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.
The latest contribution to our ongoing reader series comes from the proud grandmother of a kindergartner with autism. She agrees with me that it takes a village to support children and adults on the spectrum:
Awareness and diagnosis are a priority for the family. There are too many children falling through the cracks, so my daughter has volunteered to start a community support group for parents who are concerned about their child’s development. She has found many parents reluctant to accept a label, and she hopes to turn their fears into action.
I told her that my wife and I embraced the label and found solace in knowing the challenges facing our son and what we could do to help him. More important, Tyler proudly calls himself an Aspie. “Like blue eyes, I don’t talk about how I have blue eyes,” he says in a video interview with Autism Speaks (embedded above). “I have autism. That’s it.”
This next reader and Twitter friend writes about the rich inner lives of people with special needs, including autism. (Some names and details have been changed to protect privacy.) It’s painful to read about this particular kind of heartache:
For two years, Frank has wanted to move out of his group home to a new place. Although his current digs are clean and safe, he’s gotten bored. When he saw our children move into college dorms, he wanted to do the same. He thinks of college life as what he’s seen on Beverly Hills 90210.
We finally found him a nice new home close to his current digs. He’s had dinner over there. We’re attending to the formal details. He’s been packing bags in his room.
In the house he is leaving, Frank lives with several other guys. He is closest to Jon. Jon cannot speak. He communicates by scribbling on scraps of paper and excitedly handing them to staff members who then try to decipher what he has written.
Frank is probably his closest friend. He’s called him Jon-Jon for a few years now. Frank has also been swiping Diet Cokes from us for years. I used to get annoyed by this, until I realized that he and Jon were sitting together, sharing the loot.
Jon is heartbroken by Frank’s pending move. He’s weeping, and doing some other manageable problem behaviors. A staff member called our house the other night, hinting around to see if we would reconsider the move. I won’t do that. Frank is an adult man entitled to make his own choices. He wants a change. I’m not going to pressure him to miss a valuable opportunity. But like many life changes, it brings someone else heartache and loss.
These men have much richer inner lives than we’ll ever really understand. They mourn long-ended relationships with relatives, housemates, and friends who’ve died, moved away, or slipped out of their lives. They are expected to bear these losses with a child-like smile, and not to get overly frustrated when we don’t understand what they are trying to tell us.
In this case, though, the message could hardly be simpler: I will miss you. Do you really have to go?
Many Atlantic site readers will know Ron Fournier from his political writings — for many years for the AP, and in recent years for National Journal, part of the Atlantic’s family. Some readers will agree with him from that work. Others, as Ron himself is well aware, will disagree. Ron is a tough guy — a cop’s son from Detroit who did his early newspaper work in small-town Arkansas, someone you can imagine wearing a porkpie hat with a “Press” card in the brim even now. He can take your disagreeing with him.
Whatever your view of politics or political writing, I encourage you to read Ron’s new book, Love That Boy. It is about his coming to terms with, and then embracing, the fact of his son Tyler’s autism. It’s an eloquent, brave, big-hearted book, which Ron Fournier will be glad to have written and readers will be glad to have found. It’s also about the timeless anxieties and emotions of parenthood, and the modern twists thereon. If you start reading I think you’ll keep on. Congrats to Ron for having written it, and to his family on their cohesion.
NB It’s a sign of my sincerity in recommending this book that I do so despite Ron Fournier’s having fallen for the Boiled Frog Myth. “Ever hear the metaphor of a boiling frog?” Ron asks in chapter two. “If a frog is placed in boiling water, it will jump out ...” Ron, nooooo! So if I’m complimenting a boiled-frog book, you know I mean it.
I think what we’re seeing playing out in this Notes thread is the division within the autism community. It’s a divide (if I might over generalize for the sake of the discussion) between those focused largely on high-functioning autistic people and the support they need and those geared more toward low-functioning autistic people and the need for research.
Into that breach comes Ari Ne’eman, a person with autism and a mission: He’s a zealous advocate for services that support people on the spectrum. It was Ari who pointed me to Hillary Clinton’s remarks on the subminimum wage. I asked him to respond to the readers defending the exemption for certain employers who hire disabled people, namely in “sheltered workshops.” Ari directed me to two long posts he’s written, here and here, under the title “(Almost) Everything You Need to Know About Sheltered Workshops.” First, here’s Ari with an overview of the places we’re debating about:
Sheltered workshops are work centers which exclusively or predominantly employ people with disabilities. Many hold 14(c) certificates, so named after the section of the Fair Labor Standards Act allowing certain employers to pay disabled workers less than minimum wage.
