Posts by Peggy
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.)
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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.
Overheard in the Wolfe House #331
Peggy: When you evaluate that way–stopping software updates at the level before AI–I respect that.
Sam: That technology is sci-fi. It belongs when they can teleport and travel at lightspeed.
Talk to yourself, and tap the ‘wisdom of the inner crowd’
Some years ago, I took a call at my desk in the newsroom from a woman with a news tip. The details of the tip escape me now, but her explanation stayed. She wanted us to understand why she was calling, because the situation suggested she’d been living a lie and she was making big changes. She told me that she had a growing interior life and she asked, didn’t we all? Yet her husband could not grasp the concept.
Although she made no reference to Christianity when we talked, this concept of an interior life has roots there. The idea is to have an ongoing conversation with God. By focusing on a friendly, internal exchange with your Creator, you can transform your actions into good works. The faithful call it “prayer.”
If you think about that for a minute, the word prayer can provide a powerful cover to these internal dialogues, especially when spoken aloud. (As does reading and writing, for that matter.) We need that cover because society tends to scorn (or worse) people who talk to themselves.
Now, science has discovered that it may be objectively helpful to talk to yourself. In the Wolfe house, we’ve tolerated thinking out loud. Over the years, we’ve learned to tolerate a range of human behaviors that we didn’t understand at first. Autism has often revealed our ignorance of behavior that is actually beneficial. So, we made room for the possibility that having conversations with yourself could be beneficial. To be sure, these internal-but-out-loud dialogues occur out of earshot of each other, although I still tend to direct my commentary to the dog, as long as I’m not confusing him.
The idea is that there could be wisdom in your “inner crowd.” There’s plenty of research into the wisdom of actual crowds. That research shows that when compiling diverse and independent opinions, they tend to average out, minimizing mistakes and revealing the truth. So, it doesn’t quite make sense that talking to yourself is going to expand your knowledge or change the internal biases that lead to mistakes.
However, some recent studies found that people can get closer to a good answer when they take another’s perspective. Researchers asked participants a factual question (such as the size or count of a thing), asking first for their own answer and then for an answer of someone who would disagree with them. In another study, researchers had participants outfitted for a virtual reality experience, one that contained an avatar of themselves and another Freud-looking avatar. The researchers prompted the participants to voice both avatars in a problem-solving conversation. They discovered that people were able to give themselves good advice.
The outcome reminded me of the power of social stories when Sam was a kid. The stories spelled out the social cues he otherwise missed. He always knew what the “answer” was. In other words, this idea may not be grounded in the principle of crowd-sourcing information at all. I think the idea is to create space. Talk out loud and you give yourself room to think and for all that inner wisdom to break through.
Here’s a couple resources to get you started talking to yourself:
Alter, Adam. (2023) Anatomy of a Breakthrough: How to Get Unstuck When it Matters Most. New York: Simon and Schuster.
https://behavioralscientist.org/tap-into-the-wisdom-of-your-inner-crowd/
https://pmc.ncbi.nlm.nih.gov/articles/PMC9984468/pdf/41598_2023_Article_30599.pdf
Blame the mother 2.0
Decades of science have helped us better understand autism and meet autistic individuals where they are. But a few weeks ago, the White House looked at all that human progress and apparently decided to make everyone look away while they attempt to put the toothpaste back in the tube. If it was unclear to you whether to be distracted by acetaminophen or childhood vaccines, that was on purpose. Their aim was getting autism back in the headlines for a fresh round of mom-shaming.
Many autism advocates caught on immediately, and some news outlets, such as The 19th News (Sept. 30, “MAHA frames autism around mother blaming”), are starting to catch up. But as we know, the lies can get pretty far ahead while the truth-tellers are still lacing up their running shoes. We also have been conditioned to believe that mothers can be dangerous to their children’s health. It’s easy imagine, then, that Refrigerator Mother 2.0 may find renewed traction, rolling back the progress we’ve made for autistic individuals and society at large.
The “refrigerator mother” theory dates from 1943, when Leo Kanner wrote his landmark paper on autism. He claimed a lack of maternal warmth created the condition and said that autistic children “were left neatly in refrigerators which did not defrost.” A few years later, Time magazine brought the concept to the masses.
The theory stuck for decades, in part because genetic scientists and other researchers—the truth-tellers—were still putting on their shoes. It’s human nature to blame others when our troubles feel intractable. And blaming mothers has been a long-running cultural tactic. Law professor Linda Fentiman’s recent book, Blaming Mothers: American Law and the Risks to Children’s Health, shows how our supposedly neutral laws actually treat mothers (and those who are pregnant) as risk vectors. Take it from a worn-out mother who’s been blamed plenty for her son’s autism over the decades: shiny new wrappers don’t hide this destructive pattern of human behavior.
However, in the last 40 years, scientists have also given us a stunning amount of knowledge. They are starting to untangle what we need to know about our genes and the environment in relation to autism. More importantly, they are creating the space for autistic individuals to learn and for the rest of us to understand how best to respond. Autism has physical and biological attributes, but the way we respond reveals our social constructs and the way that often limits the options for everyone. Ramps can improve everyone’s mobility. Movies with captions help viewer’s comprehension. Audio cues make busy intersections more comprehensible to us all.
Families love their children, so it’s safe to say that they want to meet their responsibility to raise their autistic child as best they can. Those of us that know and understand science, including the science of autism, may well be inoculated against mother-blaming. We owe it to our children, and their children, and our communities to resist the rollout of Refrigerator Mother 2.0 and instead share the scientific understandings that have improved our quality of life.