Month: April 2012
“I’m living in the here and now day to day with Jacey and Jacey is my Autism” says Amy Brooks, mother of five including four year old Jacey with Autism.
Jacey was a different baby from day one. When her development was behind schedule, her parents thought she was a late bloomer. However, by the age of two they knew something wasn’t right. Amy says, “its definitely heart wrenching because you think oh maybe it’s something else she’ll grow out of. And then they say Autism and its like huh, that’s life long”.
It took some time for denial to wash away and a new reality to settle in. Amy says, “alright well, I’ve had my pity party, now what do we do for Jacey”.
A diagnosis of Autism means life as they knew it changes forever and it’s time to adapt. Amy says, “I thought I had parenting down when I had my first two kids and then I had Jacey”.
Seemingly simple communication is one of the biggest challenges. Amy uses the analogy, “can you imagine going and living in France or some other country where nobody understands a word you’re saying and you don’t understand them”.
The usual logical thinking approach to parenting just doesn’t work with a child like Jacey. Amy says, “she sees the here and now and she doesn’t necessarily understand what she did was wrong”.
“I just try to make sure that I have eyes on Jacey” says Amy. Caring for a child with Autism is difficult on parents and it’s not easy for siblings either. When I asked Jacey’s eight year old sister, Bailey, is she loves Jacey, Bailey hesitated and said she can, but sometimes it’s hard to. Bailey explains, “I tell her no, but she doesn’t stop”.
Their six year old brother, Carsten, agrees, “she (Jacey) makes me frustrated”. He adds, “when she gets into my room and I don’t want her in, I close the door and lock it”. So Jacey’s siblings learned to adjust. For instance Bailey has a toolbox she keeps all the things she doesn’t want Jacey to get into under lock and key.
Bailey and Carsten learned early on that they can’t come first all the time. Bailey says, “sometimes she gets most attention”. Carsten says, “I don’t need all the attention. She only gets 1 adult’s attention, so I can talk to the other adult”. Amy explains to make sure no one ever feel left out they “take kids on individual little dates with mom or dad”.
Even with the added stress, such as having to keep all doors locked. They are still a family. Amy says, “Bailey’s like a big mom to her. She’s very sweet and loving”. Carsten says, “I do love my sister”. Bailey explains, “I have to tell her no because she doesn’t understand that much. She’s not that old and she has Autism, so she doesn’t understand as much”. Amy says, “when they’re sleeping and you go and see them, it completely washes away anything that happened that day”.
Jacey is doing better than they ever thought possible. She has about 200 words now and will be starting kindergarten in a regular education classroom in the fall. The goal is that Jacey will be able to one day be an independent contributing member of society and with the path she’s on at just four years old, she’s on her way.
Researchers are looking for children with autism in the Inland Empire and Los Angeles/San Fernando Valley areas
By Sean Nealon On APRIL 26, 2012
RIVERSIDE, Calif. (www.ucr.edu) — A University of California, Riverside education professor is again recruiting children for a first-of-its-kind study that will assess how children with autism adapt to the early school years and identify predictors that will lead to a successful transition.
In a first round of recruiting, Jan Blacher, a professor and founding director of theSEARCH (Support, Education, Advocacy, Resources, Community, Hope) family autism research center at UC Riverside, and her team signed up 48 families. They are now looking to recruit an additional 50 families.
Blacher, along with Abbey Eisenhower, an assistant professor of psychology at the University of Massachusetts Boston, received the three-year, nearly $1.2 million grant from the Institute of Education Sciences, the research arm of the U.S. Department of Education. Their project, called “Smooth Sailing,” focuses on the essential ingredients of a successful transition from intensive early intervention, which most children with autism receive when they are first diagnosed, to the public school system.
Blacher and Eisenhower, along with their graduate students and staff, are recruiting children, ages 4 to 7 who have been diagnosed with autism or autism spectrum disorder, to take part in the study.
Blacher is recruiting children in the Inland Empire and Los Angeles/San Fernando Valley areas.
In the Inland Empire, after being screened for eligibility, parents and children will be invited to visit UC Riverside three times over 18 months.
In Los Angeles and the San Fernando Valley, after being screened for eligibility, parents and children will be invited to visit The Help Group campus in Sherman Oaks three times over 18 months.
