Children with autism do not predict repeating sights and sounds, even after experiencing them dozens of times over a few minutes.
The findings support the ‘magical world’ hypothesis, in which an inability to detect patterns and predict what happens next underlies some of autism’s core features. If social behavior seems random, for instance, it would be hard to know what to do in social situations. And if sensory stimuli always come as a surprise, a person would naturally be more sensitive to them.
Researchers presented the unpublished findings yesterday at the 2017 Society for Neuroscience annual meeting in Washington, D.C.
The tendency to tune out a repeated stimulus is known as habituation. It’s a mechanism for filtering out ‘background noise’ (or the equivalent in other sensory realms) so that a person can pay attention to important information.
Some studies have suggested that habituation is impaired in people with autism. Most of these studies have tracked responses to a novel sight or sound after the same one has been presented several times.
In the new study, researchers did not insert a new stimulus, but instead simply repeated the same one at a regular, metronomic pace. They recorded brain activity in 10 children with autism and 21 typical children aged 7 to 12 years as the children listened to a series of 50 identical beeping sounds that occurred once every second.
In the typical children, a spike of brain activity associated with each beep dropped as the children heard more beeps, suggesting that they habituated to the noise.
In many of the children with autism, however, the spike did not diminish, and in some, it intensified over the course of the experiment. As a group, children with autism showed significantly less habituation than the controls, the researchers found.
“They can’t disengage with the stimulus,” says Wasifa Jamal, a postdoctoral researcher in Pawan Sinha’s laboratory at the Massachusetts Institute of Technology, who presented the work. “They can’t tune it out.”
The researchers then showed the two groups of children a checkerboard pattern that flashed on a screen once a second for 50 seconds. Again, they found that the spike of brain activity in response to the pattern gets smaller with repetition in controls — but not in children with autism.
This shows that impairments in habituation affect multiple senses in children with autism, Jamal says. “It’s not domain-specific.”
Children with severe autism features show greater impairments in habituation to the repeated beeps than do those with mild features. (The researchers found no relationship between autism severity and responses to the checkerboard flash.)
The magical world hypothesis is not the only one that is consistent with impaired habituation in autism, says Scott Murray, associate professor of psychology at the University of Washington in Seattle, who was not involved in the work. But, he says, “it totally resonates with me.”
Too Bright, Too Loud
When my little brother was born in 1993, I don’t think my parents were the only ones who didn’t know much about autism. For the next decade or so, as they tried to understand why my brother seemed constantly overstimulated by the world and heartbreakingly inconsolable at times, they did what many parents of children who would ultimately be diagnosed with autism did: they tried to experience the world through their child’s eyes and body.
Autism was not widely discussed in the early ’90s, in part because there wasn’t much to discuss. The research was limited, and high-profile celebrity activists were few and far between. For those whose lives had not been directly touched in some way by autism (at least not yet), the general understanding of the condition was defined by cultural interpretations, such as Dustin Hoffman in Rain Man.
For families raising children with autism — whether they had been formally diagnosed yet or not — it was an interesting time. The emergence of the internet provided a vital tool for parents, giving them access to information beyond what they could dig up at their local library as well as the opportunity to carve out community spaces and connect with other parents.
Questions like “How do you deal with this?” or “What works for you?” are not unfamiliar to parents in general, but for parents of children with autism or sensory processing disorders of any kind, they can refer to situations more serious than the standard toy store tantrum. Parents were often desperate to help their child stop physically harming themselves (either intentionally or unintentionally) and to find something — anything — that might calm them in those moments when chaos reigned.
My family did what many others did: tried various things and hoped that something would stick. My brother was ultimately more high functioning and verbal than children with autism are expected to be, but that was only after years of diligent intervention. When he was very young, the tone of every day of his life (and ours) was dictated by how he felt. On a good day, his meltdowns were infrequent and no one got hurt. I try not to dwell on what the bad days were like — as hard as they were for me and my parents, I can only imagine how they must have been for him.
Temple Grandin & The Hug Machine
When I was in college, I had the opportunity to attend a lecture by Temple Grandin, one of the most well-known researchers in the field of autism and someone who is, in fact, autistic herself. During the lecture, she discussed a number of topics, but primary among them was perhaps her most significant contribution to the body of research on autism and sensory processing disorders: her “hug machine.”