Today, approximately 228,600 workers with disabilities are paid under 14(c), the majority of which are paid less than the minimum wage (a minority of employers also use 14(c) certificates to pay under the prevailing wage rate required by federal contracts). While there are more workers than that in sheltered workshops, the population covered under 14(c) tends to be the most focused on by advocates, as many garner little economic benefit from their work, some making less than a dollar an hour.
From Ari’s section, “What’s the problem with sheltered workshops?”:
At a basic level, sheltered workshops suffer from a fundamental conflict of interest.
As a service-provider, the workshop is tasked with helping a worker with a disability to pursue their preferred career and maximize their earnings. As an employer, the workshop has little incentivize to lose their most productive employees or add to their payroll costs. Make no mistake: even non-profit workshops are businesses, and like any business, they will seek to maximize their profits and economic viability.
Workers with the greatest likelihood of success in the general workforce are those that workshop supervisors are most loath to part with, as they are depended on to allow the workshop to deliver on its contracts. Workers in sheltered workshops lack any recourse to improve their economic prospects – because the people whose job it is to assist them in doing so have a vested interest in keeping them where they are.
Hearing this made a lightbulb come on. I’m a dandelion.
Part of this sounds like that whole “I’m-a-special-snowflake” crap that has been pushed around these days. But this is exactly how someone with Aspergers or autism can feel. On the downside, they might feel like a weed, a nuisance to the rest of the neurotypical world. It’s how I’ve felt at times. But the thing is, dandelions have benefits as well. What might not fit well on a lawn, might make a good wine or a balm.
But I think most employers, even in the nonprofits, tend to go for flowers, people that are “beautiful,” put-together, who know how to make small talk and aren’t moody or plain weird.
Maybe this is why the unemployment rate among those with autism is something like 85 percent. (No, that isn’t made up.) Our work culture is one that is geared towards efficiency. We want workers we don’t have to really train, let alone accomodate. So what happens when you get someone who is autistic and needs to be cultivated and isn’t geared towards being efficient? They don’t last long in their jobs.
I don’t think the job market was always like this. I think there was a time when companies and groups were interested in investing in the worker. Of course those with autism were locked up in institutions, so the old days weren’t so good. But I think we need to bring back the notion or nurturing workers instead of making them fit some template.
What needs to be done is a radical overhaul of how we see those with autism. In the profile of Somme, it is noted that employers need to gear themselves to be places that can accommodate autistic workers:
One significant challenge in utilizing individuals with autism is that many employers don’t always see the upside in hiring individuals who can be considered rigid and moody or a have poor communication skills. Because of this, Specialisterne focuses on developing new approaches that allow businesses to tap into the potential of this unique demographic. Sonne believes that innovative employment programs, that focus on individuals with special needs, can turn out some of the most diligent, dependable and productive employees.
Sonne’s company Specialisterne, has a unique approach in how they hire and work alongside persons with autism:
Work Design: Traditional approach: Work design derives business needs from stable strategies and plans. Jobs are designed by determining the tasks a given job requires, translating these tasks into job descriptions and then placing individuals into stable organizational roles.
New Approach: Design jobs to maximize potential for particular individuals to create value. Project roles are customized so they “work” for short-term needs but can evolve as needs change.
But while I’m glad for Sonne and Specialisterne, I have to deal with this world, the world where autism is still a puzzle or frustration.
So, at the risk of offending potential and future employers, I will say this: I’m a dandelion. I am rough around the edges. I am not pretty, I am not great at small talk and I will not be easy to get to know. But if you work with me, you will see a creative side that can produce things you never even thought of.
My brother-in-law has Down’s syndrome, and he works jobs for less than minimum wage. He does not really understand numbers, and he has minimal verbal skills. He frequently does not talk at all.
I remember he once came up to me and tapped me on the shoulder; he wanted to show me (wordlessly) that he had two dollar bills. At the time, he did not understand that they were worth less than a 20 dollar bill. He may understand the difference now.
In spite of his profound disabilities, he can clean and do laundry. It means the world to him that he earns his own money; it makes him like his (able) brothers. And the jobs that hire him do not get $7.25/hour worth of work. I think we are all happy with the arrangement.
