Leading up to this year’s Autism Awareness Month, I began with real hope in my heart. I knew that
a trailer would be released on April 1st for a new documentary film entitled
"The United States of Autism" ( http://usofautism.com
) that my family and I were featured in and we were also celebrating World Autism
Awareness Day again on April 2nd. I truly thought this was a year of action and
even took it upon myself to personally call 250 social service and corporate
entities to find out if any of them had plans for the month. My hope quickly
turned to disappointment.
Of those 250 organizations, not one had plans to do anything for the public,
their employees or those dealing with autism. No education, activities or action
plans were in place. In fairness, the feedback was a little skewed because I
omitted a few companies that have been visible supporters of Autism Speaks for a few
years ( Toys R US and Lindt Chocolate, to name a few). Additionally, The White House had refused to join
in on the light it up blue campaign and we were able to bring attention to the administration’s lack of follow through on promises to appoint an Autism Czar this term.
One bright spot this year was the daily messaging and replication of news on
social media sites. Countless tweets have been sent this month on the topic of autism
awareness and action by myself and others, but I wish more would get involved. The world is watching.
A mother has taken it upon herself to personally tweet every celebrity, asking them to retweet
basic statistics and facts about autism. In about a two week period, about 25
have responded. However, a retweet alone is not enough and more celebrities need
to do more by stepping up and getting involved.
I have to commend Autism Speaks for turning up the spotlight on a few television
shows. I also admire the series Holly Robinson Peete has done for The Talk CBS,
as well as Robert MacNeil for coming out of retirement to bring attention to his
grandson and family. Overall though, the voices of parents and those in need are
still not loud enough and awareness without movement to action only highlights the negligence on our part.
In an ideal world, the walls between the "have" and "have-nots"
get knocked down. The unfortunate reality is that there are dramatic differences in
availability of services for families based on higher incomes and demographics. I think this is socially,
morally and legally wrong. This must change. We have seen enough buildings lit up blue, walks, runs, safety fairs,
statistics and stock market bell ringings. It’s now time that we cross the
street and ask our neighbors what they need.
Recently, I heard and tweeted the following quote: “One person cannot help everyone, but everyone can help one.”
I initially heard this on a local Christian radio station broadcast in the
Chicago area while introducing a missions trip to help desperate children in Peru this
summer. Juxtaposed against the backdrop of Autism Awareness Month, I was frustrated that very little had been said about
Many times, autism is so complex and so overwhelming, it paralyzes people to the
point of inaction. It is our job to simplify it so people respond.
A good Samaritan recently mowed my yard and others have helped with buying and cooking
my son Tanner’s special GFCF diet food. Simple moves and acts of kindness such as
these could save a life. Respite is only a dream for many families. There is
much more need than there are those willing to help.
This year, do your best to get involved and turn the awareness of April into action all
Lately, much attention has been given to the problems of autism wandering and the risky interaction between autistic individuals and the police. A less discussed and equally important issue that combines elements of the other two is fire safety for children on the autism spectrum.
Children with autism (CWA) are at a higher risk in a situation involving a fire because of their propensity to retreat to a favorite hiding place when feeling threatened. Their fear of an approaching firefighter due to their mask and equipment can also cause them to
flee from help. Even those who have successfully escaped a burning building have died re-entering
attempting to find a prized possession. Once outside, their risk of flight is elevated by the shock of the scenario and the sensory overload of emergency vehicles, lights,
radios and police.
It’s essential to develop a plan of escape for your home and go over it with your children. This includes picking a gathering spot outside the home.
Be sure that a smoke detector is placed in or near the CWA’s room, as well as on all levels of the home. Test those smoke detectors frequently to make sure they are in working order.
Teach your child the basic fire safety tips like stop, drop and roll and touching a door before opening.
It is imperative that one family member be specifically assigned the responsibility to get that person with ASD out of the home and to a place of safety.
It is critically important that this person also stays with their loved one to ensure that they do not re enter the home to retrieve a favorite object or attempt to flee the situation.
If your loved one is non-verbal, prepare a laminated card containing basic information about your child (including any allergies to medication) in case of a medical emergency.