A number of the hallmark features of autism involve sensory processing. Specifically, children with autism tend to become painfully overstimulated by a variety of sensory input: sights, sounds, tastes, tactile sensations, etc. This was a tendency that Grandin was well aware of in herself from an early age and one that I remembered afflicting my brother. He was particularly overwrought about fire alarms, would often tear off his clothes in public, and has more or less eaten the same foods every day of his life for more than 20 years.
Not unlike Grandin, he also had an interesting contradiction about touch. He did not like to be hugged and had a number of interpersonal struggles that made him seem “unaffectionate.” However, at the same time, he exhibited self-soothing behaviors that made it seem like he wanted to be wrapped up or held. In fact, if he was thrashing about in the throes of a tantrum, a firm hold not only kept him from hurting himself (or anyone in close proximity), it also seemed to calm him down.
Grandin, who loves animals, spent much of her research career working with livestock. Her fascination with them began on her aunt’s farm when she was a child, during which time she observed the “squeeze machine” often used by dairy farms to quell anxious cows as they’re being branded. From there, she developed the concept for her own such device for people. The prototype involved two air mattresses and a wooden framework that she could stand within and then control the degree to which she was compressed by the mattresses.
Grandin’s brilliant, systems-thinking mind reasoned that something about the “deep touch pressure” provided by the squeeze machines calmed both the livestock and herself. Her seminal paper on the topic, Calming Effects of Deep Touch Pressure in Patients with Autistic Disorder, College Students, and Animals, was published in 1992 — one year before my brother was born.
During the warm months, kids can lose some of the academic momentum they gained over the school year. This “summer slide” is a risk for all children, especially those with autism.
“There are 10 weeks of no school. Ten weeks is a very long time,” says Sharon Cable, of Canton. Her son, Alex, now 23, liked the structure of the school day and became very anxious when the routine changed in June. So, he participated in the Summer Social Skills Immersion program at the FOCUS Center for Autism in Canton. Experts say vacation is actually a great time for kids with autism to learn in a fun, different way.
The summer program, for kids ages 6 through 18, runs three times a week from June 27 to Aug. 17, in cooperation with The Wilderness School in East Hartland. The children take hikes, complete crafts and work with animals. They also embark on field trips to experience new people and places. “They learn how to transition, how to be out in the community which is really important. They want to belong,” says Swanson.
The FOCUS Center for Autism has grown and now includes a school. The Fresh Start School is a new, state approved program for children with autism spectrum disorder between the ages of 11 and 18. “We’re really a clinical program. We address the psychiatric, emotional needs that are getting in the way — that are the barriers that keep kids from being in a regular school system,” explains Swanson.
The school uses milieu therapy, which utilizes everyday events and interpersonal interactions for practical learning. “We teach kids how to manage their anxiety, how to navigate, how to advocate for themselves. Instead of using behavior, they use their words,” she says. Fifteen students are currently enrolled in the school. A graduation ceremony will be held Wednesday.
A Glendale-based nonprofit school is using a new computer system that allows severely autistic students to learn foundational skills.
Tobinworld’s Brill School of Autism, which includes about 80 low-functioning students, is using touch-screen computers to help autistic students learn how to count from one to 10, memorize colors and recognize safety signs.
The school utilizes an online precision-teaching program, which is a method of teaching that targets basic skills and uses a frame-like approach that reinforces known skills while introducing new ones.
“It’s an accelerated form of learning, and it’s evidence-based teaching,” said Ray Hairapatian, principal of the Brill School of Autism.
In evidence-based teaching, each student’s work is recorded in a database that is monitored by an administrator, who then gathers the information and compiles it into reports for teachers and parents. The data helps the school keep track of how a student is doing during each session.
By the following school year, a new goal is created for the student through evidence-based research.
“If something is too intensive, we’ll find out why and go back to the drawing board,” Hairapatian said. “Whatever the case may be, we’re looking at ways to improve it, and the kids have responded really well to it.”
While touch-screen computers have been used in Tobinworld for some time, they’re a new feature in the Brill School of Autism, said Judy Weber, Tobinworld’s executive director. The computers cost $3,000 each, Weber said, and Brill currently has 100 of them.
Brill students range from 5 to 22 years old. In each classroom, Hairapatian said a teacher and four instructional aides walk around, monitoring students and praising their success.
Dillon Marshall just wanted to find a way to give back to the community.
The 15-year-old Lincoln Park High School student, decided one way to do that would be to help ensure that other children in the region don’t go hungry over the summer.
