Ron Fournier, whose son Tyler has autism, is compiling stories and reflections from readers on the spectrum and from their loved ones. Reach out to Ron here with your own experiences. And be on the lookout for his new book, Love That Boy.
Here’s another powerful story for our ongoing series. This reader asked to remain anonymous “because most people who know me in my adult life don’t know about my diagnosis”:
I’ve been following The Atlantic’s coverage of women on the autism spectrum. There’s a particular problem, as you all rightly point out, for autistic women/girls because there is not enough research in the area. Because of this, it is very hard for people like me to find information about ourselves, and it is both jolting and relieving for me to find descriptions that mirror my own experiences with autism (or Asperger’s, as I was originally diagnosed).
That was particularly the case when I read Wildhood’s recent article about “looking autistic” and the trouble with passing. She covered a lot of the feelings that I’ve had when somebody denies my autism (I don’t really tell people about it anymore, because those interactions are too hard and, actually, shaming).
I’d like to talk a little bit about why it’s problematic to try to make an autistic person “normal.”
I’m somewhat unusual for an autistic woman in that I received my diagnosis fairly early (late elementary school), but I’m very typical in that my outward symptoms lessened over time, thanks in large part to therapy and work done by my parents. These efforts to make me seem “normal” have been so successful that in the rare instance that I disclose my diagnosis to somebody, they often deny that I could possibly have autism*, or tell me that mine is clearly so mild I don't actually have a disability.
This probably looks like success: I can pass for normal. For a while in my late teens, I convinced myself that I was normal. Despite this, the older I’ve gotten, the more I’ve realized that this isn’t the case, and the more I’ve realized that the outward veneer of “normalcy” hides an interior that is still impaired, in some ways quite significantly.
To speak just a little bit about this: I’ve realized that I still process most social interaction through the logical part of my brain. I’m extremely intelligent and so I’m usually quite capable of logic-ing through basic social interactions, and much of my interactions are based on me consciously developing strategies for interaction. I make up much of the rest through training that I had in therapy. I know to paste on a smile and say “fine thanks, how are you?” when somebody asks how I’m doing, because I practiced that in a therapist’s office.
But I also have trouble around the edges, which I assume the people around me are more or less aware of, and that I seem far less normal the more people know me. I have particular trouble making sense of when to say “thank you,” for example, outside of very particular situations I’ve practiced for. I tend to over-disclose personal information too early in new friendships, something that I try to keep a tight lid on. I still have a great deal of trouble with “mind-blindness” [a cognitive disorder where an individual is unable to attribute mental states to the self and others]. I often have trouble evaluating what other people are thinking/feeling, especially in reaction to me, and this causes me a huge amount of anxiety.
All of this requires mental energy expenditures far above what most neurotypical people must make to carry on basic conversations. I’m constantly filled with anxiety when interacting with new people, and I’ve struggled to form deep friendships as an adult.
The other issue, which I’m still struggling to come to terms with, is that I have some of the more major issues that come with autism, and when they come out, other people have no idea what’s going on. I have trouble with executive function. I have autistic meltdowns when I’m overtaxed (something that has happened very rarely outside of my own home, but the threat of a public meltdown is incredibly worrisome for me). I have issues going into new situations, I am resistant to change, I constantly suppress stimming (self-soothing repetitive motions), I often can’t read humor, I have trouble regulating my tone of voice, etc.
Because I’ve been molded into normalcy on the outside, the idea that I have special needs and that I can’t always control the results if those needs aren’t met isn’t something that people understand. My parents, and my father especially, never quite came to grips with Asperger’s Syndrome as a global neurological disorder, rather than as a series of behavioral quirks that needed to be corrected. My father took the attitude that I needed to be forced “to behave” and to be forced out of my “comfort zone,” rather than using my diagnosis as “an excuse.”
I now realize that in many cases this was like asking somebody on crutches to walk up several flights of stairs, rather than use the “excuse” of their disability to ride the elevator. They might wind up at the top of the building, but they also may be injured getting there.
