The topic of bullying has been front-and-center this past month, including an anti-bullying conference
held last week with President Barack Obama, along with First Lady Michelle Obama.
The conference addressed the administration’s anti-bullying campaign and plans
to hold school districts accountable if they don’t adequately protect bullied
students. Then a video went viral this week featuring Casey
Heynes, an
Australian sixteen-year-old who turned the tables on a school bully and body slammed him
into the ground.
More notably, Congresswoman Jackie Speier of California recently spoke before her colleagues about the epidemic of bullying in our
schools and addressed the heartbreaking truth that children with special needs are bullied at a
much higher rate than all others. Additionally, it was noted that bullying reported among those with autism and Asperger’s Syndrome was markedly higher than
neurotypical children. Ms. Speier will soon be introducing legislation to address this crisis head-on, requiring schools to track incidents against children with
disabilities and include content in anti-bullying programs that specifically addresses this
susceptible segment of students.
While I applaud these efforts, it seems more education and awareness will be required to truly make a difference. If a school has an inclusion program, as most do, guest autism speakers should address the PTA on what it means for neurotypical and children with autism to share a classroom. This would cue parents of neurotypical children to not be fearful or resentful of a child with autism sharing a room with their child. The parents could then in turn help their children become more compassionate and supportive of their special needs classmates.
Tragically, much of the problem comes from the top, as administrators and teachers themselves don’t understand or appreciate the nature of autism, even as they are required to meet the needs of those students in their midst. Too often, the principal regards the child with autism as a “headache” and a behavior problem absorbing
his or her valuable time.
As far as teachers go, my experience has been that when a teacher sets a respectful tone towards a child with autism, students
will follow the lead. Sadly, the converse is also true.
Earlier, I recommended a new DVD called “Intricate
Minds” as a way of facilitating a dialogue about Asperger’s
Syndrome and though I personally haven’t had the opportunity to introduce it in a needed school setting, I hope someone else will do so and share their findings.
Personally, I would advocate training about autism among adults in schools
who are most likely to encounter a child with autism and also require a fixed number of training
hours for all special education teachers. There is also software that some schools are using with great success that enable students to report incidents of bullying they have endured or witnessed anonymously online to a school administrator. This is a resource that should be available in every school.
We all want to provide children on the autism spectrum a bully-free and safe
environment, but we cannot do that alone. Only through knowledge and awareness
will we be able to counter the ignorance and fear that currently exist in our school
systems.
The National Autism Association is making headlines for advocating the
implementation of a diagnostic code on behalf of minors with special needs that have a history of
wandering. A serious risk among children with autism is death associated with wandering, including accidental
drowning and exposure. A special diagnostic code would increase awareness among physicians about this phenomenon and help disseminate critical prevention materials and safety recommendations. As we head into
spring and then summer, accidents and fatalities associated with wandering will surely rise with warmer temperatures, making these issues all-the-more pressing.
In addition to greater preparedness and prevention, a diagnostic code would help police and search-and-rescue teams establish protocols for interacting
with individuals that have autism. This dovetails nicely into the necessity of our police force to become more skilled in dealing with
those in the community. As we have seen lately, too many avoidable tragedies
have occurred when individuals with autism were unable to interact appropriately with officers.
Another related issue involving children with autism is the propensity to flee when their sense of safety is threatened. Statistically, these children are at
a much greater risk for restraint. Unfortunately, I know this all-too-well as it has happened to my fifteen-year-old son multiple times and in multiple ways.
Most recently, his anxiety was triggered in school, which caused him to flee his
class and scream down the halls. While his teacher didn’t restrain him physically, she did tell him that he terrified the entire school and his classmates thought they were in the midst of another Columbine situation. I can’t tell you how devastated and humiliated he was to be told this.
He even had a horrific nightmare that his teacher grew huge and sprayed him with pesticide and he died. Obviously, her tactics were as
psychologically wounding as any type of restraint she could have used.
