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.
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.
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.)
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.
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.
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.
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.
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?
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.”
Jim Elliott—a long-time reader contributor to Notes and one of the core members of Ta-Nehisi’s old Horde—just wrote a long commissioned piece for The Atlantic criticizing “facilitated communication,” which purports to enable people with severe autism to communicate through a “facilitator.” Here’s Jim:
[Dillan Barmache, a nonverbal teen with autism, is shown in the above video] typing into a device held by a woman, his “communication partner,” who gently pushes the keyboard back against his finger as he types. This pressure, which allegedly helps him to organize his sensory system and motor planning, is a hallmark of Rapid Prompting Method (RPM), what some experts argue is a form of “facilitated communication”—a technique that persists in spite of overwhelming evidence that discredits it. Such partners—alternatively called “facilitators,” among other terms—are not akin to translators, who merely take on valid means of communication and frame it into another, but are the means of communication itself.
A reader, Lisa, responds to Jim’s piece:
I think this is a giant over simplification of RPM. It’s primarily a method of education. It’s what drew me to it for my son, and it’s the only thing I could find that suggested he could have a rich education, and an age appropriate one at that. I think parents find it and keep doing it because it works and because they know that their kids aren’t empty thoughtless shells, that there’s more to them and they want more for them than learning the same preschool level skills over and over again year after year in ABA [applied behavior analysis] and special education.
I think professionals will come around eventually when they start to realize how much motor challenges are a part of non-verbal autism. Until then, parents will have to decide for themselves, trust their gut, and keep moving forward.
Jim replies to Lisa:
In the words of creator Soma Mukhopadhyay, RPM “is academic instruction leading towards communication for persons with autism.” The method, which is highly expensive and largely secretive, relies upon auditory and physical prompts to provoke a response from the autistic student—hallmarks of derivations of facilitated communication. Rather than address the authorship concerns that arise from prompting, Lisa instead relies upon a classic evasion of FC advocates: That denying the validity of communication through RPM renders her child an “empty thoughtless shell.”
ABA—the umbrella term for applied behavior analysis and most often used as a shorthand for the “Lovaas method" or “discrete trial”—spent a great deal of time as the dominant method for teaching discrete tasks to children with autism. The method formed the basis for a variety of derivations, but it remains popular in itself because it is easy and cheap to do. Interventionists do not even require a college degree. (ABA originally called for a large number of instructional hours.)
In my experience, “discrete trial” has diminishing returns. Of the autistic students I’ve worked with, maybe a third of them experience success through the method, and maybe a third of those are able to generalize the skills they do learn to multiple environments. The problem here is that many behaviorists have decided that because some forms of augmentative and alternative communication (AAC) share hallmarks of ABA (such as the Picture Exchange Communication System), these behaviorists think they can replace speech-language pathologists and incorporate these methods into their lessons, often without training or consultation with a licensed speech therapist. I can certainly appreciate parents looking for alternatives to this form of ABA; its utility starkly diminishes after about mid-elementary school age.
Which leads to the problem of FC’s co-option of AAC. AAC is, at its heart, a variety of supplemental communication methods that are clinically testable. They are not meant to replace or supplant other forms of communication. They are tools designed to foster independent communication in a manner comprehensible to people in their daily lives.
Jim also went back and forth here with another reader, Arthur, who says he has “extensively read up on prompting—for over 20 years concerning FC and for over 35 years since I did ABA with my own son starting in June 1980 (but stopping in August 1985 after he was severely traumatized by ABA).”
One more reader for now:
I am a Speech Language Pathologist from Australia and I can say with complete conviction that facilitated communication with people with autism is completely and utter nonsense. Not only is it scientifically invalid, when you really think about it, it is completely illogical.