When I was a child and teenager, I was told to state my needs, only to have them be ignored by the adults around me, until I was overwhelmed in crisis situations that could have been avoided if I had been listened to. I wasn’t protected from bullying in school because I was “overreacting.” I was told that my special interests were wrong and “evil” (that word was literally used—nothing that I was interested in approached evil), and sometimes I was forced to stop engaging in them. I was forced to participate in sports, even though I found them impossibly frustrating and difficult.
The meltdowns that ensued from this were punished, and then I was forced back into situations that led to more meltdowns.
When I was younger, I felt that my parents were making the right decision. I believed that I shouldn’t be allowed to “behave badly” just because I had a psychological problem, and I felt that I was constantly failing to “be good.” Unfortunately, although I was diagnosed independently by two experts in the treatment of autism, we lived too far away for me to receive ongoing treatment from either of them.
I was treated by a regular psychologist who mostly dealt with emotional disturbances and trauma and who had little experience with autism. Thus she didn’t have the insight to explain to my parents that my autistic behaviors were my normal and that I needed to learn coping mechanisms to deal with times when I struggled, rather than just have my behaviors “fixed.”
I’ve realized now that although I’ve been trained to be “normal,” I haven’t been trained to be a healthy autistic person. I wish that rather than trying to make me pass as normal, my parents had learned to support me as I was and am.
*A side-note: It’s surprisingly painful to be told that you don’t have a problem that causes you trouble every single day. I’ve experienced that firsthand and heard about it from a couple of friends who also have issues from childhood that have lasted into adulthood but who now present as normal from the outside. If you want to mentally put them into the category of people with gluten “sensitivity,” that’s fine, but please don’t tell somebody who has trusted you with their diagnosis that they’re wrong about their own mental health to their face. It’s just needlessly hurtful. And bear in mind that all you’re seeing is the way that they present to the world. You can’t see their internal struggle, and you can’t see the (possibly years of) therapy or medication or whatever that got them to the place they’re at today.
Our latest reader contributor and parent of an autistic child strikes a chord with me and my family: Late diagnosis. Check. Solitary life. Check. Crushing rejection. Check. A parent’s desperate dream: “I wish more employers could see past the facade of autism to recognize the smart, hard-working people who simply have minds that are wired differently from the majority of the population.” Here’s our reader in full:
Thanks for sharing so many of these stories. My daughter had some of the typical autism traits as a preschooler, but she was so intelligent, we didn’t think she possibly could be autistic.
As she rose through elementary school, she slowly pulled more into her own little world, and away from all of the other children. By fifth grade, her school guidance counselor told us she was certain my daughter was autistic. As we read more about the spectrum, it was obvious to us, too. We didn’t get her officially diagnosed until she was 16, and then only as a precaution in case she needed help in college.
She never needed help (though she did live at home instead of on campus). She finished college with a 3.9 GPA in biology, with a goal to go to medical school because she always had wanted to help others. Her grades and great MCAT scores earned interviews at medical schools, but she couldn’t get past the admissions interviews.
I understand why they couldn’t see her as a physician. She struggles to look people in the eye. She speaks in a monotone. She answers questions with the fewest words possible. But she would have been amazing at the analytical aspects of pathology.
Crushed by the rejection, she went with a backup plan of lab work. Thankfully, a wonderful instructor saw her potential and accepted her into a histotechnology training program.
When she finished the one-year program, the hospital lab where she trained had no openings for her. For eight months, she got a couple of job interviews a month. Like the med school interviewers, they couldn’t see her working in their labs.
Finally, the lab where she trained had an opening and hired her. They had seen how dedicated and smart she was. Two years later, she is the perfect person to work the overnight shift, which leaves her alone in the lab for about half the shift. Following protocols to the letter every time is so important in lab work, and that’s a strength of many with autism. Her life is very solitary, but she’s happy that she has found her own way to help others.
As parents, it hurt us when she had no real friends in school, and no social life in college, but it never bothered her. It took us a long time to realize her needs for happiness were different from ours. Now, we’re so proud of her, and she even seems proud of herself for finding her own niche in life. I wish more employers could see past the facade of autism to recognize the smart, hard-working people who simply have minds that are wired differently from the majority of the population.