Since children with flight impulses have been known to disappear from environments where they are presumed to be safe, best practices entail addressing a child’s triggers at the
source and having a response plan ready when an incident does occur.
Right now, there is a way to protect a wandering child with autism without having to wait for any changes to the diagnostic code. Project Lifesaver (
http://projectlifesaver.org ) fits individuals with
a lightweight tracking device and trains teams to successfully recover them when they get lost. Cost of the service is twenty-five dollars
per month for maintenance of the device, although sometimes the services are rendered for free. With the advent of the diagnostic codes, insurance would likely cover it as well.
There are so many ways parents of a children with autism need to address their safety, especially since
their emotional and physical needs are so directly and powerfully linked.
It’s essential to connect with existing resources within the local community and for those resources to be strengthened and
expanded. And ultimately, it’s the people who interact with our children on a
regular basis who are the ones that will be instrumental in helping us keep them
safe.
The Internet and blogosphere have been buzzing all week about a bullying
incident that occurred on Monday in Sydney, Australia. Sixteen-year-old Casey
Heynes was the target of repeat bullying by numerous students at Chifley College, Dunheved Campus at North St Mary’s
and can be seen in a video once again being tormented by a fellow student.
However, the video, which has gone viral this week, shows an unexpected turn of
events when Heynes decides to retaliate and ends up body slamming his
12-year-old attacker, who has been identified as Ritchard Gale. Despite the clear act of self-defense, the school made the
decision to suspend both Gale and Heynes once the video began to circulate online.
Casey’s father said yesterday his son had been the victim of bullying for several years and feared for his safety if he spoke about the fight.
“There’ll be reprisals from other kids in the school and he still has to go to school somewhere,” he said.
Luckily, no one was hurt in the incident, despite Gale getting up
with a severe limp after being slammed into concrete.
This story is important because bullying is all-too-common for children on the autism spectrum, particularly
those who are high functioning. While the incident was unfortunate, it is
encouraging that it is receiving so much attention as it will certainly bring
greater awareness to bullying and some of the torment that many
students have to endure on a daily basis.
Most incidents of bullying don’t turn out like this and it’s safe to assume Ritchard Gale will think twice about picking on someone again. Kudos to Casey.
A recent Virginia case in which an teenager with Asperger’s was sentenced by jury to ten-and-a-half years in prison for assaulting a police officer is a horrible tragedy for all concerned.
News accounts reported that the teen went to the library, but finding it closed, sat down outside on the grass.
It was pointed out that the teen happens to be black and nearby school children became afraid
and complained to the school crossing guard, saying that he might have a gun. Police were then summoned.
A single officer approached the teen, checked him for a gun and found no weapon. He then asked his name several times with no response. Because the teen wouldn’t tell the officer his name, he grabbed the youth by the arm and threw him over the top of his car in order to cuff him while declaring him under arrest. A struggle ensued and the teen
caused injuries to the officer.
This is a terribly disturbing case on many levels. The officer is himself the father of mentally
challenged thirty-three year old and on that basis, was said to be highly sensitive of
those with developmental disabilities. However, an officer experienced with autism would not expect
their subjects to answer all questions asked or find the need to suddenly grab and arrest
them. Why was there no call for back-up?
So basically, a young man with autism was sitting outside a library waiting for it to open and then a short while later,
an officer is injured from a struggle and now a young man faces over a decade behind bars.
This is the latest in a series of avoidable tragedies, including the wrongful deaths of two young adults with autism in Los Angeles. All
of the cases share the fact that the suspects were committing no crimes, but failed to respond properly to police commands. The
concerning element is without proper training and awareness, the number of these cases
are going to expand exponentially as more and more children with autism grow into young adults.
Because the teen had another incident on his record, the prosecutor maintained that he was wasn’t impaired by autism, but rather is an innately aggressive and dangerous person.
