Only a few generations ago, some doctors blamed mothers for their children’s autism. Psychologists wrote long theoretical papers based on their observations of mothers and their children. They concluded that autism mothers were cold and that their lack of love triggered the child’s autism.
If you stop to think about that idea for a minute, those explanations were quite a leap. And a cruel one at that.
We humans look for patterns in the world around us–it’s almost one of our super-powers. We use the information to make meaning, and create loops of ferocious thinking that make the world around us a little better.
Therefore, knowing that we’re supposed to make things better, the Refrigerator Mother explanation for autism just begs the question. How much did those early theoreticians consider and—most importantly, rule out—before concluding they’d observed a pattern of mothers who don’t love their children?
Granted, many people were immediately skeptical of these mother-blaming theories, including other professionals and autism families. The theories fell after a generation, but the damage was done to the families forced to live under that cloud as they raised their children.
And, the blame game is still out there.
The latest iteration has started in a similar way, with people seeing problematic patterns in autism treatment. Young adults with autism are finding their way in the world. Some of them had good support growing up, but the world isn’t ready for them. Some of them had inadequate support growing up, so they have an added burden as they make their way in a world that isn’t ready for them either. Some are speaking up not just about the world’s unreadiness but also about that burden. We must listen. Autistic voices can help us find new patterns and new meaning and build a better world for all of us.
We should be careful about letting one person’s experience and voice serve as the representation for the whole, because that’s how the blame game begins. Even back in the old days, when information was scarce, we had the memoirs of Temple Grandin, Sean Barron, and Donna Williams to show us how different the experiences can be. As Dr. Stephen Shore once said, if you’ve met one person with autism, then you’ve met one person with autism.
Here’s an example of how that can break down: some now argue that asking an autistic child to make eye contact, as a part of treatment service, is inherently abusive because eye contact feels bad for them. Missing from that argument is the basic context, the understanding that for humans to survive, we need to connect to one another. For most of us, eye contact is the fundamental way we begin to connect, from the very first time we hold and look at our new baby and our baby looks back at us.
I asked Sam recently (and for the first time) whether making eye contact is hard or painful for him. I told him I was especially curious now that eye contact changed for all of us after living behind face masks for a year. He said this, “Eye contact is very powerful. I wonder whether I make other people uncomfortable with eye contact.”
He’s right. It is powerful. And he just illustrated the point about one person’s perspective.
When Sam was young, we never forced him to look at us. But after a speech therapist suggested using sign language to boost his early communication, I found the sign for “pay attention” often helped us connect.
The additional movement of hands to face usually sparked him to turn his head or approach me or Mark in some way, so we were fairly sure we had his attention and that was enough to proceed with whatever was next. Over the years, we’ve shared eye contact in lots of conversations and tasks. But if not, we recognized the other ways that we were connecting and I didn’t worry about it.
All of this context—both the need to survive and the difficulty with a basic skill needed for that survival—cannot go missing from any conversation about the value of teaching an autistic child. Some people with autism do learn how to make eye contact early on and are fine with it. Some don’t. For this example, then, we can listen carefully to adults with autism and their advocates as they flag patterns from their bad experiences with learning to make eye contact and make changes. But that fundamental need to connect and share attention remains.
That’s when we also need to remember our tendency to blame others when our troubles feel intractable. Sometimes, in these fresh arguments over how autism treatment should proceed, I hear that same, tired pattern of blame I’ve heard since Sam was born. Take it from a worn-out mother who’s been blamed plenty over the years: some arguments are just another round of the same, they just come inside an elaborate wrapper of mother’s-helper blaming instead.
All the families I know truly love their children and are learning how best to respond to them. We can’t forget that parents have a responsibility to raise their child as best they can. Let’s talk, please. But please also, let’s spare the rollout of Refrigerator Mother 2.0, because it could cost us a generation of progress.
Our extended family has been checking in with one another as we get vaccinated. We are scattered across several states, each with differing priorities and abilities to deliver the vaccine. Still, we cheer each other’s progress as we all approach the finish line.
