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
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
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.
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
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.
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.
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.
“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.“
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
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
Our thoughts and prayers are with Ms. McCarthy and her family, and we wish Evan a
full and speedy recovery.
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
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
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.
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.
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
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.
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.
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.
Residents of the United States will be facing the peak of flu season (which
runs from October through May) in the coming few weeks and it’s likely that a
portion of children who get sick will require hospitalization during that time.
Every child is anxious when they have to stay in the hospital, but for
a child on the autism spectrum, these stressors can expand exponentially. Like
other services in our society, most hospitals are behind-the-curve in dealing
with patients who have autism. This lack of preparedness in the
medical setting can cause many problems and untold grief for children and
Fortunately, some hospitals are facing the problem head-on. The
Hospitalist reports of a handful of medical facilities around the country
that have autism consultants who are called in to help with arriving patients,
providing an array of ideas for both parents and staff. While this is a good
start, much more work is needed in this area.
When a child with autism arrives at the hospital, doctors and nurses need to
make the child’s life as consistent as possible. Limiting the number of
physicians and nurses interacting with them is extremely important. With the
proliferation of teaching hospitals, this can often be difficult. ¨Grand Rounds¨
when doctors and their legions of interns crowd into the patient’s room is
unduly stressful and should be avoided.
Regardless of a child’s age, a family member in the room twenty-four hours a day
is highly recommended. I discovered the hard way that many children’s
hospitals have twenty-four hour babysitting services, but don’t make it widely
known to patients or their families. If you don’t have a family member who can
stay with your child around the clock, ask the hospital to provide a companion
when you can’t be there.
Dimming lights, keeping noise levels low, touching children infrequently and
letting them know what will be happening next are other ways to limit sensory
overload. Doctors should turn off cell phones and pagers and be sure to have
enough time to attend to the child.
Involving a child in activities such as wearing the same hat as a surgeon,
having them touch and handle a wrist bracelet before putting it on, or being
shown medical equipment before it is used can all help counteract the onslaught
of foreign experiences.
From personal experience, I highly recommend that every time a youngster has to
contend with a shot or blood work, insist that Emla cream be applied first.
Rubbed on the injection site thirty minutes or more in advance, Emla completely
numbs the area so that the needle won’t even be felt.
Scary procedures usually done under local anesthesia can be performed under
general anesthesia instead. When my son had to have an endoscopy, having him
sleep through it spared him both the terror and stress.
If a staff member is speaking in a way that is inadvertently upsetting your
child, take them aside and politely coach them.
Also, don’t presume a medication is appropriate just because the doctor says so.
Do your own research. A heartbreaking
scenario unfolded in Seattle when a boy with autism was getting a tooth
extracted in the dental clinic and died from a patch placed on his arm for pain.
He couldn’t tolerate swallowing pills, but the patch carried a black box warning
that it was only to be used for cancer patients with a high tolerance for
opiates. Although the parents were awarded a multi-million dollar lawsuit
settlement, it was no consolation for their grief and loss.
Statistically, your child will eventually find his or her way into the emergency
room at some point in the future. In fact, according
to the CDC, approximately 200,000 Americans require hospitalization each
year from the flu virus alone, with a good portion of those patients being
children and the elderly. These numbers don’t even take into account the
myriad of other reasons a child on the autism spectrum may require inpatient
Having a loved one in the hospital can be overwhelming, and at times,
terrifying. Don’t wait until it’s too late and don’t assume a hospital
will be equipped to handle your child. Make plans now and have a hospital
plan in place so you’ll be fully prepared when that time comes.
Each year, American Idol produces a handful of contestants who give memorable
performances during the audition rounds, immediately making them odds-on
favorites to win. Last night, millions of American Idol viewers were introduced
to just such a contestant in James Durbin. Durbin is a 21-year-old Santa Cruz,
California resident and unemployed father who has faced some major challenges
over his lifetime.
At the age of nine, Durbin’s father died of a drug overdose and the Idol singer
has also been
diagnosed with Tourette syndrome and Asperger’s, a high-functioning form of
James Durbin wowed the judges with an amazing vocal range, which included
renditions of "You Shook Me" and "Dream On." Judge Steven
Tyler was particularly impressed, saying, “Wow man, that was so, so good."
Comparisons are already being made to Season 8 American Idol runner-up,
Adam Lambert. However, Durbin is actually much different and his unique story, coupled with an amazing voice, will surely make him a fan
favorite and front-runner to win it all. If that were to happen, Durbin would
join a growing list of individuals (i.e. Jason McElwain, Temple
Grandin, etc.) who have shattered many of the stereotypes and misconceptions
about what it means to have autism and what those who have it are capable of
After his performance, James Durbin admitted to the judges that when he
sings, his Tourette’s "all goes away." Hopefully, Durbin doesn’t
anytime soon and is eventually crowned the Season 10 winner.
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There’s holiday cheer afoot this year as 140 malls across the country are providing “Quiet Santa” time for children with autism spectrum disorders. Trained by the California-based non-profit, AbilityPath.org, the malls open their doors before the shopping day starts to avoid crowds, the agony of waiting and the many other sensory pitfalls of public spaces. [ […]