Unlocking
Emily’s World

Cracking the code of silence in children with autism who barely speak

by Chris Berdikphotos by Jackie Ricciardivideo by Devin Hahn

Emily Browne is laughing, and nobody really knows why. The 14-year-old with a broad face and a mop of curly brown hair has autism. She drifts through her backyard in Boston’s Dorchester neighborhood, either staring into the distance or eyeballing a visitor chatting with her dad, Brendan, and her 15-year-old sister, Jennifer, on the nearby patio. That’s where the laughter started—a conversational chuckle from somebody on the patio that Emily answered with a rollicking, high-pitched guffaw. Then another, and another, and another.

Emily is growing up, her father says. She is learning new words in her classroom at Joseph Lee School in Dorchester.

Emily can’t join the conversation. She is among the 30 percent of children with autism who never learn to speak more than a few words—those considered “nonverbal” or “minimally verbal.” Emily was diagnosed with autism at two, but Brendan and his wife, Jeannie, knew something was wrong well before then. “There was no babbling. She didn’t play with anything. You could be standing beside her and call her name, and she wouldn’t look at you,” says her dad. “Emily was in her own little world.”

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“We were worried about Emily from pretty much her 12-month checkup….and we had talked with the doctor about the fact that she didn’t make any sounds. She didn’t really pay attention to anybody, which seemed a little unusual.”

But why? What is it about the brains of “minimally verbal” kids like Emily that short circuits the connections between them and everyone else? And can it be overcome? That’s the research mission of Boston University’s new Center for Autism Research Excellence, where Emily is a study subject.

Partly because of the expanding parameters of what is considered autism, the number of American children diagnosed with autism spectrum disorder has shot up in recent years, from one in 155 children in 1992 to one in 68 in 2014, according to the Centers for Disease Control and Prevention. And Helen Tager-Flusberg, a BU College of Arts & Sciences professor of psychology who has studied language acquisition and autism for three decades and heads the Autism Center, says minimally verbal children are among the most “seriously understudied” of that growing population.

Helen Tager-Flusberg, a BU College of Arts & Sciences professor of psychology, is the director of the Center for Autism Research Excellence and a leading expert on children with autism who are minimally verbal.

Backed by a five-year, $10 million grant from the National Institutes of Health awarded in late 2012, her team includes researchers and clinicians from Massachusetts General Hospital, Harvard Medical School, Beth Israel Deaconess Medical Center, Northeastern University, and Albert Einstein College of Medicine in New York City. The researchers are focusing on the areas of the brain used for understanding speech, the motor areas activated to produce speech, and the connections between the two. They’ll combine functional magnetic resonance imaging (fMRI), electroencephalography (EEG), and neural models of how brains understand and make speech. The models were developed at BU by Barbara Shinn-Cunningham, a professor of biomedical engineering in the College of Engineering, and Frank Guenther, a professor of speech, language, and hearing sciences at BU’s Sargent College of Health & Rehabilitation Sciences. They’ll also run the first clinical trials of a novel therapy using music and drumming to help minimally verbal children acquire spoken language.

Ultimately, Tager-Flusberg and her colleagues hope to crack the code of silence in the brains of minimally verbal children and give them back their own voices. Getting these kids to utter complete sentences and fully participate in conversation is years away. For now, the goal is to teach words and phrases in a way that can rewire the brain for speech and allow more traditional speech therapy to take hold.

“Imagine if you were stuck in a place where you could not express anything and people were not understanding you,” says Tager-Flusberg, who is also a professor of anatomy and neurobiology and of pediatrics on Boston University’s Medical Campus. “Can you imagine how distressing and frustrating that would be?”

On a hot, muggy morning in late August, Emily’s dad escorts her into the Autism Center on Cummington Mall for a couple hours of tests. It’s part of a sound-processing study comparing minimally verbal adolescents with high-functioning autistic adolescents who can speak, as well as normal adolescents and adults.

The investigation is painstaking, because every study must be adapted for subjects who not only don’t speak but may also be prone to easy distraction, extreme anxiety, aggressive outbursts, and even running away. “[Minimally verbal children] do tend to understand more than they can speak,” says Tager-Flusberg. “But they won’t necessarily demonstrate in any situation that they are following what you are saying.”

