Child With Autism Bullied at Disney World

An upsetting incident has been reported by Amanda Broadfoot over at Life is a Spectrum.

According to her blog, an incident occurred this past New Year’s Eve while on a trip to Orlando, Florida when her and her family were dining at the ABC Commissary restaurant in Hollywood Studios (part of the Walt Disney World Resort). Broadfoot claims that while eating at the restaurant, a group of "aggressive, rude and possibly drunk teenagers" began blowing noisemakers directly at her 4-year-old child with autism, causing him to repeatedly hit himself in the head. Apparently, the teens found this reaction amusing and continued their actions to the point where they "targeted" her child. When the boy’s uncle asked them to stop, stating that they were "torturing an autistic boy," one of the teens responded, "That’s not my problem."  Broadfoot said the incident was a classic case of bullying.

When a manager was called over to intervene, she too was unsuccessful at getting the rowdy teens to stop and then stated there was nothing else she could do.

There are a couple of troubling elements to this story. The first involves the actual incident itself and the other involves Disney’s response once they learned of the ordeal.

Assuming everything happened as Broadfoot claims, the restaurant manager should have immediately escalated the incident to security when the teens were defiant of the requests to stop their actions. However, it appears as if the manager didn’t want to be inconvenienced by escalating the situation and that is totally unacceptable.

But the most concerning part of this incident came after it occurred, when Broadfoot communicated with a Disney guest communications service representative through telephone, then email. Upon learning the details of her story, the Disney rep emailed her the following:

"…I am very sorry for the disappointment you experienced during your family’s New Year’s Eve celebration at Disney’s Hollywood Studios Park.

I wanted to personally assure you that your feedback has been considered taken seriously [sic]. The safety and well-being of our guests are of the utmost importance to us in all aspects of our operation. Our Cast Members are instructed to assist Guests requiring assistance and their families to our First Aid stations located in each of our four theme parks. These locations are established areas where your family can seek comfort during experiences like the one you encountered from the actions of other Guests…."

So if a child with special needs (or anyone else for that matter) is being harassed by other guests at Disney World, it is the family’s responsibility to flee to a first aid station for "comfort?"  

Even if Broadfoot had been instructed by the restaurant manager to do so, the family would’ve had to uproot themselves in the middle of a meal — all because they were unfortunate enough to sit next to some obnoxious teens.

Whatever happened to the concept of security?

In response to the Disney email, Broadfoot followed up on her blog with the following:

"The idea that we should have to take our dinner to the first aid station, one of the "safe havens," in order to ensure our children weren’t bullied, is nothing short of ridiculous."

Disney World has always been a pleasant place for our family to visit. The parks do an excellent job at accommodating our son with autism and ensuring we have a great time. However, it appears from this incident that Disney needs to review how they handle these types of incidents in future, both when they occur and after they’ve happened.

The burden should not be placed on the guests (particularly those of special needs children) to seek a first aid station when they are being harassed or bullied.

Many children with autism endure bullying on a regular basis and we need to do a much better job, regardless of where that may be, to ensure our kids our protected by those who get amusement by preying upon the weak and vulnerable.

 

School Punishes Student for Exhibiting Autism Symptoms

The New York Daily News reports that Brandon Strong, a ten-year-old student with autism and ADHD, has been systematically punished at a New York charter school for exhibiting symptoms of his conditions. He has reportedly been detained during lunch and after school for behavior that includes talking to himself, failing to look teachers in the eye and fidgeting. Strong was once a successfully mainstreamed student, but is now having problems sleeping and throwing fits when it’s time to go to school.

Meetings with school officials have brought no resolution and they have maintained that the parents are exaggerating the issues and not on board with the school’s methods of preparing their son for college.

My two sons, who both have high functioning autism, have been in similar scenarios all of their lives. A few years ago, I was told by a teacher that my one son "would never be successful in his class or any other" because he was unable to take handwritten notes, wouldn’t talk when called upon and didn’t make eye contact with the teacher. 

