On April 6 in New York City, UN Secretary-General Ban Ki-moon issued these remarks to a panel discussion on “Solving the Autism Public Health Puzzle: Regional and International
"I am honored to be here today with all of you.
My wife and I both feel strongly that autism is a matter of international concern that demands our collective attention.
Before the United Nations created World Autism Awareness Day, a mother Googling “Autism” and “United Nations” would get only two hits: both from the World Health Organization.
Today, thanks to all of you in this room and many others, a parent would get more than 2 million. Thank you very much for that effort.
This Day is a time to remember that we can respond to autism effectively, with the right tools and schools.
This Day is a call to action — for all of us who want a more compassionate and inclusive world.
More and more children and people are being diagnosed with autistic conditions. Autism strikes without discrimination — but people living with autism can suffer intolerable discrimination that must stop.
We have to unite our efforts. We have to share experiences — what works, and what does not work. And we have to raise funds to turn workable solutions into practical actions.
When I think of what is at stake I remember one young woman whose brother has autism. People who didn’t understand his condition would ask: “What is wrong with that child? Why is he acting like that?” Once someone blamed her mother and father, saying: “Why can’t they be better parents?” The girl was so stung by those words, she will never forget them.
Fortunately for all of us, she dealt with this ignorance by organizing gatherings of families dealing with autism. They asked completely different questions. Instead of judging her parents, they wanted to know: “Are you okay? Do you need anything?”
That difference — between blame and support, between judgment and compassion — is what World Autism Awareness Day is all about. Our challenge is to move people from misunderstanding to empathy. This is a movement — a global movement — that goes beyond people with autism and their families. This is a movement to create a better world for all of us.
Thank you very much for your commitment and leadership.”
I confess to being a skeptic and even a cynic when it comes to politicians and political organizations, but I found these words by the UN Secretary-General very moving. Immediately, my life with my sons on the spectrum flashed before my eyes and I saw the many occasions strangers yelled at me for their behavior or called them “brats” to their faces. I refused to quarantine my children, but every outing was fraught with potential peril.
And then there were the teachers every bit as ignorant and even more damaging than the strangers, like the one who threw my one son in the hall for fidgeting and told my other son he’d never amount to anything. And I could never forget the parents of their neurotypical classmates who kept encouraging me to change schools.
There was no summer camp, no "Parents Night Out" at the Science Museum, no
sleepovers and few invitations to birthdays. Autism is a hard and lonely road.
That the leader of the United Nations addressed the heartache each and every family touched by autism feels cannot help but move us to a higher place. It’s my deepest hope that awareness and action is equally distributed across the range of issues that need addressing
– from scientific research and early intervention, to best practices in schools, services and support for families, community support for transitioning into
adulthood and continued resources for adults with autism.
If the hallmark phrase of education reform was “No Child Left Behind,"
let ours be “No Individual With Autism Left Behind."
Researchers lead by Laurent Mottron at the University of Montreal have confirmed scientifically what has been an anecdotal truth – people with autism enjoy unrivaled visual expertise. On a neurological level, they concentrate more brain resources in the areas associated with visual detection and identification and less in the areas used to plan and control thoughts and actions.
The researchers collated 15 years of data that covered ways the autistic brain works when interpreting faces, objects and written words. The source of the data included 26 independent brain-imaging studies that looked at a total of 357 autistic and 370 non-autistic individuals.
This effort to draw conclusions across various studies enabled scientists to observe that “autistics exhibit more activity in the temporal and occipital regions and less activity in frontal cortex than non-autistics. The identified temporal and occipital regions are typically involved in perceiving and recognizing patterns and objects. The reported frontal areas subserve higher cognitive functions such as decision-making, cognitive control, planning and execution”.
The brain of the individual with autism expresses a general functional reorganization that favors perception
processes — the very processes by which information is recorded in the brain. In essence, the autistic brain successfully adapts for its deficits by reallocating brain areas to visual perception, accounting for visual prowess.
Whatever the task, the autistic brain strongly engages the visual system. Unlike their neurotypical
counterparts, individuals with autism can conduct higher level cognitive tasks without having to engage the frontal lobe of their brain.