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“The study at BU especially was interesting to us because it focused on the kind of autism that Emily has….I know autistic children can behave a certain way—they can be antisocial and so forth—but no one seemed to be addressing the fact that some of these kids can’t communicate.”

That’s obvious in Emily’s first task, a vocabulary test. Seated before a computer, she watches as pictures of everyday items pop up on the screen, such as a toothbrush, a shirt, a car, and a shoe. When a computer-generated voice names one of these objects, Emily’s job is to tap the correct picture. Emily’s earlier pilot testing of this study showed that she understands more than 100 words. But today, she’s just not interested. Between short flurries of correct answers, Emily weaves her head, slumps in her chair, or flaps her elbows as the computer voice drones on—car…car…car and then umbrella…umbrella…umbrella. When one of the researchers tries to get Emily back on task, she simply taps the same spot on the screen over and over. Finally, she gives the screen a hard smack.

The next session is smoother. Emily is given a kind of IQ test in which she quickly and (mostly) correctly matches shapes and colors, identifies patterns, and points out single items within increasingly complicated pictures of animals playing in the park, kids at a picnic, or cluttered yard sales.

Emily is minimally verbal, not nonverbal. “Words do come out of her,” her dad explains. She’ll say “car” when she wants to go for a ride or “home” when she’s out somewhere and has had enough. Sometimes she communicates with a combination of sounds and signs or gestures, because she has trouble saying words with multiple syllables. For instance, when she needs a “bathroom,” her version sounds like, “ba ba um,” but she combines it with a closed hand tilting 90 degrees—pantomiming a toilet flush.

“That’s a handy one,” her dad says. “She uses it to get out of things. When she’s someplace she doesn’t want to be, she’ll ask to go to the bathroom five or six times.”

The first word Emily ever said was “apple” when she was four years old. “We were going through the supermarket, and she grabbed an apple. Said it, and ate it. It was amazing to me,” her dad recalls.

The final item on the morning agenda is an EEG study, in which Emily must wear a net of moist electrodes fitted over her head while she listens to a series of beeps in a small, soundproof booth. The researchers have tried EEG with Emily twice before in pilot testing. The first time, she tolerated the electrode net. The second time, she refused. This time, with her dad to comfort her and a rewarding snack of gummi bears, Emily dons the neural net without protest.

Emily sits with BU Research Assistant Briana Brukilacchio at the Center for Autism Research Excellence and watches one of her favorite movies, Frozen, while participating in a research study.

The point of this study is to see how well Emily’s brain distinguishes differences in sound—a key to understanding speech. For instance, normally developing children learn very early, well before they can speak, to separate out somebody talking from the birds chirping outside the window or an airplane overhead. They also learn to pay attention to deviations in speech that matter—the word “cat” versus “cap”—and to ignore those that don’t—cat is cat whether mommy or daddy says it.

“The brain filters out what’s important based on what it learns,” says Shinn-Cunningham. Some of this sound filtering is automatic, what brain researchers call “subcortical.” The rest is more complicated, a top-down process of organizing sounds and focusing the brain’s limited attention and processing power on what’s important.

EEG measures electrical fields generated by neuron activity in different parts of the brain. “Novel sounds should elicit a larger-than-normal brain response, and that should register on the EEG signal,” Shinn-Cunningham explains. There are 128 tiny EEG sensors surrounding Emily’s head and upper neck. Each sensor is represented as a line jogging along on the computer monitor outside the darkened booth where Emily sits with her dad holding her hand, watching a silent version of her favorite movie, Shrek.

Barbara Shinn-Cunningham, a professor of biomedical engineering at the College of Engineering, has collaborated with Frank Guenther, a professor of speech, language and hearing sciences at BU’s Sargent College of Health & Rehabilitation Sciences, to develop neural models of how brains understand and make speech that will help researchers learn more about children like Emily.

Today’s experiment is focused on the automatic end of sound-processing. A constant stream of beeps in one pitch is occasionally interrupted by a higher-pitched beep. How will Emily’s brain respond? Most of the time, the 128 EEG lines are tightly packed as they move across the screen. However, muscle movements generate large, visible peaks and troughs in the signals when Emily blinks or lolls her head from side to side. Once, just after a gummi bear break, several large, concentrated spikes show her chewing.