Several other readers provided more smart pushback in the comments section, and my colleague Chris edited together some of the best responses below. This first reader insists we need to draw more distinctions in this debate:
Fournier’s post seems to throw all people with disabilities into one pot. Some disabilities (say, sitting in a wheel chair) may be a handicap for some jobs, but there are plenty of other jobs where a person with this disability can work just as well as someone without disabilities. Paying the disabled person a lower wage is unfair.
But there are also people with much more severe (in the sense of hindrance to work) disabilities.
Their work is more like supervised playing, the results of which people will only buy out of charity (say, pottery made by someone with the Down syndrome). Allowing these people this work is very helpful for their self esteem but it simply isn’t worthwhile from a purely economic standpoint, so paying them a federal minimal wage will destroy these opportunities.
Deciding which person falls into which category is another thorny issue, but treating every disability the same is not the answer.
Another reader has a real-life example of such distinctions:
I have a brother-in-law on the autism spectrum, and a co-worker with MS [multiple sclerosis]. My co-worker has the much more apparent disability; he is reliant on voice activation for much of his workday. My brother is fully physically capable, is communicative, and can do most tasks, but emotionally- and responsibility-wise, he’s a 13 year old.
My co-worker likely makes more money than I do, and he deserves it; he has a master’s degree and is an excellent employee.
My brother had a “shelter job” for years, making ~$4.50 an hour, but also receiving close supervision and peer interaction, and the “company” he worked for dumped all proceeds into staff and facilities to provide their employees with access to low-cost therapy, sports leagues, and other events.
But he quit working there to try and make “more money,” and he’s quit or been fired from about six jobs in two years. He’s currently unemployed and on a waiting list to get back into his old position.
This next reader gives an impassioned defense of the sheltered workshops that hire the disabled:
Not every employer is looking to exploit their workers. The majority of sheltered workshops are non-profits who contract with local businesses and provide critical life skills (and often residences) to their workers. The majority of these workshops barely break even.
The program that is in place under the FSLA [Fair Labor Standards Act] is closely regulated and observed by the Department of Labor. You have to have a special certificate to employ individuals with vocational disabilities, and even then you have to base their pay rates on their specific disability in relation to the work they are performing.
I am an unabashed progressive who hates unfair wages, but this is a program that is helping the disabled, not exploiting them.
The people who are in sheltered workshops are often extremely disabled for the work they are performing. To these individuals, the job itself means considerably more than the pay. It is a point of pride to be able to engage in meaningful work at all. If you get rid of differential wages for the disabled, people will stop hiring the disabled, and a significant source of pride and feelings of normalcy in those people’s lives will be diminished.
Of course, Hillary Clinton isn’t thinking about any of those things. She’s just sucking up for votes and trying to sound like she cares about the “little people.”
One more reader with a real-life example:
I have family member who did one of those programs. She needs close monitoring and regular (like every 10 minutes) direction and feedback. In hiring you have to ask yourself, “Can this person do the job without unreasonable supervision?” In her case, the answer is no.
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.”
They’ve aligned themselves with forces they despise. But lefty anti-vaxxers don’t see the contradiction.
Conspiracy theorists who discount the safety and efficacy of COVID-19 vaccines and other public-health mandates are often portrayed in the media as right-wing. That’s for good reason: a not-insignificant number of the most vocal conspiracists tie their ideology firmly to President Donald Trump and the right-wing MAGA movement he inspired. Videos of angry red-state demonstrators pushing back against school boards and other local authorities in public hearings, and repeating outlandish, baseless misinformation, have made the rounds in traditional media.
But in the hills of western Massachusetts and in neighboring regions of upstate New York, a traditionally left-leaning area, these theories also hold purchase. I grew up in the region and started my journalistic career there. I’ve been arguing with residents, many of whom are close friends, about vaccines for more than a decade. But despite my efforts, and the efforts of many others, a stubborn resistance to reality has set in here, and only deepened since the pandemic began. Late last month, Do We Need This?, a group of anti-vaxxers and vaccine-mandate opponents, held a “festival” in the region to raise money for their cause, suggesting a $20 donation for entry. They shared the proceeds with other national vaccine-skeptic groups, including NY Stands Up!, the Informed Consent Action Network, and Robert Kennedy Jr.’s Children’s Health Defense.
