Facebook has become the cyberspace version of another era’s malt shop – the place where teens hang out after school and socialize. But lately, there’s been a great deal of media attention about its dangers.
In addition to those concerns, there are other pitfalls as well, including teens without many friends feeling depressed, suffering from having to bear witness to peers who are more popular, complete with photo albums of the many fun and exciting social activities that are being missed.
Even for socially well adjusted teens, Facebook can breed dangerous cyberbullying and gossip that gets carried over into their school lives. Many teen suicides
as of late begin with hurtful words online that spread virally through Facebook. And psychologists warn that Facebook is cultivating a craving for instant gratification and shorter attention spans in our youth.
Given all these concerns, one would naturally feel wary for the teen with autism trying to navigate the world of Facebook. But Facebook can actually be very useful for such teens. Photos and names listed explicitly help them to track faces at school. Background information about friends is available and easy-to-reference and exchanges on Facebook can help them plan their next social exchange.
The teen with autism using Facebook doesn’t have to worry if they’re standing too close to someone or not making
enough eye contact. The social cues that are so difficult
in person are eliminated as is the concomitant anxiety and peril of trying to successfully make conversation. And as opposed to real life,
teens with autism can control how they want to come across to others, then try to implement that in person.
Facebook can be used as social crib notes for those with autism, providing topics of conversation to use in real life and the ability to study how neurotypical teens interact. It
also makes it easier for them to find others who share their special and often obscure interest.
Additionally, they can showcase their strengths and abilities, attracting positive attention and possible internships or employment.
Of course, too much expsoure isn’t healthy either and teens should not be totally consumed by the world of Facebook.
They would also need to be aware of online predators and the importance of
not divulging too much personal information. But with proper guidance and oversight, Facebook does offer unique advantages for teens on the autism spectrum.
April 1st ushers in Autism Awareness Month and there is an excellent conference
that kicks off in Dartmouth, Massachusetts to start the month. “When the Belly is the Beast: How Intestinal Health Impacts Brain and Behavior,” is a symposium dedicated to exploring nutritional and biomedical approaches to treating autism. In addition to speakers on
gastrointestinal health, experts will address legal resources for parents of children with
autism and how to access services in the community. The event is sponsored by the Gottschall Autism Center, named after Elaine Gottschall, famed research and cell biologist who wrote
"Breaking the Vicious Cycle: Intestinal Health through Diet."
Gottschall pioneered the Specific Carbohydrate Diet (SCD), a grain, lactose and sugar-free diet designed to eliminate hard-to-digest complex carbohydrates and
prevent harmful microbes in the intestinal tract from causing damage. Many children on the autism spectrum have underlying gastrointestinal issues that manifest as bloating,
pain and diarrhea, as well as poor sleep, tantrums, repetitive behavior and crying
at night. Because of their communication issues, children often express their physical pain in behaviors.
My son with autism suffered terribly for years because of his undiagnosed gastrointestinal problems. He was twice hospitalized for anxiety so severe, it manifested as intrusive thoughts that were long speculated to be psychosis. Ominous warnings of major mental illness were forecast and he was placed on adult levels of anti-depressants and anti-anxiety medications.
At the age of thirteen, his problems culminated in a diagnosis of Crohn’s Disease, an auto-immune disorder in which the gut is utterly diseased and nutrients cannot be absorbed by the body. Chronic in nature and life threatening, the shock of his new diagnosis left me beside myself with fear.
Hospitalized for six weeks during which his weight fell to sixty four pounds, he finally went home with a stomach tube surgically implanted in his belly through which
formula was pumped, his only source of nutrition. I had been terribly wary of it, because a naturopath had speculated he was allergic to milk, but the doctors dismissed my concern and refused to consider diet as any component of the problem or solution.
Instead, they proffered Remicade, a chemotherapy agent that shuts down the immune system and was to be administered in two-hour infusions at the hospital twice a month for the rest of his life.
I felt physically ill at this prospect and quickly researched the drug, which turns out to carry a black box warning for
causing lymphoma in adolescents, my son’s age group. A bevy of other harrowing side-effects including onset of rheumatoid arthritis convinced me that I would not consent to this treatment plan. Not coincidentally, it is also one of the top four profit grossing drugs in the entire world.