Be proactive by providing your local fire department with as much information as possible about your loved one. This includes advising them of the location of the loved one’s room and other places they may flee in an emergency situation.
Visit the firehouse on multiple occasions, so that your loved one can see a fire-fighter with all of their protective and fire-fighting gear, including the oxygen masks, axes and hoses, so that they can grow accustomed to them. Also, acquaint them with medical equipment, such as stethoscopes, blood pressure cuffs, oxygen masks and stretchers, so that they might be prepared in the event of a medical emergency.
When my sons were preschoolers, they became fascinated by a picture book about firefighters. This proved
to be a great springboard to visiting the local firehouse, where they received a grand tour and got to sit in the fire truck. They went home with coloring books and badges and we played “stop, drop and roll," interspersed with “stay low and go” games on the
lawn (stay low and go involves crawling to prevent smoke inhalation). Making a game of it reinforced the ideas without
creating anxiety about being in an actual fire. I felt reassured that my sons were comfortable with firefighters and basic safety and we were as ready as we would ever be.
I was reminded of these times as just this month, a heartbreaking incident occurred in Arizona involving a 12-year-old boy
with autism who died in a fire at his family’s mobile home after he became confused and ran back into the house. He has been described as a hero for initially notifying his
family of the fire when it first broke out. Details of the tragic story are
included in the video below.
A house fire is the last thing anyone ever expects, but being prepared as a family and taking extra precautions will go a long way in staying safe if such an incident should occur.
Week after week, American Idol contestants are challenged by judges Randy
Jackson, Jennifer Lopez and Steven Tyler to step it up and take chances. James
Durbin did just that this week, with a cover of Muse’s
"Uprising." Along with an accompanying marching band of drummers, Durbin
executed what was arguably the best performance of the night.
After the song, the judges heaped praise on James for his originality and
predicted he would be the strongest performance of the night, despite the fact
that he was the only the second singer to perform.
Tomorrow, Durbin will learn whether or not he will advance to the American Idol
top 6. If so, he will be even closer to competing in the Idol finale, which takes
place in late May. However, the competition this year is extremely fierce and it
will take the support of all of his fans and supporters as well as new ones if
he is eventually to be crowned the next American Idol.
Durbin, who has been diagnosed with both Tourette’s and Asperger’s Syndrome (a
high functioning form of autism), has been a frontrunner since the season began.
His vocal range, along with dynamic performances have won over fans week after
week. Additionally, when his backstory emerged, he garnered much support from the autism,
Tourette’s and special needs communities. His die-hard fans are affectionately
known as "Durbinators."
I have said for many years that contradictory studies or even the studies that are simply false, will always have supporters as long as the results are what those people want to hear.
This is never more evident than when doctors behind those studies are found guilty or accused of doing something wrong and people continue to support them, even to the point of fabricating conspiracy theories to justify their actions.
I bring this up now as new cases have hit the newswires surrounding two prominent doctors
well known within the autism community.
Denmark scientist Poul Thorsen has just been indicted for fraud for allegedly embezzling a $1 million grant for autism research from the Centers for Disease Control (CDC).
Thorsen was one of the doctors involved in a
well known study in Denmark that compared autism rates in children across the entire country vaccinated with the MMR vaccine versus those that did not receive the MMR.
His results showed that there was no link between the vaccine and autism.
Another well-known doctor that has recently come under attack is Dr. Paul Offit, the
co-founder of the rotavirus vaccine. Offit has been very outspoken in recent years
in defending the safety of vaccines, as well as the current vaccination schedule.
Just this week, Offit was accused
by the OC Register of making unsubstantiated and/or false statements in
connection with a 2008 story when responding to a CBS News report from that same
The reason I bring up these two stories is because they have heavily reverberated
throughout the anti- and pro-vaccine communities, causing a lot of suspicion and outrage.
If the allegations in these cases are in fact true, what else are these doctors capable of? Does this
also cast doubt on their studies’ findings or other past claims as well?
