Notes
First thoughts, running arguments, stories in progress
The Brilliance of Autistic People: Your Stories
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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.

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The Bond Between Animals and the Autistic

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.

If you’re autistic and can personally attest to this connection, please send us a note.

***

To What Extent Should We Train Autistic Kids to Be Normal?

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:

(Here’s a much more contemporary video of an ABA session.)

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.

The Battle Over a Controversial Method for Autism Communication, Cont'd

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.”

Can’t Help But Love Him

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 was a good mom.

She ended the note with a reference to the post comparing autistic children to dandelions: “I am going to try to plant a dandelion in the kitchen.”

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?

'Much Richer Inner Lives Than We’ll Ever Understand'

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:

‘Love That Boy,’ by Ron Fournier

The cover of Ron Fournier’s new book.

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.

Are Subminimum Wages for the Disabled Ever a Good Thing? Cont'd

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.

Are Subminimum Wages for the Disabled Ever a Good Thing?

A reader emailed me a reasonable dissent over my piece cheering Hillary Clinton’s push to end subminimum wages for disabled workers:

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.

    What Does It Mean to 'Look Autistic?' Cont'd

    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.”

    Happy in Her Own Way

    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.

    'My Wife's Three Dandelions'

    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.

    My Little Dandelion, Cont'd

    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.

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