It would cost two thousand dollars per infusion with the add-on of it having to be rendered in a clinical setting.
Defying the doctors was a dangerous course, as they wanted me to be declared an unfit mother. Through a series of miraculous events that I liken to finding Harriet Tubman’s underground railroad to freedom, I was led to a doctor in a neighboring state who specialized in autism, environmental
medicine and immunology.
The first thing he did was give my son a food allergy test. It turns out that my child was allergic to almost everything that constituted his diet, including the milk being pumped into his system eighteen hours a day. And those killer doses of psychiatric drugs were further upsetting his stomach.
The doctor told me to slowly wean my son off the psychiatric drugs, supplanting them with oxytocin and nutritional doses of Lithium. We began the SCD
diet and my son detoxed for a solid month, creating quite an ordeal. But after that, he became calmer and clearer and started to actually enjoy eating, as opposed to dreading it. With two ongoing prescriptions for his gut,
low dose naltrexone to regulate his immune system, vitamins, supplements and diet, my son has gained thirty five pounds and is the healthiest he has ever been in his
entire life. The Crohn’s disease has been in remission for over a year.
Sometimes, diet is disparaged as an expensive fad, but for us, it’s been a Godsend. My son’s SCD diet was very daunting initially and represented a paradigm shift in the way we approached food. But now, it’s hard to believe we ever lived any other way.
Fortunately, there is a great deal of online support and information available about the SCD
diet and if anyone wants help, I would be happy to share what I have discovered in the way of websites,
recipes and food sources.
I wish my son had that food allergy test years ago as it would have spared him so much pain and grief.
Consider having your child with autism tested for food allergies. You may discover no allergies to support introducing a casein-free, gluten-free
diet or other food restrictions. Then you have the relief of a rule-out. But if your child is found to have allergies, adjusting
his or her diet can vastly improve the quality of life — and may even save it.
An upsetting video has been discovered on YouTube, mocking James
Durbin and his Tourette’s Syndrome. The video, which was uploaded on March 24,
2011 by an individual using the handle "jordans704," shows a 54-second
clip from this past Thursday’s American Idol results show in which James Durbin
can be seen making unusual facial expressions during an announcement by host
Ryan Seacrest. In the video, a female and a male can both be heard laughing and
chuckling in the background at Durbin’s expense. The clip shows close-ups of Durbin’s facial tics and is replayed several times, during which point he is repeatedly laughed at.
The video’s title is "AMERICAN IDOL JAMES DURBIN TURRETS FACES GOING NUTS!,"
with a description of: "hAD TO PUT THIS UP ON YOUTUBE IF ANYONE DIDNT ALREADY, KID CAN SING BUT MAN CAN HIS TURRETS MOVE!"
When I came across this video, I became extremely outraged as it is a perfect example of
the cruelty and teasing that millions of people with special needs have to
endure on a daily basis.
Durbin, who has been diagnosed with both Tourette’s and Asperger’s Syndromes, has
himself said in multiple interviews that he was severely teased and bullied
while growing up and this video clip is just a small taste of what he had to deal
with. We also wrote another story last month on Durbin and a visitor to our site posted the
following comment:
I am from Santa Cruz, California. I know several people who know James, or who have kids who went to school with James. As the story goes, James was bullied horribly for his afflictions. I am not sure if he is on medication or what his deal is. But I know that the tourettes (sic) and Aspergers (sic) (which was not even named until 1994) were very visable (sic) in James while he was in school. I have heard stories from too many people.
James Durbin’s success on American Idol has created a tremendous amount of awareness for
both Tourette’s and Asperger’s and he is an inspiring example of someone who has
overcome severe challenges to accomplish great things. Unfortunately, as we can
see below, he has also exposed the ugliness, cruelty and ignorance that still
exist in our society when it comes to those with special needs.
UPDATE: 03/26/2011 @ 8:15 PM EDT — We are happy to report that the video in question has been removed by the YouTube user, presumably in response to the ovewhelming replies he/she received as a result of our article.
Thank you to all of you who posted their passionate feedback on “jordans704″ YouTube page to let him/her know that bullying, teasing and harrassment of those with special needs will not be tolerated, regardless of who that person may be.