This study represents the first physiological confirmation that enhanced perceptual processing is a core strength of people on the autism spectrum. The findings have implications for the plasticity of the brain and offer new models for investigating autism.
What leaps to mind for me from these conclusions is that there needs to be an educational revolution in order to tap into the strengths of children with autism. Current practices favor neurotypical children and even penalize the child with autism for their
A point of contention for me in the public schools are tests, including those
that are standardized, that make the child show their work. Autism expert Dr. Tony Attwood has long held this to be
discriminatory as children on the spectrum perceive math problems visually and cannot record their problem solving methods like their frontal lobe engaging peers do. My son’s scores in math have never reflected his true ability because he is constantly marked down for not showing his work, regardless of getting the correct answer.
Having large classrooms with strict rules of conduct is naturally an ordeal for children with autism who are
unequipped neurologically to plan and control their actions. They end up getting in trouble a lot for their inability to filter their responses and manage a social regimen, which only exacerbates their condition.
Most curriculum is lecture-based and devoid of that visual element that brings information to life and guarantees retention for a child on the spectrum. I
previously posted about the Khan
Academy, a free online learning resource. Since then, my science-shy son has been reveling in their chemistry videos, constantly remarking that he loves the illustrations that accompany the lectures. Bill Gates envisions schools where small clusters of children work independently at the Khan Academy, with the teacher available as a coach. This seems well-suited to the learning style of the child with autism. The sterile and ubiquitous math worksheets could be rendered obsolete.
I hope this study on the strengths of the autistic brain will spur educational reforms that shift the focus away from trying to “normalize” the child with autism and instead encourages their special gifts to flourish.
Known for his aggressive and upbeat rock performances, James Durbin shifted
gears Wednesday night on American Idol, performing "While My Guitar Gently
Weeps" by George Harrison of The Beatles. The song was chosen as part of Rock and Roll Hall of
Fame Week, where each ‘Idol’ contestant was able to select a tune from the
"500 Songs That Shaped Rock and Roll" exhibit at Cleveland’s Rock and
Roll Hall of Fame.
Once again, James Durbin knocked it out of the park and gave a heartfelt,
emotional performance. After singing, he was moved to tears and later confessed
that the song was for his family, which includes a wife and young son.
Durbin’s song came amid amazing performances from the eight other contestants,
further solidifying this season as one of best in the show’s ten-year history.
While James has a good chance at making at least the top three and possibly
winning the entire American Idol competition, he will need to garner as much
support as possible from his fans, which include a significant number of
individuals within the special needs community.
At an early age, Durbin was diagnosed with both Tourette’s and Asperger’s
Syndromes. As a result, he has faced many difficulties and challenges over the
years, which make his accomplishments to this point all-the-more significant.
This week, viewers saw a softer and more subdued side to James and it’s safe to
say he earned many votes from his performance.
case of Adam Benhamma continues to highlight the ongoing issue of
wandering by those with autism. In fact, 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 to elements has also been responsible for many autism-wandering deaths.
The issue has become so problematic, some of the largest autism non-profits in the
country have partnered to form The Autism Wandering Awareness Alerts Response and Education (AWAARE) Collaboration.
The group’s mission is to prevent wandering incidents and wandering-related deaths within the autism community through
education, resources and awareness. The organizations that comprise AWAARE
include Autism One, Autism Speaks, Doug Flutie Jr. Foundation, Hollyrod Foundation, National Autism Association and Talk About Curing Autism (TACA).
In addition to awareness and education, technology is also being implemented to
address this widespread problem. Products from LoJack, SecuraTrac and Project Lifesaver all offer solutions for parents and caregivers to track and locate those with autism.
Despite these efforts, it’s clear that much more needs to be done to address the
recent slew of tragic wandering cases. Just a few of those include:
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
Adam Benhamma – April, 2011. A three-year-old boy who is both non-verbal and
deaf has been missing since Sunday. Benhamma disappeared during a game of hide-and-seek while his father briefly went inside the house they were visiting.
Police believe the boy fell into a nearby icy river. As of today’s date, he has
not been found and is presumed to be deceased.