Texas ignored essential and frontline workers in making its priorities, emphasizing shots for nursing home residents and seniors instead. Texas also got behind other states in getting shots in arms (color me not surprised). As fears rose with the fourth wave of new infections full of variants, I worried that Sam would get sick before Texas got around to vaccinating his age group.
For a while, our best hope seemed that our county was doing a good job in spite of it all. Both Dallas County (with millions of residents) and Denton County (with less than a million) have been holding mass vaccination events and both celebrated the 250,000 mark this week.
As soon as Denton County opened its vaccination list to all adults, I signed Sam up. He was at work when I did. I knew he wanted to take care of it himself, but I told him if we’d waited, even just those few hours for him to get home from work, who knows how many thousands would have gotten in line ahead of him?
The strategy seems to have worked. Sam’s appointment came the first day of the first week for the new cohort—all Texas adults. After he got his appointment, he took the unusual step of group texting his siblings and his aunties with the news. He got the high fives, but his brother and one of his aunties also reminded him that it was a shot and he would feel it.
He needed to talk about that. Sam has been accustomed to the extra steps the nurses at his regular doctor’s office take for inoculations, including applying a topical anesthesia to take the edge off. Knowing that wouldn’t happen at a mass vaccination event made him nervous. I reminded him that his brother and aunt were being very loving by telling him the truth about what to expect.
I did my best to continue the truth-telling by answering his other questions about what to expect since mass vaccinations are different. He asked me to drive him. He said he didn’t think he could manage his anxiety and drive, too. (He is not alone in that. I’ve volunteered at the speedway a few times and have seen plenty of folks shore each other up that way.)
When the moment came and the medical reserve volunteer opened the car door to administer the vaccine, he noticed Sam’s anxiety. We acknowledged it—it was the truth, after all—and he immediately shifted gears to help ease the way for Sam. The volunteer may not have had topical anesthesia, but his care had the same effect. Once inoculated, Sam said he was surprised how easy it was. The volunteer laughed and told him that applying the bandaid was the biggest part of the job. Then they both laughed.
I learned early on that it’s always better to tell Sam the truth. First of all, any child will stop trusting you if you say things like “shots don’t hurt” when you know perfectly well that they do. In addition, when Sam was little, he needed us to bridge him to the rest of the world. We couldn’t afford to be wiggly, amusement park rope bridges. Also, he doesn’t know what to do with white lies or half-truths. (Heck, they used to confuse me, too, but Sam also taught me that if you take people at their word instead of playing along, it’s their turn to be confused.)
Sam has his best shot at identifying and asking for what he needs when we tell the microscopic truth. Don’t we all?
I asked him whether he still wanted me to drive him for his second shot. Yes, please, he said.
Save the warnings by the National Weather Service, our household would not have been prepared for the freezing weather and massive power and water losses Texas suffered last week. From late Sunday night through Thursday afternoon, we endured rolling blackouts as two separate winter storms came through North Texas. Unlike many Texans, we didn’t lose our household plumbing in the cold, but our city’s system lost water pressure and we were without safe drinking water from Wednesday afternoon through Saturday morning. We also had no home internet service for most of the week.
As the meteorologists gave their forecasts, the conditions looked to me much worse than they did in 2011, the last time we had a day of rolling blackouts. Since that debacle, I’d read Ted Koppel’s book “Lights Out,” a sobering assessment of life after a catastrophic grid failure. Sam has friends who eventually gave up on living in Puerto Rico post-Maria. I recognized the incredible risk embedded in that forecast. We prepared like a hurricane was coming, with extra food, water (including filling the bathtub), and other provisions. We sheltered our plumbing as best we could.
If we had been waiting for cues from state or local public officials, we would not have prepared.
Once the crisis began, it was hard to explain to Sam what was happening. We had little official information to go on. For example, I couldn’t tell him when we might be able to depend on having power again, because no one was saying. I showed him the homepage for the state’s power grid, which has a good visual for what’s happening at the moment. On the outage days, there were bizarre spikes in future capacity, as if ERCOT expected four or five generation facilities to come back online at any moment.
Of course that wasn’t what happened. During the second day of rolling blackouts, we would get a phone call once or twice a day from the city utility, telling us to expect rolling blackouts for the day or night. But those calls said nothing about the grid status or when power would return.
