Earlier today, the Elizabeth Birt Center for Autism Law and Advocacy (EBCALA) held a press conference on the steps of the US Court of Federal Claims and presented the findings of an investigation of the “Vaccine Court” settlements paid out to families that had experienced vaccine injuries.
The peer-reviewed study looked at cases of vaccine-injured families that have been monetarily compensated by the federal Vaccine Injury Compensation Program (VICP). It was published today in the Pace Environmental Law Review and investigated cases that were ruled in favor of the plaintiffs dealing specifically with childhood brain injuries as a result of vaccinations that also made reference to autism, its symptoms or other disorders associated with it.
What they found was that 21 cases specifically referenced autism or “autism-like symptoms” in court records. The researchers identified and contacted another 150 more compensated families and found that 62 of those cases also had autism, resulting in 83 cases in total.
Keeping an open mind with a lack of bias, this raises several questions. I would like to address some key points and present them as though this was the first time someone has heard of the autism-vaccine controversy altogether.
Is a settlement really proof of anything?
By its very definition, a settlement, whether in or out of court, is just that.
Both parties settle with each other and no finding is made, no one is a winner and there is
typically no definitive proof or admission wrongdoing. As such, whether you have
a settlement case for or against a family, nothing is actually proved or disproved. It simply indicates that an agreement was reached.
What is the difference between “has autism," “causes
autism," and “autism-like symptoms?"
In the study, as well as the resulting media coverage, there needs to be a distinction between whether or not the vaccines specifically caused autism in the plaintiff families or if it caused something else similar to autism or if the child had autism regardless of the vaccines.
Nowhere in the study or in any of the court settlements does it state that autism was caused by
vaccinations. It does however, state that some children developed “autism-like
symptoms," which could or could not specifically be autism itself.
Additionally, the study started with 1,300 cases and found 83 confirmed cases diagnosed with autism. That certainly puts it higher than the current 1 in 110 CDC estimates but it’s still a small enough percentage of the total group. The question then becomes, if autism is genetic and 1 in 110
develops it, wouldn’t an identical percentage of the vaccine-injured children also have autism?
The actual purpose of the press conference
What I fear will happen with a lot of the media, which is happening already, is that this press conference will be used as “proof” of an autism-vaccine link, sparking further “anti-vaccine” sentiment among parents who fear for their children’s health.
As I watched things unfold on Ustream, I also paid attention to the chat room and its messages.
In the press conference, parents gave heart-wrenching testimonies and explained
their situation, but also clearly indicated that they were pro-safety advocates. Each one of them said, and I quote, “I want to make it clear that I’m not anti-vaccine.”
However, that sentiment did not translate into the chat room as many visitors would shout (via all caps) “I’M
ANTI-VACCINE!," and even some repeatedly claiming that “vaccines don’t work!”
The message is not the same and further clouds the debate.
Dr. Andrew Wakefield himself has been quoted as saying, "I’ve not said,
‘Don’t get vaccinated.’ I strongly advocate for the use of single vaccines.”
It is very important for people to realize that even though the safety of vaccines
has been put into question, it is not advised that parents stop vaccinating
their children altogether.
And contrary to what has been reported by some, today’s press conference was not
"proof" of a link between autism and vaccines, nor was it intended to make anyone stop vaccinating their children.
It was a passionate call to Congress and vaccine manufacturers to do proper research and make vaccines safer, as well as have the government provide better services and compensation for families that
have suffered vaccine-related injuries.
Lately, there’s been much conflicting news about autism rates. A recent study from Britain contends that there is no epidemic, there’s just a great many undiagnosed adults walking around. Yet after conducting a study in South Korea, The American Journal of Psychiatry subsequently found 1 out of 38 kids to have autism,
much higher than the recent estimate of 1 in 110 children by the Centers of Disease Control and Prevention (CDC).
Whether Asperger’s Syndrome is a distinct disorder or a kind of autism is a question currently under debate by psychiatrists. While children with Asperger’s Syndrome do not experience significant delays in language and cognitive ability, many researchers believe that the new Diagnostic and Statistical
Manual (DSM), which is due to be released in 2013, should have had Asperger’s as a form of
autism in previous editions. While most people already conceptualize Asperger’s as an “autism spectrum disorder,” some factions are opposed to change.
So what difference would it make?
When Asperger’s is folded into autism statistics, the crisis will be seen as that much more
urgent and require more action and more dollars. Including Asperger’s will lead to better identification of children who need developmental services and will force insurers and state governments to pay for its treatment. One can usually follow the money to discover the motives for
having been against such a sensible
While Asperger’s Syndrome is often characterized as a “mild” form of autism, that seems too dismissive of its impact. Students with Asperger’s are mainstreamed in schools that more-often-than-not are unprepared to meet their needs. Thrown together with the neurotypical population, they still exist apart, experiencing social isolation along with teachers prone to punishing their symptoms.
In the UK study, the adult males who were discovered to unknowingly have Asperger’s were found living predominantly in public housing.
Undiagnosed girls with Asperger’s often suffer from clinical depression and other serious maladies such as eating disorders.
