One of the major educational and therapeutic trends in autism in 2010 was an increase in meaningful, developmental autism therapies that incorporate social, emotional and cognitive skills to enhance traditional behavioral methods.
On the research front, scientists increasingly recognized and acknowledged that autism is largely environmental and not solely genetic.
And while devastating tragedies occurred, out of those heartbreaks came greater awareness and safety measures that will ultimately save the lives of vulnerable children.
Examiner.com takes a look back at some of the articles from 2010 that reflected critical issues in the world of autism. See excerpts and links below.
Safety
Mason Alert would help prevent wandering, drowning deaths of kids with autism
Wandering and drowning are leading causes of death for children with autism, who often have limited communication abilities, impulsive behaviors, and a lack of a sense of danger.
The mother of a boy with autism who died last summer after wandering and drowning in a pond told the federal Interagency Autism Coordinating Committee (IACC) that action needs to be taken immediately to prevent similar tragedies from occurring.
At the IACC meeting in Bethesda, Maryland, Sheila Medlam of Colwich, Kansas advocated for a “Mason Alert” for children and adults with autism and other disabilities who wander. Medlam’s 5-year old son Mason died after drowning in a pond July 27.
When asked about her best memories of Mason, Medlam, her voice choking with emotion, recalled, “There’s a show called ‘Yo Gabba Gabba.’ There’s a song they sing. It’s two twin girls and they play a patty-cake game. He would play by himself. He would do the whole patty-cake game. And at the end they hug each other and whirl around. He would wrap his arms around himself and turn in circles. And that’s my favorite memory.
"There are a million of them. Driving around in his little Crazy Coupe and every time he would pass by the window he would wave at himself. He was just a joy from the second he got up to the second he went to bed. He laughed, he smiled, he played. He was sheer pleasure.
“There was never one second where I would have traded him for a different child without autism, never one second,” said Medlam. “Everything he lacked he made up for in some other way. The absolute beauty, you could just see it in his eyes. He saw nothing bad in the world. There was nothing bad in the world. And it’s just constant devastation. It’s a horrific thing to lose your child.”
Mason Alert to be combined with Take Me Home program to prevent autism wandering
Plans are underway for the Mason Alert questions to be integrated with an existing police program for autism wandering safety, the Take Me Home program, which contains photos and contact information for approximately 500 children and adults with autism and other disabilities in Pensacola, Florida. Approximately 250 police departments across the U.S., Canada, and England are using the Take Me Home program, which is free to any police departments that want to use it.
The information in the Mason Alert includes not only photos of children and adults with autism along with contact information, but it also lists their fascinations and interests, whether they are verbal or nonverbal, if they have any serious health concerns such as seizures, how they react under stress, how to approach them, and other information specific to the person.
The Medlam family has been raising awareness of autism wandering in the months since Mason’s death.
“Losing Mason was like losing the other half of my soul,” said Medlam. “From the very beginning we shared his story with everybody because we didn’t ever want it to happen to anybody else and we wanted to give some meaning to something so horrible.”
The Medlam family created the Mason Allen Medlam Foundation for Autism Safety, which includes an online petition to put in place a national Mason Alert program.
“I think every child that is saved because this is in place is a piece of my son alive,” Medlam said. “When I look in their eyes I see the same thing I saw in my son’s eyes. The same inner sense of beauty and joy and mischief, I see it in their eyes and they’re very, very, very special children and they should be protected by everybody, and with everything we have to protect them.”
For more information about the Take Me Home Program, contact Officer Jimmy Donohoe at (850) 436-5416 or email the Autism Society at takemehome@autism-society.org. Information about the Mason Alert is available at www.masonalert.com.
Therapy
Dr. Stanley Greenspan dies, founded Floortime and developmental approaches to autism therapy
At last November’s annual Interdisciplinary Council on Developmental and Learning Disorders conference in Bethesda, Maryland, Dr. Stanley Greenspan was walking and talking a little bit slower than he had in previous years. The reverence and respect that the audience had for Greenspan was palpable, and at the end of his speech, the crowd gave him a standing ovation. The people in the audience knew they were witnessing something special.