UPDATE: 04/08/2011 — The following message was posted on the wall of the YouTube account responsible for uploading the video mentioned in this story:
“This is nicks mother, the video was taken down. My son did not post it. His Uncle posted it and I took it down immediately. My son who is 10 does not make fun of ANYONE. i AM SORRY FOR THE hurt this has caused.”
In a tense moment on American Idol Thursday night, James Durbin, along with
Paul McDonald, were both on stage awaiting their fates from Ryan Seacrest. The American Idol host delivered the news that neither Durbin nor McDonald were
safe, temporarily stunning the audience in attendance and millions at home.
However, in a strange and bizarre twist, wrestling star Hulk Hogan emerged from the
backstage area to deliver the news that both of them had in fact made the
"Top 10," making them eligible for the American Idol summer tour.
The memorable Season 10 moment had been preceded by a segment showing Durbin’s
affinity for professional wrestling. When Hogan came forward, Durbin was clearly
starstruck at the presence of his wrestling hero.
Later in the broadcast, the real drama occurred when popular contestant Casey
Abrams learned that he had received the lowest amount of votes from last
night’s performance, thereby eliminating him from the competition. However, in a
dramatic turn of events, all three judges unanimously agreed to use their
one-and-only "save" of the season, reinstating Abrams back into the
American Idol competition.
Seacrest then notified audience members and viewers that all 11 contestants
would be participating in the American Idol summer tour, creating a "Top
11" instead of a "Top 10."
The use of the "save" by the judges means that the stakes have now
been raised and Durbin and the other American Idol contestants have no safety
net if they receive the lowest number of votes in the weeks ahead.
A frontrunner since the beginning of the season, James Durbin has overcome
numerous trials in his life, including the death of his father at the age of
nine, Tourette’s
Syndrome and Asperger’s, a high functioning form of autism. Since his emotional
backstory emerged, he has become a fan favorite, particularly among those in the
special needs community.
With little margin for error, Durbin will have to continue demonstrating his
impressive vocal range and dynamic performances if he is to compete for the
American Idol title in May. The compeition this season is particularly fierce
and as
tonight has demonstrated, anything is possible.
A persistent and pervasive problem within school systems is the conflating of conduct disorder with autism. Research has shown that while individuals with conduct disorder have problems with social interaction and the perceptions of others, their problems are considered to arise from abnormal social learning, rather than the intrinsic developmental difficulties of Asperger’s
Syndrome (AS) and other autism spectrum disorders (ASDs).
Those with Asperger’s are significantly more impaired than the conduct disordered group in terms of their threshold for annoyance, perception of their own role within a
conflict and their ability to withstand teasing. They tend to value a friend in terms of what that person did not
do such as, “he’s my friend because he doesn’t laugh at me."
While the level of overall symptomatology is equal between the groups, AS individuals have more inwardly directed problems such as sleep disorders, obsessions and compulsions.
Unlike the conduct disordered group, they are seldom prone to outward expressions of their problems through stealing, drugs and alcohol.
Individuals with Asperger’s are frequently misdiagnosed as conduct disordered and even when they are properly diagnosed, they are still labeled “behavior
problems” and treated as such. Conduct disordered kids are given a strict system of rewards and punishments to modify their behavior.
Often it is laid out that if they commit a certain act, they will experience “natural consequences” for it. “Natural
consequence” is code for “naturally, you will be punished."
Asperger’s Syndrome expert Dr. Tony Attwood has made it abundantly clear what parents of AS children already know – punishing them does not work.
When they are upset, remaining calm and giving them space is the best option.
To modify their behavior, appeal to their logical reasoning, which is their personal compass in life.
Because they are so intelligent, they loathe being patronized or having to follow rules they deem illogical.
Soundly make your case, and they will be won over.
Shaming them before their peers, punishing their outbursts, getting caught up in contest of
wills or making them “talk it out” when they are already provoked are all
recipes for disaster. The adult approaching an Asperger’s child in this way will only be inflaming the situation, then pointing to their meltdowns as evidence that they are conduct disturbed.
That’s why it’s so important for parents to work with schools to identify the child’s triggers and come up with a “toolbox” of coping strategies.
Sometimes, having a tent in the corner of a classroom for the child to retreat to with a favorite toy or book is useful. An
iPod to provide soothing music can be written into an IEP. Stepping outside for a breath of fresh air works wonders. Tony Attwood suggested making a “Pleasures Book” (a scrapbook of things that make your child happy) to take out when they need comfort.