Marshall decided to collect boxes of cereal to be given to local food banks that will ensure children who had gotten meals at school will have access to food over the summer.
He worked with Lisa Viella, founder of Mimi’s Mission, to come up with the idea and then got to work soliciting donations for his cause.
“He initially wanted to try to get 300 boxes of cereal donated,” Viella said. “His mom told him to be reasonable and aim for a lower goal for the first time.”
By the end of the donation drive Marshall and his mother Sheri Alley had more than 1,600 boxes of cereal stored up to be sent to Mimi’s Mission.
Marshall is part of the “Puzzle Kids” program with Viella’s charity, that’s a support group for children with Autism and their families. Marshall is a high functioning autistic patient
“We support Puzzle kids in their efforts to help Downriver families in need,” Vilella said. “He’s a very special kid who just always wants to give back.”
Marshall said he was happy to be able to help.
“I thought about doing it to help other kids who need food,” he said.
When non-white autistic students get in trouble, schools have a track record of escalating tensions and treating it as a criminal matter. Two recent cases in Orange County, Florida, help illustrate the problem.
Why would a school cop in Florida throw a slender, autistic fourth-grade student to the ground? You might assume that the child must have presented some kind of serious threat to himself or others, that other skilled experts had already tried de-escalating interventions, and that there was no other choice. Such was not the case for 10-year-old Seraph Jones. This spring, a school cop threw him down and held him against the ground with sufficient force to cause rug burn.
It turns out that Seraph’s worst day at school—so far—happened because he was clicking a key too loudly, then ended up trapped in a situation where he had no good way to safely calm down.
By the time Seraph and I connect via Google Hangouts, the rug burn on his face has long since healed. He’s a beautiful boy with light brown skin, expressive eyes, and an infectious smile. In between talking about general frustrations about school, we make up games. Most of them involve zooming our eyeballs or palms up to the camera, way too close, then laughing and laughing at the weird images on our screens. After a bit, Seraph shoos his mom, Andrea, away. She’s been trying to keep him on track with the interview, but I’m at least as incorrigible as he is. I like seeing him smile. I hate breaking the mood by asking him about the time a school resource officer threw him to the ground and pinned him there.
The violence that disabled children experience in American public schools should be a national scandal. It’s certainly gotten enough coverage. In 2014, ProPublica published “Violent and Legal,” finding over 267,000 incidents of violent restraint in 2012. In 2015, the Center for Investigative Reporting offered a state-by-state analysis of the school-to-prison pipeline, showing that black, Latinx, and disabled children—especially those who were non-white and disabled—were far more likely to be arrested and charged than other children. And, just last May, Education Week published a study finding that at least 70,000 students covered by the Individuals With Disabilities Education Act (IDEA) had been restrained or secluded in public schools in 2013–14. Because reporting standards vary, that’s likely an undercount. Between these large-scale stories, there have been thousands of viral and semi-viral tales of abuse, restraint, arrest, and even death. We’ve covered some of them here.
Seraph’s story, like so many of these tales, starts with something small. In his case, it was testing day. Testing is a fraught time, with students and teachers under lots of stress, even in fourth grade. After 80 minutes of being forced to sit still for the test, the warning signs should have been clear. Seraph tells me that, following the test, the teacher put on a movie, but the sound bothered Seraph, so he put on headphones at a computer. The headphones didn’t drown out the sound, so he started hitting a key over and over again to make a loud noise. That, right there, was the original “offense” that ended up landing him face-down in the carpet, his skin abraded: aggressive key hitting.
PUNISHMENT CAN’T FORCE AN AUTISTIC CHILD TO BE TYPICAL.
Seraph was sent from the room, with the assistant principal, dean, and school resource officer (SROs are, essentially, school cops) summoned to address the situation. Seraph made it to the media room, according to the incident report, where he struck a teacher and was thrown to the ground. As he relates the story (and as confirmed by his mother), he admits he went in without permission, looking for a good space to try and recover. Another teacher began to read a book to try to calm things down, but Seraph was upset by that noise too. Hands over his ears, he approached the teacher and struck at the book with his elbow.
This isn’t good behavior, but it’s also not dangerous. Try, for a moment, to hit something with your elbow while keeping both hands on your ears. It’s nearly impossible to generate much force, even if you are fully grown. Seraph is a slight boy; when he hit the book with his elbow, he was quickly taken to the ground by the school cop, his face ground into the rug, his skin burned against it.