Greenspan, the founder of Floortime and the Developmental, Individual Differences, Relationship-based model (DIR) for autism, died yesterday at the age of 68.
Greenspan helped give parents hope by giving them a road to follow to help their children develop empathy and social skills in a spontaneous rather than a scripted way. He said children can learn to think in a creative and logical way. He said children with autism can feel affection and develop emotionally and socially at a time when many researchers said this was impossible. The process is often slow, but children with autism can improve in many areas.
I’m not sure who the other three people would be, but if there were a Mount Rushmore of autism therapy, Greenspan would be on it.
In sports, one of the criteria for Hall of Fame eligibility is whether a player had such a profound impact on the game that he changed the way the sport was played.
If there were an Autism Hall of Fame, Greenspan would make it in on the first ballot.
Teaching, coaching sports, playing with children with autism: rewarding, but also a whole lot of fun
How could you not enjoy reading books with children, running play dates, taking kids swimming, sledding or jumping on a trampoline, coaching them in soccer, and using puppets to make them laugh? How could you not like answering their questions about how the world works? How could you not get a tremendous amount of authentic happiness from teaching a child to multiply, divide, and do word problems when at one point he couldn’t add two plus two?
It's not only satisfying to see kids making progress, but helping them be happy and have fun is enjoyable in itself.
The point is that this work is not only rewarding, but it is also fun. It's fun for the kids, and also for the teachers and therapists who work with them. In his book Authentic Happiness, psychologist Martin Seligman says that using your strengths to forward knowledge, power, or goodness is great. Doing all of that while you’re having fun is the best of both worlds. Doing things that are both kind and fun results in a whole lot more happiness and satisfaction than doing activities that are only kind, or those that are only fun.
Or you can sit in your office and do neither.
Play dates for kids with autism can enhance social skills, emotional awareness, and learning
Play dates are invaluable in helping children with autism learn the social skills that are so necessary to be happy and successful in life. Social skills, which come naturally to most typical children, are often severely delayed in kids on the autism spectrum.
Integrating communication skills (both verbal and non-verbal), emotional awareness, and sensory processing into play dates can make the cognitive work that autistic children do more efficient. Sports, exercise, and work on motor skills can also make learning more effective. Children can learn important life skills during play dates such as taking turns, sharing, and problem solving.
Playing with other children teaches kids how to think on the fly, enables them to practice imaginative play, and helps develop their sense of humor. All of these skills are crucial in improving the ability of children with autism to think abstractly and understand how to succeed in a natural environment, in what can often be a confusing world.
A common myth about children with autism is that they don’t desire social relationships. Many high functioning students as well as adults with autism who have gained communication skills have expressed that they were interested in making friends when they were younger but simply didn’t understand how to do so and had to acquire social skills through practice.
Using humor, puppets in play therapy can enhance social, communication skills for kids with autism
Teaching humor to children with autism through imaginary play can encourage engagement, facilitate interaction, and promote the development of abstract thought. Studies have even shown that the ability to role-play in children with autism is related to communication abilities.
Traditional autism therapies have focused on the behavioral aspects of autism, but while structured skills taught at a desk have their place, many children with autism have trouble generalizing those skills into the real world.
Joking around with children with autism, especially using puppets for symbolic play, is an underused and underappreciated way of promoting creative, imaginative, and spontaneous thought.
Humor and pretend play can help children generalize what they have learned so they can use it socially, and in meaningful ways in natural environments.
Using humor with puppets can help children with autism understand symbolic or role-play, and can be an opportunity for shared interaction, which has been shown to be helpful in learning. Role-play with puppets may also help children learn theory of mind, which is the ability to use empathy, or to imagine what someone else is feeling or thinking.
Using puppets or stuffed animals in play therapy can even spur the desire to communicate, both verbally and non-verbally through joint attention and using words meaningfully, through emotions rather than through rote memorization.
