In what has seemingly become an epidemic within the autism community, another child with autism has tragically drowned as a result of a wandering-related episode. Seven-year-old John Burton, Jr., from southeast Indiana, had just moved into a new neighborhood and disappeared while playing with the family dog. Burton’s mother noted that her son was unfamiliar with his new environment as they had just moved into their home the day earlier.
Search teams began looking for John soon after he disappeared and became increasingly alarmed when the boy’s dog returned home later in the afternoon, wet and alone. Burton’s body was discovered on Sunday in a nearby creek, one day
after he went missing.
We have reported extensively on this site about the recent cases of autism-related deaths associated with wandering. With tragic incidents like these happening at a
near-monthly rate, much more awareness and attention are needed for this out-of-control problem.
Drowning has been cited as the leading cause of death for children and adults with autism, with a large majority of these incidents occurring during wandering episodes. Exposure deaths due to wandering have also been very problematic in recent
years, most notably in the winter months. Here are a few recent cases that underscore just how serious this problem has become:
James Delorey – December, 2009. A seven-year-old boy with autism from Cape Breton, Nova Scotia, went missing after following his dog into a wooded area. He was later found huddled in the fetal position in thick brush and
snow less than a mile from his home. He was rushed to the hospital, but eventually passed away from severe hypothermia and exposure.
Mason Medlam – July, 2010. Five-year-old with autism who died of his injuries after being pulled from a small pond in a town outside of Witchita, Kansas. Medlam wandered from his home out of a partially opened window and had
been missing for more than a half-hour before being discovered.
Zachary Clark – August, 2010. A five-year-old boy with autism from Tucson, Arizona who was pulled from a golf course pond located less than a half-mile from his home. Despite efforts at CPR, Clark was pronounced dead shortly after being airlifted to a nearby hospital.
Nathan Kinderdine - August, 2010. A seven-year-old with autism from Ohio, wandered away from his class during a summer enrichment program at school. Kinderline was found by a custodian at the bottom of the school’s indoor
swimming pool and although school nurses tried to revive him, he was pronounced dead shortly after his arrival to the hospital.
Skyler Wayne – October, 2010. An eight-year-old boy with autism who was found in an Idaho river three houses away from his home. Wayne was in the care of a babysitter at the time of the incident and was found in less than two
feet of water.
Savannah Martin – February, 2011. A seven-year-old girl from Oklahoma who was found face-down in a chilly pond about 50 yards from her home. Her two-year-old brother was also found with her in the water, but was face-up
and buoyed by the Styrofoam in a bicycle helmet he had been wearing. Despite the efforts by the girl’s mother to revive her, Savannah was later pronounced dead.
Jackson Kastner – March, 2011. Four-year-old who drowned in a Michigan river after wandering from his home. The river was located 300 yards from Kastner’s home and swept him away — he was later found a mile-and-a-half downstream. The boy was airlifted to a hospital but attempts to revive him were unsuccessful.
Adam Benhamama– April, 2011. A three-year-old boy who is both non-verbal and deaf, disappeared during a game of hide-and-seek while his father briefly went inside the house they were visiting. Adam’s body was recovered
almost one month later over one mile downstream from where he initially disappeared.
Blake Murrell – April, 2011. A four-year-old youngster from Oklahoma that was found deceased in a duck pond a short distance from his home. Despite an investigation for potential negligence, Murrell’s family was exonerated in
what police describe as "an unfortunate accident."
John Burton, Jr. – June, 2011. Seven-year-old John had just moved into a new Indiana neighborhood and disappeared while playing with the family dog. A search was initiated when the dog returned home without John. Despite an intensive search, he was found the next day in a nearby creek.
Our thoughts and prayers are with the Burton family during this difficult time and hopefully, this will be our last story on this topic for the foreseeable future.
In our modern society filled with stress, getting “back to the garden” is a good idea for everyone. According to a 2010 report released by the Royal Horticultural Society (RHS), teaching gardening to special needs children and young people is especially conducive to their development. Gardening is practical and process-orientated, suiting the visual and learning-through-doing needs of this group perfectly.
