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Autism Action Month: Severe Autism Edition

How you can support severe autism families in your community.

Key points

  • April is Autism Awareness/Acceptance/Action Month.
  • Although much discourse will celebrate autistic strengths, families with severely autistic children often struggle with significant challenges.
  • There are many things you can do to help these families, including those you know and those you just happen to meet out in the community.

April is fast approaching, and the posts have already started ramping up celebrating “Autism Awareness,” or the more trendy “Autism Acceptance.” At the National Council on Severe Autism (NCSA), we prefer “Autism Action,” because our emphasis is on concrete solutions for the countless struggles severe autism families face finding appropriate educational, therapeutic, behavioral, vocational, and residential services.

But this post is not for those families. This post is for everyone who cares about those families—those they know, like friends, extended family, or neighbors, or those they happen to see at a supermarket, playground, restaurant, or elsewhere. Before the sheer onslaught of news, blogs, and TikTok videos completely numbs you to all things autism, I just wanted to offer some suggestions on how you can make life just a little (or in some cases, a lot) easier for families who may be living in a nearly constant state of crisis.

As a first step, please watch the video "A Voice for Severe Autism." You may think you know what life is like for severe autism families, because you have a cousin or a friend with a severely autistic child with whom you speak regularly. But we, the parents of these children, don’t often share the details about the behaviors we live with every day—including aggression, self-injury, and property destruction—simply because we want you to see what’s great about our children, not what’s scary or disturbing. This video, full disclosure, is both these things. But consider how much more scary and disturbing it must be experiencing these rages yourself, or trying to keep everyone else safe through them. After this seven-and-a-half-minute video, you will have a much better understanding about what our families go through.

What You Can Do for Severe Autism Families You Know

Offer to help in practical, specific ways. If you say to a severe autism parent, “Please let me know if there’s anything I can do,” you’re likely to get a sincere thank you, then never hear from them again. That’s not just an autism thing—generalized offers of help put the onus on those who need help to reach out and ask, which can be very difficult for many people. Instead, call or text your friend or neighbor with a particular offer: “I’m going to the grocery store, do you need anything?” “Does your son want to come over and swim in our pool this afternoon?” “I’m taking the snowblower out to do my driveway, is it OK if I do yours while I’m out there?” “I’m picking up my daughter from soccer practice, I’m happy to give yours a ride home also,” etc. Virtually everything is more difficult to do with a severely autistic child who requires constant supervision. You have no idea how much of a relief it can be for someone else to assume a task, even one most people would consider relatively minor or painless.

Help the siblings have fun. Living with a severely autistic child is stressful for everyone in the family—including the other kids. I know many families who have crisis plans for autistic rages that involve siblings locking themselves in a bedroom or even going out and hiding in the car. No child, needless to say, should ever have to live in fear for their own safety.

More practically, a child that requires constant supervision significantly restricts where the family can go—especially in single-parent households or families in which one or both parents work a lot. This means that, as much as the parents may want their neurotypical children to be able to do the things they want to do—like see the latest Marvel installment, spend an afternoon at the paint-your-own-pottery studio, or play miniature golf—it just may not be possible. Taking the siblings on such outings not only creates more joy in the world, which is always a good thing, but also alleviates the guilt parents often feel about how often they must tell their other children, “I'm sorry, we can't.”

Take the early shift. One of the most devastating things many severe autism parents live with is extreme sleep deprivation. Some autistic children sleep only a couple of hours at a time; others are up for the day by 3 a.m. And because they require constant supervision for fear they will elope (leave the house), pull everything out of the refrigerator onto the kitchen floor, or eat something toxic, that means parents get little sleep as well. You may not feel comfortable watching a severely autistic child alone—and parents may be equally and reasonably uncomfortable with carers who haven’t been appropriately trained. But one of the most valuable gifts you could give parents is to offer to watch their children (including their autistic child) while they sleep—knowing that, if a situation arose, you could just wake them up. When my kids were younger, my father-in-law used to come over every Sunday morning by 7 a.m., just so my husband and I could sleep in—for which I’m still profoundly grateful. And if you’re not a morning person, weekend afternoon naps also work.

Include the whole family. I will never forget the bat mitzvah invitation I received almost a decade ago addressed, not to “The Lutz Family,” but to “Amy, Andy, Erika, Hilary, Aaron and Gretchen Lutz.” The only one missing? My severely autistic son Jonah. It literally made me sick to my stomach.

Here’s the truth: we would never take Jonah to a bat mitzvah. There’s no way he could sit quietly through the service, and we would never want to disrupt anyone’s special day. Trust the parents to make that decision. Maybe we might have brought Jonah to the party to enjoy a quick piece of cake—or, most likely, we would have found a caregiver to watch him that night. But please don’t make us feel that one of our children is not worthy and not welcome. We get that feeling too often—every time we take our kids out to eat or to a movie or to the zoo, and find ourselves on the receiving end of disapproving stares or comments when our kids are too loud. The last thing we need is to feel excluded by the friends and family who are supposed to care about all of us.

What You Can Do for the Severe Autism Community

Let severe autism families cut in front of the line. Waiting is extraordinarily difficult for many severely autistic individuals. As much as they desperately want their McDonald’s, or their turn on the water slide, the longer the wait the more likely the family will have to abandon the activity and make a quick exit as the screaming, crying, and hitting start to escalate.

It costs so little to allow them to step in front of you, but that single action may literally save the day for that entire family, from the individual who will get his—as my son calls it, “ketchup and hamburgers and French fries”—to the parents and siblings who are just trying to make sure their loved one can enjoy the things he loves the most.

Ask parents managing meltdowns if they need assistance. The typical reaction I would get from strangers when Jonah used to flop on the ground screaming was a wide berth. And ignoring such scenes is obviously better than judgmental comments. But best of all is to check in with the parent, even if you’ve never met her, to see if she needs help. Parents almost never want bystanders to call the police, even if their autistic child is attacking them. But they may really appreciate a volunteer to re-stack the pyramid of cans their child knocked over, or wait for their fast food order to be ready and bring it out to their car, or keep an eye on their typical toddler to make sure she doesn’t wander away in a chaotic moment.

Speak up. If you follow organizations like NCSA, or attend to the social media posts of your friends and family members with severely autistic children, you’ll see that there is much ongoing legislative and regulatory activity regarding the supports and services available to this population. When you see a call to write to a state representative or submit public comment in support of changes that will help our kids, please take a minute to do so. Because it’s so difficult for many severe autism parents to testify in congressional hearings, attend political fundraisers, or visit policymakers, this online activity is the best way we have of expressing our kids’ needs—and there’s real strength in numbers. If you don’t know what to say, just ask—often, draft emails or comments are circulated to make it easier for people to participate.

And it’s not just politics. The general public today associates autism with the “quirky genius” model popularized by shows like The Good Doctor or The Big Bang Theory, so please take advantage of any opportunity to educate others about what severe autism really looks like—in casual conversation, or by sharing relevant information online, or even by inviting a parent to address a school group or community organization.

And here’s one thing you should never do: Please don’t send us links to stories about autistic kids who were cured by watching Disney movies or riding horses in Mongolia. Trust me, we’ve already heard.

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