Something like two or three percent of Americans are autistic, so most likely you or someone you know is autistic, even if you don’t realize it yet. April is Autism Awareness Month, and there’s still so much for parents, teachers, therapists, and doctors to learn from the autistic community and each other. There’s not nearly enough support available for disabled people and their families, but there are simple ways you can support autistic people and their caregivers. This guide is my small contribution to the conversation. I hope you’ll share it with all your friends and family. Your support means more than you can know!
I didn’t need a journal article to tell me that parents of autistic kids age faster. I can feel it in my bones. Parents of autistic kids can have PTSD levels of stress, and the vigilance, advocacy, and exhaustion that comes with intense caregiving often leads to isolation.
My son is autistic, and that has made it harder for me to leave the house. It’s made it especially hard to connect with friends. I can’t celebrate traditional milestones with them, and they can’t understand the time I spend navigating the world of doctors, therapists, and special-ed. The same way it can be hard for parents to connect with child-free friends, it can be hard for parents of neurodivergent kids to connect with parents of neurotypical kids. We’re all parents, but our experiences are very different.
As parents, autism touches every aspect of our lives, including our own mental health. This has made me extra grateful for the friends who check in on me, even when they don’t know what to say. Their friendship doesn’t just help me feel like myself. It helps me keep going. Below you’ll find some of the things that have made me feel supported emotionally and practically and simple ways you can support your friends who are struggling.
Get to Know Us
Be a friend the way you would with anyone else. Ask about our day. Believe us when we say it was a rollercoaster. It can be hard to know who can handle the truth about our lives, so please don’t be offended if we are slow to open up. Learning a few personal details about our kids can go a long way. I love when a new friend texts to ask what foods my son can eat and then makes sure to have those foods on hand for our next playdate.
Talk to Our Kids
It means the world to me when our next-door neighbor listens with amusement as my son tells him everything he knows about sprinklers. We love when you talk to our kids and listen intently. Showing us that you like having our kids around helps us relax. It’s nice to know you can see how special our kids are. It also helps to acknowledge that a child’s disability can affect the whole family. Spending time with siblings and getting to know them as individuals can be an easy way to give parents a break or some one-on-one time if you’re not feeling up to babysitting.
Offer to Babysit
It can be difficult for parents of autistic kids to take even short breaks. Many of us don’t have the luxury of hiring a random teenager to babysit our kids, who may need trained caregivers and predictability. If someone we know and trust offers to give us a break, we might jump at the opportunity, but if we don’t, please know it’s probably because we know our kids aren’t ready, and it takes time for someone new to learn their support needs.
Trust Our Judgement
All parents are inundated with advice and expectations, and parents of autistic kids also face a staggering amount of misinformation and prejudice. We don’t need links to the latest studies on why Tylenol does or doesn’t cause autism. (It doesn’t.) Please resist the urge to send us articles on ABA or the latest “cure” you heard about on TikTok. We have done the research, looked into every option, and spent long hours wondering what to do. We don’t need more advice. We need more breaks—and less second guessing. If we say our kids can only handle 20 minutes at the park, don’t pressure us to stay longer, even if it doesn’t make sense to you. We know our kids and we’re doing our best to keep everyone, including ourselves, safe and semi regulated.
Make Us Laugh
Remind us that we’re multi-dimensional people with needs and interests outside of caregiving. Encourage us to go for a walk or take extra time to browse in the lipstick aisle at the drugstore. Pass on a favorite book or text a link to a podcast that made you laugh. Text us a silly meme. Tell us about your latest celebrity crush. Please! We need this.
Forgive Us
Let us off the hook if we don’t volunteer at school or take on any extra projects at work. Be patient with us if we’re distracted during conversations. Sometimes all our focus needs to be on keeping our kids safe. Other times we’re just exhausted. Please don’t take it personally.
Know Outings Can Be Hard
When a new friend said, “We can meet at your house if it’s easier,” I knew she was a keeper. I love when someone asks which places or activities would feel manageable or what time of day might work best. A lot of our kids struggle with elopement, so it was helpful when a friend checked to see if a playground was fully fenced in before we decided to meet there. She drove by beforehand and that helped me relax and have more fun during our visit. It also made me feel seen and cared for!
Invite Us Anyways
When I messaged the parents of a classmate to get a feel for how loud and wild their birthday party might get, I told them my son is autistic and can get overwhelmed in arcades. They walked me through the schedule and said, “We totally get it. We would love to see you, but we also understand if you need to leave at any time.” It was exactly what I needed to hear. We can’t always show up, but we appreciate being invited. You can also encourage us to attend community events by offering low-sensory hours, easy options to leave or take breaks, and a welcoming attitude.
Celebrate with Us
Really we’re looking for friends who can hold these two truths with us: We love our kids and this is really hard. Along with being parents, we’re also therapists, advocates, and care coordinators. So much of the work we’re doing is invisible. It helps to make a big deal out of the small wins, whether that’s getting a new therapy approved or seeing our kids feeling more comfortable at school. When we share our good news, it means we trust you to celebrate with us. (Please feel free to share your wins with us too! If your teenager just got into college, let us know. But maybe hold off sharing your worries about whether they’re going to Harvard or Yale. Many of us have no idea how independent our kids will be or if college is an option for them.)
Encourage Us
Honestly the TLDR version of this post could be tell us we’re doing a great job over and over in big and small ways. We all need LOTS of encouragement. Some days I need to vent on Marco Polo. Other days just getting a text that says, “I see how hard you’re working. You’re doing amazing,” makes me feel seen and appreciated. I’ll never forget when my son’s kindergarten teacher sent me a note after I read to her class. She said, “He adores you with his entire heart and soul.” It was such a gift to see the relationship I had built with my son through her eyes. This is different than calling us superheroes or saying, “I could never do what you do,” which just makes us feel more isolated. Acknowledging our effort and celebrating our progress helps us feel less alone.
Learn About Autism
Autistic people can struggle with communication, time perception, managing tasks, eating, sensory processing, sleep, mobility, and mental and physical health. Their support needs fluctuate daily and throughout their lives. It’s a lot to try to understand, but no one expects you to know everything about autism. We certainly don’t. (Fun fact: autistic kids often have autistic parents who are learning to meet their own needs while they take care of their kids.) We would love it if we didn’t have to explain everything from scratch, so please follow disabled advocates online. Talk to your kids about neurodiversity. Read books written by autistic adults. Share books that celebrate neurodiversity with your family. I don’t know the school librarian personally, but when she included a picture book called More than Words in the Tournament of Books, she felt like a friend. The whole school was reading a book about alternative ways of communicating, and it was a simple way for all the kids to connect and feel seen.
Advocate for Our Kids
All the kind words in the world mean nothing if you prevent our kids from getting the services they need. Please vote in local and national elections for people who will support disabled students and adults. Push back against stereotypes. Check your facts and educate your community. Share your personal experiences with autistic people. Let people know how amazing our kids are. Help us keep going. Your support means more than you know!
Thank you!
Nebula Notebook is a place to meet kindred spirits, get inspired, and learn how to find ease and joy in the creative process—even when life is bananas. 🍌🍌🍌
✏️ PS—The fastest way to grow as a writer is to book a manuscript critique or a creative coaching session with an expert. My clients get agents, sell books, and win awards. They also learn how to enjoy the creative process, so they can keep going when life gets hard. 👏
This is a question I've had for a while! Thank you.
What a helpful list, thank you for putting this together it is such a usual thing to have and be and to refer to.