Outraged, I transferred him to another school, where his new teacher recognized his charm and potential. She made it a point to show him great respect in front of all her students and they ended up following her lead. My son eventually ended up receiving the top citizenship award at his grade school graduation, thanks in large part to his caring and compassionate teacher.

Although it sometimes can be effective, changing schools in the middle of the year or during a critical time in a student’s life is not the answer. It is the school that must conform to the child, not the other way around. Accommodations for students with disabilities is the law, but the reality is that classroom policies can be shockingly regressive. Many teachers and administrators just don’t understand autism or the laws surrounding it. 

Often when problems arise with a teacher, administrators take a defensive posture instead of working in conjunction with parents to create a program that works for the child. 

As for young Brandon Strong, toys made specifically for fidgeting exist and can be handled without causing a distraction. Specialized cushions allow for undetectable squirming. Eye contact is to be encouraged, but failure to do so should never be met with punishment. Additionally, the teacher should let it be known to the class that they are to be supportive of everyone, and if Brandon needs to talk to himself sometimes, then that’s okay. 

Getting a student with autism ready for college does not entail forcing them to behave like a neurotypical person. It means giving them a level playing field and a safe environment to develop intellectual and social skills. 

Time and time again, private and public schools fall short in providing the quality of education mandated by the law and parents are forced to fight for the rights of their child. If the situation leads to an adversarial battle, it is best to bring in outside help from an autism advocacy organization. 

Many times, teachers will view special needs students as a nuisance and will do whatever they can to force a child out of their class. But what our schools need are more teachers who genuinely care about all of their students, regardless of the issues they may have.

In the end, the most successful outcomes occur when all parties sit down together and brainstorm about what is best for the student and then implement that plan.


Autism Advocates Tap Social Media Sites to Promote Awareness

With the meteoric rise of social media Web sites such as Facebook and Twitter, many individuals and groups now have the opportunity to reach large numbers of people to promote awareness, advocacy and attention for their causes. Such is the case with autism, where a dramatic spike in prevalence over the last 10 years has prompted many people to the take to the Internet to help, support and encourage others through the popular online social networks.

Stuart Duncan is the father of a five-year-old child with autism and one such example of how Twitter can be effectively used for advocacy efforts. Operating under the handle @autismfather, Duncan has amassed nearly 2,000 followers in the last year and has since been interviewed by CNN and recently helped raise thousands of dollars when Samsung offered $5 for every tweet that contained the hashtag #TeamAutism.

Duncan has a loyal online following and is currently planning to use Twitter and other Web sites as ways to implement an "upgrade" to Autism Awareness Day this coming April 2nd.

"My goals are quite lofty," he said. "The world is already aware of autism, but doesn’t truly know what it is. We feel the message of awareness is not enough, so the plan is to implement something known as Autism Understanding and Acceptance." 

Duncan says there are already twenty charities and companies on board to help support the cause, with more to follow.

Duncan’s story is just one example that shows how the Internet has leveled the playing field for normal, everyday people. In year’s past, awareness efforts were typically reserved for the large multi-million dollar organizations such as the American Red Cross or the Muscular Dystrophy Association, requiring lengthy telethons and big budgets to raise funding and awareness. However, the Internet, via Facebook and Twitter, has completely changed the landscape of how people are reaching out to others.

Zoey Roberts is a British Columbia resident on the autism spectrum who has taken to Facebook over the last 3 years to promote autism awareness and also give others insight into her Asperger’s Syndrome. With social situations a challenge, Roberts is able to use Facebook as a tool to connect with others to both receive and offer support.

Roberts has over 3,000 friends (Facebook.com/AutismRights) and runs multiple Facebook groups that allow her to share her experiences and unique perspectives.