In my experience, people who use facilitated communication can apparently spell near perfectly. However, if that were true, they’d be the best spellers and writers in a whole cohort of people diagnosed with intellectual disability and autism. I know FC proponents like to argue that the person was misdiagnosed in the first place, but when you think about it, that can’t be true, can it? Why would a large percentage of people with autism grow to have diagnosed intellectual disabilities (many are verbal) whilst these non-verbal people don’t?
Secondly, non-verbal people have so many opportunities to show their literacy skills. FC “users” inevitably end up saying they learned to read and write from street signs and ads and not in school. This is not how literacy is learned and is absolutely impossible.
There are many people who say little, but can write completely independently. If they have an intellectual disability, it is rarely conversational. Literacy and communication are not necessarily connected for some people. Just because someone can spell well, doesn't mean they can construct sentences that flow just like a conversation. Yet we never hear of FC people just typing movie quotes or the names of all the DVDs they have at home.
Organisations that continue to advocate for FC should be ashamed. True acceptance and understanding of non-verbal people should come from appreciating the alternative ways that they communicate, not trying to cling to the desperate hope that we are actually all the same.
Are you someone with first-hand experience with facilitated communication? Please drop us a note to share your personal experience, professional expertise, or disagreements with Jim’s piece: email@example.com. Update from a reader:
RPM stands for Rapid Prompting Method. The second word in the method states exactly what RPM is; non-verbal people with autism are prompted by a facilitator. As a teacher of students with autism, I have come across this method and find it to be junk science. If a person cannot touch a letter board independently, then they cannot communicate. Unfortunately, there are parents who are desperate and truly believe that their child can communicate using RPM.
I had the opportunity to observe Soma (the inventor of RPM) work with a former student of mine who at best worked at the level of a two year old. Soma prompted him all the way, but managed to convince his mom to hire a facilitator to work with him. The facilitator charges an obscene amount per hour and somehow still has the mom believing that her son is now communicating by spelling and comprehending reading at a high school level when being read to. The truth is her son cannot even follow a one-step direction.
Soma is a fraud and so are the facilitators, and they need to be stopped from taking these naive parents’ money. They are preying on parents who have the most severely disabled children and giving them false hope.
A new piece by Elizabeth DeVita-Raeburn on the use of “applied behavioral analysis” (ABA) is eliciting a lot of strong response from readers. ABA—“the longest-standing and best-established form of therapy for children with autism,” according to DeVita-Raeburn—was developed out of the behaviorist school (think B.F. Skinner and his use of rats and food pellets); it breaks down desirable behaviors into discrete steps, rewarding a child for completing each step along the way and discouraging errant behaviors.
But the popular method is controversial among a subset of autistic adults, advocates, and parents of autistic children:
They contend that ABA is based on a cruel premise—of trying to make people with autism ‘normal,’ a goal articulated in the 1960s by psychologist Ole Ivar Lovaas, who developed ABA for autism. What they advocate for, instead, is acceptance of neurodiversity—the idea that people with autism or, say, attention deficit hyperactivity disorder or Tourette syndrome, should be respected as naturally different rather than abnormal and needing to be fixed. ...
[Lovaas’] approach discouraged—often harshly—stimming, a set of repetitive behaviors such as hand-flapping that children with autism use to dispel energy and anxiety. The therapists following Lovaas’ program slapped, shouted at, or even gave an electrical shock to a child to dissuade one of these behaviors. The children had to repeat the drills day after day, hour after hour.
This illustrative video of Lovaas methods from 1981 does not contain slapping or electrical shock, but it does display a range of other techniques such as stern repetitive directives, food reinforcement, and the stopping of stimming:
In the comments section of DeVita-Raeburn’s piece, Suzanne Letso, the co-founder and CEO of Connecticut Center for Child Development, defends ABA against criticism, especially regarding its roots: “ABA programs have evolved and improved since the early work of Lovaas and others.” She continues:
Unfortunately, this article is very misleading about what ABA is and is not. ABA programs utilize positive reinforcement, not aversive practices, to change behavior. ABA programs customize intervention for each learner and make learning fun, not punishing.