On happiness, it took me years to realize that Tyler’s needs were different from my own. And it was only after digging into research on happiness (and a trip to Monticello, where Thomas Jefferson pursued his) that I sorted through the difference between goodness and pleasure. The latter is what parents most often want for their kids, including neurotypicals. But it’s the former that makes them happy (Marc Gellman sums this up nicely here.)
On employment, it’s worth noting here that Hillary Clinton made big news Monday that was little-noticed in the media. Fielding questions from a campaign audience, Clinton told an autistic lawyer she opposed a Depression-era labor law that allow employers to hire disabled people at a subminimum wage. Sometimes as low as 8 cents per hour. (If you or someone you care about has worked for subminimum wages as a disabled worker, please let me know your story.)
That’s how reader Gary describes his three amazing stepkids:
I was touched by the note about your son Tyler as I read it this morning. It was forwarded to me by my wife of nine years whose three children have all been diagnosed with ASD [autism spectrum disorder]. Her oldest son is 26 and seeking a bachelor’s degree in mathematics with plans to attend graduate school. She has 13-year-old twins who are seventh graders at a public school right now. One of the twins and the oldest son have Asperger’s while the other twin has a more severe form of autism with speech problems and more challenging behavioral issues.
My wife has struggled tirelessly to help her three kids adjust, adapt, and grow into the wonderful human beings they can become. They are so much better off because of their mom. She has faced many obstacles with each child, yet through her fiery determination and strong will, they have overcome those obstacles and were strengthened as a result.
Your note came at a particularly challenging time for her. Last night, as she lay in bed, she told me that she was not a good parent and that she had failed her younger son.
She has adjusted his IEP [individualized education program] so that he does half of his schooling at home under her supervision. He was not particularly excited about his studies that evening and he showed his frustration by ignoring her lessons. This had gone on for about three weeks and she punished him by taking away his various forms of entertainment. She was regretting her decision and felt that he hated her.
I reminded her of how well her two other children have done despite their ASD and how she has helped them overcome so many pitfalls in their lives. I also reminded her that he is so much better off because of her and that he is coming along just like his older brother. She just needed to remember the patience she showed her eldest.
My wife is an amazing woman. She can be so hard on herself because she wants her kids to have a great life. But there are times when so gets depressed trying to make that happen. I can only console her because I don’t understand all of it. The love of a mother for her child is immeasurable, but when there are three of them with ASD and that love is not commonly reciprocated, it can be very difficult to handle.
Your note was uplifting to her when she needed it the most. How do I know this? Her email to me with your forwarded note said, “I love my dandelions!!” I know she does and I know that she is cultivating them in her kitchen for the wonderful characteristics they possess.
Two readers responding to my note on autism reflect two disparate vantage points. The first is a 66-year-old Georgia man with Asperger’s Syndrome, a retired Army officer who has struggled socially his entire life. His subject line: “On the Spectrum.”
[B]oth parents and teachers must understand that not all young people are cut out to be “the leaders of tomorrow”—that some individuals will make their greatest contribution as tinkers or inventors or mechanics or engineers or programmers.
To quote Popeye the Sailor: “I am what I am and that’s all that I am!” And I’ve done okay.
The second is from an elementary school teacher who has taught children on the spectrum. Keith Bohlender of Toronto is neurotypical:
I read “My Little Dandelion,” as well as the Wildhood and Garcia articles, with great interest …. My wife is a speech therapist whose clientele is made up of pre-school children. Many of these children have very recently received diagnoses, or are facing the very real prospect that their beloved child may imminently be diagnosed with ASD [Autism Spectrum Disorder]. My wife is in the exceedingly difficult position of being able, after many years of experience, to expertly recognize the markers that are described in these articles.
She cannot, however, make a formal diagnosis—even when tearfully begged to do so by parents. So, she encourages the parents to seek an opinion from a medical professional.
I am sending all three of these articles to her, with the thought that she may be able to pass them on to some of the parents of her clientele. It may give them comfort and sustenance to read of how adults with ASD are able to cope, contribute and thrive.
Also worth checking out is the video seen above, on how creative expression can help kids with autism. And keep the emails coming—if you’re autistic or the parent of an autistic child and would like to share your story.