In addition to using puppets and stuffed animals, jokes saying the opposite of what is expected, hyperboles, or puns may enhance abstract thought, though jokes should be customized for the child’s abilities.
Understanding and managing emotions are important life and social skills for children with autism
Children with autism are often notoriously poor at identifying, understanding, expressing, and handling their emotions. Meltdowns and tantrums can be common, and the ability to recover from these outbursts can be elusive. Emotion coaching is therefore a crucial component of any autism therapy program.
Helping children with autism deal with feelings should be accomplished not only during play dates and social skills practice, but also during more traditional cognitive and academic behavioral teaching. In fact, an argument can be made that the ability to handle emotions is more important than the ability to excel academically.
Dr. Stanley Greenspan, who emphasized the importance of learning emotions and social skills for children with autism, discussed the need to teach those skills together with academics in "Engaging Autism."
"We now understand that the lines of early development are interrelated," wrote Greenspan. "Rather than assessing language skills, motor skills, and social-emotional skills separately, we should look at how well these abilities are integrated, how they work together as a whole."
In “Raising an Emotionally Intelligent Child,” John Gottman wrote, “Even more than IQ, your emotional awareness and ability determines your success and happiness. For kids, it means controlling impulses, delaying gratification, motivating themselves, reading other people’s social cues, and coping with ups and downs.”
Sports and exercise for children with autism can improve social and cognitive skills
Four years ago, autistic teenager Jason McElwain became an overnight sensation by scoring 20 points in four minutes of action in a high school basketball game.
While many children with autism may never reach similar athletic heights, McElwain and others like him give children and parents hope. Perhaps the most significant part of the story was the acceptance that “J-Mac” received from his peers.
Whether children who have autism are high functioning like McElwain or are less advanced, playing sports can improve several aspects of their lives.
Sports can help kids with autism gain confidence, improve social skills, and develop better coordination. Improvements in balance and motor skills often go hand in hand with progress made in cognitive function and academic achievement.
Sports and exercise can improve proprioception, or the body’s sense of where it is in space and where the parts of the body are in relation to each other, which is important because autism often affects sensory processing.
On top of all that, exercising and playing sports gets more oxygen to the brain, helps kids stay in shape, improves sleep habits, and can improve relaxation and decrease aggressive behaviors.
And most importantly, sports are fun.
Top 10 mistakes, lessons learned from therapy programs for children with autism spectrum disorders
Parents of children with autism, along with the children and adults who have autism themselves, are the real heroes when it comes to improving the lives of people on the autism spectrum. Home therapists, teachers and other professionals also contribute greatly to the quality of life of people with autism.
It is a monumental undertaking to raise children with autism and to make decisions regarding their care and education. Recognizing that fact, below are ten common mistakes made, or lessons learned, in the management of home therapeutic programs for children with autism.
- Parents refusing to have their children do play dates with other children.
- There is a lack of coordination between schools and home programs.
- Therapists are shuffled in and out and there is a lack of continuity.
- Giving too much power to the head of a home program.
- Not holding the head of home programs accountable enough.
- Making the child the “King of the Household.”
- Giving up.
- Talking about the child in front of him or her.
- Not putting enough attention into Emotion Coaching.
- Ignoring sports, exercise, and motor skill development.
Environment
Landrigan calls for more research into pesticides, toxic chemicals, environmental causes of autism
Dr. Philip Landrigan of the Mount Sinai Medical Center told the Interagency Autism Coordinating Committee (IACC) that more research needs to be conducted on potential environmental causes of autism.
For decades, autism has been believed to be primarily a genetic disorder, but in recent years, scientists have acknowledged that environmental factors such as pesticides and other chemicals also play a significant role in the causes of autism.
Landrigan is one of the leaders of the National Children’s Study, which is expected to identify causes of autism and many other childhood disorders and diseases. The study will “examine the effects of environmental influences on the health and development of 100,000 children across the United States, following them from before birth until age 21.”