During each visit in each location, children will be assessed on their academic skills, with a focus on language and literacy. Parents will also be interviewed to assess perceived school factors, such as quality learning opportunities and child engagement. In addition, parents and teachers will complete questionnaires to measure factors such as the child’s social skills and behavior, the parent’s involvement in school, and the student-teacher-relationship.
In return, parents and children will receive $150, an assessment summary after the first visit this fall, a parent-child DVD after the second visit in the spring and a developmental summary at the third visit during the following school year.
For more information about the Inland Empire evaluations, call SEARCH at 951-827-3849. For more information about the Los Angeles/San Fernando Valley evaluations, call SEARCH at 310-825-9592.
Teen with Asperger’s finds home as radio host
JACLYN YOUHANA, The Journal Gazette
FORT WAYNE, Ind. (AP) — Every Thursday night, after Northeast Indiana Public Radio has shut down for the day, after the lights are out and the employees have gone home, after the hustle has calmed and the bustle has quieted, Joshua Stephenson arrives.
Joshua is a volunteer host at the radio station, and he records his classical music show – “Josh’s Corner,” which airs at 6 p.m. Saturdays – with his mother, Annette. He is 16 years old, and he started to listen to classical music when he was 6. As a child, large rooms with a lot of noise affected him more than other people. Loud sounds and crowds would cause Joshua to hold his ears, as if he were in pain, says his father, Scott Stephenson.
Sound sensitivity is a common symptom of autism, and Joshua, of Convoy, Ohio, has Asperger’s syndrome, a mild form of autism that affects his ability to communicate and interact socially. To treat this sensitivity, Joshua’s parents turned to audio therapy: Using Bose headphones that emphasized the high and low pitches in song, Joshua started to build a tolerance to loud noises through classical music.
Simultaneously, he started to build a love for that music.
Joshua has hosted his hour-long radio program for about six months, and originally, he didn’t want to do it. He was in the car with his mother, Annette says, and she heard that WBOI-FM 89.1 was looking for volunteers to host music shows.
“You could do that,” she said to her son, and as she started to write down the phone number, Joshua turned off the radio.
Despite her son’s less-than-enthusiastic reaction, Annette persisted. When they got home, she looked up the station’s number, called and told them her situation: that her son was 15, he loved classical music and he had Asperger’s.
They wanted to meet him.
“Annette about fell over,” Scott says.
When asked whether he chooses the music for each show, Joshua is very matter of fact: “Of course I do.” But he has trouble expanding further than that. When asked whether he has a favorite composer, he responds the same – “Of course I do” – but when pressed, he is unable to share who that composer is without a little help from Annette; it’s Bach.
Although Joshua does speak during his shows, he does not chat as much as other radio hosts will, Indiana Public Radio general manger Will Murphy says. His show might not include details about instruments or composers, instead opting to feature primarily the music.
On a recent “Josh’s Corner,” Joshua featured all songs from cartoon classics, including Peter Ilyich Tchaikovsky‘s “The Sleeping Beauty Waltz (Once Upon a Dream),” performed by the Boston Pops; Amilcare Ponchielli‘s “Dance of the Hours” from “Fantasia” (or “the part with the dancing ostriches and hippos”), performed by the Philadelphia Orchestra; and Gioachino Rossini‘s “Largo Al Factotum” from “The Barber of Seville” (or from Bugs Bunny, where you might recognize it as “The Figaro Song”) performed by the Metropolitan Opera Orchestra.
Joshua is a slim boy with brown hair and an enormous smile. He will shake hands when he meets a new person and then quickly find a seat and become absorbed in his drawing. He politely answers questions directed at him, but he seems much more interested in the “Peanuts” characters he sketches from memory, Marcie and Peppermint Patty. The style of drawing is crude, but Joshua’s understanding of proportion – and his basic ability to memorize just about every detail – is evident in every stripe, finger and upturned nose.
It was evident that Joshua had a spectacular memory from as early as preschool, Scott says. He tells a story of Joshua’s class singing a song that incorporated every student’s first and last name, about 20 to 25 kids. The next day, Joshua sang it back with ease.
His mother says that when Joshua enjoys something, such as a TV program – say, “The Lawrence Welk Show” – he will watch it again and again, until he’s memorized it.
