While raising a child with autism is a day to day journey, in the back of every parent’s mind is what level of independence their child will eventually achieve. Where and how will they live?
Lately, I’ve been coming across articles about concerned parents coming together to generate living spaces for their children. In Canada, a group of parents designed an apartment house for their young adults on the spectrum to dwell in, complete with quarters for live-in aides. It enjoyed underwriting by the Canadian government, but unfortunately stalled due to the economic downturn. The parents still vow to replace promised funds and see the finished architectural renderings become a dream home for their children.
In Asheville, North Carolina, Jesse Willis, aged 29, is severely autistic yet lives in a house with two
roommates and holds down a restaurant job. Independence from his parents was once thought an impossibility, but the three men’s parents bought the house and the Autism Society of North Carolina pays for the live-in staff that provide their around-the-clock oversight. The community is embracing Jesse and he enjoys a good life, a life his parent’s never dared dream for him.
Strength obviously springs from families of adults on the autism spectrum coming together to generate workable solutions. The collaboration between (albeit it undependable) government and
families and the partnership between families and state autism societies are exciting aspects of these stories.
The weakness lies in a parent who cannot afford to kick in financially for their child’s housing. Their economic stake should be provided by a foundation or charity so that they too can participate in this creative problem solving.
With my sons having just started high school, their transition to adulthood is moving from the back burner to the front. Now, I’m thinking over who they could live communally with, what level of support they would
need and what groups are available within the community to participate in a plan. It’s good to be able to think creatively about the next phase of their lives instead of merely experiencing apprehension over their futures.
Alabama, Arizona, Arkansas, Colorado, Florida, Georgia, Idaho, Indiana, Kansas, Kentucky, Louisiana, Mississippi, Missouri, North Carolina, Oklahoma, South Carolina, Tennessee, Texas and Wyoming.
These are the remaining states where corporal punishment is still legal in schools. On April 7, New Mexico courageously removed itself from the list.
Despite empirical evidence that corporal punishment negatively impacts academic success and causes
long-term psychological and social harm, there is no federal ban on the horizon and inmates in juvenile detention centers actually enjoy greater protections from physical punishment than students in public schools.
Perhaps most alarming is the fact that students of color and students with disabilities such as autism are disproportionately subjected to corporal punishment.
Distressingly, a child with autism or Tourette’s syndrome is most often physically punished for exhibiting symptoms of their disorder. Abuse of children on the autism spectrum tends to include more other forms of abuse as well, like dragging, pinching, slapping and improper restraint. Obviously, the legal rights of these individuals are being systematically denied and their conditions are worsening instead of improving.
Corporal punishment pits parents against schools, as parents objecting to their child being paddled or otherwise harmed have no recourse but to withdraw them. Drop out rates have been demonstrated to spike among paddled populations, as has aggressive behavior in children with autism who have suffered physical harm in the school setting.
During Autism Awareness Month, let’s redouble our efforts to shed light on the dark truths of our educational system and compel those nineteen remaining states to join the 21st century.
It’s all over the news that a Massachusetts woman
has been charged with attempted murder, child endangerment and assault and
battery for withholding cancer treatment from her son who also suffered from autism. She admitted that she did not give him in-home chemotherapy prescriptions for five months because the side effects made
her son so sick, she was afraid he couldn’t withstand them. His cancer, once in remission, returned and he died of lymphoma at
the age 9 in 2009.
Certainly, this story is an unspeakable tragedy by any measure, but rather than address the woman’s guilt or innocence, I want to speak to
the underlying issues. This woman was a broke, single mother with little or no support from the boy’s
father and took care of her son alone. Those of us with children on the autism spectrum know what a daunting and exhausting task raising our child is. Now add the dimension of that child having a separate, life threatening disease.
From personal experience, I know that even the most prestigious hospitals can lack special protocols for children with autism, making their stay much more stressful than it needs
Late the second night after my child was admitted into a hospital, they moved him without warning to another floor. He became hysterical and
there was no one there to be with him. The next morning, I walked into what I thought was his room only to find it stripped bare of everything, beds and equipment included. I went into shock thinking he had died in the night. This was just the kick off to six weeks of such horrific surprises and mistakes.
Then once a child is released from the hospital, a parent is expected to become
a full time nurse, charged with monitoring IV machines, stomach pumps, copious
amounts of medication and whatever else it is that goes home with him or her.
What doesn’t go home with you is help and support. Already pushed beyond the human limits of endurance by a lengthy and harrowing hospitalization, parents are tasked with being their child’s medical
caregiver, then held accountable should something go awry.
This is a very serious problem and endemic at our children’s hospitals. Public health nurses and respite care should be made available to the parents of seriously ill children after they leave the hospital, especially single mothers without the support of an extended family. Community support is generous for these institutions and special funds should be allocated to
assist parents once their children leave the hospital proper.
The woman in this tragic story needed other hands to help with her son. She needed to sit in a cafe and drink coffee or go for a walk. She needed to be part of his home medical team, not the whole show. Someone should’ve had her back.
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.
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