The recent
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
unsuccessful.
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
disappearance.
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
autism.
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
that.
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.
Autistic
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.
According
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
have done.
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
break.
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
anger.
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.
In my ongoing postings of alternative therapies to enhance the lives of children with autism, I would be remiss if I didn’t include music therapy.
Everyone knows that music is a universal language and for children on the autism spectrum who have barriers to communication and social interaction, music is especially well-suited to their needs. Because it captures and helps maintain attention, music serves as a great motivator and helps reinforce desired responses, assisting a child to reduce negative and/or self-stimulatory responses and increase participation in socially accepted ways.
In non-verbal children, music therapy allows them to communicate without language, fostering creative self-expression. Because music is processed in both hemispheres of the brain, it can stimulate cognitive functioning and may lead to the development of verbal communication, speech and language skills.
The rhythmic component of music is an organizing force in the sensory systems of individuals diagnosed with autism. As a result, auditory processing and other sensory-motor, perceptual/motor, gross and fine motor skills can be successfully addressed through music therapy.
Listening to music, taking turns and playing together all impart social skills in
a safe and fun environment. In my personal experience, social skill classes
never worked for my son because they weren’t organized around a shared activity. Having children come together around a mutual interest
to help enhance social skills would have been a much better route.
I never formally engaged a music therapist for my son, but music has been a lifeline for
him and the surest way to bring him comfort.
When he was a toddler and a meltdown began, I once grabbed a big drum and set
it in front of him. He started hitting it instead of himself and his eyes grew wide with excitement and joy that he was making music.
Soon after, it became my go-to strategy.
In elementary school, he tumbled to the fact that is he is a synesthete — a person who sees music as colors. He started drawing music as he listened to it, giving expression to the colors and textures of the
tones and feeling proud that autism had given him that ability. In middle
school, he used music to initiate conversations with other kids. And now at the
age of fifteen, his vast knowledge of music has landed him a gig writing album reviews for a local radio station.
However you incorporate music into your child’s life, you may soon realize that you are bringing healing and
comfort and possibly planting seeds for future endeavors.
April is Autism Awareness Month and an ambitious effort has been
launched by Autism Speaks for a second straight year through its ‘Light It Up
Blue’ campaign. On April 1st and 2nd, buildings and well-known landmarks in over
120 cities across the United States and around the world will shine blue lights
at night to raise awareness for autism. Additionally, people have been
encouraged to wear blue clothing and apparel on both days as a show of their support.
The Home Depot is even selling blue LED lights that homeowners can use to light
up their homes.
Some notable landmarks that will be participating in the Light It Up Blue campaign
include the Empire State Building in New York City, the Rock and Roll Hall of
Fame in Ohio, the CN Tower in Toronto the Sydney Opera House in Australia and the Christ the Redeemer statue in Rio de Janeiro, Brazil.
It’s nice to see Autism Speaks using its notoriety to create such a massive
awareness campaign. However, let’s hope it translates into meaningful change that will
benefit the millions of families directly affected by autism and not just
something that makes everyone feel good for a couple of days.
Based on the buzz that’s been created thus far, it looks like ‘Light It Up Blue’ will go a long way in drawing much needed awareness and attention to autism in the month of April.
On April 1 and 2, blue lights will be shining in cities all around the world to
help promote autism awareness. In Seattle, The Children’s Museum will be open early exclusively to children with autism, who will be charged a reduced admission fee. People will walk, run, and attend banquets in honor of Autism Awareness Month.
But will these things really matter or will they be window dressing that covers the hard work that actually remains to be
done?
I know I can’t address the things that most concern me alone. My twin sons, who are teens, are both on the autism spectrum. One of them was hospitalized for two months and the children’s hospital where he stayed was woefully unskilled at contending with his condition. This hospital opened a fancy new autism center down the street, but there’s a firewall between the two departments and zero protocols exist for managing
a patient who also happens to have autism. Many mistakes were made that
created an experience more harrowing and traumatic than it had to be.
School systems across the nation vary wildly in their commitment to their students with autism. Lack of training,
fear and ignorance keep progress at bay, inhibiting our legal and moral obligation to provide all children an appropriate public education. Then there’s the tragedy of bullying, rendering our schools unsafe on
many levels.
Haunted by the recent police events in which teens and young adults face disaster and even death because officers are untrained in
autism, I fear for my sons’ safety should one of them happen to get stopped.
And what about their futures? Where and how are they going to live if something happens to me? They are without support systems in the community and have no extended family.
I’ve lodged complaints, called officials, gone to war over and over again with the school
system and am left feeling like David squaring off against Goliath without a slingshot in sight.
Autism Awareness Month makes me most aware of the need to build coalitions around common
causes because this is the only way that vast bureaucracies like hospitals, law
enforcement and school systems will feel compelled to change.
My nature is to be a loner, but my passion around autism issues makes me aware that I need to find like-minded people and get to work to help our children with autism. Don’t get me wrong, I’ll enjoy those blue
lights and the attention they will bring, but I will also focus like a
laser to make sure they are not just for show and actually mean
something that impacts the lives of those affected by autism.