Ninety-five students with various developmental disorders, including autism, participated in a year-long study of teaching gardening in school. Over the course of the study, the avid gardeners grew in confidence and became more engaged in the activities, embracing a new level of responsibility for their own learning and progress. Interactions with one another and with adults improved as participants who once only wanted to work alone developed as members of a team. The students themselves reported that gardening calmed them down and made them happy.
Gardening can also be a gateway to meaningful future employment for young adults with autism. The first farm model for adults with autism was established at Somerset Court in England in 1974.
BitterSweet Farms in Ohio is the first of its kind in the United States and currently has three campuses providing comprehensive services to individuals with autism. In North Carolina, Carolina Living and Learning Center is part of the University of North Carolina at Chapel Hill. New Hampshire-based Farmsteads of New England was established in 2000, and now Full Spectrum Farms in North Carolina has enjoyed huge success in its first year of operation, providing fresh fruit, vegetables and flowers to local restaurants and meaningful work to its residents with autism.
The quiet, simple life and meaningful work of farming is conducive to the well-being of individuals with autism. Whether you garden with your child on acreage, in your yard or with pots on your apartment balcony, the benefits are great. Here are some tips for gardening with your special needs child, courtesy of Gardening-Guides.com:
* Paint your gardening tool handles a bright color so you can easily spot them when you’ve set them down.
* Improve your grip. Use colorful electrician’s or bicycle tape to add foam padding to hard-to-hold gardening tool handles.
* Go for the lightweight. Tools don’t have to be heavy to be sturdy. Aluminum handled and fiberglass reinforced nylon tools are both strong and lightweight.
* Consider handle extenders for short tools.
* Replace old and broken garden tools and tool handles with ergonomically correct models.
A recent post by one of our authors demonstrating what it’s like to have autism inspired me to research the effect of color on children with autism, with the intention of offering suggestions for
creating peaceful physical environments for them.
Color is a major issue in the design of spaces for children with autism and researchers have even found anomalies in the eye components of these individuals. Their rods and cones appear to have changed due to chemical imbalances or neural deficiencies.
In a test of children with autism, 85% saw colors with greater intensity than neurotypical children, with red appearing nearly fluorescent, and vibrating with intensity. Only 10% saw the color as neurotypical children do and only 5% of the children with autism saw muted colors. This small percentage of children would be alone in seeking out primary and other vibrant colors because they perceive everything as gray.
Muted colors have a calming effect upon children with autism. Pale pink has been demonstrated through tests to be their favorite color overall. Cool colors such as blue and green are also soothing. A monochromatic color scheme is
preferable, designs in fabric and wall hangings should be non-linear and non-obtrusive. Primary colors should be limited to lightweight toys that can be put away.
Simplifying and reducing the amount of stimuli is of paramount importance. Keeping toys and books out of sight reduces clutter and stimulates verbal requests from the child. However, items such as coat and hat racks should remain in clear view to help the child learn the skills of independence.
Shades, with their multitude of lines, as well as drapes can be distracting. Inside mount blinds are optimal, with the window frame painted the same color to create a uniform effect.
While carpeting is recommended for its noise reduction and safety features, a pre-finished hardwood floor overlaid with a 100% wool carpet, along with a jute back is best for its low toxicity and minimal chance of provoking allergies.
Lighting is also an important consideration as glare, noise and flickering can create sensory havoc. Uplighting or diffused lighting is suggested to reduce glare. Florescent lights are to be avoided.
Previously, I wrote an article guiding parents towards the best iPad apps for expressive language that I discovered during the course of doing some research.
Today, while browsing my same source for that article, I discovered that on Saturday, June 11, 2011,
beginning at 9 a.m. EDT, there will be an "App Party" at http://www.facebook.com/a4cwsn. Gary James, an app researcher and father of two children with autism, has persuaded leading developers to donate over 3,000 apps to special needs families. James is also personally donating up to ten iPads that will be given away over the weekend as well.