"Through my online advocacy, I’m able to accomplish not only autism awareness, but also give others the opportunity to see things from the point of view from someone on the autism spectrum," said Roberts. "Using Facebook, my goal is to eventually create autism awareness, peace, unity and hopefully acceptance as well."

With more than 500 million active users on Facebook and over 200 million Twitter users, social media has become the vehicle of choice to promote causes and awareness. As recent events in Egypt and the Middle East have demonstrated, a voice that was once drowned out can now be heard loud and clear through the use of these types of sites.

And with autism rates continuing to climb at exponential levels, we can expect to see many more emerging voices on behalf of autism in the near future.


Dogs Proven Therapeutic for Children with Autism

AnneMS Photography

As the 135th Westminster Kennel Club Dog Show wraps up in New York City, it has been difficult not to reminisce the many, many hours spent with our son watching dog show reruns on Animal Planet over the years. His affinity for animals (dogs in particular), has always been very strong and may have been partially explained by a USA Today article published this week, discussing the benefits of dogs for children with autism.

The article cited several studies proving the positive benefits of canines, including the results of research conducted  in 2010 that concluded the following:

"The study measured the salivary levels of cortisol, a stress hormone, in 42 children with autism at three different times: before and during the introduction of a service dog to their family, and after a short period during which the dog was removed from their family …  The researchers concluded ‘that the introduction of service dogs translated into reducing cortisol levels and the number of disruptive behavioral incidents in children with ASD.’"

These results come as no surprise. Animals have always been fascinating to our child. Not soon after he was diagnosed with autism, we soon found ourselves taking almost weekly visits to the local zoo, where he was captivated by the many animals on display. It was during these times, when his condition seemed to vanish for the several hours we were there. 

Over the years, his love for animals only grew stronger and eventually, he could recognize and identify even the most obscure of animals. His library soon became stocked with books on mammals, sea creatures, dinosaurs and of course, dogs. In retrospect, it was during these years when the healing had begun.

Dogs are recommended for children with autism not just for companionship, but as stated earlier, the potential therapeutic benefits as well. 

4 Paws for Ability is an Ohio-based organization that specializes in dog placements for those with disabilities and focuses heavily on those with autism. Their tagline is "providing canine miracles for people with disabilities worldwide." The group has been responsible for placing over 500 dogs around the world and offers canines for disorders ranging from seizures, deafness, mobility issues and autism.  Families in need of a service dog can apply directly online at their Web site:  http://www.4pawsforability.org .

If a child has been diagnosed with moderate-to-high function autism and a service dog is not needed, a trip to the local animal shelter may go a long way in providing immeasurable benefits. However, parents need to remember that dog ownership is a big responsibility and should not be taken lightly. In addition, a pet allergy test should be considered prior to a dog entering the home to avoid heartbreak down the road.

As Temple Grandin has proven, individuals with autism are often able to connect with animals in very deep and meaningful ways. In particular, dogs can teach a child unconditional love, responsibility, compassion and provide unparalleled companionship that can potentially change the course of their lives.

Son of Jenny McCarthy Suffers Seizure, Sent to Emergency Room

Jenny McCarthy and Her Son, Evan (Courtesy: Teach2Talk)

It is estimated that between 25%-30% of those diagnosed with an autism spectrum disorder will suffer at least one seizure before the onset of puberty. Varying in degree and intensity, these incidents can be incredibly traumatic for parents to witness, particularly if it’s a first-time episode. 

Unfortunately, on Sunday night, Jenny McCarthy’s son suffered one, as reported through her Twitter account:

Ugh. Evan had a seizure. We r in the ER. He’s doing better. Just laying next To him. Could use prayers again right about now.

It’s unknown how severe the seizure was, but McCarthy’s son, Evan, was diagnosed with autism in 2005 and has a history of them, even requiring medication to control them at one time. It’s unclear if he is currently taking any anti-seizure meds.