Eventually we might all have to deal with COVID-19—but a shorter, gentler version, thanks to vaccines.
Boghuma Kabisen Titanji was just 8 years old when the hyper-contagious virus swept through her classroom. Days later, she started to feel feverish, and developed a sparse, rosy rash. Three years after being fully dosed with the measles vaccine, one of the most durably effective immunizations in our roster, Titanji fell ill with the very pathogen her shots were designed to prevent.
Her parents rushed her to a pediatrician, worried that her first inoculations had failed to take. But the doctor allayed their fears: “It happens. She’ll be fine.” And she was. Her fever and rash cleared up in just a couple of days; she never sickened anyone else in her family. It was, says Titanji, now an infectious-disease physician and a researcher at Emory University, a textbook case of “modified” measles, a rare post-vaccination illness so mild and unthreatening that it doesn’t even deserve the full measles name.
On the day that SpaceX’s first space tourists launched, Elon Musk was there at Kennedy Space Center, in Florida, to see them off, cheering as the private astronauts walked to the Teslas that would take them to suit up. And after they landed safely, having orbited Earth about 45 times, Musk was there again to congratulate them in person.
The Inspiration4 mission marked SpaceX’s fourth successful human spaceflight, and a SpaceX official says the company wants to fly paying customers “three, four, five, six times a year at least.” In this era’s space race among private companies, Musk’s SpaceX pulled ahead on essentially every measure but one—giving the CEO a lift above the atmosphere. Branson did it, Bezos did it—so why hasn’t Musk himself flown yet?
The pandemic keeps changing, but these principles can guide your thinking through the seasons to come.
Updated at 9:28 a.m. on September 21, 2021.
For nearly two years now, Americans have lived with SARS-CoV-2. We know it better than we once did. We know that it can set off both acute and chronic illness, that it spreads best indoors, that masks help block it, that our vaccines are powerful against it. We know that we can live with it—that we’re going to have to live with it—but that it can and will exact a heavy toll.
Still, this virus has the capacity to surprise us, especially if we’re not paying attention. It is changing all the time, a tweak to the genetic code here and there; sometimes, those tweaks add up to new danger. In a matter of weeks, the Delta variant upended the relative peace of America’s early summer and ushered in a new set of calculations about risk, masking, and testing. The pandemic’s endgame shifted.
Today’s fictional North is defined by nostalgia for an icier time.
This article contains spoilers for The Terror and The North Water.
Of all the horrors of a 19th-century European voyage to the Arctic—noses and cheeks turned necrotic by frostbite, snow blindness, sea madness, broken bones badly knit—perhaps most ghastly was scurvy. The disease often starts with stiff limbs and ulcerating skin. Gums bleed and blacken, then engorge and protrude over the teeth or their absent weeping sockets like a dark second set of lips. This tissue is actively rotting, so living men smell dead. Odors and sounds become agonizingly, even dangerously, intense; hearing a gunshot can kill. And because many sufferers hallucinate that they are among the foods and comforts of home, some doctors called the affliction “nostalgia.”
Dear Evan Hansen was lauded on Broadway, but the film adaptation only emphasizes its flaws.
When Dear Evan Hansen premiered on Broadway in 2016, it drew near-universal praise from New York’s theater critics. Ben Platt, playing an anxious teenager who becomes an internet celebrity after misrepresenting his role in a local tragedy, was showered with plaudits, and the show ended up winning six Tony Awards—the most of the season—including Best Musical and a leading-actor trophy for Platt. A film version was thus hardly a surprise. But when the director Stephen Chbosky’s extremely faithful adaptation premiered as the opening-night movie of this year’s Toronto International Film Festival—the movie will be released in theaters this Friday—the reviews that followed were … broadly bad.
What changed? It wasn’t the story or the songs. Dear Evan Hansen the film is written by Steven Levenson, who wrote the narrative of the Broadway show, and largely retains the score, by Benj Pasek and Justin Paul (a few of the least compelling numbers have been cut; others have been added). And while the cast around Platt is mostly filled out by movie stars rather than Broadway veterans, the performances from actors such as Amy Adams, Julianne Moore, Kaitlyn Dever, and Amandla Stenberg are uniformly solid. Did something get lost in translation, or is this an emperor’s-new-clothes moment revealing that Dear Evan Hansen never was any good in the first place?