ABA is not synonymous with DTI [Discrete Trial Training—a method of teaching in simplified and structured steps]. ABA is not just a treatment for autism. ABA is not a package of static programs. People interested in learning more about what ABA is and how it can be utilized … please go to apbahome.net or bacb.com or casproviders.org or balcllc.org
Another reader also attests to the evolution of ABA since the Lovaas days:
I’ve worked with hundreds of kids and adults on and off the spectrum for over 15 years using the principles of ABA; “unrelenting drills” were never used. I’ve taught kids skills such as sledding with their peers in their neighborhoods, eating at a restaurant for a grandma’s birthday, and clapping their hands to get attention instead of punching somebody or themselves. This article also shines little light on the thousands of studies that support ABA interventions in schools, homes, work places, and communities.
A parent of an autistic child is on the same page:
We have my 6-year-old daughter in ABA therapy 20-30 hours a week. She’s improved immensely, and they don’t use any aversives.
They do, however, keep insisting that she follow directions, but it’s more in the sense of repeating the same command over and over again in a consistent tone until it sinks in that she’s not going to get her way by throwing a fit. (When we first started, she was 3 and would sometimes scream, hit, or run away if the therapist wanted her to stay in her room, pick up her toys, of follow some other direction.)
For a while, food was used as a positive reward, but she was never rewarded like this when she was hungry. (Now, the reward is watching Frozen videos or doing a preferred craft for 10 minutes.) Her speech has improved immensely and she’s able to successfully engage with her peers and school and out around town (the park)—something I never thought would happen.
Maybe a good way to think about this would be to compare old-style ABA therapy to standard parenting practices from the same time period. Most of the practices from that era on both fronts would be considered abusive now. Hitting your kids with a belt, sending them to bed without dinner, etc. were all common at that time.
We try to shape our children, neurotypical or not, to be aware of social norms/behaviors. That doesn't mean we don’t value who they truly are. Well-applied ABA therapy just tailors that approach to an autistic child’s needs.
One more reader, Hannah, makes a distinction about how ABA can and should be used:
Most of the criticism here seems to be directed at ABA therapy targeted at social skills. I can understand this, though I’m not sure that the people regretting their treatment would actually have been better off without that treatment. Still, impossible to say.
But ABA is also teaching children to eat and communicate and use the bathroom and get dressed. It’s teaching them the basics of independent living.
As someone who works in a home for adults with various types of disabilities, including several women who are recipients of ABA therapy, while I feel somewhat uncomfortable with several aspects of how therapy is done, I still see it transforming people who are functioning at a much lower level than the people in this article who will never in a million years be “neurotypical” but who, by learning life skills, can live a life with dignity and with more independence than otherwise. It also makes it much easier for the caregiver as well (though that may sound heartless).
Bottom line: Purely social ABA for high-functioning people with autism may be potentially harmful, but don’t throw away the baby with the bath water.
If you have any firsthand experience with ABA and want to shed some new light on this discussion, please let us know: firstname.lastname@example.org.
A reader presents a really interesting theory about autism:
The ABA treatment [discussed earlier by readers] dates back to a time when psychologists theorized that autistic people could not readily interpret social cues because their empathy was too low, owing to defects in their brains. Today there is a challenge to that assumption: They may have *too much* empathy, and so social interactions are too loud and frightening, causing them to withdraw.
Which is true? The answer should drive treatment approaches. It’s quite possible that the Skinner approach works superficially to produce specific desired responses but isn’t at all optimum.
There is a clue supporting the “too much empathy” theory. Autistic kids and adults tend to do very well in socializing with cats, dogs, horses, etc. Interacting with animals brings out more advanced socialization skills, which they can then use, to some extent, with other humans. It appears that they perceive less social threat from animals, from whom unconditional love towards kindly humans is typical. If autistic people instead have low empathy, this result ought to be very unlikely.
