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.
Early in my career, a fellow writer and sometimes mentor said that he didn’t always know what he thought until he started writing.
That was a freeing thing to hear. The fear of the blank screen vanished. I didn’t have to know exactly what I was writing before I started. I could discover what I was thinking along the way. I could re-write again and again to make it clearer, fixing any flabby thinking and respecting the reader, because what is writing if no one reads it?
We all read to better understand what others are thinking and to adjust our thinking accordingly, writers most especially included.
Which brings me to this morning’s topic, writing to better understand a hella lotta thinking that happened this week, because this week, I quit my job.
Until Tuesday night, I had a good job that has become increasingly rare — a full-time journalist for a family-owned newspaper. The job didn’t pay particularly well, but I enjoyed the work and I was fairly good at it, so it had its own reinforcement loop that didn’t have a lot to do with money (does it ever for a writer?). I felt I was serving the community I love. I’m sure some people thought it was unnecessarily tough love at times, but I hope we can just agree to disagree there. Sorry, Charlies, sometimes the truth is really tough.
So as I climbed the hill that my job was about to die on, I was surprised at my courage to keep going. Then I saw that my feet held because they kept finding the truth. I may not have uncovered everything there was to know, but what I did know to be the truth was this: who and what was important to me might die (not exaggerating) if I didn’t keep going to the logical finish.
It’s not the first time in my life that I leapt knowing in my heart that the net would appear.
To sum up the thought for the day, I grabbed a few of my favorite lines from my upcoming book with co-author Shahla Ala’i (which luxuriously now has my full attention, a good thing because we have to deliver to the publisher in about six weeks), Love and Science in the Treatment of Autism:
Love may be the only thing that is not fragile in our material world. Love makes a great bet. Love gives our lives meaning. With love, we forge through troubles and make progress. Love makes a family. We know we will fail sometimes and that love grows in learning from those failures. Love helps us through periods of being unlovable ourselves, or of not loving others.
We keep choosing love, above all.
This year marks my fourth year of pursuing New Year’s resolutions that are, at once, both big and little.
When I started out, I shared my first goal (not buying anything except food and to fix things, aka “No, Thank You”) with a few close friends and family members. Sharing your goals publicly usually increases your chance for success. For the second year, I straight up wrote a column in the newspaper. Honestly, that felt more like raising the stakes than getting a leg up, but it worked (“Yes, Please” to new experiences and long-held aspirations). This January, I quit Facebook in order to make 2019 the year of being more open and connected.
Over the past 12 months, I found myself being even more deliberate with treasured relationships, traveling a surprising amount in pursuit of that goal. Just like the years of “Yes, Please” and “No, Thank You,” a Facebook-free life can totally be “More Open and Connected” when it’s more deliberate.
This year’s goal is “Wear An Apron.” My son, Michael, and I talked it over on a recent Sunday together. He wanted to know what the big idea was behind the little idea.
I have two kitchen aprons. One I picked up at the farmer’s market in Sacramento because it says “California Grown” on it. The other my mother made for me out of fabric she picked up in Hawaii. They are both awesome and spark joy for me. But I nearly always forget to put them on until after I have already spilled something on myself.
My T-shirt drawer is full of shirts marked by my forgetfulness. I tell myself that they are just T-shirts, but the truth is, I am capable of better.
And that’s the thing about aprons. Some amazing person solved a common problem by inventing the apron. And other smart people figured out designs with pockets and loops and other features to help your apron serve you, whether you are in the wood shop or the kitchen or the printing press.
I told Michael when you think about the apron that way, it reminds you that most problems you experience have been solved by someone already. That wisdom, both small and large, is out there and ready to make life easier or better. It’s something your grandfather discovered long ago or is in a book or on YouTube or just one question away in a conversation with a friend.
Even when Sam was little and it seemed like no one knew anything, the wisdom was out there. I’ll forever be grateful to Kitty O. for showing me how to read articles in scientific journals. New wisdom. Right there.
All you need to do is put on that apron.
As important as dancing is to Sam’s social life, I’m a little surprised that I haven’t blogged much about it before.
Last weekend, Michael and Holly got married. Sam was the usher. He enjoyed dressing the part and hanging with the groomsmen, but I think he looked forward most to the dancing. During the reception, the DJ spun a wide variety for us. We two-stepped and did the mambo to a salsa tune, and more.
The television show, Dancing with the Stars, was Sam’s favorite for the longest time and he would try to do some of the moves when he thought I was out of the room.
