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.”
Georgia had an early surge of the virus, and now cases are spiking again. Brian Kemp has refused to learn a thing.
America has botched its coronavirus response in so, so many ways since the pandemic began. Even in a country that stands apart from the world for its horrific failures, there have been as many leadership bungles as there are states: Some failed to heed early warnings. Others refused to learn the lessons of outbreaks that came before theirs. Still others played politics instead of following science. And then there’s Georgia.
Georgia’s response to the pandemic has not been going well. It was bad from the beginning: Back in early April, weeks after other states took initial precautions, Georgia dawdled toward a shutdown while its coronavirus cases surged. Still, less than a month later, the state chose to be among the first in the nation to reopen, bringing back businesses known to accelerate the virus’s spread, such as restaurants and gyms, even though new infections had never made a significant or sustained decline. In June, the state welcomed back bars. What happened next was predictable, and was predicted: Case counts came roaring back. More people got sick and died. Many of these deaths were preventable. The state now has the sixth-highest number of coronavirus cases in the United States, behind five states with significantly larger populations.
No matter what happens now, the virus will continue to circulate around the world.
The coronavirus that causes COVID-19 has sickened more than 16.5 million people across six continents. It is raging in countries that never contained the virus. It is resurgingin manyof the ones that did. If there was ever a time when this coronavirus could be contained, it has probably passed. One outcome is now looking almost certain: This virus is never going away.
The coronavirus is simply too widespread and too transmissible. The most likely scenario, experts say, is that the pandemic ends at some point—because enough people have been either infected or vaccinated—but the virus continues to circulate in lower levels around the globe. Cases will wax and wane over time. Outbreaks will pop up here and there. Even when a much-anticipated vaccine arrives, it is likely to only suppress but never completely eradicate the virus. (For context, consider that vaccines exist for more than a dozen human viruses but only one, smallpox, has ever been eradicated from the planet, and that took 15 years of immense global coordination.) We will probably be living with this virus for the rest of our lives.
The Biden vice-presidential-nominee finalist discusses Trump’s pandemic response, Benghazi, and her family’s politics.
A few days before Donald Trump’s inauguration, then-National Security Adviser Susan Rice held a press briefing in her office to talk about the threats she saw on the horizon as Barack Obama’s presidency drew to a close. “What keeps you up at night? one reporter asked toward the end of the meeting. Her answer: a pandemic that spirals out of control.
Yesterday afternoon, I asked Rice how the past five months have compared to what she’d been worried about in the early days of 2017. “This is about in the realm of my worst nightmare,” she told me. That’s why, Rice said, she worked to put together plans, and why she oversaw the creation of the pandemic-preparedness office that Trump famously closed. “We knew it was going to happen. We just couldn’t know when.”
Three predictions for what the future might look like
In March, tens of millions of American workers—mostly in white-collar industries such as tech, finance, and media—were thrust into a sudden, chaotic experiment in working from home. Four months later, the experiment isn’t close to ending. For many, the test run is looking more like the long run.
Google announced in July that its roughly 200,000 employees will continue to work from home until at least next summer. Mark Zuckerberg has said he expects half of Facebook’s workforce to be remote within the decade. Twitter has told staff they can stay home permanently.
With corporate giants welcoming far-flung workforces, real-estate markets in the superstar cities that combine high-paid work and high-cost housing are in turmoil. In the San Francisco Bay Area, rents are tumbling. In New York City, offices are still empty; so many well-heeled families with second homes have abandoned Manhattan that it’s causing headaches for the census.
A virus has brought the world’s most powerful country to its knees.
How did it come to this? A virus a thousand times smaller than a dust mote has humbled and humiliated the planet’s most powerful nation. America has failed to protect its people, leaving them with illness and financial ruin. It has lost its status as a global leader. It has careened between inaction and ineptitude. The breadth and magnitude of its errors are difficult, in the moment, to truly fathom.
In the first half of 2020, SARS‑CoV‑2—the new coronavirus behind the disease COVID‑19—infected 10 million people around the world and killed about half a million.
How I got co-opted into helping the rich prevail at the expense of everybody else
From my parents’ teenage years in the 1930s and ’40s through my teenage years in the 1970s, American economic life became a lot more fair and democratic and secure than it had been when my grandparents were teenagers. But then all of a sudden, around 1980, that progress slowed, stopped, and in many ways reversed.