Shifts in attention are much more subtle, and the raw data will have to be processed before anything definitive can be said about Emily’s brain. The readout is time-coded with every beep, and the researchers will be particularly interested in the signals from the auditory areas in the brain’s temporal cortex, located behind the temples.

The beep test has six five-minute trials. But, after about twenty minutes, Emily is getting restless. It’s been a long morning. She starts scratching at the net of sensors in her hair. She’s frustrated that Shrek is silent. The EEG signals start to swing wildly. From inside the booth, stomping and moans of protest can be heard. When the booth’s door is opened at the end of the fourth trial, Emily’s eyes are red. She’s crying. Her father and the researchers try to cajole her into continuing.

“Just two more, Emmy,” her dad says. “Can you do two more for daddy?” And Emily answers with a word she can speak, quite loudly. “Noooo!” They call it a day. Emily will return to the center as the experiments move from beeps to words, and they can finish the last two trials then. All in all, it’s been a successful morning. “She did great,” says Tager-Flusberg.

In one room at the Autism Center, the researchers have rigged up a mock MRI, using a padded roller board that can slide into a cloth tunnel supported by those foam “noodles” kids use in swimming pools. It’s for helping the children in these studies learn what to expect in the real brain scanners operated by Massachusetts General Hospital.

“We’ve been finishing up our pilot projects for the scanning protocols and trimming them down to a time the kids will tolerate,” says Tager-Flusberg. “At first, the imaging folks at MGH said we need 40 to 50 minutes in the scanner for each subject. I said, ‘well that’s not happening. These kids won’t last that long.’”

The brain scans will be done with the adolescents as well as a group of younger minimally verbal kids, aged six to ten. The younger kids will also participate in an intervention study of a new therapy called Auditory-Motor Mapping Training (AMMT). The therapy was developed by Gottfried Schlaug, a neurologist who runs the Music and Neuroimaging Lab at Beth Israel Deaconess Medical Center. In AMMT, a therapist guides a child through a series of words and phrases, sung in two pitches, while tapping on electronic, tonal drum pads.

“The idea, from a neuroscience perspective,” says Schlaug, is that, “maybe in autistic children’s brains one of the problems is that the regions that have to do with hearing don’t communicate with the regions that control oral motor activity.”

“The first time she ever actually said a word to me that I understood, we were in Stop & Shop….She reached into the bin and she picked up an apple and said ‘apple.’”

Many of the same brain areas activated when we move our hands and gesture are also activated when we speak. So, combining the word practice with drumming could help reconnect what Schlaug calls the “hearing and doing” regions of the brain. The initial results, from pilot work on a handful of children in 2009 and 2010, were promising. After five weeks of AMMT, kids who had never spoken before were able to say things like, “more please” and “coat on.” That’s when Schlaug sought out Tager-Flusberg.

“I was aware of her importance in the field of autism research, and we wanted to discuss these findings with somebody who was an expert to ask if what we were seeing was believable,” says Schlaug, who is one of the principal investigators for the Autism Center. For the intervention study, the researchers aim to recruit about 80 minimally verbal children who will be randomized to either 25 sessions of AMMT or a similar therapy that differs in a few vital respects. (The control group subjects will have the option of getting AMMT after the study is complete.)

All the children will get brain scans before and after the therapy to see if improvements in vocal ability correspond with changes in the brain. “I would consider it a great success if we could turn on the brain’s ability to say words in an appropriate context,” says Schlaug. After that, he says, maybe AMMT could be scaled up to teach longer words and more complex phrases, or just get kids to a point where more traditional speech therapy could be effective.

Of course, as Tager-Flusberg stresses, the children classified as minimally verbal are, “an enormously variable population,” both in their facility with words and the other behavioral measures of the autism spectrum. The standards of improvement, and the hopes of the families joining in the center’s research, are no doubt just as varied.

Emily, for instance, goes to a public grade school in Boston. She’s in a special program for students with autism, and she has done well there. “She’s a relatively happy child,” her dad says. “She can count to 20. She knows her ABCs.” She can even spell a few words. Cat. Dog. Love.