Landrigan has been investigating the effects of environmental toxicants on the development of children since the early 1970s when he determined that even very small levels of lead could affect cognitive ability.
His landmark work for the Centers for Disease Control and Prevention (CDC) resulted in the government banning lead from gasoline in 1976 and from paint in 1977, actions that decreased childhood lead poisoning in the U.S. by more than 90 percent.
Landrigan said genetic factors have only been proven to account for a small fraction of the cases of autism, raising the possibility that environmental causes are strongly associated with autism. Landrigan told the IACC that when the complex developing brain is interrupted by environmental insults such as lead, PCBs, or pesticides, it becomes extremely difficult if not impossible to repair.
After his presentation to the IACC, Landrigan told Examiner.com, “Over the last decade, we’ve developed very good scientific information that links three or four classes of chemicals to brain injury in babies if the exposure occurs during pregnancy. We’ve found that phthalates, brominated flame retardants, and certain pesticides are linked to loss of intelligence, attention deficit disorder, and Pervasive Developmental Disorder in children.”
Landrigan said he expects future research to link specific chemicals to autism. He told Examiner.com, “As research continues to accelerate as the National Children’s Study rolls out, we probably will over the next decade establish additional credible connections between certain chemical exposures in early life and the development of autism in children.”
Autism advocate Lyn Redwood discusses mercury vaccine controversy, chelation, treatment and recovery
Autism is a treatable biochemical medical condition rather than an incurable psychological disorder, says Lyn Redwood, whose son recovered from autism after having mercury removed from his body. Redwood’s son Will is one of a growing number of children who have recovered from autism or made excellent progress from behavioral therapies and/or biomedical treatments.
Redwood, a nurse practitioner in pediatrics and women’s health, believes the medical establishment should conduct more research on the environmental causes of autism as well as the possible link between autism and vaccines. She says children with autism may be susceptible to environmental triggers of autism, and often have additional medical problems that can offer clues as to the causes and possible treatments of autism.
Redwood is the co-founder of two autism advocacy organizations, the Coalition for SafeMinds and the National Autism Association. She is also a member of the Interagency Autism Coordinating Committee, which coordinates autism research within the Department of Health and Human Services and meets quarterly in Bethesda, MD or Washington, D.C.
Redwood’s son Will was given 62.5 mcg of mercury in his vaccines at the age of two months, which was 125 times the EPA’s allowable daily amount of mercury exposure of 0.1 mcg per kilogram. By six months of age, Will had received 187.5 mcg of mercury in his vaccines.
Redwood kept a lock of hair from her son’s first haircut, at 20 months of age, which she tested in 1999 when Will was five years old after she suspected mercury poisoning. The hair sample had 4.8 parts per million (PPM) mercury and 40.2 PPM aluminum, which exceeded the EPA’s action levels for mercury and aluminum by more than four times.
Will developed normally up until the age of one. He was a happy, healthy, energetic baby. Then he lost language and eye contact. He developed strep throat, which is very unusual in infants, and had digestive issues and other puzzling medical problems.
Will didn’t begin to speak again until after Redwood and her husband Tom, a physician, decided to use the chelating agent DMSA, (Dimercaptosuccinic acid) to remove the mercury from their son’s system. After chelation Will gradually regained speech and eye contact, and his general health improved.
The Redwoods started Will’s chelation treatments when he was 5 and a half. By age 7, he took the Iowa Test of Basic skills, a national standardized test, and scored in just the third percentile. At age 9, he took the Iowa test and scored in the 51st percentile for children his age.
The Redwoods believe that those chelation treatments, combined with various supplements and behavioral therapies, led to their son’s recovery from Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS), one of the autism spectrum disorders.
Their son is now a successful high school student who has excellent communication, social, and academic skills and has recovered from PDD-NOS.
