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.”
Five years ago, the flight vanished into the Indian Ocean. Officials on land know more about why than they dare to say.
1. The Disappearance
At 12:42 a.m. on the quiet, moonlit night of March 8, 2014, a Boeing 777-200ER operated by Malaysia Airlines took off from Kuala Lumpur and turned toward Beijing, climbing to its assigned cruising altitude of 35,000 feet. The designator for Malaysia Airlines is MH. The flight number was 370. Fariq Hamid, the first officer, was flying the airplane. He was 27 years old. This was a training flight for him, the last one; he would soon be fully certified. His trainer was the pilot in command, a man named Zaharie Ahmad Shah, who at 53 was one of the most senior captains at Malaysia Airlines. In Malaysian style, he was known by his first name, Zaharie. He was married and had three adult children. He lived in a gated development. He owned two houses. In his first house he had installed an elaborate Microsoft flight simulator.
The mistakes of the past are fast creating a crisis for younger Americans.
The Baby Boomers ruined America. That sounds like a hyperbolic claim, but it’s one way to state what I found as I tried to solve a riddle. American society is going through a strange set of shifts: Even as cultural values are in rapid flux, political institutions seem frozen in time. The average U.S. state constitution is more than 100 years old. We are in the third-longest period without a constitutional amendment in American history: The longest such period ended in the Civil War. So what’s to blame for this institutional aging?
One possibility is simply that Americans got older. The average American was 32 years old in 2000, and 37 in 2018. The retiree share of the population is booming, while birth rates are plummeting. When a society gets older, its politics change. Older voters have different interests than younger voters: Cuts to retiree-focused benefits are scarier, while long-term problems such as excessive student debt, climate change, and low birth rates are more easily ignored.
These words came from an elderly woman sitting behind me on a late-night flight from Los Angeles to Washington, D.C. The plane was dark and quiet. A man I assumed to be her husband murmured almost inaudibly in response, something to the effect of “I wish I was dead.”
I didn’t mean to eavesdrop, but couldn’t help it. I listened with morbid fascination, forming an image of the man in my head as they talked. I imagined someone who had worked hard all his life in relative obscurity, someone with unfulfilled dreams—perhaps of the degree he never attained, the career he never pursued, the company he never started.
These days, it seems, just about all organizations are asking their employees to do more with less. Is that actually a good idea?
In the faint predawn light, the ship doesn’t look unusual. It is one more silhouette looming pier-side at Naval Base San Diego, a home port of the U.S. Pacific Fleet. And the scene playing out in its forward compartment, as the crew members ready themselves for departure, is as old as the Navy itself. Three sailors in blue coveralls heave on a massive rope. “Avast!” a fourth shouts. A percussive thwack announces the pull of a tugboat—and 3,000 tons of warship are under way.
But now the sun is up, and the differences start to show.
Most obvious is the ship’s lower contour. Built in 2014 from 30 million cans’ worth of Alcoa aluminum, Littoral Combat Ship 10, the USS Gabrielle Giffords, rides high in the water on three separate hulls and is powered like a jet ski—that is, by water-breathing jets instead of propellers. This lets it move swiftly in the coastal shallows (or “littorals,” in seagoing parlance), where it’s meant to dominate. Unlike the older ships now gliding past—guided-missile cruisers, destroyers, amphibious transports—the littoral combat ship was built on the concept of “modularity.” There’s a voluminous hollow in the ship’s belly, and its insides can be swapped out in port, allowing it to set sail as a submarine hunter, minesweeper, or surface combatant, depending on the mission.
The sheer effrontery of the government’s argument may be explained, but not excused, by its long backstory.
Arguments before the United States Court of Appeals are usually dry, esoteric, and nerdy. What would it take to make one go viral? This week, in a clip that launched a million angry Facebook posts, we found out. It took a lawyer for the United States telling a panel of incredulous Ninth Circuit judges that it is “safe and sanitary” to confine immigrant children in facilities without soap or toothbrushes and to make them sleep on concrete floors under bright lights.
This assertion generated widespreadoutrage. Sarah Fabian, the senior attorney in the Department of Justice’s Office of Immigration Litigation who uttered it, was instantly excoriated online. As fate would have it, the clip of her argument went viral at the same time as a new wave of reports of brutal and inhumane conditions at immigrant confinement centers. It also immediately followed the raucous debate over Representative Alexandria Ocasio-Cortez referring to the confinement centers as concentration camps. The juxtaposition suggested, misleadingly, that the Trump administration was explicitly justifying the worst sorts of child mistreatment we were seeing on the news.
For all those nationally who’ve been dazzled by the mayor, the voters of South Bend aren’t satisfied with his response to a fatal police shooting last week.