After winning her award, Michaela Coel delivered the rare message meant for those outside the glitzy room in which she stood.
When the camera turned to Michaela Coel after she won an Emmy for limited-series writing, she looked overwhelmed. The creator, star, writer, and co-director of I May Destroy You kept her head down, her shoulders slouched. Next to her, Coel’s former co-star Cynthia Erivo whispered something into her ear—a pep talk, maybe. But for a few seconds, Coel remained still, as if the weight of her first, historic Emmy win might keep her from going onstage.
Luckily, it didn’t. Coel gave one of the night’s shortest speeches, and perhaps its most revealing. In her remarks, Coel did something unusual: She thought about her audience, tried to reach beyond the other entertainers seated in the room with her. “Write the tale that scares you, that makes you feel uncertain, that isn’t comfortable,” she said. “I dare you … Visibility these days seems to somehow equate to success. Do not be afraid to disappear—from it, from us—for a while, and see what comes to you in the silence.” She spoke directly to the potential storytellers hoping to one day be onstage. And she didn’t just advise them; in a night of pomp and circumstance, she reminded them of the value of quieter triumphs.
Texas’s refusal to allow a pastor to pray while holding a dying man’s hand is an offense to basic Christian values.
Devotees to the cause of religious liberty may be startled to discover during the Supreme Court’s upcoming term that the latest legal-theological dispute finds the state of Texas locked in conflict with traditional Christian practice, where rites for the sick, condemned, and dying disrupt the preferences of executioners.
A recent stay in Ramirez v. Collier has again put Texas on the defense in a series of cases about whether death-row inmates have the right to be joined by clergy of their choice in the execution chamber. Earlier this month, the Court agreed to hear John Henry Ramirez’s claim that Texas’s refusal to allow a pastor to lay hands on and pray over him in the execution chamber is a violation of his constitutional rights; lower courts had held that silent prayer would suffice, which Ramirez protested. The Court issued a stay in a similar case in June 2020, when another Texas inmate, Ruben Gutierrez, asked for a Catholic priest to join him as he was killed. The Court has likewise intervened in Alabama, which has banned all clergy from its execution chamber, a policy that Texas enacted two years ago but reversed in April. Now Texas says it will allow clergy of any faith, provided they are vetted and pass a background check—though still with other limitations, as Ramirez shows.
Conventional wisdom says that venting is cathartic and that we should never go to bed angry. But couples who save disagreements for scheduled meetings show the benefits of a more patient approach to conflict.
For decades, when Liz Cutler’s husband, Tom Kreutz, did something that bothered her, Cutler would sometimes pull out a scrap of paper from the back of her desk drawer. On it she would scribble down her grievances: maybe Kreutz had stayed late at work without giving her a heads-up, or maybe he’d allowed their kids to do something she considered risky. The list was Cutler’s way of honoring a promise she and her husband had made. They would talk about their frustrations only in scheduled meetings—which they held once a year for a time, and later, every three months. It’s a system they’ve adhered to for more than 40 years.
Any psychologist will tell you that conflict is both an inevitable and a vital part of a close relationship. The challenge—which can make the difference between a lasting, satisfying partnership and one that combusts—is figuring out how to manage conflict constructively.
Behind shipping delays and soaring prices are workers still at mortal risk of COVID-19.
At this point, the maddeningly unpredictable Delta variant has changed the expected course of the coronavirus pandemic so much that it can be hard to know exactly what you’re waiting for, or if you should continue waiting at all. Is something like before-times normalcy still coming, or will Americans have to negotiate a permanently changed reality? Will we recognize that new normal when it gets here, or will it be clear only in hindsight? And how long will it be before you can buy a new couch and have it delivered in a timely manner?
Somehow, that third question is currently just as existential as the first two. Everyday life in the United States is acutely dependent on the perpetual motion of the supply chain, in which food and medicine and furniture and clothing all compete for many of the same logistical resources. As everyone has been forced to learn in the past year and a half, when the works get gummed up—when a finite supply of packaging can’t keep up with demand, when there aren’t enough longshoremen or truck drivers or postal workers, when a container ship gets wedged sideways in one of the world’s busiest shipping lanes—the effects ripple outward for weeks or months, emptying shelves and raising prices in ways that can seem random. All of a sudden, you can’t buy kettlebells or canned seltzer.