I used to dream my son would be an athlete. Now I enjoy watching Tyler chase his own dreams to be a history teacher or comedian. One thing I never considered my boy to be: a dandelion.
Not until I read a Forbes profile on a new acquaintance of mine, Thorkil Sonne, who uses the analogy to describe the brilliant uniqueness of autistic people—like his son and mine:
To most people, the dandelion is nothing more than an annoying weed – something to be rooted out of our lawns and flowerbeds. But what a lot of people don’t know is that, when cultivated, the dandelion is one of the most valuable and useful plants in nature. In many parts of the world, the dandelion is known for its nutritional, healing and medicinal properties. The value of a dandelion is very much dependent on our knowledge and perception of its value.
Most of us don’t want dandelions in our lawns – they don’t fit there. But if you place a dandelion plant in your kitchen garden, and cultivate it, it can turn out to be one of your most valuable plants. Dandelions are used to make beer, wine, salads, and natural medicines. Quite simply, if you choose to cultivate dandelions, you will reap their rewards. So, is a dandelion a weed or an herb? You decide. The same can be said for individuals with autism. The value of what you see depends on your level of understanding and accommodation.
The article describes Thorkil’s efforts to link autistic people with employers who need the distinctive skill sets that come with autism. Most employers don’t know what they’re missing. People with autism aren’t defective; they contribute a special sauce to the human experience. Steve Silberman puts it this way in his book NeuroTribes:
One of the most promising developments since the publication of “The Geek Syndrome” has been the emergence of the concept of neurodiversity: the notion that conditions like autism, dyslexia, and attention-deficit/hyperactivity disorder [ADHD] should be regarded as naturally occurring cognitive variations with distinctive strengths that have contributed to the evolution of technology and culture, rather than mere checklists of deficits and dysfunctions.”
After my son’s diagnosis six years ago, I slowly came to the same conclusion and wrote about it here, here, and here. But there is only so much I can do to help the cause—to help neurotypical people understand what it’s like to be autistic and to realize the value autism offers society—because I’m not truly a part of it. Because I am not autistic.
The perspectives I have on people and the world I’ve interacted with thus far in my life are necessarily informed by my [Asperger’s], whether it looks like I’m an Aspie or not. Ultimately, when my friend told me I don’t look autistic, he was essentially affirming my constructed normalcy, my ability to fake it. In high school, I would have relished in this aptitude to appear “same,” and would have taken his remark as a compliment. But I’ve come to realize that each attempt to somehow make myself more “acceptable” to someone else, more lovable, has left me with what is, in the end, a false connection. I don’t want to be judged based on my [autism] alone, but nor do I want it to not matter. I may not “look autistic” from the outside, but if you see with my eyes, I do.
Please read the powerful stories by Wildhood and Garcia, and let me know what you think. And if you’re autistic or the parent of an autistic child and would like to share your story, I’d love to hear from you as well.
Tyler accept his autism far better than his father once did. “It’s a part of me but I don’t find that it’s a big deal, that I have to be talking about it every five seconds,” he says in a video for Autism Speaks that will be released next month with my parenting memoir, Love That Boy. “Like blue eyes: I don’t talk about how I have blue yes. I have autism, that’s it.”
When it comes to children’s development, parents should worry less about kids’ screen time—and more about their own.
Smartphones have by now been implicated in so many crummy outcomes—car fatalities, sleep disturbances, empathy loss, relationship problems, failure to notice a clown on a unicycle—that it almost seems easier to list the things they don’t mess up than the things they do. Our society may be reaching peak criticism of digital devices.
Even so, emerging research suggests that a key problem remains underappreciated. It involves kids’ development, but it’s probably not what you think. More than screen-obsessed young children, we should be concerned about tuned-out parents.
Yes, parents now have more face time with their children than did almost any parents in history. Despite a dramatic increase in the percentage of women in the workforce, mothers today astoundingly spend more time caring for their children than mothers did in the 1960s. But the engagement between parent and child is increasingly low-quality, even ersatz. Parents are constantly present in their children’s lives physically, but they are less emotionally attuned. To be clear, I’m not unsympathetic to parents in this predicament. My own adult children like to joke that they wouldn’t have survived infancy if I’d had a smartphone in my clutches 25 years ago.