NORTH AUGUSTA, S.C.—The metaphor was so obvious, even cliché, but it was also inescapable: As Pete Buttigieg was driving here from Columbia for a town hall late Saturday afternoon, huge, dark clouds moved into the sunny sky, and a cold wind started blowing through the heat.
“We’re hoping to beat the rain,” Buttigieg told me over the phone, looking out the window, as the crowd and I were waiting for him to arrive. “Looks like something biblical is happening here.”
The South Bend, Indiana, mayor has had the most charmed rise of any 2020 candidate. Given the leap he’s made from an obscure small-city mayor to a top-tier presidential contender, his is arguably one of the most charmed political ascents ever in American politics. Yet there’s been no charm to the past week of his campaign. Back home, a white police officer’s fatal shooting of a black man armed with a knife has exploded years of built-up racial tension in the city. And for all the people nationally who’ve been dazzled by his knack for offering answers that seem to fit problems like puzzle pieces, the voters back home don’t seem satisfied by what the mayor has come up with so far.
A new study shows Americans have little understanding of their political adversaries—and education doesn’t help.
Americans often lament the rise of “extreme partisanship,” but this is a poor description of political reality: Far from increasing, Americans’ attachment to their political parties has considerably weakened over the past years. Liberals no longer strongly identify with the Democratic Party and conservatives no longer strongly identify with the Republican Party.
What is corroding American politics is, specifically, negative partisanship: Although most liberals feel conflicted about the Democratic Party, they really hate the Republican Party. And even though most conservatives feel conflicted about the Republican Party, they really hate the Democratic Party.
America’s political divisions are driven by hatred of an out-group rather than love of the in-group. The question is: Why?
He wants to take pictures with her and their daughter like they’re still one happy family—and I want him to stop.
I am engaged to be married to a wonderful woman who has a 6-year-old daughter with her ex-husband. They share joint custody. A major contributing factor in her decision to end their marriage was her ex’s controlling nature. Even now, after being divorced for more than two years, he tries to control her life.
One of the ways he tries to do this is by insisting on taking pictures of the three of them at every function where they are all present. First day of school, graduations, etc.—he has to have pictures taken of himself with my fiancée and their daughter as if they are still one big happy family.
Since the divorce, he has gotten engaged as well. I can only assume his fiancée must find these odd “not-a-family pictures” as strange as my fiancée and I do. The sole reason we haven’t shut him down when he insists on them is that we think maybe it is a nice thing for the little girl to have pictures of herself with her mom and dad. But we dread every event when we know he is going to expect this.
The political rookies Andrew Yang and Marianne Williamson will get their shot at Thursday’s Democratic debate, sharing the stage with eight politicians with a combined 150 years of elected experience.
Andrew Yang leaned toward me inside his 2020-campaign headquarters, as he compared federal economic policy to baking muffins. He suggested that his progressive 2020 rivals, like Senators Bernie Sanders and Elizabeth Warren, want to change some ingredients and try again. Yang wants to start from scratch instead.
“The recipe’s not working; this tastes like shit,” Yang said, talking quickly. “Instead of saying, ‘I’m going to make this recipe less shitty,’ it’s like, ‘You know what? Maybe I’m going to bake something else and stop trying to salvage this shit-muffin!’”
He broke out laughing.
“I’ve never used that metaphor,” he explained excitedly. “That’s new!”
Yang, a first-time candidate known mostly for his proposal to give every American a universal basic income of $1,000 a month, is himself new to this whole running-for-president thing. When potential voters watch the first Democratic presidential primary debates next week, arrayed before them will be a former vice president, four U.S. senators, a former governor, a congressman, a mayor, and two people that, polls show, most Americans have never heard of: Yang and Marianne Williamson.
Tucker Carlson called John Bolton a “bureaucratic tapeworm.” Is his wrath justified?
I do not normally watch Tucker Carlson’s Fox News show, but when the fate of the Earth is at stake, I make an exception. On Friday night, after an extraordinary week of brinkmanship in the Persian Gulf, Carlson delivered a seven-minute philippic against John Bolton, President Trump’s national security adviser. Bolton is the most bellicose in the West Wing of the White House, and according to reports, he has advocated military action against Iran in retaliation for the attacks on oil tankers and the downing of a $130 million U.S. drone in the Strait of Hormuz. Trump says he called off a military strike with an hour to go—reportedly on the private advice of Carlson.
On his show, Carlson described Bolton as “a bureaucratic tapeworm. Try as you might, you can’t expel him.” (Bolton served in three Republican administrations before Trump but was out of government from 2006 until his appointment to head the National Security Council last year.) He and other neoconservatives had beguiled previous presidents of both parties into invading and destabilizing stable countries such as Syria, Libya, and Iraq. They are parasites, Carlson said, and Bolton would “live forever in the bowels of the federal agencies, periodically reemerging to cause pain and suffering but never suffering himself.”