Too much light will blind you. Too much sound will deafen you. And too much empathy may be responsible for autistic withdrawal and a reduced capacity for interpreting social cues. This needs to be nailed down before we should be eager to grant blanket approval to ABA therapy. Skepticism and critical thinking are warranted.
For more reading, here’s a helpful post from the blog Aspertypical, written by a psychology grad student with Aspergers, called “Autistic Man’s Best Friend: The connection between pets and autism.” She in part points to the work of arguably the most famous American with autism, Temple Grandin, who has particularly strong insight when it comes to the animal connection:
Professor of animal science Dr Temple Grandin may be able to shed some light on this connection. In her paper ‘Thinking the Way Animals Do’, she describes how her autism makes it easier for her to understand animals, as her thinking processes are much like an animal’s. She explains how she often thinks in images, not language, much like an animal does. A horse trainer once told her that horses don’t think, they just make associations, to which she concluded that if making associations isn’t thinking, then she does not think either. It is true that those with autism often make strong associations to negative events, developing strange fears; the colour red, for example, is commonly associated with negative feelings for those with autism.
Finally another common factor between autistic man and animal is that fear is often the main emotion; both are often fearful of high pitched noises and become overwhelmed easily. So do people with autism prefer to be with animals and are more empathic towards them than humans because they understand their mental processes better?
The vice president needs to win over the voters who approve of Biden, but not of her performance.
“I think it’s okay if we shake hands,” Kamala Harris told me last week. The vice president came out from behind her West Wing desk to greet me, her eyes smiling above her face mask. The last time I was in this particular office, the occupant was Mike Pence. And had it not been for a few state election officials who withstood the pressure to ignore the results, Harris’s desk would still belong to him.
Donald Trump’s most extreme supporters hold out hope that the election results will somehow be overturned, and that Trump will resume office this month. Three days before Harris and I met, police officers testified before Congress about their hellish clash with Trump supporters who swarmed the U.S. Capitol in an attempt to stop the certification of the election on January 6. One Black officer, Harry Dunn, spoke about repeatedly being called the N-word by rioters. What will the White House do to stop the insurrectionists from trying again? I asked Harris.
The creative class was supposed to foster progressive values and economic growth. Instead we got resentment, alienation, and endless political dysfunction.
This article was published online on August 2, 2021.
The dispossessed set out early in the mornings. They were the outsiders, the scorned, the voiceless. But weekend after weekend—unbowed and undeterred—they rallied together. They didn’t have much going for them in their great battle against the privileged elite, but they did have one thing—their yachts.
During the summer and fall of 2020, a series of boat parades—Trumptillas—cruised American waters in support of Donald Trump. The participants gathered rowdily in great clusters. They festooned their boats with flags—American flags, but also message flags: Don’t Tread on Me, No More Bullshit, images of Trump as Rambo.
The women stood on the foredecks in their red, white, and blue bikinis, raising their Pabst Blue Ribbon tallboys to salute the patriots in nearby boats. The men stood on the control decks projecting the sort of manly toughness you associate with steelworkers, even though these men were more likely to be real-estate agents. They represent a new social phenomenon: the populist regatta. They are doing pretty well but see themselves as the common people, the regular Joes, the overlooked. They didn’t go to fancy colleges, and they detest the mainstream media. “It’s so encouraging to see so many people just coming together in a spontaneous parade of patriotism,” Bobi Kreumberg, who attended a Trumptilla in Palm Beach, Florida, told a reporter from WPTV.
Police unions aren’t usually bashful about defending officers, but they’ve been conspicuously subdued in discussing the January 6 attacks.
On Tuesday, the National Fraternal Order of Police decided to “clear up confusion” about its position on the January 6 assault on the Capitol by enraged Donald Trump supporters. “Those who participated in the assaults, looting, and trespassing must be arrested and held to account,” it said in a statement. “We continue to offer our support, gratitude, and love to our brothers and sisters in law enforcement who successfully fought off the rioters, and we will be with them as they grieve and recover, however long that may take.”
