they discuss autism with respect and empathy, and if they allow outlandish “treatment” claims.
Understand that if you constantly feel overwhelmed by the demands of parenting, it may be because you share traits with your kids: Many parents find out they are autistic only after their own kids are diagnosed. As Greg Love, the autistic father of an autistic son, writes, “The work of caring for my kids at home feels constantly overwhelming. This is no surprise as many of the most basic things of adulthood present to me as constantly overwhelming.”
I suspect the main problem with Autism Warrior Parents is that, in treating autism as something to “fight” or “defeat,” they commit themselves to battle with an important part of their own child’s life. Enmeshed in fear and loathing toward autism, they condition themselves to forget that their children are fully human, and that humans respond best to compassion. If you want to avoid the AWP pitfalls, you can start by being kind to yourself, so that you can share that kindness with your autistic children.