Interview with Dan Olmsted, Mark Blaxill: 'Age of Autism-Mercury, Medicine, and a Manmade Epidemic'
In their new book, The Age of Autism: Mercury, Medicine, and a Manmade Epidemic, Dan Olmsted and Mark Blaxill make a convincing case that the autism epidemic is largely environmental rather than genetic. They argue that mercury from pollution, commercial products, and vaccines has contributed greatly to the rise in autism over the last 70 years.
Mike Frandsen: "In the last 20 years or so, so many parents have been proactive in looking for solutions. You mention the disdain that the medical community often has for that “warrior parent” mentality and write that they have a “shoot the messenger” type of mentality when parents are right. Do you see that changing at all in the future? "
Mark Blaxill: “The medical industry in general has a great deal of difficulty with their consumers. And what we’re seeing here is a consumer movement of parents who are unhappy with the medical establishment’s response to the autism epidemic. They are unhappy with the options that they have for treating and caring for the future of their children, and they are unhappy with the official doctrine about what happened and why. So that’s a fundamental problem in the industry itself. One of the metaphors is the auto industry. Ralph Nader basically forced the auto industry kicking and screaming into making safer products and the auto industry changed.
Let’s hope the consumer movement here can drag the medical community into the 21st century into more responsible approaches towards safety management, towards environmental exposures in autism, towards better treatments for autism, and towards better safety management in products like vaccines. I’m not holding my breath. The medical industry is one of the most powerful industries in the world, and they are certainly resistant to change and they have more resources than the auto industry did against Ralph Nader. But we’ll have to see. That’s why we wrote the book.”
Congress: CDC misled public about Washington, D.C. lead in water crisis, lead was toxic for some
The Centers for Disease Control and Prevention recklessly misled the public about the safety of lead levels in the water in Washington, D.C. between 2001 and 2004, according to a disturbing and damning congressional report released last month.
The Report, “A Public Health Tragedy: How Flawed CDC Data and Faulty Assumptions Endangered Children’s Health,” was conducted by the House Subcommittee on Investigations and Oversight of the Committee on Science and Technology.
The investigation found that a 2004 CDC report that was rushed to calm the fears of the public after the D.C. lead fiasco used flawed data to come to the conclusion that lead levels in the water were safe.
The discredited report, published in the Morbidity and Mortality Weekly Report (MMWR), has since been widely quoted by media and government agencies across the nation to tell the public that drinking water containing high levels of lead is not a health hazard.
For example, the Environmental Protection Agency issued a fact sheet after the MMWR report that said about D.C., “Residents with high lead levels in their tap water did not have elevated blood levels.” This blanket statement turned out to be inaccurate. In addition, D.C. officials told the public that paint, and not water, was the cause of any high blood lead levels.
The congressional report stated that, “In its hurry to release ‘good news,’ CDC ignored decades of its own research and that of the scientific community when it claimed that elevated water lead levels in the District of Columbia did not significantly impact the blood levels of children.”
The congressional report concluded that the CDC knowingly downplayed the danger of lead in water in D.C.
Some of the symptoms of lead poisoning mimic the symptoms of autism, such as learning difficulties, loss of interest in play, hyperactivity, being easily distracted, impulsiveness, aggressiveness, poor coordination, weakness in hands and feet, and seizures. Although no large-scale studies have linked lead to autism, a 2005 study by Dr. Theodore Lidsky and Dr. Jay Schneider linked autism and autistic symptoms to lead poisoning in two boys.
Miscellaneous
Facilitated Communication (FC) enables non-verbal people on autism spectrum to communicate by typing
“Thank you for inviting us today. I utterly happy to be here with you. I am a person with autism.”
Chammi Rajapatirana, a 36-year old writer, poet, and advocate with autism, typed those words independently during a presentation about Facilitated Communication (FC) in Sri Lanka in 2009. See the video here.
FC is a supported typing technique used by people with autism and other disabilities who have absent or impaired speech.
FC has been a godsend for many people with autism who were formerly considered unintelligent, and even retarded, and later proved to be not only keenly aware of what is going on, but also smart, articulate, and eloquent in their communication. Many FC users have learned to type independently after first having physical support.