I didn’t really start understanding the nature and enormity of the change until the turn of this century, after the country had been fully transformed. One very cold morning just after Thanksgiving in 2006, I was on the way to Eppley Airfield in Omaha after my first visit to my hometown since both my parents had died, sharing a minivan jitney from a hotel with a couple of Central Casting airline pilots—tall, fit white men around my age, one wearing a leather jacket. We chatted. To my surprise, even shock, both of them spent the entire trip sputtering and whining—about being bait-and-switched when their employee-ownership shares of United Airlines had been evaporated by its recent bankruptcy, about the default of their pension plan, about their CEO’s recent 40 percent pay raise, about the company to which they’d devoted their entire careers but no longer trusted at all. In effect, about changing overnight from successful all-American middle-class professionals who’d worked hard and played by the rules into disrespected, cheated, sputtering, whining chumps.
The comedian’s employees say that fame has enabled callousness and abuse on her show. The warm testimonies of her superstar friends highlight their point.
Famous people want the world to know that Ellen DeGeneres is nice to famous people. Addressing media reports alleging a culture of harassment and bullying at DeGeneres’s talk show, the singer Katy Perry tweeted Tuesday that she’s “only ever had positive takeaways from my time with Ellen.” Ashton Kutcher, Kevin Hart, Jay Leno, Diane Keaton, and the superstar agent Scooter Braun have all recently made similar declarations about DeGeneres’s kindness, so as to push back against claims painting her as callous toward staffers, fans, and other entertainment-industry figures. “Looking forward to the future where we get back to loving one another,” Hart wrote, blasting those who have criticized DeGeneres and called for her to step down. “This hate shit has to stop.”
Which is too bad because we really need to understand how the immune system reacts to the coronavirus.
Updated at 10:36 a.m. ET on August 5, 2020.
There’s a joke about immunology, which Jessica Metcalf of Princeton recently told me. An immunologist and a cardiologist are kidnapped. The kidnappers threaten to shoot one of them, but promise to spare whoever has made the greater contribution to humanity. The cardiologist says, “Well, I’ve identified drugs that have saved the lives of millions of people.” Impressed, the kidnappers turn to the immunologist. “What have you done?” they ask. The immunologist says, “The thing is, the immune system is very complicated …” And the cardiologist says, “Just shoot me now.”
The thing is, the immune system is very complicated. Arguably the most complex part of the human body outside the brain, it’s an absurdly intricate network of cells and molecules that protect us from dangerous viruses and other microbes. These components summon, amplify, rile, calm, and transform one another: Picture a thousand Rube Goldberg machines, some of which are aggressively smashing things to pieces. Now imagine that their components are labeled with what looks like a string of highly secure passwords: CD8+, IL-1β, IFN-γ. Immunology confuses even biology professors who aren’t immunologists—hence Metcalf’s joke.
A white man of the Jim Crow South, he couldn’t escape the burden of race, yet derived creative force from it.
In June 2005, Oprah Winfrey announced a surprising choice as the 55th selection for her influential book club. The coming months would be, she proclaimed, a “Summer of Faulkner,” focused on three of his novels—As I Lay Dying, The Sound and the Fury, and Light in August, available in a special 1,100-page box set weighing in at two pounds. Oprah’s website posted short videotaped lectures by three literature professors to assist readers in making sense of the writer’s notoriously demanding prose. The Faulkner trilogy quickly rose to the No. 2 spot on Amazon’s best-seller list. Some literary critics hailed Winfrey for bringing William Faulkner back into popular consciousness; others challenged any notion of recovery or revival, asking whether he had ever really gone away.
Reopening universities will accomplish little and endanger many.
Despite the continuedspread of the coronavirus, many colleges around the country plan to welcome students back to campus over the coming weeks.
Colleges want to reopen for good, nontrivial reasons. Administrators believe that most students learn better when they are physically assembled in the same place. And they know that the American college experience, at any rate, has long been about more than the classroom. It allows students to cut the umbilical cord, make friends with like-minded people, and pursue extracurricular activities—all of which are much harder to do if your freshman year consists of joining Zoom sessions from your parents’ basement. Many universities also face serious financial problems. If they are unable to reopen this fall, some may collapse.