Seraph was suspended briefly before being allowed to return to school, but since then, according to his mother, things have gotten worse. She’s trying to raise money to get a therapist to explicitly link his behaviors to his disability, and thus make the school write a behavior plan that might protect him. “Since the fundraiser was put up, he has moved schools in the district, but has again been restrained by school personnel and spent hours crying without anyone calling his dad or I despite my request,” she says. “Until we get a decent protective behavior plan, this is going to keep happening.”
Ashton Gelfand’s story isn’t really all that different. He’s black, 14 years old, and recently diagnosed with autism, attention-deficit/hyperactivity disorder (ADHD), and bipolar disorder, according to both his father, Bryan, and local news reports. His family also lives in Orange County. Ashton attends West Orange High School, a massive school with over 4,200 students. As we spoke, Bryan wearily laid out a familiar, frustrating sequence of events: Ashton has had three different teachers and two counselors this year, not because he’s been moved but because staff turnover is so high. The first counselor, Bryan tells me, “was good. Some thing her hands were tied on, but we could get ahold of her. She had special education knowledge.” The new counselor didn’t know much about special education, and, moreover, the parents were never able to meet with her before “everything went south.”
Ashton has no individualized education plan (IEP). According to his father, he was told he’d have to flunk first to get an IEP. That’s not legally true, but it’s emblematic of understaffed, underfunded, big school districts that rely on parents who don’t know or lack the resources to defend their rights. Ashton does, however, have what’s known as a “504 Behavior Plan,” precisely the document that Seraph’s parents are trying to get. Such plans are often coercive—we’ll get to that—but they are supposed to provide clear procedures to help children with specific behavioral needs to avoid escalation. Too often, as with Ashton, that didn’t happen. His father tells me that he kept finding out about situations in which his son wasn’t allowed to go cool down, especially by substitute teachers. “About two to three weeks before ‘the incident,'” Bryan says, by way of example, a substitute teacher refused to allow his son to leave a too-noisy room and go to the office and cool down, despite the 504, which stipulates that “Ashton will have a cool-down pass when needed.”
Ashton’s parents knew things were getting worse and put in for a transfer to a smaller school (where his sister attends), but the process was slow. Weeks passed. “The incident,” as Bryan calls it, “happened at 7:30 in the morning. I get the approval for his transfer at 2:30 that day.” That morning, Ashton and a friend entered class, where, yet again, another substitute teacher was in charge. The kids were joking about being gangsters. According to Bryan, “They came in loud, so the sub teacher, said, ‘Shut up and open up your laptops.'” When they didn’t quiet down fast enough, she told Ashton to get out of the classroom. Bryan tells me: “Sub teacher said just get out, but my son went to open up his laptop. She slapped my son’s hand away. As soon as she slapped his hand, zero to 100 for my son.”
In a small, randomized Phase I/II clinical trial (SAT1), researchers at University of California San Diego School of Medicine say a 100-year-old drug called suramin, originally developed to treat African sleeping sickness, was safely administered to children with autism spectrum disorder (ASD), who subsequently displayed measurable, but transient, improvement in core symptoms of autism.
ASD encompasses a group of developmental disorders, often characterized by communication and language difficulties, repetitive behaviors and inability to socialize. The Centers for Disease Control and Prevention estimate that ASD occurs in 1 in 68 children, with the condition 4 times more common in boys than girls. ASD has no single known cause, but may involve both genetic problems and environmental factors, such as viral infections, pollutants or complications during pregnancy. One of the aims of the SAT1 study was to test the cell danger hypothesis as a possible unifying theory that contributes to the pathogenesis of ASD.
Writing in the Annals of Clinical and Translational Neurology, first author Robert K. Naviaux, M.D., professor of medicine, pediatrics and pathology at UC San Diego School of Medicine and colleagues describe a novel double-blind, placebo-controlled safety study involving 10 boys, ages 5 to 14 years, all diagnosed with ASD.
Five of the 10 boys received a single, intravenous infusion of suramin, a drug originally developed in 1916 to treat trypanosomiasis (sleeping sickness) and river blindness, both caused by parasites. The other five boys received a placebo. The trial followed earlier testing in a mouse model of autism in which a single dose of suramin temporarily reversed symptoms of the neurological disorder.