These are just a few of the many heartbreaking stories that continue to play
out around the country and world involving wandering individuals with autism. As
we continue on with Autism Awareness Month, hopefully more attention will be
brought to this problematic issue to ensure wandering-related deaths are
minimized or completely eliminated altogether.
A potentially heartbreaking
story has emerged from Canada in Laval, Quebec, a suburb of Montreal.
Three-year-old Adam Benhamma, who has autism and is both non-verbal and deaf,
has been missing since Sunday afternoon after playing outside with his sister.
The youngster disappeared during a game of hide-and-seek while his father
briefly went inside the house they were visiting. The area is heavily wooded and
police suspect Benhamma may have fallen into a nearby river. After two nights of
cold and wet weather, police say it’s unlikely the boy could have survived
without finding some sort of shelter.
Our thoughts and prayers go out to the Benhamma family during this difficult
time. Both parents have not been speaking to the media and police have reported
that Adam’s mother went into "shock" after learning of her son’s
Please pray for Adam and his family and hopefully, we can report back with some
miraculous news in the near future.
Benhamma has black hair and was wearing a black-and-purple hat, a black coat, blue jeans and blue running shoes when he disappeared.
He is two feet tall and weighs 25 pounds. If anyone in the area has information,
please contact the Laval Police Department at 450-662-4310.
As the lead guitarist for the thrash-metal band Anthrax, Dan Spitz has played many sold-out shows over the course of his music career. Spitz was a member of the legendary band from 1983 to 1995, and then again from 2005-2007. However, his most important roles have come after his illustrious music career, as a husband, father and autism advocate.
Spitz’s twin sons were born in 2007 and both have since been diagnosed with autism. During that time, he has used his celebrity to help raise awareness about the disorder, particularly among those within the music community. Additionally, Spitz and his wife, Candi, are strong supporters of Autism Speaks and have recently been featured in one of the organization’s videos promoting its autism walks (posted below).
Dealing with autism hasn’t been the only challenge Spitz has faced in recent years. In 2009, he underwent open heart surgery to repair a main artery in his heart that was said to be "almost completely closed."
Spitz is a born-again Christian and Messianic Jew and in interviews, has frequently cited his faith as an influential component to his life.
It’s nice to see Dan Spitz be so transparent and come forward about his sons’ autism, among other things. Far too often, celebrities and public figures are all-too-reluctant to speak out about their child’s condition. Autism is an epidemic and there are many people who are sharing the same experiences and as such, there should be no shame in having a child with autism.
We need as many people as possible (celebrity and non-celebrity alike) to
step out of the shadows and come forward. The more this occurs, the more we’ll realize just how much we have in common with others, which will help encourage and support all of us who are on our autism journeys.
A wonderful story has been reported out of Kentucky where a mother of twins with autism created an event for neurotypical children at her sons’ school to experience what it’s like to have autism. During Cumberland Trace Elementary School’s Autism Awareness Day, organizers manned five different sensory stations designed to let children experience first-hand the challenges children with autism face every day.
At the touch sensory booth, a volunteer gave students sleeves made of coarse burlap to wear for a few minutes as she explained to them that some children with autism have a distorted sense of touch. When they put on the burlap cloth, students complained that it was rough and itchy.
“Some children deal with that 24 hours a day,” she told students. “Would you want to wear this all the time? This is what they have to deal with every day.”
“Kids that have autism think differently than we do. Their brain is wired a little differently,” concluded a fifth-grader. “To us, our clothes feel soft and comfortable, but to them, their clothes might feel scratchy.”
At another station, children were put in pairs and asked to hold a conversation while one of them listened to a cassette player. They soon realized how hard it is for the child with autism to concentrate when background noise overwhelms them.
In order to demonstrate the warped sense of smell many children on the autism spectrum experience, the children were given a mixture of garlic and peppermint to inhale.
The station designed to replicate sensitivity to light involved students closing their eyes for 15 seconds, then opening them without blinking for 10 seconds. Many children couldn’t keep their eyes open and other eyes were running with water. They learned that this is what their peers with autism may experience every time they enter a room with bright lights.
Children were given extremely sour candy at the taste station. While some liked it, others couldn’t abide it. “It was very sweet and it made my mouth feel really weird,” reported a second-grader before concluding, “I can see that they taste things differently than us.”