Perhaps your conclusions about these stories greatly depend on what you thought of these doctors and their conclusions in the first place. If you didn’t believe them before, then these stories will only further solidify your skepticism and doubt.
Dr. Andrew Wakefield, another doctor involved in a recent controversy, was
accused of acting fraudulently and was allegedly
paid $800,000 by personal injury lawyers to produce certain results in a
1998 study. Wakefield’s conduct ultimately resulted in a retraction of his
findings in the Lancet medical journal and the loss of his medical license.
However, none of his purported actions swayed his supporters in the slightest
and there are now murmurings on the Internet about how Wakefield was in a position to alter information, whereas Thorsen
wasn’t. Others claim that Offit is in the pocket of pharmaceutical companies and that Wakefield is their
target — the stories and conspiracy theories go on and on.
The point is that these stories simply prove one thing: doctors are fallible and therefore
can often be just as unreliable as the average person.
Unfortunately, however, parents and those living with autism are the ones who
ultimately suffer from all of this confusion and are left trying to make sense of
the contradictory information.
What you’ll often find is that the average person is most likely to listen to the results they already believed to be true in the first place. They believed it to the point where they felt they knew it as though it were fact. A study or a doctor saying it simply confirms it. And once that confirmation is in place, those people will protect
their convictions, even against overwhelming evidence to the contrary.
Which studies are we supposed to believe then? The one with doctor A that allegedly
steals? The one with doctor B that allegedly lies? Or the one with doctor C that
allegedly makes it all up?
I don’t have the answers and I won’t believe anyone who says they do. Because I have to remember that what I want to hear is coming from a fallible person that is susceptible to the same mistakes,
temptations, errors and faults as everybody else.
In what has seemingly become a regular occurrence, another child has tragically
died in a wandering and drowning-related incident, this time near Tulsa,
Four-year-old Blake Murrell, who had autism and was non-verbal, was found
deceased in a duck pond yesterday afternoon just a short distance from his home.
Murrell was reported missing at around 11:30 a.m. by his mother and was found
and recovered about 4 hours later.
recently reported, autism wandering deaths have become so prevalent in
recent years, some of the largest autism organizations in the country have
teamed up to form AWAARE, a group that focuses on preventing wandering incidents
and wandering-related deaths through education, resources and awareness.
Children with autism are prone to wandering and are often attracted to water due
to its texture. A child with autism can disappear out of sight in a matter of
seconds, so it’s very important that parents, caregivers and educators be extremely vigilant on this issue.
When a child has autism, most of the family’s energy and resources go towards that child. Siblings carry their own special burdens as they experience all the hardships and stress attendant with autism, yet may feel they get less of their parents’ attention. More is expected of them than their sibling and they can experience this to be elementally unfair. They are party to people’s hostile reactions when their
brother or sister causes a scene in public and may resent the negative attention and
even feel embarrassed or pained.
Often, the neurotypical child is the person in the family better able to calm their sibling who is melting
down or help them navigate their world. Although both my twins are on the autism spectrum, one has less severe problems than the other and I habitually looked to him for help with his brother. From a very tender age, it was obvious that the twin connection superseded the parent connection. I considered it a
blessing and tried very hard to keep both sons’ needs in balance, but truthfully, my more stable son was rendered a “little adult,” despite his own challenges. He was the eye of every storm and I looked to him often.
Parents should give their weight-bearing child the chance to express what it’s like for them to have a brother or sister with autism. These siblings often hide their concerns and become the overachiever or the “easy” child who harbors feelings of invisibility within the family. There is a danger that just like other caregivers who sacrifice too much, they may be giving up their childhood or missing opportunities to just be a kid. Making special one-to-one time expressly for your neurotypical child goes a long way towards letting them know that they are not losing out to the more needy brother or sister.
Siblings have a huge influence on children with autism. In fact, a groundbreaking study published in
the latest edition of the Journal of Child Psychology and Psychiatry suggests that the influence of siblings actually determines the social behavior of children with autism. Children with autism who have younger siblings demonstrate a significant advance between the ages of three-to-five years in “theory of mind,” or the ability to perceive that everyone has their own intentions, beliefs, desires and emotions. Normally, even the highest-functioning child does not score well in theory of mind before age thirteen, yet these very young children excelled.