This topic is on my mind now because of my son. Last year, he had a wonderful teacher in middle school who knew to shift his attention when he got upset and provided soothing choices for him to de-escalate.
He actually became self regulating, and went months without a meltdown. But this year, he’s hit a wall in high school – all his progress has been obliterated by a behaviorist teacher who knows nothing about
Asperger’s or ASD.
I was so upset about his regression that I even called a member of the school board who replied to my tirade
with campaign platitudes like, “I care about special education” and “our school district values
inclusion." When I told him the special ed teachers don’t know anything about autism he grew
indignant and replied, “but that takes money!”
Autism Awareness Month begins in one week and it’s my desire for those in our
school systems to use that time to further educate themselves about autism spectrum
disorders. Awareness and education are the only ways to combat the
ignorance that currently exists in our schools and greater awareness will go a long way in helping educators understand and differentiate autism from similar, yet unrelated conditions.
Last week, we wrote about a popular video clip involving Casey
Heynes, an
Australian student who retaliated after being bullied by 12-year-old Ritchard
Gale. The video struck a chord with many across the globe and went viral, being
viewed by millions in the process. We covered the story on our site because of
the inordinate number of children with autism who are bullied on a daily basis
and felt the need to shed additional light on this growing epidemic that
currently exists in schools.
On Sunday, A Current Affair (ACA) Australia, aired a fascinating in-depth
interview with Casey Heynes (posted below) that gave the back-story that led up
to the on-camera bullying episode and subsequent retaliation.
In the ACA segment, Heynes describes a chronic pattern of abuse that occurred
"practically every day." Some of his torment included being
called "fatty," taking slaps across the back of the head, being
tripped and bombarded with water bombs at school. The bullying began all the way
back in the second grade and continued until the day Heynes’ incident was caught
on camera. The harassment was so severe, Heynes describes how he considered
suicide as recently as last year. "Bullycide" as it is called, has
become a major problem among teens who are tormented to the point of taking
their own lives.
As a parent of a child with autism, these bullying stories are extremely
upsetting and much more needs to be done to address this seemingly
out-of-control problem.
If there is any silver lining to the Casey Heynes incident, it has brought significant attention to bullying in schools and will give further ammunition to those seeking
legislative changes to address the epidemic. In fact, as we reported
the other day, California Congresswoman Jackie Speier will soon be introducing legislation
that addresses bullying against special needs students.
The video below is a great testimony of how a single incident can change the
course of how the public perceives a particular issue and the good that can come
from it. In fact, the Casey Heynes story may be the proverbial straw that breaks
the camel’s back, providing a catalyst for significant change to help finally
protect our children from bullies once and for all.
Last month, we reported
about an incident that occurred at Disney’s Hollywood Studios involving some
bullies and a child with autism. The incident itself was unfortunate, but
Disney’s poor handling of the situation afterwards created a lot of anger on
message forums and blogs (including our own), with some parents threatening that
they would not be returning to Disney in the future.
In fairness, I have decided to post a recap of our recent trip to Disney World’s
Magic Kingdom, the most popular of Disney’s four major theme parks in Florida.
Our family, which includes my 9-year-old son with autism, packed our bags and
headed to Orlando. Immediately upon arriving at the Magic Kingdom, we
visited Guest Services and let them know about our son’s condition. They
were extremely accommodating and provided us with a Guest Assistance Card.
This is a must-have for families of children with autism who are visiting any of
the Disney World parks. It allows your child and up to five other guests
to access the "FastPass" areas, by-passing many of the long lines in
the process. However, be prepared to show documentation from a doctor
about your child’s condition. Additionally, the card does not guarantee
your party will skip every line in the park — it only provides the opportunity
when available. On some of the more popular attractions, there is still a
wait, but nothing near what you would experience from normal lines.
However, the good news did not last for long. Ten minutes after entering
the park, our son complained that he felt sick and became very nauseous.
We had planned this trip for several months, only to have him get sick almost immediately
after entering the park. As a parent of a child with autism, nothing is
surprising anymore — after these many years, we have learned to just roll with
the punches.