Then, he’ll turn it to Spanish or French and watch it again and again.
Joshua struggles with math, but he loves to read, and he loves language. He says he speaks Spanish and is learning French. Once, he turned Annette’s GPS to Portuguese, and she had to ask him to translate the directions.
Joshua is an only child, and his parents wonder what will happen as he reaches adulthood. They wonder what kind of career he might embark upon.
“Do you have to be social to be a translator?” Scott wonders.
Given his love for classical music, Murphy says, Joshua just might have a career in radio.
“Anytime you have somebody who really loves something and can convey that affection on the radio, I think there’s potential there,” he says.
A former program director at the station is the one who first agreed to let Joshua host a show, Murphy says, and the reasoning goes back to the station’s mission statement: To engage the community with content that enriches the human spirit.
“If Josh’s show doesn’t do that,” Murphy says, “I don’t know what does.”
Caitlyn Miller was diagnosed with autism when she was in middle school.She had been having a hard time with her schoolwork. Her grades dropped from excellent to middling, and she had a difficult time organizing for class or interacting with her peers. She often could not make eye contact.
She would cry or close herself off from the outside world, and not say a word to anyone. Herteachers and principal thought she was being difficult.
“It was just frustrating,” she said.
Then a school psychologist, John Rolph, diagnosed her with a form of high-functioning autism known as pervasive developmental disorder — not otherwise specified, she said.
Everything started to improve over time, said Caitlyn, who is now 16. Her grades have picked up, she no longer needs her medicine and social interactions are not a problem.
“I probably could have been diagnosed earlier,” she said. “Maybe my middle-school years wouldn’t have been so disgustingly awful.”
Caitlyn is now publishing 1,000 copies of a pamphlet on autism she plans to hand out in the school system, at doctor’s offices and anyone else that wants a copy.
She wrote the pamphlet, “The Autism Puzzle: Finding the Key to the Missing Pieces,” for a Girl Scout project she started last summer. She earned the Girl Scout Gold Award for her efforts.
The pamphlet is not a technical document, but more of a firsthand telling of what it is like to live with the disorder.
People with autism, for instance, have a tough time recognizing and understanding social cues such as facial expressions, vocal intonations and hand gestures, she wrote.
“They live in a more literal world than figurative one, making it difficult for them to understand the social meanings and intentions of others.”
Avoiding probing questions or statements can add to confusion and emotional distress, as can surprises, she wrote. When a meltdown occurs, it is better to leave an autistic person to calm down.
Writing is one of her gifts, Caitlyn said, and she particularly enjoys creating science-fiction stories.
When she becomes an adult, she would like to join the Navy and become an officer, she said.
“I’m American, and I want to help protect my country.”
Autism Awareness Month may be coming to a close, but by using the social network MyAutismTeam, parents of children with autism spectrum disorder can spread awareness and find support throughout the year.
MyAutismTeam is a part of the MyHealthTeams network, online communities for people living with or caring for those with chronic health conditions. On the network, users share information about the members of their support teams — parents, specialists, businesses — with other users looking for the same.
“One in two Americans suffers from a chronic condition or disease,” says Eric Peacock, co-founder and CEO of MyHealthTeams. “That includes everything from autism and ADHD to diabetes, Parkinson’s and breast cancer. What’s more, that number is expected to grow 42% in the next 10 years.”
MyHealthTeams decided to focus on autism for its first network because one in 88 children in America is diagnosed with symptoms of autism. “Parents of children diagnosed with autism face enormous challenges and have to become autism and special needs experts practically overnight,” Peacock says. “Naturally, they want to connect with other parents and learn from them.”
MyAutismTeam officially launched in December 2011, after several months of testing, growing the user base and improving the site. It opened in beta to users last June, beginning with just 30 parents in the San Francisco Bay Area. But when word got out, the site grew quickly. According to Peacock, MyAutismTeam hit 10,000 registered parents from all 50 states within four months. Today, it has more than 22,000 registered parents.
MyAutismTeam believes it should be easy to find the best people around to help a parent when his or her child is diagnosed with autism. With MyAutismTeam, parents can get in touch with other parents, search a directory of more than 30,000 autism specialists and access a searchable Q&A section of 600-plus questions (If a user wants to ask a new question, the answer rate is 97.5%, according to Peacock).