After meteorologists called for warming on Saturday, we made contingency plans to get through to that day. I warned Sam that the power might be unreliable for days or weeks afterward. Power companies had rotated the power off in some places and couldn’t rotate it back on. That could mean the grid is damaged in places, I told him.
Also, when the blackouts started, I couldn’t tell him when the power would be on or off. There was no discernible pattern and we weren’t told. After about 24 hours, the city’s robocalls suggested a basic pattern, although we predicted it more closely using our oven clock as a reverse timer. We also observed street lighting changes as a predictor when we’d be shut off. If it was particularly quiet, Sam could hear the power coming back before the lights went back on. As a result, we could plan for things we needed to do to survive, like prepare food or charge our phones.
But that adaptive mode was ours to determine, and sometimes I had to coach Sam through it. Nothing was ever suggested to us by a public official how to cope with rolling outages, or how cold your home could get before it became too dangerous to sleep there, and the like.
When the city’s water system failed, our city made daily phone calls with recorded messages. They told us when the system was failing and how to help, then they told us when it failed, then they told us how recovery was going, and finally they told us when it was safe to drink again. That communication helped.
Sam does well with most of what adult life throws at him, but one of the few things he still struggles with is “official” communication.
Frankly, we all do better when public officials communicate with us in plain language. That is one reason why the federal government adopted the Plain Writing Act of 2010. I recognize the writing style when I get a letter from the IRS or the Social Security office. They always write in plain language so that even when your situation or the law around it is complicated, they use vocabulary and syntax you can understand so you can act accordingly.
For people with autism, such plain language communication is vital. Sam would likely have suffered greatly in last week’s outage without someone with him to translate what little information we were getting and work to fill in all the voids. ERCOT wrote arcane tweets about load-shedding, for example, and asked people not to run their washing machines. Still shaking my head about that.
We’re both still recovering from the trauma of last week. The trauma was made far, far worse by the lack of communication from state officials. As they set up their circular firing squads in Austin this week, we are learning that they knew this problem was coming and they knew it was a problem of their making. I’m sure individuals were panicking and that made it difficult to make good choices, but that’s why, in calmer moments, they are supposed to write and practice emergency plans. This was foreseeable and preventable. However, in my darkest moments, I sense that the lack of communication was a choice, one they made in part to avoid blame.
This week, I’ve also been stunned by how many people stung by this abject failure expect it to happen again. They simply do not expect our state to be able to fix this mess.
I want to reject that premise, but, mercy me, if it happens again, can they at least have the decency to communicate to us, and in Plain Language?
Sam (inputting complicated equation for calculus lesson): Oh, poor Mathway!
Sam: It had to do a line break.
Sam didn’t learn calculus in high school and has decided, now that he’s in his 30s, that this deficit in his education must be remedied – not just for him, but for me, too.
I was a bit of a math whiz in junior high and high school, and while I didn’t get much calculus instruction either, I was somehow destined to review algebra, geometry, and trig lessons at least once a decade as the kids grew up and as Sam struggled with advanced algebra classes in junior college. To share in Sam’s enthusiasm for this new endeavor, I picked up Steven Strogatz’s book, Infinite Powers. It’s a persuasive little tome about the secrets of the universe and the author has nearly convinced me that God speaks in calculus. (And, perhaps that is why we have a hard time understanding Him.)
Sam doesn’t need all that. He just wants to master the principles and formulas (Hello, Kahn Academy) to break free of the limits he feels in his amateur music and sound studio, acquiring the demigod ability to manipulate the sound waves his computer produces.
Sam and I have been chipping away at this calculus thing for several weeks, beginning with a thorough review of the fundamentals. We know you can’t do the fancy moves until you’ve got the basic blocking and tackling down cold.
Through this journey, I’ve watched Sam learn a lot when we make mistakes. Kahn Academy tutorials ring a little bell and throw confetti every time you get an answer right. We don’t stop and think about how we nailed it. However, get the answer wrong and we are motivated to go back to find the missteps. Somehow, examining that failure locks in the learning just a little deeper.