This philanthropic event is designed to generate awareness of the multitude of apps available to families and
educators and foster communication between developers and the people they serve. Seven iPads will also be randomly given away through a raffle-like event to individuals who have donated to the cause. Additionally, several other iPads and all apps will be given away unconditionally to those who simply join the Facebook page and participate virtually in the event.
James has emphasized that this is not a fundraising or revenue-generating event and has organized this strictly for autism and special needs awareness.
If you’re up on Saturday morning and at your computer, it might be worth checking out.
To learn more about the A4CWSN App Party, the video below further explains it in detail:
Parents and caregivers of children with autism know that dealing with meltdowns is a part of life. We become adept at calming down our child as quickly and as best we can, whether at home or in public. It’s hard to surrender a child to environments where we are not present, knowing that others won’t know how to react. I’ll never forget the babysitter that called the fire department when one of my son’s had an anxiety attack.
But nowhere is this more frustrating than at school, where children are frequently castigated and punished for exhibiting symptoms of their disorder. Countless times, I have shared my hard-earned strategies for managing my son’s meltdowns with teachers and administrators in hopes that they would employ strategies that would prove helpful instead of inflammatory. Only one teacher ever listened to me and that all-too-brief period my son spent in her classroom was the only time he made real gains in being part of a group and becoming self-regulating.
Special education teachers in Seattle’s school system aren’t required to have any training in autism, even the ones heading autism inclusion programs. Teachers don’t like being told how to do their jobs, especially by a parent they consciously or unconsciously hold responsible for the behavior of an unmanageable child. Members of your child’s IEP team can readily turn adversarial when their classroom strategies are questioned.
Recently, I found an article called “Managing an Angry Episode” on the website of Minds and Hearts, which is an Australian autism clinic where Dr.
Tony Attwood works once a week.
I recommend downloading this pdf file and taking it to your next IEP meeting and/or presenting it to your child’s teacher. It could really help lay the groundwork for discussing best practices for coping with an inescapable reality of autism and the meltdowns associated with it.
Many parents of children with autism often wonder what their child is thinking and feeling and frequently pose the question, "I wonder what’s going on inside of that head?"
Well, thanks to a YouTube user that goes by the handle of WeirdGirlCyndi, viewers have been given the opportunity to briefly glance inside the mind of someone with autism.
Sensory processing disorder (SPD) is an often-debilitating condition that commonly exists in those with autism, although it’s not considered a core characteristic. Individuals with SPDs process the
world in a much different way than neurotypicals, often causing "sensory overload."
Because of these issues, many of those with autism (especially non-verbals) act out as a result of this overwhelming stimuli.
Some of the milder symptoms of sensory disorders include covering one’s eyes when exposed
to normal lighting or covering one’s ears despite the absence of loud sounds.
Late psychologist and occupational therapist Dr. A. Jean Ayres compared SPD to a neurological "traffic jam" that prevents certain parts of the brain from properly processing information from the outside world.
WeirdGirlCyndi does a great job in detailing these challenges and in her video description,
writes the following:
"I am an autistic adult who is sick of so-called “experts” trying to explain what they think an autistic person is going through. They think they can “fix” autistic children by forcing them to act normal. Watch this video and see how normal you think ANYBODY can act when they’re going through what I simulate for you all."
Those with autism can experience sensory processing disorder in varying degrees and the video below is
a fascinating look at the challenges some with autism endure on a daily basis, unbeknownst to those around them.
Be sure that your speakers are at a reasonable volume level before viewing the video (not too
high). After viewing it, you’ll know why:
Recently, I interviewed Michael Buckholtz, founder of Aid for Autistic Children Foundation and an individual with Asperger’s Syndrome and OCD. Michael is a songwriter, performer, multi-platinum record producer and among other things, has worked with M.C. Hammer during the course of his music career. He also served our country in the United States Navy.
After experiencing first-hand the financial toll autism takes on families, Michael wanted to make sure that the poor and underprivileged dealing with autism were given a fighting chance. Since 2007, he has been on a full-time mission in finding a solution to the financial disparity families and individuals coping with autism face.