The fact that the jury bought this parsing of conditions is not good news for anyone.
In a previous article, I advocated for a voluntary autism
registry, but that is a distant goal that requires a great deal of work and effort, even after communities agree that it’s needed. I am now thinking that teens and young adults with autism should carry visible medical alert
indicators such as a bracelet or necklace to notify officers of their condition and provide an emergency cell phone number
of a caregiver.
Of course, the need for more officer training in autism is only amplified by
these heartbreaking turn of events.
One of the premier organizations that offers autism training for officers is run
by Dennis Debbaudt. Dennis is an ex-law enforcement official, father of a son
with autism and the founder of Autism Risk and Safety Management. We interviewed
him a few years ago and he provided some great insight into this emerging
problem and what is being done to address it.
While his organization is doing a tremendous job, much more effort is needed by others to
address this growing problem so these types of incidents are minimized or
completely eliminated in the future.
Parents of children with autism are always seeking ways to enhance the quality of
life for their children and massage therapy is becoming an increasingly popular
way of doing so.
One would think that a child with autism, who is commonly averse to touch, would find massage therapy intolerable. However, a massage therapist who works with children
are usually skilled at introducing touch and slowly building tolerance for it. Massage therapists know that it’s the light touch that is so aversive to these
children and they actual tolerate deep massages quite well.
The health benefits of massages are well-documented to the point where they are covered by many insurance companies and prescribed as supplemental therapy by some medical doctors.
Biochemically, body massages release serotonin, a neurotransmitting chemical known for giving a sense of well-being and
happiness. Conversely, abnormal serotonin synthesis is said to be linked to autism.
The Touch Research Institute of Miami has conducted several studies on the effect of massage therapy for children on the autism
spectrum and their results confirm what is anecdotally acknowledged – massage therapy can be of great benefit to children on the spectrum.
In one particularly interesting study, twenty children with autism ranging in age from 3 to 6 years were randomly assigned to massage therapy and reading attention control groups. Parents in the massage therapy group were trained by a massage therapist to massage their children for 15 minutes prior to bedtime every night for one month, while the parents of the attention control group read Dr. Seuss stories to their children on the same time schedule. Results showed that
the children in the massage group stayed on task better at school and showed more social relatedness during playtime observations.
Parents also reported that their children were more responsive to verbal cues, had an easier time with daily tasks, slept
better and were generally calmer.
Most poignantly, these children were more receptive to their parent’s touch and even initiated affection themselves. Scientists used to believe children with autism couldn’t bond with their parents.
This theory has since been discarded and children with autism do indeed bond with
parents, but sometimes just cannot show it. It is very encouraging to know that massages
create a new avenue of expression and help bridge the worlds between a parent and child.
As always in examining alternative choices, consider them as ways to augment and enhance established medical protocols, not replace them.
When my son with autism was finally released from the hospital after battling Crohn’s, massage therapy was instrumental in him regaining his health and vitality. Doctors were amazed at his progress at his first follow-up visit, proclaiming that he “looked and felt like a different
person." I credit massage therapy with providing a boost of energy to his recovery. His cheeks were rosy, his eyes bright and his spirit was calm.
Best of all, there was no risk and no gimmicks — just the ancient art of human touch.
Sal Khan was a hedge fund manager tutoring his cousins through
distance learning. He started making them instructional videos to reinforce their learning when he couldn’t be there in
person and after a few lessons, his cousins told him that they liked him better on video. After absorbing
the shocking statement, he realized it was a back-handed compliment.
Through the use of video, his cousins could repeat what they didn’t understand without suffering embarrassment, while still having the benefit of their uncle’s warm, approachable demeanor. He started making them videos for a myriad of subjects and envisioned an entire public academy of free lessons delivered via YouTube.