I don’t know how I stumbled on the east coast swing dance club in town, but after I did, I planted the seed that he could join and learn more. It took a little while for Sam to warm up to the idea. After he’d gone once or twice, I asked Michael and Holly to go with him once and make sure everything was ok. (It was.) Over time, I’d hear from neighbors, friends and acquaintances about how well he was coming along. He goes at least twice a month, including asking off work for the Friday night dance that includes some extra lessons.
Michael and Holly had a dollar dance over several tunes during the reception last Saturday. Sam queued up twice with ten-spots to dance with Holly. I was ready with the video for the second dance, but as you can see, the kids got silly and they were upstaged a wee bit.
After the DJ’s “last dance” call, they had just one more: Bruno Mars’ Uptown Funk. It’s just about Sam’s favorite tune of all time. The kids all got in a circle and started their dance-off. Sam was second in the ring, and the crowd just lost it when he entered and danced his moves. There is video out there in the wild somewhere, y’all, but I don’t have it. (If it surfaces and I can publish it, it will be here. I’m not sure the official wedding videographer got there in time.)
Let there be dancing.
Peggy (to Sam, dressing for the wedding): Your suit is hanging in the closet.
Teresa: What shoes are you wearing?
Sam and I enjoy going to the movies once a month or so. We are lucky that two theaters with lounge seating are within an easy biking distance, including our newest favorite, Alamo Drafthouse.
Sam’s not a fan of action films, or films with dark themes. That includes super-hero movies, although he took a chance and really enjoyed Spider-man: Into the Spider-verse. (Best. Movie. Ever. But I digress.) We both enjoy a good story well told, which means, for starters, that we don’t miss anything by Pixar.
Recently, we went to see Peanut Butter Falcon. I knew we were taking a chance that story could come up short. Hollywood likes its tropes, and stories that include people with disabilities can be super-tropey. But the star, Zack Gottsagen, has Down syndrome and the movie’s writing and directing team had a clear, deep understanding of self-determination for people with disabilities.
The story resonated with Sam. I watched Rain Man again recently on Netflix, and Sam drifted in and out of the room as it played. Dustin Hoffman was brilliant but he doesn’t have autism – and that matters. After Peanut Butter Falcon, Sam and I talked a lot about the story and the characters. We talked some after Rain Man, but not as much as with Peanut Butter Falcon.
Then I stumbled upon another movie, Keep The Change, which features actors with autism. The story line was authentic. Sam got to see adults with autism fall in love, and I cannot tell you what a gift it is to have that on the screen.
Movies are better when our world is fully reflected on the screen. In other words, a story will come up short if the character with a disability is there primarily to challenge the protagonist’s humanity. Movies, like any media, imprint and reinforce social constructs. I’m rooting for the stories that push our humanity toward justice – and love.
Three years ago, I saw a window into how you raise a hater. It was at, of all places, the movies.
I talked with my daughter, Paige, about it. She was there. She didn’t hear what I did, but she heard something else like it. I shared my experience and insight with Shahla. She encouraged me to blog about it, but the words got stuck. A lot.
When the world is full of haters, it’s not a good place for Sam and people like him, who need us to be our best selves. People are loving and generous for the most part, but I’ve seen the dark side, too. It’s easy to feel noble and loving and generous when it doesn’t really cost you.
After a white boy drove to El Paso in order to shoot innocent people yesterday, the words finally started to flow. We talk about preparing for mass shootings in the newsroom. We know we must. There’s nothing about our community that’s special. The haters are here.
Three years ago, I watched a father teach his son how to be a hater.
Oh, it wasn’t obvious. The boy didn’t even know he was being taught to be a hater. And the father didn’t know he was teaching it, either.
To get passed down, these things have to go slow. A father loves his son and wants to be loved by his son.
A trailer played for Hidden Figures, the movie based the early days of NASA and the first flight to the moon. I sat next to the father in the movie theater. The trailer made him uncomfortable. In between stunning images of rockets blasting through space, hints of the little-told story about the pivotal role that black women played in the program unfolded. He could bear it no longer. He leaned over to his son, who was probably 8 or 9 years old, and said, “We won’t be seeing that.”
I knew why he was uncomfortable. But his son didn’t. After all the previews played, the father said, “There are lots of good movies to see.” And the son added, “But not that space movie.”
A boy loves his father and wants to be loved by his father.
