Autism parents want to respond with joy
My co-presenters at the ABAI 2026 conference are co-authors of the “joy curriculum,” anchoring autism intervention with the fundamental understanding that parents want to respond to their children with joy. Learn more here.
My written remarks that kicked off our session follow.
Good evening, and thank you for this opportunity to speak to you as a parent, and answer a few important questions from a parent’s perspective. My son is a middle-aged adult with autism. He was diagnosed as a preschooler in the early 1990s. I am journalist and writer, so you may know me through my books.
Or not, and that’s ok.
Tonight, I hope to answer two questions that are part of this panel’s focus. First, answering how our family found acceptance and joy. And second, offering a few of our family’s strategies for navigating autism, fostering independence, and managing emotional challenges
Finding joy, and acceptance
One of the best books I read in college was from the career center, Richard Bolles’ classic job-hunting guide, What Color is Your Parachute? He recommended listening carefully to a hiring manager’s question—because there likely was a fear behind it. Since then, I’ve often listened for the fear behind a question.
Today’s first question asks an autism parent how they found acceptance. For me, the answer is straightforward: I love all my children fiercely. With our oldest, that meant recognizing the responsibility to raise him as best we could, and learning how to meet that responsibility in a loving way. But I remember feeling some of the fears in that question, such as:
- I’m struggling to accept my child’s disability and worry that means I am unloving and unlovable
- If accept my child as autistic, I might limit their options for the future
- My acceptance doesn’t matter when the world around my child doesn’t care
Emotions signal conditions
When a question signals a fear, the answer is going to be different. Fears are flags, signaling poor conditions around us. It can be hard to stop and take breath when we are afraid, but with that pause, we can better see what the fear might be signaling. Do we need more information? Do we need to connect to different people? Are we missing a resource? Probing our fear with these kinds of questions can help us find better answers. And, those better answers usually quell the fear or shame and let our love and humanity and acceptance shine through.
We are human, and it’s in our nature to look for the easier answers. We want to conserve our resources and move ahead in a sustainable way. But reaching for a quick solution can also be risky business, especially in parenting.
A swarm of information followed my son’s diagnosis and treatment, and we heard the hidden messages, including the big idea that autism is a disease or pathology. So, it’s no wonder that families get sidetracked.
Responding with joy
We wanted to respond to our son with love and joy, just as we did with our other children. Thankfully, science is making its own progress, so some of those earlier, more damaging messages about autism are starting to lose their grip.
The research describing neuro-divergence and autism in four broad categories is particularly helpful. To our family, this new framework feels far more robust, and better reflects our lived experience. My son’s growth and development was broadly affected by his autism, but this new framework feels easier for us, and for the world around him, to respond with joy.
Joy
We were busy when my son was young, and we made mistakes, but we also found a lot of good information considering the times. We surrounded ourselves with good people, and, for the most part, made good decisions. As an example, a preschool teacher once urged us to “extinguish” one of his “perseverative” behaviors. We considered it. But as we translated those science-y words to plain language, they lost their power and persuasiveness.
Trusting joy’s inner drive to navigate autism
Our son was growing and changing every day. We wanted to trust his inner drive. Some things he did appeared to have a purpose, even if we didn’t understand it. We wanted to focus on where he was and responding to him with joy, while still making sure we were going in the right direction.
Trust
Recently, I stumbled on some science that explores this big idea about trusting that inner drive. It’s called the many-wrongs principle. In the mid-1960s, biologists noticed that birds maintained a stunning level of integrity on their migration routes, especially when considering a bird’s individual capabilities for navigation. More recent research is finding that that our individual inner drives plus working together is key—and this isn’t just true for birds. Did you know that triathletes use the many-wrongs principle to guide their open-water swims? It’s really beautiful to see it at work.
Joy sparks independence
How each of us views dependence and independence can differ within a family, community, and culture. In addition, most children have a little spark in them that fosters their independence, strength, and resilience. Sometimes, when we are parenting and we need a little more cooperation from the kids, we might call that little spark “obstinate.” That emotion is signaling that we may need to tread carefully.