Herein lies the danger of Asperger’s – untreated individuals are often unable to fulfill their personal potential and live happy, productive lives, despite their high intelligence and keen special interests.
As a result, they are susceptible to experiencing a special kind of emotional torment and we need to do everything in our power to help
UPDATE: May 12, 2011 — Previously in this article, I had stated that Asperger’s was not included in the CDC numbers, and I stand corrected.
In point of fact, Asperger’s Syndrome was included as an autism spectrum disorder in February of
2010 in the draft of the new Diagnostic and Statistical Manual (DSM) due to be released in two years.
The CDC figures are gathered by known cases of autism. Apparently, the fact that the South Korean data included undiagnosed children with Asperger’s Syndrome accounts for the huge differential in the statistics.
Scientists in the United States have nothing but praise for the South Korean study and consider it applicable to our nation and the urgency and tragedy of children with Asperger’s not receiving the help they need remains unchanged.
In what is sure to open up a new front in the autism-vaccine wars, the Elizabeth Birt Center for Autism Law and Advocacy (EBCALA) has announced a major press conference on the steps of the U.S. Court of Federal Claims tomorrow, apparently to unveil results of an investigation linking vaccine injuries to autism. EBCALA claims that the information will "break new ground in the controversial autism-vaccine debate."
According to the group’s press release, the investigation found that there
was a "substantial" number of children who have been compensated for vaccine injury who also had autism, contradicting previous claims and reports by the United States government.
Tomorrow (May 10, 2011) at 12 Noon EDT, investigators and families of vaccine-injured children plan to unveil the findings based on the government’s own data.
There is some major buzz being created about this press conference, but it remains to be seen if it will have any merit or if the mainstream media will even pick this event up. And there are already individuals and groups
discounting the announcement, presumably as a preemptive measure. Regardless of what is disclosed, it is safe to assume that the autism-vaccine debate is once again going to get really ugly in the coming weeks.
Additionally, vaccine safety groups are still recovering from the Andrew
Wakefield controversy earlier this year, so it will be interesting to see if
tomorrow’s announcement will have any lasting impact.
I don’t know one person who likes going to the dentist. But the challenges facing a child with autism in the dental chair are multiplied exponentially. Truly, it is a sensory nightmare. My sons go to a busy university clinic with chair after chair in a large, open room, so there’s no privacy and a cacophony of noise.
Before taking them there for the first time, I talked at great length about their needs with the staff, then sat anxiously in the waiting room. Ten minutes later, I heard my son’s familiar blood curdling scream and a doctor shouting, “Sometimes we have to do things we don’t like!” Soon, my son came careening into the waiting room trying to find me with the doctor hot on his heels. Great.
Restraint was out of the question because it would’ve made my son hysterical, so I asked for nitrous oxide during the exam, a private room, headphones playing his favorite music and the same favorite dentist from one visit to the next. All went well from then on, as long as this protocol was followed to the letter.
In retrospect, it would’ve been good if I’d known about social stories or had some other way to prepare them for their first visit. It’s not like I didn’t talk to them at great length, but I’d always forget some element, such as the texture of the toothpaste, the stiff apron — and they really didn’t have a picture of what to expect.
Now, there’s a series of three books that address these kind of experiences. Inspired by her son, author Avril Webster has created the
“Off We Go!” series to help special needs children ages four-to-eight prepare for outings to the grocery store, hair salon and dentist. The books provide a walk-through of what a child can expect and a point of departure for parents to talk about what an impending trip bodes.
I’m a great believer in useful products like seamless socks, noise reducing headphones, chew toys and story books to make foreign environments less ominous, just to name a few. Anything that helps ease our children’s path through their day gets my vote. Small things make a big difference.
In what seems to be an emerging trend in reality TV competitions, another
potential star with autism has been born from the fifth installment of Britain’s
Got Talent. Eleven-year-old James Hobley appeared last night from Manchester,
England and blew judges away with a dance routine that would have made Mikhail Baryshnikov
Hobley, who admitted to being homeschooled and having autism, received rave
reviews from judges Amanda Holden, David Hasselhoff and Michael McIntyre, all of
whom gave him the thumbs up and advanced him to the next round.
It was just a few years ago that James could barely walk, let alone dance. He
was fitted with special orthopedic boots and splints because of excessive tiptoe
walking (a common symptom of children with autism). However, Hobley overcame his
physical challenges and attributed his dancing to making that happen. He was
even quoted as saying, "When I started dancing, my tendons just got looser and looser until I never had to wear
[the braces] any more."
Appearing in a taped portion of Britain’s Got Talent, Hobley wowed the
audience and judges, once again proving that there is no limitation to what
those with autism can accomplish.
Britain’s Got Talent, which has produced stars such as Susan Boyle and Paul
Potts, is currently in progress and while James may not win the entire
competition, he has certainly come farther than anyone could have imagined just
a few short years ago.
I just read a recent article by a psychiatrist proclaiming that a family with an autistic member needs to “reassess its priorities” and consider professional help in organizing their lives.
She went on to emphasize the importance of parents and caregivers taking time
out for themselves and spending time alone with their partners and other children in the family.