Some writers and thinkers dismiss the fandom that failure gets in the business community. (Failing Forward! How to Fail like a Boss!) They are right: platitudes can’t turn failing into big money and success. That whole ready-shoot-aim philosophy just gets you muscle memory for ready-shoot-aim, in my experience. Examining your choices and, importantly, your knowledge deficits before making changes is what gets you back on the path of progress.
When I was in graduate school at the Eastman School of Music, some of us sat for a short, informative lecture from brain researchers at the Strong Memorial Hospital (both the school and the hospital are part of the University of Rochester). They showed us how the brain looks for motor patterns in the things that we do (walking, for example) and then files those patterns with the brain stem once established. It makes our learning and doing more efficient. But, of course, for practicing musicians, that tendency is a terrifying prospect. Practice a music passage wrong often enough and your non-judgmental brain says, “Aha! Pattern!” and files it away for safekeeping. The last thing you want is for that incorrect pattern to trot itself out when you are stressing. That’s how mistakes happen in a big performance. And they do. All. The. Time.
Sam and I are doing our best to go slowly and learn how to work the principles and formulas right the first time, or at least going back to retrace our steps when we trip up so we walk it through correctly on the second pass.
We’re learning calculus, the secret of the universe.
One of Sam’s first speech therapists missed many scheduled home sessions. Early childhood programs usually begin in the home for toddlers who need services like Sam did. By the time I thought I should complain about her absences, however, Sam was “aging out” of the program. Once a child reaches 3 years old, education officials offer preschool along with speech and other services. Preschool offers a far richer environment to learn much more and much faster — as long as your child is ready to learn that way. Sam went to preschool where another speech therapist was assigned to work with him. She kept her schedule.
I’ve been thinking a lot about our family’s first autism experiences as Shahla and I put the finishing touches on our book. Given what could have been for our family 30 years ago, I feel really lucky.
It’s odd to call it lucky that Sam missed so many of his first speech therapy sessions. I didn’t consider it lucky back then. Sam had just been diagnosed. There was a lot of work to do. The therapist wasn’t doing her part of the work.
Yet, when she did keep her appointments, they were powerful. She took time to explain to me what she was doing as she worked with Sam. She wanted me to understand and keep things going when she wasn’t around. Since she missed so many of her appointments, I pivoted toward that goal pretty fast. (Honestly, I think she was battling depression.) I wasn’t a trained speech therapist. But I was soon thinking about Sam’s speech development all the time and responding to him in those thousand little moments you have every day with your child.
It took a while to see how lucky that was.
Sam was in primary school when I met Shahla. Shahla also helped with his progress, but that, too, took a while for me to see. There was still a lot of work to do and I was always trying to line up help. Shahla and I would chat occasionally about how things were going. I would share a story of some happening, often whatever was vexing us at the time and she would explain what was going on behind the curtain. Those little conversations were actually a deep dive for me. I understood better what was happening with Sam and where to go next — just as his wayward speech therapist was trying to show us.
We were learning to work smarter, not just harder, of course. But there was something else.
Sam couldn’t be forced or coerced — not that we wanted to work that way. Like many children with autism, in my opinion, the ways that he protected himself from the outside world were effective and strong. Still, we made progress. His best outcomes came after we approached things in a straightforward way with his full participation. The better we got at being deliberate, respectful, and intentional, the more momentum we created.
Even though Sam is a grown-ass man, we still seize the small moments to make a difference. I’ve been working at home for a while now, and that’s come with more opportunities for those small moments. With Mark gone and both Sam and I working full-time for the past decade, we didn’t have many. These days, we can chat over breakfast or lunch (or both) before Sam heads to work. Like every young adult, Sam sometimes turns his adult mind back to childhood experiences and tries to make sense of them. I’m glad to be here as he puzzles through all that. I’d like to think he’s puzzling through more because of these opportunities.
These days, he’s also been thinking a lot about why alarm bells bothered him so much when he was in elementary school. I told him he wasn’t alone, that no one likes that sound. That was a revelation to him, since apparently the rest of us hide that aversion so well. But he’s really wrestling with this, breaking things down into the science of sound, analyzing sound waves, and figuring how to manipulate them. He wants to make his own science to help others who hate alarm bells as much as he did. Who knows? Maybe he’s got something like Temple Grandin’s squeeze machine going in his sound lab back there, ready to banish those anxiety-making monsters once and for all.