I love the work Michael is doing for the autism community and my exchange with him was both motivational and inspirational. Here are some excerpts:
Q:Tell me about yourself, your family and your advocacy for autism.
A: I was an obedient, high-strung child. I loved music and started composing songs by 8-years-old. I have two brothers, both on the spectrum — the oldest is a Desert Storm Army vet. My father is also on the spectrum. He’s a genius and an Air Force veteran. Also an Air Force veteran, my mom held us all together. She always felt like the odd person out, not really understanding our “language” or “behaviors.” I was in my late twenties when she made the discovery that we were all on the spectrum. That day I will never forget. No one was there to help our family when tough times hit us. When our wives left us, when employers and business owners released us because we were not catering to enough of the politics that permeates the workplace, times were very hard. I became a single parent because of my autistic quirks. No one fully understood us or really cared, especially in the black community. We did not look like the faces of autism the public had been made used to, so we often felt like we didn’t matter. As a result of my experiences, I started Aid for Autistic Children Foundation, Inc. using a large portion of my music royalties and with the help of my family.
Q:What do you see as "mission critical" for the autism community?
A: Educating autistic children without prejudice. As parents and educators, you have to drop literally everything you see or believe and start from a blank slate. If one’s child was blind, the first consideration isn’t to start looking for ways to “fix” them or ship them off somewhere. Autistic children are no different. These are human beings, first. Kindness and compassion should be the superior treatment these children receive. I know this will be difficult. Everyone needs to participate in this effort. Looking for ways to improve the lives of autistic children, rather than “fixing” them for personal comfort or
convenience should be the focus.
Q: What are some of the issues adults with autism are dealing
A: Many autistic adults, like me, wherever they fit on the spectrum, have felt systematically
shut out of the broader national conversation about what our real needs are. In an effort to
counteract this mainstream media misdirect, more autistic adults seem to have found a voice
through social media such as Twitter, YouTube and Facebook. We feel abandoned. The
primary focus is on the children, which is a good thing, but it should not be to the exclusion of adults on the
spectrum who really need their community to understand the struggles they are having.
Q:Several years ago, you went on a hunger strike. What did you want to
accomplish and did you accomplish it?
A: I wanted to bring attention to the financial disparity many families raising autistic children are experiencing and not just families with young children. I’m talking about elderly parents with autistic adults still living with them. Many cannot retire and all face certain poverty without some type of comprehensive debt relief program. I think I’ve done that.
Q: What is your vision going forward?
A: I want to duplicate the efforts of Aid for Autistic Children Foundation to meet the needs of
everyone across the United States. I eventually want to bring this empowerment program to countries in South America, S.E. Asia, China, Africa, Middle East and Australia. I see a debt free and empowered autistic community around the world re-engaged and participating in our modern 21st century economy. Aid for Autistic Children Foundation will also be a chief employer of the autistic and of parents who advocate for them.
Q: What keeps you going?
A: Knowing how much my mom sacrificed emotionally and physically. She suffered many
emotional setbacks and even a stroke, brought on by emotional stress, while continuing to help me, my brothers and father. I owe her and I owe no less to myself and the autistic community. I just want to make things better for a lot of people who remain forgotten or purposefully dismissed. I’m also looking forward to marrying, again. I have to work extraordinarily hard to make a life possible for us. I will not quit until I do.
Q: Why is it so difficult for adults with autism to find jobs?
A: Firstly, we are already adults. That means we need to be working, productive members of society right now. The corporate perception is that adults (in general) are NOT the innovative
thinkers. It’s the young people. That already leaves adults, as a whole, out of job-seeking contention. So, the first big issue is the perception that adults in the workplace are no longer useful, therefore, ineligible for job placement. If you are autistic, well, there’s a whole other more socially entrenched problem of office politics that keeps many adults on the spectrum out of contention for employment or regularly terminated from employment. The good news is that in other countries many American’s consider “Third World,” they are doing
amazing well in hiring autistic adults. Many of us have the ability to work independently of others doing tedious and rigidly repetitive work. For example, we make great software systems testers (I’d REALLY enjoy doing that, myself!). We can be quite precise in our attention to detail. There are plenty of reasons to hire autistic adults, but because of the demonization leveled at people who are considered ‘disabled’, it’s going be tough to convince a skeptical corporate elite that a mass-hiring of autistic adults may raise their level of efficiency, while improving quality control.