Emily takes music classes at the local Boys & Girls Club, as well as dance and movement classes on Saturdays. Plus, the Brownes are a tight family. Brendan is an insurance underwriter, Jeannie teaches kindergarten part time, and Jennifer is a sophomore at the Boston Latin School. They’ve learned the fuller meanings of Emily’s limited vocabulary. When Emily says “pink,” for instance, she means yogurt, because her first yogurt was pink, strawberry, and delicious. When she says “orange,” that means quesadilla (her favorite food) because of the orange cheese they used at her school when she learned to make them.

Back on the patio in the Browne’s backyard, Emily’s dad explains how she used to run away a lot. She’d take off on him in the grocery store and flee across the parking lot, oblivious to traffic. Once caught, she’d be perfectly calm, even laughing. She also used to hit people for no particular reason. Both behaviors abated after Emily started taking the antipsychotic drug risperidone. Still, transitions are tough for her, and she’s entering her final year at the school she’s attended since she was three. Her parents are searching for the right high school.

“We still treat her like a child, but she’s a teenager now,” her dad says. “I don’t know what it’s going to be like when she’s 23. Will she be able to live independently? And this communication piece is really key to that, which is why we jumped at the research.”

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“They gave me a list of 100 words….quite a few of them I realized not only could she understand but she could say them….So I learned a lot more about Emily. We’re used to Emily the way she is, but Emily is growing and growing up.”

It’s nearing lunch time. Emily is making noises, slamming the lid of the grill and vocalizing a kind of “aaaahheeeeahhh,” drawing attention to herself.

Emily at home with her father, Brendan, and mother, Jeannie.

“Emmy, you want some lunch? Are you hungry?” her dad asks.

“Orange?” Emily says. They go inside and get out the tortillas, salsa, and cheese. It’s time for the visitor to head home. “Goodbye, Emily,” he calls from the front door. “Bye,” she answers with a half wave.

“Very good!” her dad exclaims. “See, that was spontaneous!”

20 comments

  1. Great article. I have mental illness myself, although not as severe. I am a COM grad from 1994 and your staffer, Amy Laskowski, laid the possible groundwork for a story on me. I am an author and a photographer with the hopes of helping mentally ill people, understand the world at the level they can and to get the most out of life.

  2. God bless the workers who are coming with new ways of helping the Autistic to be verbal. I am a father of 4 year old high function Autistic. Has delayed speech and picking up. But many time I feel frustrated. Hope medical science will come up with a cure that will make special kinds Independent.

  3. Amazing article. Thank you so much for sharing. My son is 8 told, minimally verbal & his speech therapist forwarded me your link I’m glad she did.
    Truly inspiring Work, I hope we will see the fruits of it soon & give our children a voice.
    Best of luck my dear Emily.
    Asmaa mom to Bader ❤️

  4. my granddaughter is 5 +.she can hardly say few words.very much like Emily. i wish to know each and every progress medical science is making in delayed speech autism .good luck.

  5. Thank you! So many of us are desperate for answers. Our children are frustrated with not being able to communicate their wants, dislikes, illness, and thoughts. Wishing you much success in this research!

  6. This is a great article. My 4 year old son is newly diagnosed on the spectrum but we knew for a while prior to the official diagnosis. He was verbal up until 2 years old but started regressing and now will only say a word every once in a while. This article gives me hope in the advances in treatment and options for the future. Thank you!

  7. Thank you so much for this important research. My son has DS & at 3yo started saying words & signing a lot. By the end of the year it was all gone & he was dx. W/ASD. No talking or signing. He’s 7 & has three words & a few signs now but I dream of the day he’ll talk again. Good luck in your research.

  8. Our daughter is an 8 year-old autistic child with minimal speech as well. Emily reminds me so much of her! Thank you for this article, and thank you to the parents and children who volunteered to participate in this study. Knowing that research is being conducted on understanding the process of the brain and how it relates to their speech gives me hope! In my heart I truly believe that someday, our children WILL get an opportunity to speak again! Thank you so much.

