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 book tour has prompted some poignant responses, including this one from a reader who contacted me via a Twitter direct message. She had just watched me on TV:
You were talking about the time you were too busy working and that you missed out on family time. My 14-year-old son fell off a cliff at YMCA camp in 1987. It never goes away.
I live a different life now—most days are normal. But, sometimes thoughts pop in and it’s as though not one day has passed. The morning of your interview, I was thinking of the ways I could have been a better mother. I was regretting yelling at him the night before he left for camp because he didn’t do something I told him. We had raised money for him to go to camp, and here I was 28 years later, angry with myself because I had told friends (sort of kiddingly) that I needed a break from him and please donate so I could have a week to myself. I think I used the word, “help me get rid of him.” I cried that morning and basically beat myself up.
Then I heard you saying similarly themed comments about regrets. I know we know things, but sometimes just need to hear someone else say it. I realized that it’s just because my son is gone, and I can’t take a trip or make it better, but I’m no different than you or any other parents.
I had no idea how to respond. With shaking hands, I typed into my IPhone:
Wow. You just gave me a chill. You got me crying. Please don’t beat yourself up. Great moms need a break from their dang kids—and great moms sometimes outlive their kids. He’s still with you. Hang on to that—and not the guilt. Warmest, Ron.
I wish I could have done better. I wish I had the words for her. Because she didn’t say her son was autistic, I wasn’t sure at first whether her note belonged in this thread. But it does. We all struggle with the questions haunting that mom: Am I a good parent?
Another reader, in an email, discusses his guilt and anxiety, describing himself as a father of an autistic five-year-old boy long misdiagnosed by medical professionals:
Learning that Elliot is on the spectrum was a heart-rending relief. All your concerns and suspicions that were waved off by others turning into a terrible validation that you’re not just neurotic or impatient and you really do know your own child well enough to tell that something is wrong. We are fortunate to have an excellent program in our district that he has blossomed in. After six months in his specialized class, he has been spending half days in a traditional preschool setting and half with his therapists. This fall he will be going to kindergarten and has been placed in full day program much like now only with more emphasis on transitioning him. We’re hopeful.
His boy sounds a lot like mine. Tyler, now 18, has a brilliantly unique sense of humor that helps him cope, and even connect.
For a while, as a joke, we’d show him his name and ask what it said. He would happily answer “Elliot!” I’d smile and mischievously say, “Or maaaaybe... E-Lye-Oat”—intentionally mispronouncing it. He’d laugh and say “Elliot!” I’d respond with “Or maaaaybe...” and we’d go in a few circles.
One day I was getting him a yogurt and said “Or maybe Elliot should get broccoli!”
Elliot smiled and said, “Elliot gets yogurt, E-Lye-Oat can get broccoli!” He laughed, grabbed his treat and ran off.
I was stunned that my son had turned the mispronunciation of his name into a joke about shoving broccoli off onto an alter ego I had created. Those are the times that make you happy, proud and hopeful. I know that being smart will offer obvious advantages in life, but I think it’s his personality that will help him get the chance to show what else he has to offer.
Like Tyler’s family, the people who love Elliot the most had a hard time understanding him—or how to help him—until the diagnosis.
The rest of my family has been supportive although my mother frets constantly about Elliot still being in pull-ups. He has trouble understanding his body and when he needs to use the bathroom. We’re working on it and his therapists are working on it. And talking to the assistant principle at his school next year, she seemed optimistic, based on previous students, that Elliot will pick it up.
It’s an obvious source of worry that he will be teased for it, but it’s disheartening to visit the family with a list of accomplishments Elliot had made and have it boil down to “But is he potty trained yet?” as though the time he wrote out the alphabet in shaky letters alone in his room and called me in to see or how we’ve been able to retire all the various sippy cups because he’s increasingly capable and confident with his small cups means little if he’s not in underwear. I’ve explained this to her and she’s properly chastened each time ... until the next time we talk.
The father attached a picture that Elliot drew. The boy likes robots and, one morning, his dad drew one for him. Elliot picked up a marker and copied it—the first actual representative thing the father had seen him draw. The paper is crumpled because Elliot carries it with him, telling anyone who’d listen, “This is a picture about robots. A daddy robot and an Elliot robot.”
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.”
People who refuse to get the COVID-19 vaccine will have higher health-care costs. The rest of us will foot the bill.