People who have had sex with fewer people seem to be more satisfied after they tie the knot. Is there hope for promiscuous romantics?
If you are on the proverbial market, as you rack up phone swipes, first dates, and—likely—new sexual partners, you might start to ask yourself, Is all this dating going to make me happier with whomever I end up with?
In other words, are you actually getting any closer to finding “the one”? Or are you simply stuck on a hedonic treadmill of potential lovers, doomed like some sort of sexual Sisyphus to be perpetually close to finding your soul mate, only to realize—far, far too late—that they are deal-breakingly disappointing?
Well, sociology has some unfortunate news!
Over at the Institute for Family Studies, Nicholas Wolfinger, a sociologist at the University of Utah, has found that Americans who have only ever slept with their spouses are most likely to report being in a “very happy” marriage. Meanwhile, the lowest odds of marital happiness—about 13 percentage points lower than the one-partner women—belong to women who have had six to 10 sexual partners in their lives. For men, there’s still a dip in marital satisfaction after one partner, but it’s never as low as it gets for women, as Wolfinger’s graph shows:
The Russian opposition leader is showing what courage means.
When Alexei Navalny boarded a plane to Moscow on January 17, he turned his life into a metaphor. He knew it, his wife knew it, and everybody else on the plane knew it. So did the millions of people who had watched his documentary videos, who had seen the witty interviews he did on the plane, who have since joined demonstrations in his name. So did the leaders of Russia, including the country’s dictator and president, Vladimir Putin. This, Navalny was telling all of them, is what courage looks like.
Navalny is Russia’s most important opposition leader, and he was flying home from Berlin after spending many weeks in a hospital there, following the second or perhaps the third attempt on his life. He’d survived because a German NGO had sent a plane to Omsk to take him out of Russia, because the Novichok nerve agent used to poison him doesn’t always kill you right away, and because the Russian hospital had agreed to let him go, probably on the assumption that he would never return. (For the record: One of the doctors who treated him for poison has since died under odd circumstances, and a hospital official who refused to attribute Navalny’s illness to poison has been promoted to regional health minister.)
Antibodies are great and all, but macrophages, B cells, and helper T cells deserve some attention too.
If the immune system ran its own version of The Bachelor, antibodies would, hands down, get this season’s final rose.
These Y-shaped molecules have acquired some star-caliber celebrity in the past year, due in no small part to COVID-19. For months, their potentially protective powers have made headlines around the globe; we test for them with abandon, and anxiously await the results. Many people have come to equate antibodies, perhaps not entirely accurately, with near imperviousness to the coronavirus and its effects. Antibodies are, in many ways, the heartthrobs of the immune system—and some 15 months deep into immunological infatuation, the world is still swooning hard.
Frankly, it’s all getting to be a little too much.
For many of us, when we see the Floyds, we see our family.
An image of George Floyd and his daughter Gianna has been circulating around social media since yesterday. George is sitting in the driver’s seat of a car, wearing a black T-shirt and black baseball cap with the word Houston emblazoned in cursive letters above the brim.
In the passenger seat is Gianna, who is now 7 years old, but in the photo—taken a few years ago—looks as if she isn’t more than 3 or 4. She is wearing a purple-and-pink shirt and matching pants and a small plastic bracelet on her right wrist, and has several silver and pink bobbles tied into her hair. Her right hand is holding a pair of plastic blue-and-black sunglasses—the sort made for children with the expectation that they will not last very long—and she looks as if she has pulled the large glasses down from her face and to her chin specifically for the picture.
If you want to improve your well-being, you need to make a plan and act on it.
“How to Build a Life” is a weekly column by Arthur Brooks, tackling questions of meaning and happiness.
Arthur C. Brooks will discuss the science of happiness live at 11 a.m. ET on May 20. Register for In Pursuit of Happiness here.