That dream is now a reality in the form of the Khan Academy, which boasts 2,100 instructional videos on a range of
topics, as well as ongoing assessments and test preparation courses. There’s no
sign-up and no
login requirements — users simply go to the Web site and start learning ( http://www.khanacademy.org
).
Children with autism naturally gravitate towards computers and online learning where the social and sensory issues of a classroom are eliminated.
As a result, the Khan Academy is a great resource for parents of these children
to be aware of. Although much of the information is advanced, basic arithmetic is offered and affords a perfect way to augment math learning for young children with autism. Older children with autism can find many topics to reinforce classwork, or explore their special interests.
As a mother of a high school freshman with autism, I have been forced to home
schooling because his high school placement failed, so I am thrilled to discover
the Khan Academy. The timing of
the discovery couldn’t be more fortuitous as I was worried about the expenses
associated with gathering all of the appropriate curriculum for him.
The Khan Academy even attracted the attention of Bill Gates, who sees it as the wave of the future
for education. His foundation is supporting Sal Khan in his quest and is actively seeking ways of bringing his model of learning directly into the classroom.
Since time immemorial, man has been connected to the earth. Working in fields or gardening, walking barefoot on
beaches, or sleeping under the stars are all activities that link us to the natural, electrical energy of the earth’s surface. But modern man, in his concrete world filled with monitors and machines, has become more estranged from these elemental forces.
Earthing (aka grounding) is a term that refers to the conscious choice to re-establish that lost connection. People who subscribe to earthing report better sleep, less stress,
reduced chronic pain and faster recovery from trauma. Earthing has been reported to
equalize the body to the same energy level as the earth’s, resulting in the
synchronization of our biological clocks, hormonal cycles and physiological rhythms. Hence, the body is
suffused with healing through negatively charged electrons present on the earth’s surface.
Earthing as a scientific and medical movement began in the late 1990s when a retired cable TV executive named Clint Ober started to think about the human body in terms of electrical
grounding. Mr. Ober drew parallels between the workings of cable TV and the
human body’s electrical system. He realized that most people wear synthetically-soled shoes that insulate their bodies from the
earth’s energy field, which stabilizes not only cable TV, but all electrical
equipment throughout the world. This realization has lead people to
recognize scientifically what man has always known intuitively: direct contact with the earth is beneficial to one’s health.
In fact, two separate studies on earthing/grounding were conducted in 2004
and 2010 and published in The Journal of Alternative and Complementary Medicine.
In the latter study, twenty-eight men and women took part and were subjected to a grounding
device while sitting in a standard reclining chair for two hours.
Readings were taken during all phases of "treatment" and surprisingly,
they indicated changes in blood oxygenation, pulse rate, perfusion index and respiratory rate.
As a result, the following was concluded by Dr. Gaetan Chevalier, who oversaw the study:
"These results warrant further research to determine how grounding affects
the body. Grounding could become important for relaxation, health maintenance
and disease prevention."
Grounding as a potential treatment for autism came to my attention through my son’s physician, Dr. John Green of Oregon City.
Dr. Green only works with children with autism and also specializes in environmental health and immunology. His response
was, "I think earthing will prove helpful with sleep quality in some of the sleep disturbed
children and may in the longer term help with oxidative stress, which is such a huge factor in most kids on the
spectrum."
As alternative treatments go, grounding appears to be safe, natural and very
intriguing. Earthing "blankets" can be purchased at a relatively inexpensive
price and while no one method should serve as a substitute for traditional
autism therapies, it’s certainly worth investigating to examine its potential
benefits.
We would encourage anyone who has tried (or will try) grounding to report back
on their experiences.
Recently, a
study was conducted by Brian Freedman of the Center for Autism and Related Disorders
(CARD) at the Kennedy Krieger Institute, dispelling the popular notion that the
divorce rate among autism families was near 80%. The study found that despite
high stress among families facing autism, 64 percent of children with an autism spectrum disorder
had two married biological or adoptive parents, while 65 percent of children who do not have an autism spectrum disorder had two parents.