Chammi notes that we live in a world in which people who cannot speak are assumed to be unintelligent. At first glance, to many people, it doesn’t seem that a person who has little or no verbal ability would be intelligent and able to communicate effectively. Chammi and many other FC users have proven the opposite to be true.
Adding to problems in speech, people with movement disorders may mistakenly be viewed as unable to comprehend requests, when in fact the desire to perform an action is there but the body will not always follow. Many people with autism are wrongly believed to have lower cognitive skills than they actually possess, but physical problems may prevent them from expressing their level of understanding.
Larry Bissonnette and another FC user, Tracy Thresher, star in an upcoming documentary, Wretches & Jabberers: And Stories from the Road, directed by Oscar winner and twice Academy Award-nominated filmmaker Gerardine Wurzburg, who also directed Autism is a World. Both Bisonnette and Thresher can speak the words that they type.
During their globetrotting tour, Bissonnette and Thresher visited Chammi in Sri Lanka, Naoki Higashida in Japan, and Antti Lappalainen and Henna Laulainen in Finland, who all communicate through typing (watch the movie trailer here).
The mainstream medical and scientific establishment doesn’t like to admit when it is wrong, but history shows us that those who determine the direction of research as well as what are perceived to be acceptable interventions for autism are far from infallible.
Claiming that FC is not a valid communication technique, resulting in countless people with autism not being given the opportunity to communicate in the only way they might be able to, has caused untold damage to the disability rights movement.
Similarly harmful was the acceptance of the “refrigerator mother” theory. That was the theory that explained that autism was caused by the coldness of the mother, and it was recognized as truth as recently as 40 years ago.
There are other examples of the scientific establishment being wrong in the past – insisting there was no such thing as regressive autism, claiming children with autism could not get better, and saying autism was entirely genetic. All of these assertions turned out to be inaccurate, usually astonishingly so.
HHS, NIH and other federal agencies should hire more employees with autism and other disabilities
The federal government’s Schedule A Program intended to facilitate the hiring of people with disabilities is severely underutilized. The hiring authority has rarely been used to hire people with cognitive, developmental or psychiatric disabilities. The federal government should develop and implement policies that ensure that people with autism and other disabilities are given an equal opportunity to contribute to the missions of government agencies.
The unemployment rate of people with disabilities is approximately 70 percent. The Office of Personnel Management (OPM) created the Schedule A hiring authority to allow for greater recruitment and hiring of individuals with disabilities. Schedule A allows federal agencies to “provide disabled individuals a unique opportunity to demonstrate their ability to successfully perform the essential duties of a position with or without reasonable accommodation.”
OPM states that the Schedule A certification is used to "appoint persons who are certified that they are at a severe disadvantage in obtaining employment…Certification also ensures that they are capable of functioning in the position for which they will be appointed.”
Unfortunately, the government’s record on hiring employees with disabilities through the Schedule A program has been abysmal. The agencies that should be leading the government are among the worst offenders, starting with the Department of Health and Human Services (DHHS), its Operating Divisions including the National Institutes of Health (NIH), and the National Institute of Mental Health (NIMH).
NIMH, an organization whose mission is to "work to improve mental health through biomedical research on mind, brain, and behavior," does not seem to have an equivalent program aligned with that mission to ensure that those disadvantaged with disabilities can fairly contribute to advancing that mission.
Given its position as the "steward of medical and behavioral research for the Nation," NIH should be particularly sensitive to attracting and retaining people who are traditionally underrepresented, including those with disabilities. A failure to proactively include employees from all segments of society in the hiring process threatens to leave these individuals languishing with difficulties and frustrations.
A 2008 report published after Freedom of Information Act requests were sent to federal government agencies asking how many times the Schedule A authority was used to hire people with disabilities showed that most federal agencies underutilized the Schedule A program or did not use it at all. In almost all cases in which the hiring authority was used, hires of people with physical disabilities outnumbered those with cognitive disabilities and psychiatric disabilities by an extremely wide margin.
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