Independence
My son had to comply with a lot of requests from adults to learn new things. We, and his teachers and therapists worked intensively, deliberately, purposefully, and fast. He made great progress, but all that work also made him vulnerable to learned helplessness. We kept an eye out for it and addressed it when it showed up. But more importantly, we discovered that those times and places where he seemed the least flexibile were often the best places to build his strength and resilience. By the middle of high school, he was participating in his IEP meetings and we started stepping back to become his ally instead.
Pivoting to joy in tough times
To the final question, when we are caught in an emotional moment, then what?
Detaching from the situation can improve our ability to observe what might be happening. We can take stock and find another way through. Detaching might be easier for you all, in a professional role. But even as a parent, when we can detach, we can see our child with increasing clarity, and perhaps select a different response. Here’s one last big idea: attachment and detachment aren’t opposing forces. In fact, I think professionals and parents working together can create more powerful spaces where we are both attached and detached. These spaces create more chances to respond with joy and reinforce our loving connections to one another.
Finding clarity
Our son has tapped this wisdom, too. Sam has watched people – family members, friends, strangers – do things when they were afraid of him. He recognized that people weren’t always going to approach him with an open mind or kindness. Sam generally moves through the world in a calm, gentle way that seems to help others keep their fears in check. Sometimes that makes me really sad, but the truth is, we can only control our own feelings.
To me, acceptance feels like a magical mix of resistance and going along, like riding the rapids or flying a kite. The task in front of us may be a little daunting at first, but once you’ve got the hang of it, hot dang, it’s fun.
Fixing it, family words, and joy
When my son, Michael, was two years old, he came up to the video camera while I was taping poolside. Sam’s swim lesson disappeared as Michael’s little face filled the view. Then, in his tiny voice, he said, “I fix it, I fix it.” He brought up the dangling lens cap and snapped out the light.
After that, “I fix it, I fix it” became the family catch-phrase. Michael texted the other day to share another fix-it story. His own 2-year-old son had joined to help make his bed, saying “I fix it!” Michael’s heart soared, as did mine.
The story called up lessons learned as Sam worked with speech therapists: language and meaning are deeply intertwined. Language grows and changes at the cultural level, within communities, and in individual families. Family words can grow deep roots and connections, even when idiosyncratic and fun.
ABAI/Applied Behavior Analysts International Convention poster
In addition, we find joy and purpose in lending our time, talent, and treasure to make things a little—or a lot—better for someone. We care for each other by fixing things. However, even we see something out of whack, we should take moment to make sure we understand what needs fixing.
Joy in autism parenting
In a few weeks, I’m speaking at a conference of behavior therapists. I am part of a group of parents invited to participate. I’ve spoken at parent conferences, but this is the first time I am speaking to professionals—a group of people trained for fixing it.
Some autistics have been pushing back on “fixing” autism. The controversy tells us we have a lot of work to do, particularly with our social expectations and autism acceptance. Still, young autism parents (and us old-timers on occasion) can get caught in the middle. We want to respond to our child with joy—the way I did when Michael “fixed” my camera and he did when his own son “fixed” the bedding.
In my talk with professionals, I hope to communicate this fundamental importance of responding to our children with joy. Parents may need help meeting their responsibility to raise a child with autism, but let’s arrange things, or change things, so that a parent can tap that joy. That’s fixing it.
You can find more information about the event here, which includes both in-person and online registration.
Federation test
This is a test to see if I’m federating again
Fostering independence
How each of us sees independence (and dependence) can vary within a family, community, and culture. Most children have a little spark in them that fosters their independence, strength, and resilience. (We might call it obstinate when we are seeking a little more cooperation!)
The way we all—teachers, parents, therapists—worked with my son as he grew up required his compliance in learning new things. Years of intensive, deliberate, purposeful, and fast work made him vulnerable to learned helplessness. We had to keep an eye out for it and address it when it showed up.
But we also discovered that the situations where we believed he had the least flexibility were actually the best places for him to build his strength and resilience. By the middle of high school, he was participating in his IEP meetings and we started learning how to step back.
Learning how to shift from caregiver to ally is worth another book (and I’m working on it.)
***
I’m part of a group parents talking about joy and acceptance to behavior therapists in San Francisco. If you’d like to hear more, register here. You can also read more in Responsible and Responsive Parenting in Autism: Between Now and Dreams.
Cultural messages about autism
Our culture sends messages about autism, sometimes overt, sometimes hidden, that autism is a disease or pathology. That message is tough on parents.