For many parents of children with autism, seizures often manifest during a sickness such as the flu, common cold or stomach virus, but they can also strike at any time and without warning. 

When our son had his first seizure, it was a very traumatic experience as I witnessed him violently convulsing for over two minutes, all while he turned blue in the face. With a lack of awareness about what was happening, I felt completely helpless about what to do at the time.

If your child or loved one is unfortunate enough to suffer from a seizure, here are some important things to keep in mind:

• Remove any nearby objects that will cause bodily injury
• Protect the person’s head with a pillow, cushion, towel, or any other soft object
• Carefully and gently place the person on his or her side
• Do not attempt to move the victim to another location
• Do not put anything is the person’s mouth, including any water or fluids while the seizure is still occurring
• Most importantly, stay calm. Witnessing a seizure can be extremely frightening and traumatic, especially when it happens to a loved one

Our thoughts and prayers are with Ms. McCarthy and her family, and we wish Evan a full and speedy recovery.

Autism Registries Needed for Local Law Enforcement

Autism Safety Law Enforcement

John Roman

The Windsor Star reports a great idea coming from our neighbors to the north in having local police departments create a voluntary online registry of citizens with autism in their community. A successful pilot project exists in Ottawa, where last year, police teamed with the their local autism chapter to give officers quick access to critical information in the event of an emergency. 

Michelle Helou, a Windsor mother of a son with autism, is now taking it upon herself to see the registry program expanded to her city. Non-verbal and prone to wandering, she fears what would happen to her son if he encountered police and was unable to respond to their questions or became aggressive from sudden movements. Ever fearful of him becoming lost, she also wants to be certain he could be brought home safely by police.

Recent events certainly give merit to her concerns. The tragic death of a man with autism shot to death in Los Angeles and the savage beating a jaywalking teen with autism in Seattle highlight police departments´ lack of preparedness in dealing people with autism in their communities.

A registry accessible from a squad car can provide police with a variety of valuable information, including contact information, nicknames, physical descriptions, a person’s means of communication, known routines, inclinations for wandering and favorite attractions.  The data might also recommend the best ways to approach a person, their favorite topics of conversation or in the case of a young child, favorite toys. 

At a time when police officers receive little or no training in dealing with autism, it could also reinforce in the moment what not to do, such as becoming suspicious and hostile if a person mimics speech or refuses to make eye contact, or won’t talk at all. The reminder to turn off bright lights, speak in a calm voice, maintain physical distance and not mistake autism symptoms for insubordination could go a long way towards averting a disastrous encounter with law enforcement officials.

It’s going to take a local effort to bring this great idea to our country’s metropolitan police departments. If unconnected to support groups, individuals can start their own campaigns and for those who do belong to a local autism chapter, this issue should be brought up as a matter of priority.

Privacy advocates will certainly have their say in this matter. However, the benefits of instituting autism registries across the country would far outstrip any privacy concerns that may arise from them. And as long as the programs remain voluntary, there should be no reason for resistance.

Regardless of how old our children with autism are, registries would go a long way towards keeping them safe in their communities.


John E. Robison: An Emerging Voice of Autism

John Elder Robison (Courtesy: JohnRobison.com)

John Robison admits to being a problem child. Often sad, lonely and unable to make friends, he was shuffled from school to school and therapist to therapist, all while his Asperger’s Syndrome went undiagnosed.

An electronics savant who saw wiring in patterns of color, Robison dropped out of high school and started working with rock bands, eventually engineering the first flaming guitar for the band Kiss. He later became well-known for his 2007 book, "Look Me in the Eye," a poignant memoir of being a socially isolated misfit who didn’t discover his autism until he was nearly 40 years old. 

His brother is author Augusten Burroughs of "Running With Scissors" fame. It was Burroughs who encouraged his older brother to write down his life story and Robison initially agreed for his own entertainment, never imagining that he would go on to become a New York Times best selling author and public figure.

