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.
Anecdotal stories pore in about the wonderful and therapeutic effects that animals have on children with autism. Reports from Thailand about children on the spectrum riding elephants leave me wishing our elephants weren’t confined to the zoo. But Hippotherapy and Therapeutic Riding are available for our children to benefit from riding a large animal — namely, the horse.
Hippotherapy, derived from the Greek word “hippo” for horse, is a physical therapy provided under a physician’s supervision as part of a comprehensive therapeutic program benefiting individuals of all ages with physical and/or developmental disabilities. Therapeutic Riding has many of the same benefits, but it is more of a recreational riding program for the disabled and does not usually involve a physician’s supervision.
Hippotherapy and Therapeutic Riding use a horse’s multidimensional rhythmic movement, which resembles the natural walking gait of human’s to achieve specific therapeutic goals. Specially trained physical therapists, occupational therapists and speech-language therapists have reported the following results in patients with developmental disabilities:
* Relaxed Muscles
* Increased Balance
* Greater Muscle Strength
* Sharpened Hand-Eye Coordination
* Better Sense of Body Awareness
* Better Sense of Self Control
* Better Sense of Self Confidence
* Improved Communication
* Improved Concentration
* Improved Socialization
* Improved Patience
* Improved Fine Motor Coordination
* Improved Sensory Integration
A horse moves a person in multiple ways by tilting, rotating and moving the rider, which would take an entire session of difficult physical therapy exercises to achieve. Sitting on a horse improves core muscle strength, muscle symmetry, balance, posture, flexibility, circulation, coordination and breathing (which encourages speech). Hippotherapy can greatly improve an individual with autism’s sense of their own bodies in space. Often riding bareback, the child receives sensations from the horse’s movements, making a child aware of his or her body in relation to the horse. The tactile sensations the child receives from the horse’s fuzzy skin, rough mane and tail, as well as the soft nose also help to draw the child out of their shell.
The excitement of riding encourages speech. Non-verbal autistic children have been known to suddenly start talking in order to use the horse’s name and get it moving.
Special relationships develop with the horses who are specifically chosen and trained to be gentle, patient and calm. The unconditional, non-judgmental bond between the horse and the patient encourages the child to form an attachment with another living being, which translates into other aspects of their lives.
It should be noted that children with autism can be initially upset by the new environment and activity of riding, but that rapidly subsides when the riding gets underway. Some equine therapy ranches have a policy of letting the horse pick the child, a unique method that has had excellent results. A staff person leads a child to a horse, and watches for the horse’s reaction. If the horse dips his head or nuzzles the child, the child has been “chosen.”
As the individual’s with autism’s confidence grows, therapists frequently see them making eye contact with their horse, then with people. Some riders progress to learning how to groom and tack and otherwise take care of their animal, a milestone in assuming responsibility.
Equine therapy has a calming effect on individuals on the spectrum and has the added benefit of getting our largely urbanized youth back out into nature.
In light of my most
recent post about zoos and children with autism, it was only fitting that our family decided to pack our bags and head to Disney’s Animal Kingdom at the Walt Disney World Resort in Orlando, Florida. Having never been to this specific park, we were both anxious and curious as to what the trip would hold
for our high-functioning, nine-year-old son.
For starters, the place itself is amazing and is a theme park, zoo and wildlife preserve all rolled into one. For animal lovers, there’s just about everything you could imagine and plenty of animal exhibits, including several walk-through "treks" that contain a host of animals from around the
world. There is even a special section of the park devoted to Dinosaurs.
However, a major criticism is that many of the "featured"
attractions at this park are not autism-friendly at all. Most of them are likely to put a child on the spectrum into sensory overload mode, which actually occurred with our son in several instances. Here’s a brief overview:
DINOSAUR – Regardless of how much your child may love dinosaurs, this ride could be a traumatizing experience. This is a bouncy, dark and extremely loud ride that can be summed up in one word: intense.
Expedition Everest – Much like DINOSAUR, this is also an extremely intense ride. This is a full-blown roller coaster that actually goes backwards in some spots and there are also loud sounds and fast drops and turns. While there are no upside-down loops, this roller coaster is unlike Big Thunder
Mountain Railroad and is fast and extreme.