First of all, it’s human nature to look for the easier fix. We want to conserve our resources and move ahead in a sustainable way. But we also understand that grabbing for a quick solution can sometimes be risky business, especially in parenting.
It’s no wonder, then, that some autism families get sidetracked looking for solutions. Recent science has pivoted, however, and now describes neurodivergence and autism in four broad categories. In other words, science is becoming more accepting, too.
Even among children whose growth and development is broadly affected by their autism, the solution has always been to pivot toward their learning and connecting. That work keeps families on surer footing and creates room for everyone to respond to their progress with joy.
Autism acceptance and trusting your parenting skills
Calling April “autism acceptance month” helps both families and our broader culture. We needed more than awareness. In the swarm of information that follows a diagnosis, many parents hear that hidden message: autism is a disease or pathology. Of course, such a message will sidetrack families.
Like all parents, we responded to our son’s progress with love and joy. Thankfully, science is making its own progress. That means some of the more damaging messages about autism are losing their grip.
I began to understand this as I was writing my first book, See Sam Run. I recalled a pivotal moment from Sam’s early childhood. His preschool teacher had urged us to “extinguish” one of his “perseverative” behaviors. We talked it over. As we translated those science-y words to plain language, they lost their power. We let him be.
Our son was growing and changing every day. We wanted to trust his inner drive. Some of the things that he did appeared to have a purpose to him, even if we didn’t understand them. We wanted to respond to him just as we would any another child: focused on where he was and responding to him with joy as he showed progress.
The science of human learning is catching up. We are learning that we’d made the right choice. There’s some new science exploring this big idea about nature and our inner drive. They call it the many-wrongs principle.
Finding acceptance
One of the best books I read in college may have been a paperback from the career center, Richard Bolles’ classic job-hunting guide, What Color is Your Parachute? He recommended listening carefully to a hiring manager’s question—there likely was a fear behind it. Since then, I’ve often listened for fear buried in a question.
For example, as the parent of an adult with autism, I’ve been asked how I found acceptance. My simple answer is: I love all my children fiercely and with my oldest, that also meant recognizing the responsibility to raise him as best we could, and learning how to meet that responsibility in a loving way. But what if there’s a fear in that question, perhaps something like:
- I struggle to accept my child’s disability and worry that means I am unloving and unlovable
- If accept my child as autistic, I’ll limit their options for the future
- My acceptance doesn’t matter when the world around my child doesn’t care
In other words, when the question signals fear, the answer is different. Our emotions can flag poor conditions around us. When we feel afraid, we can take a breath and see what our emotions are signaling. Do we need more information? Do we need to connect to different people or resources? Better questions lead to better answers–letting love and acceptance shine through.
Autism Acceptance Month, and San Francisco news
Friends,
On Sunday, May 25, I’m speaking at a conference of behavior therapists in San Francisco. I am part of a group of parents invited to participate. I’ve spoken at autism parent conferences over the years, but this is the first time I’ll be speaking to professionals.
ABAI/Applied Behavior Analysts International Convention poster
Fellow disability families know the value of another family’s experience. When an autism parent asks a question, they can know I’m in their corner as we find an answer or resource. During this panel, we will also show that when professionals and parents work together, we can focus on joy.
To celebrate Autism Acceptance Month, I’m rolling out parts of my talk here on the blog.
You can find more information about the event here, which includes both in-person and online registration.
Enlightenment, then laundry
The Zen Buddhists say that before enlightenment, you chop wood and carry water. Then after enlightenment, you chop wood and carry water. That idea stayed with me as I worked through the laundry following a recent trip to Hawai’i.
Travel doesn’t usually bring me enlightenment, especially on business trips. Yet traveling to Hawai’i seems to. Maybe it’s the big change of scenery (hello there, honeycreepers and humpback whales). Perhaps it’s the challenge of a new or new-ish experience (snorkel in the marine preserve, hike in the rain forest). Or we could credit the big blocks of down time alongside the steady weather, wind, and waves.
When we ride bike, Sam sometimes says, ‘let’s go get some wind.’ The Dutch call it uitwaaien, which literally means ‘blow out.’ Like many vivid words from other languages, uitwaaien has no English translation. The idea is this: head out into nature—preferably windy and along the coast—to get refreshed and clear your mind.