The FOP does not often have to clarify its position on matters of public concern; the organization is usually rather strident in expressing its views. For example, in 2016, the FOP demanded that Walmart cease selling Black Lives Matter T-shirts. It denounced Nike for its ad campaign involving Colin Kaepernick, who was purged from the NFL for protesting police misconduct. If you go to the FOP’s Twitter feed, you can find a steady stream of clips from conservative outlets such as Newsmax and Fox News showing FOP representatives attacking policies like bail reform, slamming Democratic elected officials, and blaming Black-rights activists for the recent rise in homicides. These posts are interspersed with tributes to homicide victims, attacking “rogue prosecutors,” “activist judges,” and “progressive policies” for their deaths.
A pandemic puppy can increase your well-being—if you choose one for the right reasons.
“How to Build a Life” is a weekly column by Arthur Brooks, tackling questions of meaning and happiness.
Despite early-pandemic predictions of a deep, prolonged recession, much of the American and world economies are on fire. Housing in particular is booming; house prices increased more than 19 percent from May 2020 to May 2021. Used cars have surged in price by more than 21 percent over the past year, and air travel has roared back so strongly that the nation is facing a shortage of pilots. But all of that pales in comparison with the puppy bubble.
According to PuppySpot (a web-based dog broker), the price of purebred puppies rose by 36 percent in 2020. About 12.6 million U.S. households got a new pet last year, after the pandemic was declared in March, according to the American Pet Products Association. In addition to purchases and adoptions, dognappings have increased by “epidemic” proportions, according to British police: In London, for example, they were up 250 percent in 2020.
In the film, edgy shock value meets Hollywood sentimentality, resulting in a superhero movie unlike most others in the genre.
The Suicide Squad might seem like a typical superhero movie at first: Yet another group of powerful comic-book characters is thrown together to fight insurmountable odds on a mysterious, deadly mission. Audiences will recognize a few faces from the last (horrendous) Suicide Squad film, such as that of the chipper criminal Harley Quinn (played by Margot Robbie). But much of the fun comes from trying to puzzle out who the newcomers are, including a costumed hunk named T.D.K. (Nathan Fillion). When someone asks him what T.D.K. stands for, he replies, “It doesn’t stand for anything. It’s just my name. It stands for me.” “Your name is … letters?” “All names are letters,” another character shoots back.
Customers were this awful long before the pandemic.
In May, I stood in the rear galley of an airplane and watched as a line formed to berate the flight attendant next to me. We were at a gate at LaGuardia, our flight half an hour delayed, and the air inside the cabin was acrid with the aromas of anxiety sweat and bags of fast food procured at the gate. Impatient passengers squeezed past others hoisting carry-ons into overhead bins to jockey for position in the complaining queue, lodging grievances largely about things over which a flight attendant would have obviously little control: the airline’s decision to sell middle seats, the disruptive wait, the insolent tone of a different flight attendant.
I was tucked inside one of the tiny spaces usually reserved for the flight crew, because I had arrived at my assigned seat to find a man who had no intention of getting up. He gave nothing in the way of an explanation; instead, he stared up at me blankly, as though he had never before encountered the concept of assigned seating. The flight attendant had noticed our stalemate and offered to roust the man from my seat, but the situation felt too combustible to me, and 25C like too stupid a hill on which to die. The attendant said he’d find me another if I’d just wait in the back.
Persistent hype around mRNA vaccine technology is now distracting us from other ways to end the pandemic.
At the end of January, reports that yet another COVID-19 vaccine had succeeded in its clinical trials—this one offering about 70 percent protection—were front-page news in the United States, and occasioned push alerts on millions of phones. But when the Maryland-based biotech firm Novavax announced its latest stunning trial results last week, and an efficacy rate of more than 90 percent even against coronavirus variants, the response from the same media outlets was muted in comparison. The difference, of course, was the timing: With three vaccines already authorized for emergency use by the U.S. Food and Drug Administration, the nation is “awash in other shots” already, as the The New York Times put it.