Q:What is the next step for your organization?
A: We’re gearing up for a national Aid for Autistic Children Foundation sponsored capital
campaign event called The H.A.P.P.Y.™ Project (Helping Autistic People Progress Yearly). We will begin in our headquarters in Macon, Georgia, focusing on those families raising autistic children and autistic adults that need financial relief the most. The capital campaign will eventually make its way to other states and we will make those dates and locations known as soon as we have them.
Q: How did you get to meet and work with M.C. Hammer?
A: When in the Navy, I was assigned to bunk in a room with a fella by the name of Stanley Kirk Burrell while deployed in Japan. His nickname was Hammer or “Hamm,” for short. I
purchased a lot of music equipment in Japan, where we were stationed and from there, we
started to really connect. After our tour of duty, we kept in touch. A few years and $45 million
dollars later (not my dollars!), I was in the middle of working for the most popular rap artist in
the world. I was 19-years-old at the time we met.
Q: What would you like your legacy to be when it comes to autism?
A: I just want to leave a legacy of music, kindness and compassion for all types of
people. I love people — not in a "customer service" kind of way. I’m deeply fascinated by how we are made. Human beings are amazing and are capable of so much that is positive and wonderful and I’d like to see us one day tap into that awesomeness. I’m an autistic person and hope that just being the person I am will be enough of a legacy for the cause.
With these types of issues common for special needs guests at theme parks, San Antonio-based philanthropist Gordon Hartman recently opened “Morgan’s Wonderland,” a 25-acre amusement park designed for special needs children, while still appealing to everyone.
Inspired by his own disabled daughter’s exclusion from playground activities, the park is both innovative and heartwarming, with attention paid to every detail, including a Braille-decorated jungle gym wide enough to fit two wheelchairs side-by-side, waist high sandboxes accessible to all and an indoor extravaganza of activities called “Sensory Village."
Generously spread out, yet designed to not be exhausting, the one-year-old park has about 20 attractions from active (Butterfly Playground) to easygoing (a train circling a mile-long loop through the park and around a lake). Most tranquil is the Sitting Garden, a quiet enclave that’s a favorite among parents of children with autism.
The first of its kind in the nation, Morgan’s Wonderland has attracted more than 100,000 guests to San Antonio, despite having little national advertising. Individuals with autism, orthopedic impairments, mental retardation and seizure disorders are among the most regular visitors, yet all children will enjoy its many opportunities.
As guests arrive at the park, they are assigned special RFID (Radio Frequency Identification)
wristbands that identify their family or group. Monitor stations are located throughout the park and if a family becomes separated, they can quickly be reunited when a bracelet is scanned.
In a true testament to the generosity of the park’s creator, admission for people with special needs is
free and adults accompanying them are just $10. General admission is $15. Reservations are recommended as the number of guests is limited to ensure the quality of the experience. However, people traveling long distances and arriving without reservations won’t be turned away.
Morgan’s Wonderland also features a community outreach in the form of an Adaptive Sports and Fitness Program, Scholastic Field Trips and Extended Learning Outreach. The Monarch Academy, a special-needs school initially serving grades six through twelve, will be opening at the end of this summer.
In a previous
article, I discussed how girls with undiagnosed Asperger’s Syndrome (AS) often manifest eating disorders. Researchers at the Maudsley Hospital in London compared and contrasted autism and anorexia for several years and found that while patients with autism struggle to connect with people in the outside world and anorexics are obsessed with other people’s perceptions of them, there are still some compelling similarities between the two conditions.
For example, both anorexics and individuals with autism exhibit obsessive/compulsive behavior and rigid
thinking. Tic disorders are fairly common among individuals in both populations and both have trouble dealing with change. Additionally, researchers found that some 20 percent of anorexic patients unknowingly
suffered from Asperger’s Syndrome.