Imagine it’s 2026. A man shows up in an emergency room, wheezing. He’s got pneumonia, and it’s hitting him hard. He tells one of the doctors that he had COVID-19 a few years earlier, in late 2021. He had refused to get vaccinated, and ended up contracting the coronavirus months after most people got their shots. Why did he refuse? Something about politics, or pushing back on government control, or a post he saw on Facebook. He doesn’t really remember. His lungs do, though: By the end of the day, he’s on a ventilator.
You’ll pay for that man’s decisions. So will I. We all will—in insurance premiums, if he has a plan with your provider, or in tax dollars, if the emergency room he goes to is in a public hospital. The vaccine refusers could cost us billions. Maybe more, over the next few decades, with all the complications they could develop. And we can’t do anything about it except hope that more people get their shots than those who say they will right now.
The U.S. stumbled early in the pandemic, but the vaccine rollout could reboot the country’s image.
Every so often, an emerging technology changes the global balance of power, alters alliances, and shifts the relationships among nations. After World War II, nuclear weapons overthrew all of the existing geopolitical paradigms. The countries that got the bomb were considered global powers; countries that did not have it sought it, so that they could be considered powerful too.
Now a different technology is shifting global politics: the coronavirus vaccines—or, quite possibly, vaccines more broadly. Unlike nuclear weapons, vaccines don’t have the potential to end life on Earth, and their production and distribution will never require rigid rules to limit who gets them. Indeed, the international institutions being created to govern vaccine distribution are designed to promote proliferation, not restrict it. Nevertheless, global politics will be shaped by the vaccines, as will domestic politics in some countries, and in ways that might outlast this particular pandemic.
By the early 2040s, Trump-appointed chief judges will simultaneously sit atop nearly every appeals court in the country.
The Trump presidency may be over, but the Trump era has only just begun—at least when it comes to influence over the nation’s courts. Measured solely by the number of judges he appointed, Donald Trump’s impact is staggering: 234 judges, including 54 powerful appellate judges, almost one out of every three. By comparison, President Barack Obama appointed 172 judges (30 of them appellate) in his first term, while George W. Bush managed 204 (35 appellate). But Trump will have an even greater influence than this measurement suggests. That is because his judges won’t reach the apogee of their power until the early 2040s, when Trump-appointed chief judges are on track to simultaneously sit atop nearly every appeals court in the country.
In some cases, “Dear Therapist” columns help us understand a situation from another person’s point of view; in others, they give us the language we need to name a situation.
For this month’s look-back at “Dear Therapist” columns, I’ve decided to turn not to a specific theme, but to a handful of columns that have been reader favorites over the years.
Rereading them, I understand why. Though the topics they cover are disparate—among them the loneliness of singledom, the shame brought on by abuse, the difficulties of extended family—each does something that I think of as typical Lori: providing readers (and the letter writers themselves) with a whole new framework for thinking about a problem.
One letter, to a woman who has a troubled relationship with her sister-in-law, stands out to me as paradigmatic. “Unfortunately, I can’t stand her,” the letter writer says. “Everything about her rubs me the wrong way. She sees the world in black and white, while I see infinite shades of gray.” How should she build a relationship with someone she so detests?
Workers are on the verge of going bonkers with their PTO.
Here’s a cool trick for blowing any American’s mind. Tell us that in France, so many boulangeries shut down for vacation every summer that it can be tough to snag a baguette. Bakers aren’t the only ones who get time off. In August, up to half of the country’s salaried employees have been known to take at least a full week off from work. Half!
Americans are good at lots of different things, but going on vacation is not one of them. Every year in parts of Europe, summer turns into a mini-sabbatical. In Norway, during the tradition of fellesferie, the nation simply shuts down for a few weeks of July fun. In Italy, so many people take the last two weeks of August off that Rome’s transit system runs on a reduced “festivi” schedule. Meanwhile, guess which industrialized country is the only one that doesn’t guarantee time off to its workers? Guess which country left 768 million vacation days on the table in 2018? Guess which country … arghhhhhhhh.
The long marriage between Republicans and big business hits a rough patch.
In August 2011, Mitt Romney was campaigning for president at the Iowa State Fair and explaining why he didn’t want to raise taxes on the American people when a heckler shouted that corporations should pay a greater share of taxes.
“Corporations are people, my friend,” Romney replied. He was jeered in the crowd, and jeered even more by Democrats afterward. “I don’t care how many times you try to explain it,” Barack Obama said on the stump. “Corporations aren’t people. People are people.”