In his 1851 workAmerican Notebooks, Nathaniel Hawthorne wrote, “Happiness in this world, when it comes, comes incidentally. Make it the object of pursuit, and it leads us a wild-goose chase, and is never attained.” This is basically a restatement of the Stoic philosophers’ “paradox of happiness”: To attain happiness, we must not try to attain it.
A number of scholars have set out to test this claim. For example, researchers writing in the journal Emotion in 2011 found that valuing happiness was associated with lower moods, less well-being, and more depressive symptoms under conditions of low life stress. At first, this would seem to support the happiness paradox—that thinking about it makes it harder to get. But there are alternative explanations. For example, unhappy people might say they “value happiness” more than those who already possess it, just as hungry people value food more than those who are full.
American culture is becoming more and more preoccupied with nature. What if all the celebrations of the wild world are actually manifestations of grief?
It started, as so many of life’s journeys do, at IKEA. We went one day a few years ago to get bookshelves. We left with some Hemnes and a leafy impulse buy: a giant Dracaena fragrans. A couple of months later, delighted that we had managed to keep it alive, we brought in a spritely little ponytail palm. And then an ivy. A visiting friend brought us a gorgeous snake plant. I bought a Monstera online because it was cheap and I was curious. It arrived in perfect condition, in a big box with several warning labels: perishable: live plants.
Where is the line between “Oh, they have some plants” and “Whoa, they are plant people”? I’m not quite sure, but I am sure that we long ago crossed it. I would read the periodic news articles about Millennials and their houseplants and feel the soft shame of being seen. But I cherished our little garden. Potted plants have a quiet poetry to them, a whirl of wildness and constraint; they make the planet personal. I loved caring for ours. I loved noticing, over time, the way they stretched and flattened and curled and changed. I still do.
Even as cases drop among vaccinated Americans, the coronavirus still can spread among unvaccinated people—who will be disproportionately children.
Like many parents, Jason Newland, a pediatrician at Washington University in St. Louis and a dad to three teens ages 19, 17, and 15, now lives in a mixed-vaccination household. His 19-year-old got vaccinated with Johnson & Johnson’s shot two weeks ago and the 17-year-old with Pfizer’s, which is available to teens as young as 16.
The 15-year-old is still waiting for her shot, though—a bit impatiently now. “She’s like, ‘Dude, look at me here,’” Newland told me. “‘Why don’t you just tell them I’m 16?’” But because certain pharmaceutical companies set certain age cutoffs for their clinical trial, she alone in her family can’t get a COVID-19 shot. She’s the only one who remains vulnerable. She’s the only one who has to quarantine from all her friends if she gets exposed.
Mare of Easttown, starring Kate Winslet as a Delaware County detective, is brilliantly specific in its portrayal of a community. More of its peers should follow suit.
There’s a scene in the second episode of Mare of Easttown, HBO’s new crime series, that I haven’t been able to stop thinking about since I watched it. Mare, the show’s titular police detective (played by Kate Winslet), visits a rural spot where a girl’s body has been found and prepares to inform the girl’s father. “I’m on my way over to Kenny’s right now to tell him, and I want John and Billy to meet me there,” she tells her best friend on the phone. “Probably good to have his cousins there for him, you know?” When Kenny (Patrick Murney) learns what has happened, he closes his eyes, shakes his head, then explodes, smashing random objects around him and shoving the other men as they half-hug, half-restrain him. Mare watches them from a distance, her gaze sympathetic but unsurprised. She knew exactly how Kenny would respond, and understood, too, that she would not have been safe with him and his grief.
On a planet wracked by rising seas, expanding deserts, withering biodiversity, and hotter temperatures, that’s a fraught question to answer. Food production accounts for roughly a quarter of the world’s greenhouse-gas emissions, and scientists have found that limiting global warming will be impossible without significant changes to how the world eats. At the same time, climate change is threatening the world’s food supply, with land and water being exploited at an “unprecedented” pace.
Reforming the food system to save the planet is going to require new corporate practices, and new laws and regulations at the national and international levels. But individual consumer behaviors matter as well—more than you might think. Your diet is likely one of your biggest sources of climate emissions. But what should you do? Eat locally? Get your food from small-scale farmers? Choose organics and fair trade? Avoid processed foods? Eat seasonally?