Dr. Tony Atwood, autism and AS expert, reports that early ritualistic behavior around food can be the precursor to eating disorders. Problematically, some girls with Asperger’s begin to treat their weight as their special interest, becoming obsessed by the science of calories as they pore over charts and tables.
Certainly, societal pressure for young women to be ultra thin is unhelpful and those with Asperger’s tend to be perfectionists, feeding into these issues of body image.
The world of dance attracts this profile of young women and as a college dance major, I can attest that eating disorders were at an epidemic level in my department, where one could never be considered too thin.
Of course, anorexia is not exclusive to girls. For years, my son seemed to regard eating as a necessary evil and I worried that he was anorexic. It turned out that he had severe undiagnosed food allergies and subsequent gastrointestinal problems. Once changes in his diet were made, he began to enjoy food for the first time and his extreme emotional outbursts disappeared. Clearly, his aversion to food and his meltdowns had been expressions of suffering.
Parents of young children with autism know well that eating issues arise early on since food poses such intense sensory challenges. Frequently, the child selects food for texture alone and it must be arranged in a particular way in order for them to consider it edible. Children with autism are frequently beyond picky in their eating habits.
In trying to introduce a new food, it’s best to take it very slowly. Say you want to add carrots to your child’s diet. First, simply have carrots in the same room with your child, perhaps taking them out and washing them while he or she is in the kitchen. After they are comfortable with that, have them help you wash or otherwise handle them. Next, have some on the table. Finally, put a very small piece on their plate amongst all their other favorite foods.
Keep doing that until they try it. Patience is key.
Eating disorders within the autism population can manifest at any time and it’s important to realize that children and adults on the spectrum are not immune to this problematic issue.
Repetitive behaviors in those with autism have long been viewed as something to be eradicated. My own son’s problems in school began with his teacher’s intolerance for his incessant rocking and pencil tapping in class. These compulsions got him habitually thrown into the hall, and eventually out of school.
But times are changing and so are attitude towards self stimulating or “stimming” activities.
recent press release, The Son-Rise Program announced that it had been voted
"Best Autism Therapy," which included input from over 4,000 autism
professionals and parents. The Autism Treatment Center of America, which runs
the popular program, issued this statement regarding repetitive behaviors:
"We have a deep acceptance of and respect for our children. That enables us to reach across the chasm separating their world from ours by doing something bold and unusual. We join, rather than stop, a child’s repetitive, exclusive and ritualistic behaviors. Doing so builds rapport and connection, the platform for all future education and development. Participating with a child in these behaviors facilitates eye contact, social development and inclusion of others in play."
Behavior is a form of communication. When other avenues of communication are closed for a child with autism, behavior is how we get a sense of what they want or need. The better we are able to decipher their behaviors and what they are trying to express, the more effective we will be in helping them.
Repetitive behaviors have even emerged as a civil rights issue. The Autism Self Advocacy Network (ASAN) points to the fact that fleeing undesirable situations is a behavior that often indicates that a person with autism is being emotionally or physically abused. They fear that a medical diagnostic code for wandering and/or bolting will lead to proactive restraint, shutting down the person’s ability to express that they are in an intolerable situation. Their fear is certainly not ungrounded given some of the harrowing conditions in our schools and residential treatment centers.
Other individuals with autism point out that just about every person performs repetitive behaviors to cope with
their stress, some are just deemed more socially acceptable than others. Few neurotypical people are castigated for pacing, twiddling their thumbs or turning over rosary beads. And there are also repetitive behaviors of Buddhist monks who move a grain of sand at a time, resulting in exquisite sand paintings.
Tony Attwood, the famed autism expert, once said that the way to cure Asperger’s is to have a child with Asperger’s go to his or her room and close the door, meaning the problem with autism is as much with the world’s acceptance of it as it is with the individual with autism.
It is encouraging to see the gradual shift of society’s understanding and acceptance of repetitive behaviors by those with autism, but many would agree we still have a long way to go before the stereotyping, labeling and ostracizing are completely eliminated.
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