The findings seemed to contradict previous theories about divorce and autism,
offering little comfort to those within the autism community who have been
impacted by divorce. For these families (including mine), their rate is 100%.
Divorce involving families of children with autism leaves millions of children
in situations that will be detrimental and will certainly cause a child’s progress to be severely impacted.
So, what can be done?
The key is to focus on the big picture. A child’s best interest must be put first and personal battles have to be let go.
Years after arguments and disputes are over, a child’s growth will be obstructed because of the now-forgotten fight.
Putting a child and a relationship at the helm will keep ships sailing back into smooth waters following the rough seas.
A family’s goal after a divorce must be healing the child with autism. Anything and everything beyond that is secondary. Remember, these kids have impeccable memories and think in pictures. Mommy is mommy and daddy is
daddy and the images and painful memories of a divorce will remain for many
years to come.
I have personally chosen that I would rather be alone and respect my child’s relationship with his daddy then to ever try and substitute.
A child does not directly cause the break up and should never have the door
closed to both parents.
A marriage and family counselor of the courts once explained, "When you
break up and see each other again, it’s like sitting on the curb in front of
your house that has just burned down…you are so euphoric to be alive and in
each other’s arms knowing that there’s still a chance."
Many couples have tried reconciliation but cannot avoid breaking up again
because a house needs to be rebuilt and if you don’t correct the things that caused it to burn down in the first place, it will burn down again.
It is always wise to bring counseling in, but it is also important to remain cautious.
Counseling for parents of children with autism has to be extremely specific. Ideas like having
a child get used to two different homes or regularly changing his or her routines may seem like textbook fixes for the
parents and the courts, but can be disastrous for children with ASD. The many years of guidelines set down for children in the court systems are based solely upon
neurotypical children and not children with autism.
Our children’s best interests must become our own if they are going to have a
fighting chance. When a father’s interests are purely those of his son or
daughter, he too will want to come back and fight alongside with you.
The factors that contribute to a divorce in couples facing autism do not
necessarily include the diagnosis itself. It can be related to many other
things, including the lack of resources and support in the schools and community, the sense of worthlessness at helping
a child, the severity of the ASD (which increases without resources) and knowing that there’s more that can be done, but not knowing what that is.
If at all possible, dads need to return home. Their children need them more than
ever. A child’s progress and potential cannot be fully realized unless both
parents are tag-teaming TOGETHER in the battle. Single mothers most likely have sacrificed
everything they have and a father coming home will be like the cavalry showing up in the 23rd hour.
If a spouse never returns, they will be missing out on the many miracles that
occur on a daily basis involving children with autism.
Reconciliation may be a tall order, but children with autism need both their
mommies and daddies and sometimes we must be willing to live for something
greater than ourselves to ensure the best possible outcome.
Last year, Holly Robinson Peete appeared on the hit reality show, Celebrity
Apprentice, where she competed against 13 other contestants in hopes of
benefiting the charity founded by her and her husband. Peete eventually placed
second in the competition, losing to
Poison front man and "Rock of Love" star Bret Michaels.
As part of
their season finale challenge, Peete and Michaels were both assigned to create a new drink flavor
for Snapple, along with a corresponding ad campaign. Michaels, who has diabetes,
came up with the Trop-A-Rocka flavor, while Peete, who has a son with
autism, created Compassionberry Tea. Peete’s drink benefited
the HollyRod Foundation, a non-profit organization that assists those with autism and Parkinson’s
disease, while Michaels’ flavor supported the American Diabetes Association.
Public response to both drinks after the finale was overwhelmingly positive.
However, in a not-so-compassionate move, Snapple has apparently pulled the plug on
Peete’s drink, just one month before Autism Awareness Month.