The conclusions the children themselves drew are the most touching element of this report. Obviously, curriculum that engages the senses is more powerful than any lecture about autism. Inherently, this event is also a compelling method of reducing bullying of children with autism and would be an excellent component to anti-bullying programs in schools.
I can imagine this same event as part of an early PTA meeting in which a guest autism speaker addresses parents about autism inclusion programs within their schools, after which the parents visit the sensory tables. Engendering empathy and allaying the fears and misconceptions of parents of neurotypical children would help them send positive messages to their children about their classmates with autism and create a more warm, supportive school atmosphere.
And then my mind immediately conjures a bevy of teachers and administrators I’ve had the displeasure of encountering who would do well to make a trip to those tables themselves.
I love this story of one mother’s inspiration generating this wonderful event and I’m glad that her school rallied behind her idea. Creative methods of expanding awareness about autism give real meaning to Autism Awareness Month.
As part of Autism Awareness Month, Autism Speaks has released its findings from
an online survey identifying the most livable cities for autism. These cities were recognized by respondents for best availability of services and resources, including educational, recreational and medical offerings.
The cities, in no particular order are New York, Los Angeles, Chicago, Cleveland, Philadelphia, Boston, Northern New Jersey, Minneapolis/St. Paul, Seattle and Milwaukee.
The worst overall places included Texas, Virginia, Tennessee, Florida, Michigan and ironically, Ohio and California, despite the high ratings for both Cleveland and Los Angeles.
Surveys came from 848 respondents and revealed that seventy-four percent were generally unhappy with the availability of services for autism where they lived, while 26% said they were generally happy.
Among those unhappy with where they live, areas of sharp grievances were travel time necessary to access services and resources and limited access to medical care. Half the survey takers were unhappy with their child’s educational
services and most telling, ninety percent of all respondents reported no access to crucial respite care.
In contrast, satisfied respondents report good access to medical care and services that were proximate to their homes. Ninety-five percent were happy with their child’s educational experience. Yet seventy five percent of this group didn’t have access to respite
care either. Supportive workplaces were a strong element of satisfaction and fifty-five percent of the happy group said their employers had family-friendly policies.
Before anyone starts packing their bags to move to Seattle, I have to say that I believe the “happy” respondents from Seattle are likely reporting from the upper ranks of the income scale. The public school system here is incessantly grappling with mismanagement and proves treacherous for children with autism. Special education teachers have zero required training in autism and it’s the luck of the draw whether an instructor will help or harm your child. All the experts in autism I encountered exhorted me to move to the suburbs with their far superior schools, but that was a financial impossibility for me.
Every service I ever tried to access required languishing on a waiting list until I’d forgotten I’d ever signed up.
And the Department of Developmental Disabilities denied me respite care because my son’s IQ was too high. I finally petitioned the governor and received nineteen hours a month in respite care, but the provider was untrained and called
the fire department when my son had an anxiety attack, a possibility I had copiously prepared her to deal with.
Since my sons are now teens, it may be easier for parents of young children to access services now than it was for me. But I can currently attest to the school system’s lamentable state, the
children’s hospital lack of special protocols for their patients with autism and the dearth of respite care.
Microsoft is one of the region’s major employers and they are known for excellence in taking care of their employees who have children on the autism
spectrum and they help give the city its rosy glow.
Also, 848 respondents is not a huge pool. Still, interesting facts can be drawn from this survey as to what defines a strong community for autism support and regions where the most work remains to be done. Alarmingly, on the low end of the scale, Florida and Tennessee still allow corporal punishment, which paired with poor autism services, is truly frightening.
Clearly, major population centers comprise ten out of ten places on the list and the overarching grievance amongst everyone is lack of respite care.
Again, I am aware of the many challenges still facing us and I hope this special month represents a real opportunity
for meaningful changes to make all our of communities more livable for families contending with autism.
April is host to Autism Awareness Month as well as the fourth annual Autism Awareness Day (April 2nd). It is a time when concentrated efforts are made by both the media and individuals around the world to educate and help people to understand the statistics and the disorder itself.
Under the surface, there is debate within the autism community as to how autism is best defined. Is “disorder” the right word? Some doctors still refer to it as a “disease.”
