In the closing days of Autism Awareness Month, the White House sponsored an Autism Awareness Conference. Senior Adviser to the President, Valerie Jarrett and Secretary of Health and Human Services Kathleen Sebelius,
spoke to an audience of parents, advocates and experts at an Autism Awareness Month Conference at the White House. The speakers touted the fact that because of Obama’s healthcare reform, children can stay on their parent’s insurance until age twenty-six, an advantage for young adults on the autism spectrum. They also committed themselves to the re-authorization of the Combatting Autism Act
(CAA), which is set to expire in September of 2011.
The original legislation was signed by President Bush back in 2006. With its emphasis being research, with some funding for outreach and awareness education, it established the Interagency Autism Coordinating Committee (IACC) to advise the Secretary of HHS on all matters relating to autism and develop and update an annual strategic plan for autism-related research.
Now, the old structures must be transformed into a new National Institute for Autism Research, with the grant making process streamlined to get the most value for today’s dollars. The CAA law provided for research relating to services and support but was not designed to actually fund them. Several bills have been introduced during recent sessions relating to these services, such as training, restraints and seclusion issues, wandering
disorder and infrastructure, but none of these has passed.
Comprehensive national legislation is urgently needed to fund these and other vital issues, particularly as Medicare is under attack and our children with autism will age out of the few resources there are.
And while insurance reform for autism has passed in over 20 states, there is strong popular support for “repeal and replacement,” so CAA 2011 must provide for parity of coverage with other medical conditions and ban all forms of insurance discrimination arising from an autism diagnosis.
Very recently, the “Safe Chemicals Act” was introduced by senators Frank Lautenberg, Barbara Boxer, Amy Klobuchar, Charles Schumer and others to upgrade America’s antiquated system for managing chemical safety. This is in response to increasingly forceful warnings from the scientific and medical
communities that common chemicals in household products are linked to diseases such as cancer, learning
disabilities and infertility.
From an autism standpoint, Lee Grossman, Autism Society President and CEO states that, “Thousands of unchecked toxins in the American marketplace are highly detrimental to the 1.5 million Americans living with autism today because many have immune deficiencies that, when exposed to certain substances, complicate already existing health issues.”
The Senate’s Safe Chemicals Act builds on momentum from 18 states that have already passed laws to address health hazards from chemicals and numerous corporate policies of major American companies restricting toxic chemicals, including Staples, SC Johnson, Wal-Mart and Kaiser Permanente. Those states are Wyoming, Nevada, Utah, Colorado, Arizona, New Mexico, Nebraska, Kansas, Oklahoma, Missouri, Arkansas, Louisiana, Alabama, West Virginia, Virginia, North
Carolina and Indiana.
The Safe Chemicals Act would overhaul the failing 35-year-old Toxic Substances Control Act (TSCA). Enacted in 1976, TSCA presumed that chemicals should be considered innocent until proven guilty, a sharp departure from the approach taken with pharmaceuticals and pesticides. Since then, that presumption has been proven faulty and dangerous, as numerous scientific studies have proven that many common chemicals can cause or exacerbate chronic diseases and can be toxic even at low doses.
Specifically, the new Safe Chemicals Act would:
• Require EPA to identify and restrict the “worst of the worst” chemicals, those that persist and build up in the food chain;
• Require basic health and safety information for all chemicals as a condition for entering or remaining on the market;
• Reduce the burden of toxic chemical exposures on people of color and low-income and indigenous communities;
• Upgrade scientific methods for testing and evaluating chemicals to reflect best practices called for by the National Academy of Sciences; and
• Generally provide EPA with the tools and resources it needs to identify and address chemicals posing health and environmental concerns.
If you want to “go green” in buying cleaners, be aware that specific claims such as chlorine-free, fragrance free, and phosphate-free are more meaningful than general claims such as “organic” and
“natural." Look for certification from credible third parties such as Cradle to Cradle, the EPA’s Design for the Environment Program, or Green Seal.
It’s about time this issue is addressed legislatively, but we don’t have to wait to act as individuals. Ridding toxic chemicals from our homes and yards is an empowering way to make our world safer for our children with autism.
The Journal of Pediatrics has just released the results of a study that
implemented a screening questionnaire for over 10,000 infants and reportedly was
able to identify early signs of autism and other developmental disorders in children as young
as 12-months old. The CSBS DP Infant-Toddler questionnaire, which takes only 5 minutes to complete,
asks parents a range of questions that help identify key risk factors. In the study, thirteen percent of the children who took the test fell into the abnormal range.
The 24-question test is said to be around 75% accurate, offering an
efficient and easy way for parents, doctors and caregivers to detect autism at
an early age. According to the CDC, most children with autism are not diagnosed
until the age of 5, so this test represents a significant advancement in early
screening methodologies. Originally developed in 2002, the test was not geared
specifically for autism, but since the test covers many of its core
characteristics, it is considered a new and effective way of identifying the
disorder in younger children.
Some of the questions include:
Does your child smile or laugh while looking at you?
Does your child point to objects?
Does your child use sounds or words to get attention or help?
When you call your child’s name, does he/she respond by looking or turning toward you?
While an abnormal test result will not necessarily indicate a definitive
autism diagnosis, it will help parents and doctors better monitor a child’s
progress and get a head-start on early intervention programs should a full-fledge autism
diagnosis eventually emerge.
This is very important because although there are many unknowns about autism,
the one thing therapists, researchers and doctors all agree on is that the
earlier the intervention and therapy, the better chance a child will have later in life.
In what may have been the best performance of the season from any American Idol
James Durbin performed "Will You Still Love Me Tomorrow," from Carole
King and once again stood head-and-shoulders above the rest of the competition.