A wheelchair was summoned and I took our son over to the First Aid Station,
which is an infirmary located within the park. The nurses there were
amazing and incredibly friendly and caring. They took my son in with no
wait time, laid him down on one of the many sickbeds and took very good care of
him. I have had my share of emergency room visits over the years and the
treatment we received today was very different than what we are used to.
After about thirty-minutes of resting, my son said he felt better and we were
back enjoying the park after some Motrin was given to reduce a mild fever.
The day went as well as could be expected, but was eventually cut short after
the medicine wore off and the fever returned.
The thing that really stood out for me was how accommodating Disney was not only
after learning of our son’s autism, but also after he became sick. I found
out first-hand that Disney’s treatment of special needs guests is unparalleled
to what most are accustomed to in the "real world."
We’re hoping to make it to Epcot tomorrow, but with our son’s sickness, we may
have to cut our vacation short and return another time. Regardless of when
that is, it’s comforting to know that my son and the rest of the family will be
in good hands should any health or autism-related issues arise during our visit.
Lately, I’ve been addressing the many hard and scary aspects of autism,
in particular, safety issues at school and in the community. I now feel the need to shift my attention.
It’s easy to see the world of autism through a glass darkly when there’s so much work
to be done to ensure our children have a warm, safe place to be within society.
On the flip side, I want to let the sun shine on a day of happiness I enjoyed
last Friday as my son competed in a regional robotics competition in Seattle. My son has high functioning autism and has always been
inordinately shy and self-contained. At the age of fifteen, one of his current IEP goals is “to initiate a conversation with a fellow student once a
week." This goal is indicative of just how shy he is.
Chronically underestimated by teachers, I’ve always known his potential, even as they cast dire warnings about his future.
Lack of eye contact, emotional withdrawal and struggles with homework are
issues, but do not define him as a person.
My son has always gravitated towards science and his interest has been honed to engineering.
Just as he entered high school, a new robotics club was founded at his school.
Ecstatic at his good fortune, he faithfully attended meeting after meeting.
He joyously learned C++ programming, which he excelled at to the point of becoming head of the programmers, only one of two ninth graders to hold a position of leadership within the club.
Towards the end of the build season, he put in eight-to-ten hour days on weekends and over vacations, working hundreds of hours on
a robot. The social skills and sense of belonging he acquired through this
club could never have been delivered through an IEP goal.
Yesterday, the huge event was held in which all the roboteers and their creations assembled to compete against one another.
The atmosphere was incredibly festive as teams feverishly worked in their assigned pits to ready for battle.
Looking down upon my son from the balcony, I felt tears of joy well up that my self-professed geek had
finally found his people and path forward in life.
The first round of competition ended badly for my son’s team. Their big robot didn’t even place one inner tube on the hook as it was supposed to and their minibots
assigned to block the other team seemed quite unequal to the task. Afterward,
everyone on my son’s team, including the mentors, looked like their dog had just
died. One frantic team member ran off with a big part of the robot in his hands looking as if he was carrying his very heart.
My son’s dad had rallied from his sickbed to come see our son and we had to leave soon after, as he was fading fast.
We could only hope the day got better after we left.
When my son got home at eight that evening, he was beside himself with happiness.
His team had won a special award for “Best Rookie Team” based upon citizenship,
dedication and teamwork. And he brushed off the opening fiasco, proclaiming that they improved throughout the day and had a solid finish.
These are the things that make having a child with autism such a poignant experience.
Any parent would be proud of their kid on a day like today, but for a parent of a child with autism,
the feelings are amplified one-thousand fold. In moments like these, the weight of the burdens of autism are more than
counter-balanced by the blessings.
Help your child find his or her passion. When they are young, give them lots of clay,
paint and paper. Turn on the music and let them dance. Take them to museums with hands-on exhibits.
Read to them as much as possible. Buy an annual pass to the zoo and the aquarium.
See if they like children’s drama. Try not to impose expectations, especially
in the area of athletics, as many children on the autism spectrum shun organized sports.
You may never be a little league dad or a soccer mom, but that’s okay.
Regardless, let your child reveal himself to you out of the plethora of experiences you provide.
Believe me, as I have just experienced, the rewards will be immeasurable and profound.
A global financial crisis. Unrest in the Middle East. Earthquakes and tsunamis in
Japan. Nuclear radiation fallout. Bombings in Libya.
