Reporter's Notebook

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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'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:

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?

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.”

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 or or or

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.

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.