Also, do we use the term “people with autism” or are they “autistics?”
To some, this seems rather trivial but you have to understand, one wrong word can change how an entire world views 1% of the world’s population
(autism is now diagnosed at 1 in 110 children according to the CDC). Will we see those with autism as a little different or as a defective person to lock away and institutionalize?
Here are a few points to consider, which should help clear things up a bit.
Autism is not a disease, even if a doctor calls it that. Autism is a disorder, as defined by its very name: “autism spectrum disorder.” The term disorder is actually even more appropriate when you consider what may be happening inside the brain of a person with
There are some people that feel disorder is still too negative of a term when they simply view their loved ones as being “different.”
However, there is also a danger in “normalizing” the condition too much.
No insurance agency in the world will help cover costs for being “different” and no government agency in the world will help to support someone who is “different.” There is no therapy available for it and there are no specially trained teachers for it. “Different” is great for you and me, but our loved ones truly are just a little more than
When I asked around about the difference between a “person with autism” and an “autistic,” I was met with arguments for and against each. They are broken down like this:
Person with Autism
Pros: This is thought to put the person first and the disorder second. The person is what is important — they are who they are. They have a disorder and therefore, it’s not the primary focus.
Cons: Autism isn’t just something that they have, it’s a part of who they are. It affects how they perceive the world and others and it gives them unique insights into everything around us that most of us would never be able to imagine. Autism is as much a part of them as their eye color, their shoe size or the shape of their face.
Pros: It is considered just another term, such as diabetic, American or brunette. It’s just a word that helps us to refer to a person in a certain context. Also, as previously mentioned, some people see it as a way to demonstrate that autism is a part of who they are. Without autism, they wouldn’t be who they are and therefore, the term “autistic” is very appropriate.
Cons: This puts far too much emphasis on the disorder. A child is a child. A person is a person. They’re not a disorder. Autistic can be viewed as another word for autism and therefore it’s as if you’re talking to a disorder rather than the person who has it.
As you can see, labels can be a very tricky and they’re not something to be taken lightly. Some people treat these differing definitions extremely seriously and even get very upset if you use the wrong term in front of them.
My advice is to learn about autism, learn about how it affects people and then learn about those people because they are all far more unique than the methods we use to define them.
A seemingly harmless and unscripted exchange between American Idol contestant
James Durbin and host Ryan Seacrest has touched off a controversy involving
Michael Jackson’s family.
to TMZ, the Jackson family, including Michael’s father Joe, is upset at
Durbin’s off-the-cuff remark on Wednesday evening when he stated, “I have a lot of hairspray in my hair to keep it from jumping around — so much so, the one thing I was worried about was having a ‘Pepsi moment.’”
Durbin made the comment shortly after his performance, which involved a
pyrotechnic effect that included a piano being set ablaze behind him. Durbin’s
remark was an apparent reference to Michael Jackson’s infamous incident in 1984
when his hair caught on fire while filming a Pepsi commercial.
There are several issues I have with Jackson’s team jumping all over Durbin and
Fox for the comment.
For starters, James was merely referencing a well-known incident that is a part
of pop culture history and showed no disrespect to Michael Jackson or his family
whatsoever. Also, it appears as if the Jackson reps dialed up TMZ to
protest the remarks, clearly aware that doing so would make headlines and draw attention back to the
ongoing Michael Jackson saga. If true, then that is really an unfortunate thing to
Additionally, it can be assumed that the Jackson team is unaware of James
Durbin’s Asperger’s Syndrome, which is a high-functioning form of autism. A
common characteristic of those with Asperger’s is the lack of a
"filter," meaning things are often said and done without the full
realization of their consequences — another reason to back off and give James a
While we certainly feel for the Jackson family and the pain they have endured as
a result of their loss, picking on a 22-year-old with Asperger’s for an
unscripted comment is clearly the wrong place to be venting their grief and
James has overcome the death of a father, Tourette’s Syndrome and Asperger’s,
and is currently participating in a grueling competition that he has worked so
hard to be involved in. The last thing he needs is the unnecessary guilt and burden of
inadvertently offending a grieving family.
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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 […]