We were all there to watch Moana. Did the father not know what this Polynesian legend was about? Apparently not, Paige said, because after the movie he kept asking his wife: but where did they come from?
The father had too much discomfort. A family has to find a place for the discomfort when father is afraid. The needs of the one outweigh the needs of the many. To get passed down, these things have to go slow.
Our kids will do things, learn things, seek things that make us uncomfortable. We have to let them. They will still love us. They are becoming their own. They want, and can, do like we did when we were young, and make the world a little better than it was before. If we don’t let them, they won’t be resilient enough to survive all these changes. They will become a snowflake.
It’s been ten days since we’ve seen our cat, Tiger, although I knew the first morning when I opened the back door and he didn’t show that he was gone for good.
Tiger came to live with us as an outdoor cat. He was one of several kittens that a co-worker’s wife found in a box on the side of the road fifteen years ago. We were living on the farm at the time and had been having trouble keeping cats, as often happens out in the countryside. But Paige was 10 years old and pining for a cat, so we picked the male orange tabby kitten for good luck.
Tiger proved to be a survivor. Even as coyotes, owls and other predators exacted their toll on our farm, Tiger knew when to hold ’em and when to fold ’em. When it was time to move into town, I was apprehensive. He’d lived on the farm for more than a decade. I got advice from other cat owners and the veterinarian. On moving day, I was ready with drugs and a crate, but as soon as the moving vans showed up in the driveway, Tiger, ever the survivor, hid out. Two days later, he got hungry enough for the new owner to catch him in the house and call me.
During the transition, he fought against the drugs so it was like having a drunk college student lumbering around the house as we unpacked boxes and filled cupboards and closets and bookshelves. After a week of supervised outdoor time, he started fighting the whole cat-on-a-leash thing. I opened the door and said, “good luck little buddy.” I don’t know what I was worried about. He was a survivor and he knew where he lived. That’s where his food dish is!
Now that he’s gone, I feel the loss, as I knew I would, even though I’ve also known I won’t get any more cats. I’m a dog person. I have been since I was a girl, obsessed with learning all the breeds of dogs and reading stories about dogs and pining for a dog myself.
While our dogs have reminded me of the rewards of loving unconditionally, I have to give props to Tiger, whose utter cat-ness provided insight into life’s more complicated doings and feelings.
He brilliantly established his personal space. Pet him just a stroke or two when he wasn’t feeling it and he bit your hand or arm or leg or foot to let you know. Even when he was willing to sit for a little cuddle time, you still got bit at the end.
He ate ritualistically: every half hour or so, he returned to the bowl to eat several bites. Ergo, we learned to always pause for a moment when we opened the door to let him in (or out) and forever keep kibble in the bowl.
He often joined the dog and I on the first block of a walk. Then he decided either we weren’t worth the effort or going into the wrong territory and he went off on his own.
When Paige went off to college, the cat expressed how distressing the empty nest was by peeing all over the pricey feather bed I bought to deal with a too-hard mattress. I didn’t even try to recover anything. The feather bed got tossed in the trash. I still sleep on that too-hard bed.
Farewell, old friend. We’re glad you came to stay.
Another year of equestrian Special Olympics has come and gone. Sam had an off year this year, I think in part because the regional competition had to be canceled for bad weather. He and his teammates missed some of the momentum needed in competition.
Sam remained a sportsman through the disappointments. I almost thought he wasn’t feeling it – until it was time to head back home. He was sad to leave, saying that we always have fun but the competition wasn’t what he’d hoped for. Then he added that maybe next year he would only do drill.
Sam’s been branching out as a horseman this year. For many years, he only rode English. A few years ago, he added Western events. That opened the door to barrel racing, which is a barrel of fun. This year, he added carriage driving and drill.
Sam picked out the drill music first, which brings its own kind of joy for him. He and Mal, his riding coach and drill partner, did well on their short routine, especially considering how little time they had to practice. Since no one else had a routine with such challenging moves, they were competing against themselves at state Special O. They got gold.
I understood what Sam was saying. He wanted to race alone.
There’s a moving passage in architect Nader Khalili’s memoir, Racing Alone, where he explains his internal transformation, leaving a successful practice as a high-rise architect to develop prototypes for sustainable earth architecture.
Khalili tells the story of watching his son play with his friends. They have a foot race and his son, who is smaller than the other boys, falls behind and loses. Crying, the boy tells his father that he only wants to race alone. Khalili takes his son to a quiet track and watches him, full of joy, run and run.
Our children can be such magical teachers.