  9. I have Asperger’s Syndrome which is now autistic spectrum disorder. I disagree with this move in the DSM 5 because I believe it works to further marginalize those with non-verbal or minimally verbal autism. Since language acquisition and use has such a well understood neurological foundation, it seems like it should be a no brainer to me to study non-verbal or minimally verbal individuals in depth. I believe the mental health and neuropsychiatric fields have shyed away from doing so because there is no money in it and they can’t feign improvements in behavior or functioning as a result of their therapies in people with profound autism like they can with those on the higher end of the spectrum who’s improvements are often the result of their own spontaneous neurological development. It’s no secret that so many people study psychology because it’s one of the easiest fields to major in and most medical students who go in to psychiatry do so because it’s the least medically oriented of the medical fields that still allows them to call themselves medical doctors. Ask yourself why are there both psychiatrists and neurologists? Why is the brain the only organ that is divided between specialties where some of it’s disorders are treated as tangible and some intangible? Why are other organs not treated in the same manner? The answer is simple . Because one cannot get away with such bullsh!tery with other organs because people would die.

  10. I love this article. Great info and it really gives hope to parents such as myself, having a child who is autistic and non verbal. My question is, are they or will they conduct studies with younger children?

  11. Great article. My son is 6 yrs old. He is also diagnosed as autistic. He only knows some words. Never called me daddy or mommy to his mom but I noticed that he would say daddy or mommy himself. Most of the time he makes noises and laughing himself move his hand on the air. As a parent we really get frustrated. Now a days he pushes his 2yrs sister and throwing stuff towards her. If I raise my voice he would come to me and atack me. We really worry about my son. And at the same time we hope he will talk one day.

  12. My grandson is 2 and has symptoms of autistism. He tries to talk and having trouble with his speech. He was fine when he was a baby and when he was 1, everything just changed after he turned 2. He communicates well it’s just him talking. I hope and pray that we all find answers so all our kids can verbally talk and communicate well.

  13. If a 23 year old man is not verbal and could not get his program to help with speech is it too late for him ?

  14. Im a provider To an autistic 13year old her name is Emily and Im always talking to her and shes picking up a few words. The other day I told her to say her sisters name and she did the feeling is so unexplainable I get all excited and hug her Shes a non verbal autistic but I know its not impossible

    1. Many parents are scared of the thought that something might be “wrong” with their child. Often that results in denial too see or accept any symptoms. So a careful approach is needed, just suggesting that she might consider the possibility.

      The important thing for her to realize is that its not harmful or dangerous to consider the possibility that her child has autism.
      What is harmful is to ignore the possibility.
      If her child do not have autism there has been no harm in checking it, only a consideration less to think about.
      If her child has autism its crucial to find out as early as possible.

      I am a father of a boy with infantile autism. I am forever grateful to the person in kinder garden that suspected it and talked with me about it.
      She asked if I wanted an observation of him, then a specialist team to evaluate him. Because of that person my son got an early diagnose at the age of 2, giving the opportunity for an early start of a training program. Now a year and a half later he has improved significantly on many things he struggled with before. If we hadn’t been aware of his condition, his outcome would have been far worse.
      There is no cure for autism but it is possible to enhance the prospects and development. The earlier you start the better the chances are for improvement.
      It is hard to get a diagnose for your child. Your world turns upside down.
      But when you have a child with autism, that awareness and diagnose also change your world to the better.
      It can be difficult to approach the subject but it is important that you do.
      Wish you, your daughter and your grandchild the best.

  15. A great article in understanding minimally verbs kids. My son is 5 and is minimally verbal. If only I could understand what he wants.. I would give the world to him.
    We are with you Emily !!

  16. My son is 6 years old and He is also diagnosed as autistic. Am seriously praying and looking forward to him speaking more thank one words.

  17. I would just like to offer words of encouragement to you all. Your little angel appreciates all that you do. Just by being kind and patient with them makes them feel loved and understood.

    However, I would also urge those of you with children fast approaching age 8, get as much help for your child NOW. The inability to communicate with the world is heartbreaking for them and research suggests that if they are not communicating (not saying o e or two words), by age 8, the likelihood that they will ever engage in reciprocal communication diminishes significantly every year past age 8.

    Believe in your heart that autism is a blessing. They make us better as human beings. I believe God gave us these angels so that we know perfect love.

    If you are interested in reading the first two position papers written on autism from 1926, please visit dinkafoundation.org.

    My daughter has autism. She was non verbal. Today she can talk (reciprocal conveesations), read, and write. When she was diagnosed we were told she should be in a center.

    I never stopped believing in her.

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