A cursory glance at these recent headlines would give any neurotypical
person reason for concern at our world’s current state of affairs. However, for
those on the autism spectrum, these events can create unneeded anxiety and
worry, particularly for those who are high functioning.
My son is at an age where he pays attention, understands and fully comprehends current events. As it stands, he already has an elevated phobia of earthquakes and
natural disasters, so recent events in Japan only served to exacerbate those
fears.
As with any child, it’s important to keep a healthy balance of reality, while at
the same time, protecting them from unnecessary information that is going to
cause undue fear. As renown autism expert Tony Attwood once stated, "Autism
is anxiety looking for a target.”
Many fears associated with those who have autism manifest when routines are
disrupted and children find themselves in unfamiliar situations and events. With
apocalyptic headlines coming in on a near-daily basis, parents should do
everything possible to provide comfort and solace to their children and ensure
them that no matter what happens around them, they will continue to have a
loving and caring support system in their lives.
Some things that can be done to allay some of the fears in children with autism
include the following:
1) Offer up a favorite game or activity. When anxiety sets in, offer
your child a familiar game or activity to help divert their attention from the
problem at-hand. This could include a favorite iPad app, Nintendo/PlayStation/Xbox
game or book.
Tell them that things are going to be fine and providing them with a familiar
activity will go a long way in soothing frayed nerves.
2) Limit television and Internet exposure. While it’s important not to
completely shield children from the realities of our world, TV time
and Internet usage should be kept to a minimum. Internet filters are also very
important and one of the
best programs I have come across for protecting a child on the Internet is
the K9 Web Protection program. This is a completely free software program that
can be installed on your computer that will filter news, social media, gambling
sites, adult content and just about any other topic you can think of. Everything
is customizable and the best part of this software is that it’s free. It can be
downloaded at: http://www1.k9webprotection.com/get-k9-web-protection-free
3) Pray. Take the time to pray with your children on a daily basis.
Bedtime is usually an ideal time when you can say your prayers, then discuss the
things that are concerning your child — all while they are in a relaxed and
safe environment. Talk them through their fears and let them know that despite
bad things happening in the world, there is a greater purpose to their lives and
ultimately, God is in control.
Children with autism already have a lot to deal with and there is no need to add
to those fears by having them concerned with every headline that comes across
the newswires. Keeping an open line of communication with children and being a
supportive parent or caregiver is typically the best anecdote for any anxiety
that may be created from recent news events.
The majority of children with autism have at least one or more sensory
issues, which may include sensitivity to light, sound or touch. A particularly
common problem for a child on the spectrum is an aversion to toilet paper, which
can often lead to stressful potty episodes for parents. Even the softest toilet paper products
on the market can turn a routine trip to the bathroom into a meltdown of epic
proportions.
Not long after our son was diagnosed with autism, I recall him dreading trips to
the bathroom because of the uncomfortable feeling toilet paper produced on his
backside. Wiping with paper is irritating enough for neurotypicals, so this
problem is only compounded for those who are hypersensitive
to touch, which included my son.
Then a few years ago, we discovered a relatively inexpensive product called the
Biffy, which is a bidet-like attachment that affixes to existing toilets,
turning them into powerful cleaning devices. The product was invented by a
physician and has been a lifesaver for our family.
The Biffy is hygienic and doesn’t require any manual dexterity or
coordination, which is particularly important for those with special needs. It
draws from a home’s clean water supply and incorporates a showerhead-like
apparatus that produces a fan of water to a user’s bottom, thoroughly rinsing the area clean.
An adjustable dial helps a user control the strength of the spray, which can be
quite strong when on its maximum setting.
The standard Biffy retails for around $99 and is definitely money well spent.
However, we have found that it does tend to wear out after about a year or two, at which point you would need to buy a new one. To counter
this problem, the company has recently released a "Chrome" version
which is said to be more durable and last longer.
Other similar products include those from BBC
Innovation and Bidet
International, which I have not tried. Although they produce similar
results, the designs are noticeably different from the patented Biffy.
I’m not a big fan of product promotion within our stories. However, there are
times when we make exceptions if we feel something will be particularly
beneficial to parents, caregivers and individuals with autism. The Biffy
certainly fits this category and although it takes some getting used to, after a few times of using this thing, you will wonder how you and your child ever went without
(no pun intended).