Durbin clearly outshined the other 5 remaining Idol contestants, prompting Judge
Randy Jackson to proclaim, "This guy just might win the whole thing!”
Jackson then proceeded to go on stage and hug James in appreciation of his
Durbin, who has both Tourette’s and Asperger’s, has been a fan favorite since
the start of Season 10 for his diverse vocal range, as well as his rock and
metal "edge" that he has brought to the competition. With consistent
performances each week, Durbin has never been in the bottom 3 on any of the
Thursday result shows. He has significantly matured as a singer since his
initial audition and appears to be separating himself from the other contestants
in a major way.
We have covered James quite extensively on this site since his first appearance
on the show in early February. Much like Jason McElwain, Temple Grandin and
others, Durbin has been able to shatter many of the common stereotypes that
exist with those who have been diagnosed with autism spectrum disorders.
Regardless of where he places in the competition, Durbin is going to have a very
successful music career and as a result, will have a tremendous platform to
represent those with autism and other special needs. And based on Wednesday’s
performance, James appears to be on his way to winning the entire competition.
After six years of effort, a Tufts University team of scientists, doctors and researchers led by Abraham Sonenshein and Saul Tzipori,
have created a
needleless vaccine that does not require refrigeration. This represents a huge advancement as most vaccines require refrigeration, making their transport complicated, expensive and nearly impossible to deliver to remote parts of the world.
This breakthrough is no small feat. Scientists had to enclose parts of the bacteria, allowing the vaccine to still be viable after extreme conditions.
In order to test the vaccine’s resistance to temperatures, researchers submerged the substance in
80 degree Fahrenheit water for 17 months. At the end of that time period, the vaccine was found to still be viable. Development of a vaccine using a rotavirus produced an equally promising outcome.
The other objective of the team was to devise a needleless delivery system in order to counter
children’s aversion to injections and avoid the high cost of sterilizing needles. Creating oral vaccines was unsuccessful, but nasal drops worked and drops under the tongue were also successful. This is advantageous because putting drugs under the tongue allows them to be absorbed into the body very quickly.
While these experiments were conducted on mice and pigs, the team is currently seeking sponsorships to create doses of the vaccines for human use. When that happens, third-world countries could be immunized more easily and inexpensively and the chemicals and preservatives found in vaccines administered by needles would
potentially be totally eliminated.
This may represent a profound turning point in the contentious vaccine debate since substances
added to vaccines are the primary source of worry for many parents. In concert with The Thoughtful House’s investigation into the synergistic influence of multiple vaccines on young immune systems, this could chart a path towards that missing middle ground between the pro- and anti-vaccine
camps, particularly within the autism community.
While many people think that parents wary of vaccinations just don’t like having their children get stuck with needles, I don’t think this is true. Of course, drops under the tongue would make vaccines less traumatic for children and thus easier on their parents, but the method of delivery has never taken precedence over what is actually being delivered.
It’s heartening to learn of these advances in the field of vaccines that could ultimately render happier and healthier children worldwide.
Asperger’s Syndrome (or Asperger Syndrome or AS) is a form of high functioning autism, characterized by obsessive interests and a difficulty in making friends. While commonly characterized as a “mild” form of autism, it is devastating in its own right.
Starting in the 1960s, scientists theorized that boys inherited only one male X chromosome from their mothers, but girls inherited two (one from each parent). Thus, girls do not develop AS because the extra X chromosome from their fathers somehow “protects” them from it. This premise was never successfully proven.
Today, experts are realizing that the frequency of AS in girls is much higher than previously believed. The male-to-female ratio of Asperger’s is thought to be 3-to-1, but Dr. Tony Attwood, the world’s foremost authority on Asperger’s Syndrome, maintains that there is actually much more parity between the sexes in incidence.
"Aspie" boys often appear like “little professors” who are experts in one subject, but Aspie girls are more like “little philosophers.” They often appear odd or aloof or seem to live in fantasy worlds. Typically in elementary school, they cling to a single best friend and the loss of that friend is very traumatic.
All Aspie children have problems navigating the social world. However, when boys get frustrated, they tend to act out in aggressive ways that garner adult attention. Aspie girls tend to internalize their suffering, appearing shy and passive.
Aspie girls have a facility to camouflage their social confusion and successfully mimic social behaviors. Since they do not understand how to process and express emotions in a normal way, their faces often develop a “mask-like” quality. With a permanent smile on their faces, they constantly attempt to please others.
Tragically, these “good girls” rarely get the help they need and this results in low self-esteem, depression (often clinical), vulnerability to relationship predators or living in abusive relationships, excessive weight loss or gain or selective mutism, among other things.
Girls can be identified as having Asperger’s Syndrome through their special interests and unique behaviors. The diagnosis is a point of liberation for them to understand why they experience the world as they do and discover they are not alone.
I have to admit, this description of Asperger’s in girls rang like bell in my own life, right down to my best friend moving in fourth grade being as traumatic as a death. Having high functioning sons, I see a lot of myself in them and it inspired me to take the
autism test for adults featured on our website. I scored a “35," the typical score for someone with Asperger’s.
While it’s too late to undo all the hardships I bore as an undiagnosed girl with Asperger’s, it does bring me new clarity and peace of mind in looking back on my life. Hopefully, with new information, more girls will receive the help they need and avoid the perils of camouflaging their pain all too well.
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.
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Autism strikes a family’s heart, soul and wallet. Estimates by The Autism Society puts a lifetime of care for an autistic child at $3.2 million. Autism parents know firsthand the brutal toll to the family coffers of therapies that can run $40,000 to $50,00 per year. Families tangle with insurance companies, invariably ending up with […]