The network has also partnered with Autism Speaks and Easter Seals, two organizations at the forefront of autism awareness and research. As a result, MyAutismTeam has been able to incorporate quite a large database of autism resources.
“We’re becoming the Yelp for autism,” says Peacock. “If you want to find autism specialists recommended by other parents who have been in your shoes, this is the place to do it.”
James Vaughan, the father of an 11-year-old boy with autism in West Haven, Utah, says the help he has received from MyAutismTeam has been tremendous. “The life of an autism parent is often one that is a frustrating and long road,” Vaughan says. “MyAutismTeam provides a network where everyone is in the same boat…There is no other place in social media that can give a parent that complete, non-judgmental support, the helpful tips that keep us going, and the stories that give us hope during the most trying times.”
Lara Marek’s fiancé has three children: a 14-year-old boy diagnosed with Asperger’s syndrome and two 7-year-old twin girls, one of whom has autism spectrum disorder, and one who is neurotypical (that is, not on the autism spectrum). MyAutismTeam has allowed Marek to share with other parents her experiences and questions, and it gives her an outlet without fear of judgment.
“The best thing anyone can do is learn about the things that impact his or her life,” says Marek, “and in my case I have to admit I had some misconceptions about autism. Acceptance is crucial no matter who we are. The more we can embrace what makes us different, the better off we are with self-appreciation.”
MyHealthTeams is planning dozens of additional networks that will focus on other chronic conditions. MyBreastCancerTeam, for example, is scheduled to launch within the next few weeks.
“It’s our mission to make sure it’s easy for those folks to find the best people around to help them,” says Peacock. “We love what we do and won’t stop until we help as many of them as we can.”
‘Shock’ School Trial: Where Is the Evidence that Abuse Helps Treat Autism?
The video is brutal: a young man, pinned face down in four-point restraints, receiving 31 electric shocks over the course of several hours that convulse his body with pain. But this is not Guantánamo or Syria. The electric shocks were delivered in Massachusetts, at the Judge Rotenberg Center (JRC) for autistic, emotionally disturbed and developmentally disabled youth. JRC is currently the only place in the U.S. that is legally permitted to provide this so-called aversive therapy.
Although the Rotenberg Center fought for years to suppress the video, it recently became public as part of a lawsuit filed against the center by the parents of the victim, 18-year-old Andre McCollins. Closing arguments in the case are expected on Monday.
If the plaintiffs’ attorneys did their job, a large settlement against JRC should be forthcoming: res ipsa loquitur (the thing speaks for itself) would seem obviously to be the relevant principle here. But, unfortunately, unless the judgment is big enough to bankrupt the program and shut it down for good, the torture of troubled teens will continue, as it did after other similar cases were settled.
But while the video is horrifying, I find other facts about JRC to be even more disturbing. Together, these facts make an airtight case for shuttering the program, which is opposed by all of the major autism and disability rights organizations and has been called torture by the United Nations special rapporteur on torture.
The first problem is that JRC has been allowed to conduct its skin shock “therapy” for more than four decades, with little more than anecdotes to support its effectiveness.
The center claims that using skin shocks, which are comparable in pain intensity to a bee sting, can help control severe self-injurious behavior like head-banging and cutting, without use of medication. (A reporter who tried the device, however, compared the feeling to “a horde of wasps attacking me all at once.”) On its website, JRC also argues that its punitive approach is twice as effective as using rewards to change behavior, even for the most severe cases.
But over the 40-odd years that it has been operating, JRC has never published a single randomized controlled trial demonstrating the superiority — or even lack of inferiority — of its methods, compared with standard therapy, in a peer-reviewed journal. The research it has published in the scientific literature has all involved case studies: basically stories of less than a dozen patients in each paper who were not randomly selected and whose outcomes were not compared to those of similar patients receiving less torturous treatments.
The FDA would not approve any drug with this sparse a scientific record, let alone one that caused pain as its intended effect. Unfortunately, however, talk and behavioral therapies aren’t regulated and don’t have to meet any scientific standards before they are marketed, even if they are clearly risky.