Happy progress, indeed.
I finally moved my personal things out of my old office space, thanks to the help of a co-worker who also had to listen to me prattle on about things like how many piano makers there were before and after the Great Depression and why that might mean something to journalism now.
I have a century-old, upright grand piano. My parents got it for me when I was first learning to play. It has a big sound, especially after I had it rebuilt about ten years ago. The man who rebuilt it told me that before the Great Depression there were more than 400 piano makers in the United States. After the Great Depression, there were just two.
That seemed a stunning loss to me. Many people love music and enjoy playing, even if just for themselves. Pianos are among a handful of instruments that play both melody and harmony. However, our attention is never guaranteed, and our money usually follows wherever our attention goes.
That same drifting attention is happening to the news business now. Businesses needed your attention, so they got it by putting their advertisements next to news. Newspapers were among the original public-private partnerships. The better quality the news — a real public service at that point — the more valuable that space got. That is, until our attention started to drift.
One of the Denton newspaper’s most popular reports was the police blotter, at least before the pandemic began. It had long been a guilty pleasure for readers. Of course, now they can find even more guilty reading pleasures on Facebook, a company only too happy to hoover up the advertising revenue as people’s attention drifts over there. Probably in another year or two, there will be only a handful of news outlets left because the business model that extracted value out of our attention has changed so much.
Some people have finally figured that out, that the business model now is for people who recognize they need solid journalism to make sound business decisions and to make good public policy decisions.
Without that, we will soon have warlords squabbling for years while ticking time bombs sit in our harbors.
I’m ready to stop thinking about the business model and start thinking about the community of practice — journalists are a group of people concerned about the quality of information, how it’s gathered and vetted, and how to do it better, and the best way to do that is by debating all those values regularly among your peers — and then publishing or broadcasting.
This community of practice in journalism is also the same thing that people like to criticize as “the priesthood” or the “legacy elite” or “media bubble” or whatever other pejorative they want to hurl at the wall that might stick for the moment. But humans create communities of practice because they care about what they do and want to do it better, and scholars are beginning to recognize how much this phenomenon has helped all kinds of businesses do better and make progress in our modern world.
My first introduction to communities of practice came in the autism world, with parents sharing wisdom and such. Eventually, parents started seeing that the best therapists with the most powerful ideas kind of hung out together and fed off each other’s practice and research. No one was talking to you about a “community of practice,” but if you wanted the best for your child, you always wanted to be close to that, since chances were higher that your kid would benefit from all that supercharged brainpower and skill.
I encouraged Michael and Paige to find the equivalent as they ventured out into the working world, although I didn’t have the vocabulary for it at the time. At the University of Iowa, they organized the dorm into micro-communities that way and Paige fell right in. She’s still friends with many of her original writing community. Michael got a power introduction to the concept as a behavior tech in the autism world. He’s like a heat-seeking missile for that value where he works.
Journalists sometimes compete with each other, but we benefit from each other’s successes and critical takes on each other’s work. The successful business model(s) will depend on the rigor within our community of practice. As business models disappear and fail, that doesn’t mean the community of practice must also, but it makes it a lot harder. Until the emerging business models stabilize, our environment is ripe for propaganda disguised as news. But if our community of practice disappears, no business model will save it.
Just like the piano makers.
Peggy: So, how did the haircut work out yesterday? Do you need me to trim the sides a little more?
Sam: Nah. There was one spot, but I cut it and I think it’s ok now.
Peggy: You did? That’s great that you could do that. (pause) I’m not a professional.
Sam: Well, I’m ten times worse than you.
Peggy (laughing): That’s haircutting in a pandemic.
Young parents recognize when the kids start to absorb information from the world around them and (we hope) act accordingly. Kids are watching and listening and thinking and so you’ve got to take a little more care with the grown-up stuff.
We’ve got to let the rope out eventually, since the kids need to fly on their own. But we might not want to be the scary one with all that grown up stuff, because life’s pretty scary on its own.