Earlier last week, she tweeted the following:
"Disappointed 2 hear that @snapple is discontinuing my #compassionberry tea flavor which is not only yummy but spreading #autism awareness…"
There
were no further details as to why Snapple decided to discontinue Peete’s
Compassionberry flavor, however, in a subsequent tweet, she noted that despite
the move, Snapple
was still continuing to carry the competing tea created by Michaels:
"@Snapple is only discontinuing my #compassionberry supporting #autism happy they r keeping Bret’s tea 4 #diabetes but room 4 both"
Presumably, this was strictly a business decision by Snapple based on sales and/or demand.
However, nixing the drink so close to Autism Awareness Month, while at
the same time keeping Michaels’ flavor, is the kind of move that would be worthy of a hot-seat in Trump’s board room.
Admittedly, I have not tried the drink, however, there have been many who
have commented on its great taste. Compassionberry ingredients include passion
fruit and strawberries, along with traditional tea flavors.
For those who would like to see the Compassionberry Tea make a comeback, a note
can be sent to Snapple’s consumer affairs division here.
Those of you who’ve read my previous articles already know that I was on a quest to make my son’s high school a safe, viable place for him to be. He has Asperger’s, an anxiety
disorder and Crohn’s, so he is facing multiple challenges simultaneously.
Last month, I
posted an article about “Intricate Minds," a video designed to help teachers and classmates appreciate what it’s like to have Asperger’s. I thought
the video would be good for those who my son encounters at school to have a heads-up about his condition.
The thinking was this might cut down on the snickering when he’s having a bad
day or even help modify a teacher’s approach to him. Having shared this video with my son’s principal, she thanked me and said she’d look into it. I’ve heard nothing
since.
My son’s special education teacher is untrained in Asperger’s and has a habit of engaging in verbal
confrontations with him. There used to be a long running skit on Saturday Night Live about a guy who goes to a restaurant, orders a fruit
cocktail and an anvil comes down on the table, yet time and time again he still orders the fruit cocktail. The way my son’s teacher communicates with him is definitely a fruit
cocktail-anvil scenario.
Recently, my son became upset by having to do a math worksheet he had already done. Instead of shifting his attention or guiding him to a self-calming activity,
this teacher took him out into the hall to talk about it, which only flooded him with more
anxiety. Pained by the gaping strangers, he totally lost it, whereupon she chastised him for being rude to
his teacher. She then called to inform me that he has had yet another “behavioral
episode."
Thinking the CAT-kit might help her find a way to access my son’s emotions without inflaming him, I sent her a link about it.
Once again, no response.
Increasingly exasperated, I recommended that she read up on Dr. Tony Attwood and avail herself of my considerable expertise because the school was not accommodating my son and he was being set up to fail.
An IEP meeting that was set for six weeks ago out suddenly got moved up by five-and-a-half weeks. That meeting was
this past Tuesday and I can only describe it as an invitation to my own beheading. They invoked my son as being a behavior problem, since
this absolves them of all responsibility. I countered that he’s fine when he’s in the appropriate
environment but the principal told me that my son needs to develop coping skills to deal with his environment as it is. I’ve been in this
scenario one-too-many times, even being forced to take the district to court over their desire to put my son in a behavior program that would only turn him into a behavioral problem. I ultimately prevailed, but it took years of turmoil and instability.
I can’t count the number of IEP meetings I’ve been to for both my sons. They range from being gratifyingly productive to an
absolute horror show. This past meeting fell in the latter category. I ended up abruptly walking
out and now I’m poised to sign yet another “Intent to Homeschool” form.
It’s very disheartening that with all of the autism awareness out there, a school system
can be so backwards. Improving special education would take money but they are millions of dollars in the hole.
However, simple steps such as requiring special education teachers to attend educational conferences
on autism would not cost that much financially.
Undoubtedly, my story is not unique and these struggles are being played out
across the country. Despite a lot of progress in the area of autism acceptance
and awareness, my personal experiences are demonstrating that we still have a
long way to go, particularly in our school systems.