Of course, many parents of children at JRC have become strong advocates for the program. They believe that the JRC’s approach — barbarous as it may look from the outside — is the only thing that has helped their children avoid self-injury and participate in school. They tell compelling stories about children who had been so dangerous to themselves that they’d caused brain damage, now being able to sit at a computer and learn.
I’d be much more convinced by these claims, however, if I hadn’t already heard similar stories told by dozens of parents of children in other abusive treatments and subjected to quack remedies — ones that are known to be either ineffective or outright harmful or both. The reason the FDA’s approval rules for drugs and other therapies it regulates exist at all is because such extraordinary anecdotal evidence can make useless or dangerous treatments appear to work miracles.
I’d also be less skeptical if JRC admitted only children with the most severe self-injurious behavior, rather than advertising the program broadly as a solution for any teen who is simply “failing in school or refusing to attend or stuck in psychiatric or correctional setting.”
However, I admit that even if JRC limited admissions and had 10 published peer-reviewed randomized controlled trials proving the superiority of its techniques to drugs and positive behavioral treatments, I’d still be loath to recommend it. The most insurmountable problem with JRC involves the corrupting influence of power — especially when that power is wielded in the context of infliction of pain as “helping.”
Virtually all situations in which vulnerable people are under the complete power of others — such as that which exists at JRC — are prone to cultivate abuse: we hear again and again about abuses in nursing homes, prisons, homes for the disabled and teen treatment centers. As Lord Acton once said, absolute power corrupts absolutely.
The principle was first made vivid by psychologist Phil Zimbardo in the notorious Stanford Prison experiment. Within days, healthy people who had been assigned to play the role of prison guards began abusing those who were assigned to be prisoners.
Basically, ordinary people placed in positions of authority without checks or balances will tend to drift towards abusive practices. And they will also tend to “just follow orders” even when those orders involve escalating abuse, as another famous social psychology experiment once showed. At Harvard, researcher Stanley Milgram got dozens of normal people to administer a series of increasingly painful shocks to another human being (actually an actor making pained noises in another room), simply by having a man in an authoritative white coat encourage them to continue. The shockers escalated the pain even though they were told that the shocks could be potentially deadly.
A 2007 incident at JRC illustrates the issue perfectly. A former resident placed a prank phone call in the middle of the night to one of the program’s sites, pretending to be a supervisor. He ordered the staff member who answered to phone to rouse two teens from their beds and deliver dozens of shocks to them, claiming that they’d misbehaved earlier.
For three hours, six staff restrained and shocked the innocent victims — even though the shocks weren’t in the treatment plan, even though they’d never talked to the so-called supervisor before and even though the other residents protested vigorously that no bad behavior had occurred.
When you train people to believe that painful punishments are an acceptable way to control the behavior of others, it’s hard to prevent this kind of harm. Despicable behavior comes to seem acceptable, not worth questioning.
This is especially the case when — as has also happened at JRC — when your staff is not as qualified as it should be. The less educated the staff is about effects like those seen in Zimbardo’s and Milgram’s research, the more likely they are to accidentally replicate it.
Indeed, there are now at least a half-dozen documented cases of programs that use aversive treatments becoming actual cults, in which the program director has gained so much power over the participants and their parents that he can even command bizarre behavior among them, like kidnapping and partner-swapping.
I covered one particularly stunning instance of this in my book Help At Any Cost: How The Troubled-Teen Industry Cons Parents and Hurts Kids. In that case, the director of the KIDS program in New Jersey ordered teens to beat each other, restrain people for hours without bathroom access and had parents and teens kidnap people over 18 who were legally allowed to leave if they fled. He even continued to run program meetings underground after it lost its license. This man wasn’t outside the mainstream either: he had previously directed the anti-drug program that First Lady Nancy Reagan had called her “favorite.”
Rotenberg’s founder and long-time head, Matthew Israel, was forced to step down last year after facing criminal charges for trying to destroy video evidence of the 2007 incident. Perhaps without his leadership, the center will wither naturally, or perhaps a combination of legal settlements and public outrage will finally end this sad story.
What I hope will bring an end to Rotenberg, however, is simple human compassion and the public’s demand that extraordinary claims should require extraordinary evidence — especially when the claims advocate using physical pain to control our most vulnerable children.