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?

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.”

Love that boy, I thought.

“Can’t help but love him,” the father wrote.

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: hello@theatlantic.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.

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: hello@theatlantic.com.

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?