John E. Robison is yet another example of how individuals with autism continue to shatter stereotypes and how they are contributing to our society. In fact, Robison himself stated that the world needs those with his condition, which is something to be "cherished and celebrated."

Robison’s book now has a teaching guide and is used in curriculum from middle school through college. He often makes personal appearances at autism conferences, sometimes in tandem with his friend Temple Grandin, and he is an adjunct professor in the department of Communication Sciences Disorders at The College of Our Lady of the Elms in Chicopee, Massachusetts. 

Robison’s second book, "Be Different," is completed and will be released later next month. And on February 24, 2011, he will be featured on Discovery Channel’s "Ingenious Minds," which should be a fascinating look into his background and life story.

If you’re unfamiliar with the name of John Elder Robison, you will soon be hearing much more of him as he continues to emerge as a powerful advocate for those with Asperger’s and other autism spectrum disorders.




Tiered Diplomas Abandoned in Rhode Island

Deborah Gist (AP)

Advocates for low-income, minority students and students with special needs, including the Rhode Island Disability Law Center and The Autism Project of Rhode Island scored a major victory in Providence last week when Education Commissioner Deborah Gist announced she would scrap a plan for a three-tiered high school diploma system tied to standardized test scores. 

The plan called for students with high scores to receive an “Honors’’ diploma, those with average scores to earn a “Regents’’ diploma, and ones who score “partially proficient’’ to be granted a basic Rhode Island diploma. Children who fail the test would have the opportunity to take it again. If they fail a second time, but other requirements are achieved, they could still graduate with a certificate.

Opponents claimed the proposal created a state-sanctioned caste system that would stigmatize struggling students and haunt them when seeking future employment or college admission. Based on recent test scores, they countered that almost all students who were poor, minorities, had disabilities, or were learning English would get the lowest tier diploma, if they even got one at all. 

Currently, a student is required only to take the standardized test to qualify for a diploma, receiving one regardless of their score.

Prior to abandoning the proposal, Commissioner Gist took to the opinion pages of state newspapers to expound upon the virtues of the tiered system for honoring excellence. But hundreds of students, teachers and leaders turned out at public hearings in January to fiercely oppose their opposition.

When at the end of the meeting, Gist acquiesced to public will, the executive director of The Autism Project thanked her for acknowledging that "just as we don’t all learn the same, we don’t all test the same.” 

Commissioner Gist stated that children with special needs, limited English skills or who had recent traumatic events in their lives such as a house fire or the death of a parent should be given modifications and accommodations on future standardized tests and the results of those tests would not be tied to diplomas.

While it’s important to have high standards for students in our school systems, the correct decision was made in scrapping this program. There are plenty of other ways students can be acknowledged for their achievements, including SAT and ACT scores, president’s lists and grade point averages. This proposal was superfluous and unnecessary and would have lead to further stigmatization, which is something children with autism and other special needs already have to contend with on a regular basis. 


Mayo Clinic Weighs in on Restrictive Diets for Autism

Elena Schweitzer

Recently, on a Q&A portion of its website, the Mayo Clinic weighed in on the gluten free, casein free (GFCF) diet for autism. Dr. Jay Hoecker, emeritus consultant for the Department of Pediatric and Adolescent Medicine, stated that there was "no evidence that special diets are an effective autism treatment" and that "restrictive diets can lead to nutritional deficiencies."

Thanks in large part to a lack of autism awareness, there are many alternative treatments and therapies (including the GFCF diet) that desperate parents seek out and end up being more harmful than helpful.

Any home-brewed diet based on a lack of evidence, should not be used haphazardly. A professional nutritionist or doctor should be overseeing any type of diet being used on a child on a regular basis. Without these measures, a child’s health can be severely affected. Not many caregivers have access to the knowledge and diagnostic tools such as blood work, urine samples, blood pressure, vitals or are nutritionally savvy enough to keep a child’s well being properly monitored. 