Unsurprisingly, siblings of children with autism are often deeply compassionate and wise beyond their years.
This month as a part of Autism Awareness Month, there was a school sponsored event where siblings explained autism from their perspective to their classmates, serving as both ambassadors and
liaisons between the autistic and neurotypical worlds.
Clearly, siblings of children on the autism spectrum have a special role to play within the family and community.
As such, extra care needs to be taken to honor and support them. Towards that end, many organizations have started groups expressly for siblings of children with autism.
Facebook now has a page just for siblings-of-Autistic-Children: http://www.facebook.com/pages/Siblings-of-Autistic-Children/179729994860
In what appears to be an alarming and disturbing trend, another incident has
been reported involving sexual misconduct between a caregiver and a child with
autism. This time, a case has emerged from the Los Angeles area, where an
in-home caregiver has been arrested and charged with 11 felony counts of committing a lewd act upon a child and three felony counts of oral copulation of a person under 14.
Twenty-nine year old Jeremy Stockton, a caregiver to special needs children,
was taken into custody last week and is currently in jail on a $1.4 million
bond. Stockton is accused of committing the alleged crimes on a young boy with
autism from March 1, 2008 to March 26, 2011. He was arrested when the youngster
came forward with allegations of molestation.
There needs to be greater accountability in these types of incidents and
authorities need to identify how this type of behavior (if proven true) was able
to go on for such a long period of time and what type of background and
screening process was implemented by Wellspring, the local agency that employed
This is also a perfect example of the need for parents to be extra-vigilant about who
comes in contact with their children on a regular basis. Children with autism,
especially those who are non-verbal, are ideal targets for sexual predators
because of their inability to properly communicate or report incidents of abuse.
As such, parents need to be extremely sensitive to who they are entrusting their
Jeremy Stockton has pleaded not guilty and is due back on court on May 3 to
determine if there is enough evidence for him to stand trial. We will provide
updates on this case, as they emerge.
On April 6, 2011, U.S. Rep. George Miller (D-CA) introduced The Keeping All Students Safe Act, legislation designed to prevent
school children from being abused as a result of inappropriate uses of restraint and seclusion. Government investigations have found that these abusive practices are used disproportionately
against children with disabilities such as autism and most often at the hands of inadequately trained staff. The legislation first passed the House a year ago with bipartisan support, yet never became law.
Since the bill failed in March 2010, dozens of instances of maltreatment have been reported across the nation. Children have been tied up with duct tape, sat on by untrained
staff and locked in rooms for hours at a time – abuses tantamount to torture.
The Keeping All Students Safe Act would introduce minimum safety standards to prevent abusive restraint and seclusion in schools across the country. Similar protections already exist in medical and community based facilities, but like corporal punishment, public schools are the last bastion of unrestricted child abuse. After two years, states will be required to have their own policies in place to meet new minimum standards, which would apply to all schools and preschools receiving federal education support.
The Government Accountability Office (GAO) found that abusive restraint and seclusion were widespread in schools across the country. Typically inflicted by untrained personnel, these practices were largely used as a routine disciplinary tactic, rather than in response to an emergency.
Seclusion in this context means the act of involuntarily confining students in
areas by themselves. Restraint is a restriction of an individual’s freedom of movement. Restraint can and has become fatal when it blocks air to the lungs. Ropes, duct tape, chairs with straps and bungee cords
have been used to retrain or isolate young children in some of the cases examined.
Only twenty-three states have meaningful restraint and seclusion laws or regulations. Currently, only thirteen states ban the use of restraints that impede breathing, only ten states ban mechanical restraint and ten states ban chemical restraints.