The results in humans were equally notable, though the purpose of the SAT1 trial was fundamentally to test the researchers’ underlying theory about a unifying cause for autism and to assess the safety of suramin, which is not an approved treatment of ASD. In fact, there are no approved drugs to treat the core symptoms of ASD.
All five boys who received the suramin infusion displayed improvements in language and social behavior, restricted or repetitive behaviors and coping skills. Assessment of improvements was based upon observational examinations and interviews using standardized tests and questionnaires, such as the Autism Diagnostic Observation Schedule, 2nd edition (ADOS-2), the Expressive One Word Picture Vocabulary Testing (EOWPWT), the Aberrant Behavior Checklist (ABC), the Autism Treatment Evaluation Checklist (ATEC), the Repetitive Behavior Questionnaire (RBQ) and the Clinical Global Impression (CGI) questionnaire. To minimize misinterpretation of natural day-to-day variations in symptoms, parents were asked to mark a symptom as changed in the 6-week CGI only if the symptom lasted for at least one week.
The researchers found that ADOS-2 scores were improved in the suramin treatment group at six weeks, but not in the placebo group. Specifically, ADOS-2 scores improved by -1.6 points in the suramin group, but did not change in the placebo. Children who have a score of 6 or lower in ADOS-2 may have milder symptoms but no longer meet the formal diagnostic criteria for ASD. A score of 7 to 8 indicates the child is on the autism spectrum. Nine and above classifies the child as autistic.
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For the first time in a decade, the classic children’s television show Sesame Street will introduce a new Muppet on the air.
Her name is Julia. She’s a shy and winsome 4-year-old, with striking red hair and green eyes. Julia likes to paint and pick flowers. When Julia speaks, she often echoes what she’s just heard her friends Abby and Elmo say. Julia has autism.
“There’s so many people that have given her what she is. I’m just hoping to bring her the heart,” says Stacy Gordon, the veteran puppeteer selected to play the part.
Presenting Julia to the gang requires a bit more explanation of her differences and hidden talents for the other Muppets — and their young viewers. As Abby Cadabby (the 3-year-old fairy played by Leslie Carrara-Rudolph) explained during NPR’s recent visit to the set in the Astoria neighborhood of Queens, N.Y., it can be hard to get Julia’s attention. Big Bird had to repeat himself to get her to listen, for example. And she sees things where others don’t.
“That’s just Julia being Julia,” Abby said.
The role of Julia has a personal dimension for Gordon: She says she used do therapeutic work for people with autism. And Gordon says her son is on the autism spectrum, too. She believes the show will be a great resource — for students with the disorder and for their playmates.
“Man, I really wish that kids in my son’s class had grown up with a Sesame Street that had modeling [of] the behavior of inclusion of characters with autism,” Gordon said.
Jeanette Betancourt, senior vice president for U.S. social impact at parent company Sesame Workshop, has been helping plot the development of Julia for about three years. Sesame Workshop is a not-for-profit media company and an educational outfit that conducts its own research.
Betancourt says the introduction of Julia’s character is a natural outcropping from other initiatives Sesame Workshop has done, pointing to programs for children with a parent who is incarcerated and for military families enduring deployments.
“Basically, in terms of vulnerable families, we’re looking at families who may have particular stressors in their lives that are impacting their young children,” Betancourt says, “whether it’s economic or social emotional stresses or differences that they’re handling at the time.”
Parents of children with autism told officials at Sesame how important the show was for their kids. According to the U.S. Centers for Disease Control, one in 68 American children have autism.
Julia started last year as a character in Sesame’s books and digital offerings. Sesame decided on a two-fold mission for the related campaign “See Amazing in All Children,” to give children with autism and their families someone to identify with — and those that don’t a window into their world. The materials appear on a dedicated site.
Sherrie Westin, an executive vice president at Sesame Workshop who oversaw the initiative, said the campaign quickly struck a chord.
“One of my favorite stories is a mother who said that she used the book to explain to her child that she had autism like Julia,” Westin said, shaking her head slightly as she teared up. “This became the tool for her to have a conversation with her 5-year-old daughter.”
“And you’ll love this. At the end her daughter said, ‘So I’m amazing too, right?’ ”
The surfacing of a new permanent Sesame character is rare. Westin said it’s the next logical step.
“We realized if we brought her to life appearing in Sesame Street on air as well, she would have even more impact [and] be able to reach even more children,” Westin said.