Beyond limiting the coronavirus’s flow from hot spots to the rest of the country, allowing only vaccinated people on domestic flights will change minds, too.
When you go to the airport, you see two kinds of security rules. Some apply equally to everyone; no one can carry weapons through the TSA checkpoint. But other protocols divide passengers into categories according to how much of a threat the government thinks they pose. If you submit to heightened scrutiny in advance, TSA PreCheck lets you go through security without taking off your shoes; a no-fly list keeps certain people off the plane entirely. Not everyone poses an equal threat. Rifling through the bags of every business traveler and patting down every preschooler and octogenarian would waste the TSA’s time and needlessly burden many passengers.
The same principle applies to limiting the spread of the coronavirus. The number of COVID-19 cases keeps growing, even though remarkably safe, effective vaccines are widely available, at least to adults. Many public agencies are responding by reimposing masking rules on everyone. But at this stage of the pandemic, tougher universal restrictions are not the solution to continuing viral spread. While flying, vaccinated people should no longer carry the burden for unvaccinated people. The White House has rejected a nationwide vaccine mandate—a sweeping suggestion that the Biden administration could not easily enact if it wanted to—but a no-fly list for unvaccinated adults is an obvious step that the federal government should take. It will help limit the risk of transmission at destinations where unvaccinated people travel—and, by setting norms that restrict certain privileges to vaccinated people, will also help raise the stagnant vaccination rates that are keeping both the economy and society from fully recovering.
Why targets of deliberate deception often hesitate to admit they’ve been deceived
Something very strange has been happening in Missouri: A hospital in the state, Ozarks Healthcare, had to create a “private setting” for patients afraid of being seen getting vaccinated against COVID-19. In a video produced by the hospital, the physician Priscilla Frase says, “Several people come in to get vaccinated who have tried to sort of disguise their appearance and even went so far as to say, ‘Please, please, please don’t let anybody know that I got this vaccine.’” Although they want to protect themselves from the coronavirus and its variants, these patients are desperate to ensure that their vaccine-skeptical friends and family never find out what they have done.
Missouri is suffering one of the worst COVID-19 surges in the country. Some hospitals are rapidly running out of ICU beds. To Americans who rushed to get vaccinated at the earliest opportunity, some Missourians’ desire for secrecy is difficult to understand. It’s also difficult to square with the common narrative that vaccine refusal, at least in conservative areas of the country, is driven by a lack of respect or empathy from liberals along the coasts. “Proponents of the vaccine are unwilling or unable to understand the thinking of vaccine skeptics—or even admit that skeptics may be thinking at all,” lamented a recent article in the conservative National Review. Writers across the political spectrum have urged deference and sympathy toward holdouts’ concerns about vaccine side effects and the botched CDC messaging about masking and airborne transmission early in the pandemic. But these takes can’t explain why holdouts who receive respect, empathy, and information directly from reliable sources remain unmoved—or why some people are afraid to tell their loved ones about being vaccinated.
It feels like every company and organization I’ve ever transacted with sends me email every week. Some every day, even. Some multiple times a day. My mortgage broker emails on my birthday and holidays. So does my dentist. Certain retailers email much more often. The home-furnishings company Room & Board is one of them, hoping I’ll upgrade to a lounge-worthy sectional or entreating me to meet artisanal glassblowers from Minnesota. In the past week alone, the clothing retailer Bonobos messaged me nine times, hawking Riviera shorts, trending shirts, and even a chino they promise will “bring out your best self.”
It’s ridiculous. Technically, I asked for these emails. I wrote loans with my mortgage broker. I’ve bought furniture from Room & Board and pants from Bonobos. And, yes, I’m aware that I can unsubscribe or block them at any time. But why so many emails? How is it possible that customers would find this appealing?