Specifically, the legislation would:
• Allow physical restraint or locked seclusion only when there is imminent danger of injury, and only when imposed by trained staff;
• Prohibit the use of any mechanical restraint, such as strapping children to chairs, misusing therapeutic equipment to punish students, or duct-taping parts of their bodies;
• Prohibit chemical restraint, meaning medications used to control behavior that are not administered consistent with a physician’s prescription;
• Prohibit any restraint that restricts breathing;
• Prohibit aversive behavioral interventions that compromise health and safety, such as denying students water, food, or clothing, denying access to toilet facilities, or using noxious stimuli such as pepper spray in order to control behavior;
• Prohibit schools from including restraint or seclusion as planned interventions in student’s education plans, including Individualized Education Programs (IEPs); and
• Require schools to notify parents after incidents when restraint or seclusion was used.
It’s remarkable that in 2011, this legislation is even necessary. The reality of just how barbaric our school systems actually are is utterly shocking. One of my own children suffered such abominations and it scarred him for life. It rendered him anti-authoritarian, a logical consequence, but one not conducive to attending school. It pains me because I know why he feels the way he does, yet I want him to be able to access education and have a range of choices about his future.
Attention to the issues of corporal punishment and isolation and restraint are long overdue in a country that considers itself a leader among civilized nations. As the number of cases of autism continue to explode, the heat is on to develop best practices for educating children on the spectrum.
A recent and growing trend that has provided many benefits for children on the
autism spectrum involves their engagement in karate and other martial arts.
A 2010 research project conducted by the University of Wisconsin physical therapy department confirmed what parents were already
reporting — in the course of learning martial arts, children with autism essentially came out of their
shells and grew more socially assertive and cooperative. They exhibited better balance and motor
coordination, eye contact improved and play skills were further developed. Greater self-esteem was also reported, with the added bonus of these kids
being able to defend themselves, if need be.
Karate and martial arts assist kids on the autism spectrum with the ability to concentrate and focus their attention in a consistent and highly structured environment.
Additionally, parents find that new skills carry over into home and at school. The
release of energy in a safe and ritualized environment can bring a child to a new sense of calm. Friendships are formed around a shared
activity and that sense of belonging can be the greatest reward of all.
If contemplating martial arts for your child, it’s always good to consult with his or her doctor prior to beginning any physical training. Observe the class before committing your child to it. It should be small and solely for children with autism, at least initially.
Higher functioning children may be able to integrate into regular classes
immediately. Confer with the instructor about your child’s needs and make sure you feel you can successfully partner with them.
Once your child is underway, have them practice at home in a no pressure
environment and offer encouragement and reinforcement for the moves they have
already learned. A demonstration for siblings or other relatives will also go a
long way in building confidence and self-esteem.
Martial arts offers therapeutic rewards and parents will enjoy the fact that their child
can participate in activities that other kids take for granted. And with summer
fast approaching, it just may be the perfect activity to consider.
Ohio is leading the way in educational opportunities for individuals with autism by sponsoring the
Ohio Autism Scholarship Program. Since 2003, the program has been providing up to $20,000 a year for families to seek an educational placement outside the public school system.
Funds can also be used to gain access to early intervention services and for individualized programs that may include several different essential therapies. Currently, more than 1,600 students avail themselves of the scholarship and the number of students who may apply is unlimited.
The Ohio General Assembly is discussing expanding the program to include all children with disabilities, not just autism.
As someone who had to fight my son’s school system for several years in order to obtain an out-of-district placement, this program is truly
inspiring. The time my son languished in limbo while our case crawled through the system was not worth it against the eight months at a private school the district ultimately agreed to pay for.
I also love that the scholarship includes early intervention and therapy.
No child with autism should be denied treatment because of his or her family’s lack of economic resources.
That has always been a vexing injustice.
While the public school system is mandated to provide an appropriate education to every student, the reality is that this just isn’t the case. Between that sad fact and the astronomical costs of therapies for autism, many children on the spectrum have been falling through the cracks.
I hope more states will take Ohio’s program as a blueprint for closing those gaps.
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Once again, our nation has been rocked by another young adult conducting a murderous rampage that ends multiple lives, including his own. My heart sank when the shooter in the latest tragedy, Elliot Roger, was identified as having Asperger’s Syndrome (AS). Barely past Sandy Hook with Adam Lanza, and now this. Even with some news […]