The ability to absorb from the environment didn’t work the same way for Sam as it did for his brother and sister. As a child with autism, his attention could be hyper-focused or super-zoned out. When he was a toddler, we were never quite sure how much he absorbed from what was going on around him. But over the years, we coached and cued. We became more confident he was seeing what he needed to as he grew up and responded.
(For example, we worried at first that he didn’t understand traffic and would never watch for cars. Eventually, he proved he could and would learn to drive.)
I’m not sure what helped him recognize that important things he needs to know come in small, even sneaky ways. Over the past year or so, I’ve watched him notice small things going on around him far more than he used to. He’ll pick up the newspaper from the table and read a bit because the headline grabbed his attention. He might make a comment about the story over breakfast.
He’s learned when to ignore email and when not, which really a miraculous thing when you think about it. He still doesn’t like opening his snail mail (to be truthful, I don’t either, so what is with that?) but when he sees the envelopes that matter, he doesn’t truly ignore them. He knows what’s inside and opens them when it’s time to pay the bill or renew the tags, etc.
A few days ago, he saw a flier advertising a Social Security workshop in the pile of mail. He asked a lot of questions. He’s still healing from the stress of repaying a substantial amount of benefits last year. We knew when he got his full-time job at the warehouse that his benefits could finally end. We happily went down to the Social Security office and gave them notice, but it took months for them to stop sending checks. I cautioned Sam to sock that money away — they would eventually ask for it back. They did, and he was ready, but it was still really stressful for him.
He thought perhaps the flier came from Social Security and he needed to attend. I’m not sure if there’s a rule of thumb to help him wade through that type of information. I’ll think about it. But in the meantime, I told him, ‘nah, that flier was for me because I’m getting old.’
Some dreams aren’t nightmares, but they leave you feeling unsettled in the morning. For me, the best remedy is to get them out of my head and move on. Recently, we discovered that works for Sam, too.
Like his mother, Sam is not really a morning person, although I’m not sure what a morning person is. We both feel fine when we’ve had enough sleep. However, we don’t feel like we’ve had enough sleep if we have to wake up before first light, even when we go to bed early.
Sam rarely talks about his dreams, unless they are nightmares. But he struggled and complained about that “morning funk” this fall, so a few weeks back, I asked him if he’d had a bad dream and what it was about.
He said it wasn’t really a bad dream, but he didn’t like it. He dreamt he was driving and that, in his dream, when it came time to stop, he somehow wasn’t able to move his foot from the gas pedal to the brake. He worried it could happen in real life.
I didn’t want to tell him it would never happen, because it’s important to tell the people you love the truth. And the truth is, just before a wreck, you are keenly aware how fast things are happening in front of you and how your car isn’t doing what you wish it would.
So I told him I had my own version of that dream, a recurring one. In my dream I am riding in the back seat of a car, careening somewhere fast, when I look up and realize that no one is driving. From the back seat, I struggle first to get my hands on the steering wheel, and then try to get up front to get to the pedals, but I never seem to make it.
Sam laughed and said my dream was really funny. I told him that the reason my dream was funny was because it was both relatable and ridiculous. I asked him if it made him think about his dream differently, and he said, yes, it made his dream kind of funny, too.
Then I asked whether he thought the dreams could be a metaphor for something.
And this is where I am so very, very grateful for Sally Fogarty and the other teachers who were on Sam’s special education team when he was in middle and high school. Sally announced at one of the annual planning meetings that Sam’s speech had come along enough that he would pass the usual tests meant to detect deficiencies. But, she added, we all knew that Sam’s language skills still needed work. She suggested that she administer another diagnostic test and develop a plan that would help him with more abstract language skills–analogies, idioms, metaphors and the like.
A few years later, Sam and I happened to be driving into Fort Worth and a billboard in Spanish caught our eyes. I read the billboard and understood the words, but I didn’t understand what the billboard was saying. I asked Sam, who was also studying Spanish, if he understood the billboard, because I couldn’t. And he said, “Well, that’s because it’s an idiom.” And then he told me what it meant. That was 15 years ago, and it still makes me tear up.
Sam agreed dream driving could just be the general way we feel about how our life is going, and maybe we don’t need to worry that we can’t always steer, and honestly, we don’t want to stop.