Kali River Rapids – Expect to get soaking wet on this ride and it is a good idea to bring a change of clothes as a result. If your child has tactile sensitivity with water, this ride needs to be avoided.
It’s Tough to be a Bug 3D Show - A great 3D show that gets intense halfway through. Hopper, the grasshopper character from "A Bug’s Life" decides to get "revenge" on the audience, unleashing an army of spiders, bees and other "angry" insects. Dense fog, darkness and stink bombs are all part off this sensory-filled experience. Out of all the rides, our
son had the most difficulty coping with this one.
Kilimanjaro Safaris – By far, this was the highlight of our visit to Animal Kingdom. This is a simulated safari through the African savanna, which includes a 100-acre tour with a chance to see giraffes, rhinos, lions, crocodiles and elephants (just to name a few). What struck me the most about this ride is that the vehicles are not on safety tracks like most other Disney rides. The tour takes place in an actual safari truck with an actual driver. Other than a few bumpy moments, this ride should thrill your animal-loving child.
Overall, Disney’s Animal Kingdom was a great experience. However, it was a bit disappointing that most of the highlighted attractions created sensory difficulties with our child. Regardless, this is no reason to avoid the park as there is plenty of other things to do, including some less intense rides such as TriceraTop Spin.
Summer can be a time of stress for a child with autism and parents are mindful of not wanting their children to lose ground educationally over the long break.
Reading is an important element of the summer structure and you’ll want to create
a pleasant experience outside his or her usual routines. A great way to prepare your child for the big change is by reading books
Seattle Children’s Hospital Autism Center recommends these books to help your child get ready for
• The Night Before Summer Vacation by Natasha Wing
• How I Spent My Summer Vacation by Mark Teague
• Go Go America by Dan Yaccarino
• Last Day Blues by Julie Danneberg
• A Couple of Boys Have The Best Week Ever by Marla Frazee
• To Be Like the Sun By Susan Marie Swanson
• Monkey and Me by Emily Gravett
• The Aurora County All Stars by Deborah Wiles
• The Life and Crimes of Bernetta Wallflower by Lisa Graff
• Violet Bing and the Grand House by Jennifer Paros
• Greetings from Nowhere by Barbara O’Connor
• Moxy Maxwell Does Not Love Stuart Little by Peggy Gifford
Check to see if your city’s library has a summer reading club and/or story time for children with autism. Many libraries across the nation have become more inclusive
and sensitive to the needs of the developmentally disabled.
Experts offer some reading tips to parents wanting to make sure their child’s skills don’t regress over the summer months. Those include:
• Set aside a specific time each day to read.
• Choose non-fiction books rather than fantasy.
• Read books that prepare them for events and/or engage their special interests.
• Choose book with a tactile component such as different textures or a pop-up format.
• Ask frequent questions about the story.
• Have them recount the story to you after you’ve finished reading it.
• In advance prepare pictures of nouns in the story that your child may not know so that you can show rather than tell him or her what they mean.
• Use flash cards for phonics.
• Emphasize simple rhymes.
• Repetition. Repetition. Repetition.
To this, I would add a personal story. One of my sons with autism is dyslexic and didn’t begin to read until he was in
the fourth grade. His breakthrough came when he got an audio book of a story set in colonial times. He holed up in his room and read the paperback version as he listened to it being read over and over again every day for
two weeks. After that, he could suddenly read and was beside himself with excitement and joy.
So while visuals are important, sometimes it’s the audio component that switches on the light inside the autistic brain.
Here is a website
that has free printable charts for reading and other daily activities that you may find useful for your
All information in this site is presented for support and educational purposes only. It is not intended to substitute for medical treatment or visiting a licensed medical physician. Visitors who desire to apply or use any information listed herein are urged to consult with licensed healthcare professionals first. All information is deemed reliable but its accuracy can't be guaranteed.
Autism strikes a family’s heart, soul and wallet. Estimates by The Autism Society puts a lifetime of care for an autistic child at $3.2 million. Autism parents know firsthand the brutal toll to the family coffers of therapies that can run $40,000 to $50,00 per year. Families tangle with insurance companies, invariably ending up with […]