I too, tried the gluten-fee, casein-free diet for my son and ironically enough, his healing began when I ended the diet and put him back on milks, yogurts, Happy Meals, Pediasure and Ensure. 

We’re spinning our wheels and are more interested in fads rather than facts. I have never read a single report stating that ABA (Applied Behavior Analysis), floor time, complete dedication, or any other behavioral modification therapy was harmful. These are the things we should be focused on.

Temple Grandin’s mother did not use the GFCF diet. Neither did the majority of parents of the greatest known adults with autism who are now fully functional in our society. 

One can search any number of alleged "fixes" and find someone touting results. My son is my result. The parents I study with and blog with are real and the diet did not work for them either. The positive results in GFCF studies could have very well been brought on by other underlying factors.

Granted, there are instances when a gluten-free casein-free diet is warranted if a child with autism has been diagnosed with allergies related to certain foods. However, this is often the exception and not the rule.

The GFCF diet is expensive and often forces already strapped families to spend their last dime, leaving them discouraged and distraught when the results don’t come.

I, like many other parents, am witnessing first-hand the behavioral modification approach and a complete turnaround in my son’s life. It is remarkable, miraculous and above all, it does not cost us anything other than our time.

Early detection and intervention of autism is the best approach to help our children.  Let’s stay focused and base decisions on recommendations from organizations like the Mayo Clinic instead of jumping on bandwagons and treatments that have yet to be proven by research.


Flu Season Precautions for Children with Autism

Monkey Business Images

Winter has been particularly harsh this year and in some areas, weather conditions have made the flu season difficult to contend with as Influenza cases are continuing to spread rapidly. The University of Wyoming reports widespread cases throughout the state and the school’s Student Health Services has been treating several patients per day with flu-like symptoms. The state of Indiana has just been listed in the "wide-spread" outbreak category, and according to the CDC, this scenario is playing out in many states around the country.

Influenza (the flu) is a contagious respiratory illness caused by a virus. Symptoms include fever, headache, extreme tiredness, dry cough, sore throat, runny or stuffy nose and muscle aches. It can lead to severe illness and complications, particularly among older people, children and those with compromised immune systems. 

Practical ways to prevent the spread of the flu include thorough hand washing (for more than 20 seconds using a rubbing, friction action) and of course, covering one’s mouth when coughing with the inside of an elbow and not with the hands.

In addition to hygiene, another preventative measure for the flu is an annual vaccine, as recommended by the CDC for those 6 months or older.

Although mercury in vaccines has been proven to not cause autism, there are suggestions that heavy metals can certainly trigger or further complicate conditions in an already pre-disposed child. 

Thimerosal (a mercury-based preservative) has allegedly been removed from all vaccines, with the exception of some brands of the flu shot and some plain tetanus and diphtheria-tetanus shots. For the 2010-2011 season, Agriflu, Fluarix, and Flumist are brands that do not contain mercury, while Afluria, FluLaval, Fluvirin, and the multi-dose version of Fluzone all contain at least some traces of mercury.

Dr. William Sears of L.E.A.N. reports that Fluzone is the only 100% mercury free brand for infants, but it needs to be the single-dose version of the shot.

Parents should be both educated and prepared when questioning their doctors about the injections given to their children with autism spectrum disorders. With the flu season now in high gear, consult with them about Fluzone and demand single doses for your child’s age and weight versus the cheaper method of drawing from the larger, multi-dose vial. If Fluzone is not an option, be sure to demand one of the three brands listed above that do not contain Thimerosal, assuming it is age-appropriate.

Heavy metals have been known to play a role in the neurological functions and seizures associated with autism spectrum disorders. And although autism is a pre-disposed condition, you certainly don’t want to add to the barrage of interruptions already present in the brain.

Be informed, get tough, stand your ground and continue advocating on your child’s behalf and your autism journey will turn into a very rewarding experience, even during the dreary flu season.


 
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