With our hike to Green Sands Beach on a high-winds day, we leaned into the sea spray and wind, coating us with a fine, sparkling olivine sand and turning the six-mile trek into a pilgrimage. Before laundering, my up-cycled denim ruck sack had become a grayish-green. After laundering, it returned to its faded blues.
Papakolea Beach, also known as Green Sands, Hawai’i
Waves can be hypnotic. My mind seeks the pattern, somehow knowing what wave to expect based on the pull beneath my feet. Turtles gnawing on the algae and black crabs running on the lava rocks roll with that wave energy, too. A good day with the waves means sand in my suit. More laundry.
Thanks to all the down time, I finished two books. Both rocketed to the top of the reading list after reading other books on living with disability. They became yin and yang in my head, although that wasn’t part of the initial plan.
Alison Kafer’s Feminist, Queer, Crip is a smart journey through feminist, queer, and crip theories. Her critique pulled in seminal and influential works, boosted by her giant-Venn-diagram view of how these theories inform one another in research and in real life.
David Mas Masumoto’s Secret Harvests is a poetic, lyrical story of finding family history where few writings, photos, or artifacts exist. His aunt became disabled after a childhood brain infection. She did not go with the rest of the family to a Japanese internment camp. Lost and almost invisible to family history, the elders presumed she was dead until Masumoto got a call. He learned that his aunt was in a nursing home nearby. He wove fragments of memory into a new family story, creating meaning that is both deep and breathtaking.
I returned Kafer’s book to the library and filed Masumoto’s on my shelf. I’ve collected all his works since Epitaph for a Peach. I appreciate Kafer’s book for the powerhouse that it is. Another disability author said there is life before you read FQC and then life after FQC. She’s not wrong. We need thinkers like Kafer to make progress in living with disability.
Yet the way Masumoto found and made meaning seemingly from thin air, especially in the larger struggle to understand where we all belong, like a poet does–that feels like enlightenment to me.
Back to the laundry. We will see whether the sun did its work on the dog’s blankets.
Word of the Year
A writing prompt arrived in my in-box a few days ago. It invited wordplay poetry on the Oxford English Dictionary’s Word-of-the-Year, “rage bait.”
I joined the Modesto-Stanislaus Poetry Center several months ago. I didn’t think of myself as a poet. Yet I fell in love with these people and their big thoughts, courageously stepping up to the mic every second Tuesday at the local bookstore. I attended several of their poetry writing workshops over the summer. Now, they are celebrating the New Year’s Poetry Challenge by sending us daily writing prompts. It’s fun, and thought-provoking.
Along with “rage bait,” I threw a few other words-of-the-year into my completely unserious, wordplay poem. I planned to stand by for the next prompt. Except I couldn’t stop thinking about the common thread linking this year’s words: vibe coding (Collins), slop (Merriam-Webster, The Economist), rage bait (OED), parasocial (Cambridge), 6-7 (Dictionary.com). Down deep, each word or phrase means you’re not thinking. The idea of an unthinking connection to other people (parasocial) is just disturbing, and responding to someone with “6-7” feels nihilistic.
We didn’t fight for an unthinking world. We fought for one that gives people options. I worry about parents of young children with autism: they need real, thinking people in their corner. Similarly, my teacher friends worry about their students when they lack hope.
A few folks in our society have had it pretty good. They want the party to go on, and it can if the rest of us go brain dead. Of course, our kids deserve better. We need to equip them to be deep, imaginative thinkers.
Many kids in Modesto play outside with each other. They get themselves to school on bicycle or city bus. They stop at the grocery store on the way home. As a result, I doubt anyone here calls Child Protective Services because they saw a free-range kid in the park. Kids take chances and sometimes do reckless things, but they are working on their imaginative courage. We should acknowledge and support that, even as we redirect them toward smarter things.
Very soon – sooner than we might prefer – the world will be wildly different. That doesn’t mean we’ve doomed today’s children to be the Lost Generation. They have a true opportunity that few generations have: imagining the world they want and re-shaping to make it so.
We are called to help them believe in this huge opportunity. It’s on us to be thinking, and to get others thinking, too. We are raising dragon slayers in a time of dragons.