Ten years later, there’s been a strange inversion. Corporations, responding to pressure from Democrats, are acting more like people—using their clout to weigh in on legislation and social-justice issues that don’t immediately affect their taxes or bottom line. Republicans, meanwhile, are furious at the idea that companies might act this way.
A deadlier and more transmissible variant has taken root, but now we have the tools to stop it if we want.
Across the United States, cases have started rising again. In a few cities, even hospitalizations are ticking up. The twists and turns of a pandemic can be hard to predict, but this most recent increase was almost inevitable: A more transmissible and more deadly variant called B.1.1.7 has established itself at the precise moment when many regions are opening up rapidly by lifting mask mandates, indoor-gathering restrictions, and occupancy limits on gyms and restaurants.
We appear to be entering our fourth surge.
The good news is that this one is different. We now have an unparalleled supply of astonishingly efficacious vaccines being administered at an incredible clip. If we act quickly, this surge could be merely a blip for the United States. But if we move too slowly, more people will become infected by this terrible new variant, which is acutely dangerous to those who are not yet vaccinated.
Many Americans would recognize the dilemma of Reuven, an anonymous Yiddish-magazine editor who is anguished by his community’s moral failures in the pandemic.
A few weeks ago, Reuven went to a party. It was indoors. No one wore masks. No one who attended was in any rush to get a vaccine. Reuven and his wife were uncomfortable. But if they hadn’t gone, his relatives would have felt as if he were “judging them” for gathering, “and they judge me back,” he told me. “I have to weigh my options.” Reuven’s parents and siblings roll their eyes when he constantly talks about their risk of getting sick, just as he did at the beginning of the pandemic. He’s meshige far corona, they say. Crazy about the virus.
The Yiddish-speaking, Hasidic Jewish world that Reuven inhabits is intensely communal. Men crowd into synagogues in his Brooklyn neighborhood to pray together three times a day—morning, afternoon, and night. Many large families share small apartments or rowhouses, where they stage elaborate meals each week on Shabbat and during the Jewish calendar’s many holidays, filling their homes with scrambling kids and occasionally the cousins and uncles who live just blocks away. Orthodox Jews in New York are distinctly vulnerable to the virus for many of the same reasons low-income Black and Latino neighborhoods have been hit hard: crowded living spaces, lack of public-health infrastructure, jobs that require in-person work. For many people in these communities, sealing themselves inside their apartments for a year simply wasn’t possible. Reuven knows this; he doesn’t fault the Hasidim for the way they live. “We shouldn't be judged merely on the fact that we feel that some forms of gatherings are important to us, even during a pandemic,” he told me. “What’s so disappointing and depressing, and even shocking, is the fact that we chose to do all this with zero precautions, for which there is absolutely no excuse.”
And yet it took a 19th-century naturalist, a 21st-century grad student, and some Brazilian fishers to crack the mystery.
The crinkly form of a small, dried octopus lay on a desk in Washington, D.C., 170 years ago. The curious cephalopod, which had been collected more than 7,000 kilometers away in Brazil, was one of thousands of creatures obtained by researchers on the United States South Seas Exploring Expedition, which had taken explorers, navy men, merchants, and scientists on an epic voyage around the Pacific Ocean. The project took years, and some preserved specimens—including a few small-headed red octopuses with white, leopard-like spots that had been picked up from a fish market in Rio de Janeiro, and from local fishers—eventually wound up with experts, such as American naturalist Augustus Addison Gould, for scientific analysis.
When CBS first placedAll in the Family on the air, on January 12, 1971, it irrevocably transformed television. After a shaky first season in which it struggled to find an audience, the show prospered, rising to become No. 1 in the ratings for five consecutive years, a record unmatched at the time. All in the Family commanded national attention to a degree almost impossible to imagine in today’s fractionated entertainment landscape. Archie Bunker’s catchwords—stifle, meathead, and dingbat—all became national shorthand. Scholars earnestly debated whether the show punctured or promoted bigotry.
Its success not only helped lift The Mary Tyler Moore Show, M*A*S*H, and the other great topical comedies of the early 1970s, but also cemented the idea that television could be used to comment meaningfully on the society around it—an idea the networks had uniformly rejected throughout all the upheaval of the 1960s. That legacy—the determination to connect the medium to the moment—reverberates through shows as diverse as Fleabag, Atlanta, Breaking Bad, The Wire, and countless others. The night that CBS initially aired All in the Family was the first step on the road toward the Peak TV that we are living through today.