Free associating, I came across a 2009 article in Disability Scoop
report showing mothers of adolescents and adults with autism experience chronic stress comparable to
that of combat soldiers. Levels of a specific hormone connected to stress were found to be very
low — as low as those of active duty military. Over time, this hormonal condition may manifest in immune disorders and other serious illnesses.
In a companion study, the researchers followed up with the same group of mothers to assess their daily lives. These mothers spent at least two hours more each day as a caregiver than mothers of children without disabilities and were twice as likely to be tired and three times as likely to have experienced a stressful event. Additionally, autism moms with outside jobs were interrupted at work one out of every four days compared to less than one out of ten days for other moms.
Yet in a true testament to the dedication of autism mothers, these individuals were just as likely to have positive experiences each day and volunteer in their communities as those whose children were neurotypical.
As for myself, my life is in a constant stage of triage as I prioritize all the important things that need to be done. If I brought in a professional to help me get organized, I know exactly what he or she would say, only I’d have to pay to hear it said. And while the idea of taking time out for myself is a great thought, the reality is that I steal my time alone by staying up too late after my sons are asleep or getting up before they do in the morning.
In evaluating the best cities for autism in Autism Speaks’ recent
list, lack of respite care was the single biggest complaint from parents across the nation. I would love to see a chunk of money from all the walks, runs, banquets and spaghetti dinners during Autism Awareness Month applied to this pressing need. Then all of this great advice about taking time out to replenish ourselves and our other important relationships would feel
doable instead of like grapes hung just out of Tantalus’ reach.
As we all know, Sunday is Mother’s Day. Hats off to all of us as we soldier on.
Leading up to April’s Autism Awareness Month, much media attention was
given to an incredible young man by the name of Jacob Barnett, a 13-year-old
with Asperger’s Syndrome who has a tested IQ of 170 (higher than Einstein’s).
Deemed a child prodigy, Barnett was attending Indiana University-Purdue University Indianapolis
(IUPUI) and taking advanced astrophysics classes as early as 8-years-old.
Jacob made headlines due to a new project where he plans to expand on Einstein’s theory of
according to The Indianapolis Star, he has also set out to disprove the Big
The stunning revelations have raised a lot of eyebrows, but have not been
discounted. A world-renown astrophysics professor has confirmed the authenticity of
Jacob’s expanded theory of relativity and says that he will be in line for a Nobel
Prize if able to solve.
And asked in an interview about how the earth would have been formed if not for the
Big Bang, Barnett said he "was working on that," creating a lot of
buzz within the creationism community.
Pretty amazing for a child who didn’t speak until he was 2. In fact, his mom
Kristine was quoted as saying, "When he was two, my fear was that he would never be in our world at
all." She was also told by doctors to prepare for many challenges over his lifetime due to
limited communication skills.
The heartening story and background of Jacob Barnett is yet another example of a long list
of individuals on the autism spectrum who have greatly contributed to our
society. Some of these people with autism (both confirmed and suspected) include Daryl Hannah, James Durbin, Alexander Graham Bell, Jason
McElwain, Daniel Tammet, Albert Einstein, Stephen Wiltshire, Tim Burton, Temple Grandin, John Quincy Adams, Ludwig
van Beethoven, Isaac Newton, Wolfgang Amadeus Mozart, Bill Gates, Charles Dickinson, Jane Austen,
Emily Dickinson, Thomas Edison, Henry Ford, Friedrich Nietzsche, Nikola Tesla, Henry Thoreau, John Denver, Jim Henson, Alfred Hitchcock, Howard Hughes, Andy Kaufman, Charles Schulz, Andy Warhol, Bobby Fischer and Leonardo da Vinci — just to name a
In what could be one of the most emotional performances in recent memory on
American Idol, James Durbin performed "Without You, a powerful ballad by
Harry Nilsson from the 1970′s. It was the second performance of the night for
Durbin, who also sang "Closer to the Edge," a song that he used
to open the show. Durbin’s second performance, however, is what American Idol
fans will undoubtedly be talking about at the water cooler tomorrow morning.
Durbin became emotional and nearly broke down, both during and after his
performance. He was also emotional during rehearsals and noted that the song
reminded him of his wife, Heidi and young son, Hunter. Additionally, after his
performance, Durbin pointed to the sky, presumably acknowledging his father who
died when he was only nine-years-old.
From a technical standpoint, it was one of Durbin’s weakest performances of
the season. However, his raw emotion and emotionally moving performance didn’t
leave many dry eyes in the audience.
On Twitter and in message forums, people are already commenting how James needs
to do a better job of keeping his emotions in check. What many may not realize,
however, is that James has been diagnosed with Asperger’s Syndrome and a
characteristic of the disorder for some (not all) is the tendency to become
overly-emotional in certain situations. Coupled with the many months away from
his family and his long journey to get where he’s at, it’s understandable why
James was so moved this evening.
While it wasn’t his best performance, James Durbin once again proved that he
is a well-rounded artist who has much to offer and should be performing in the
American Idol finals later this month.
Individuals with autism have innate visual prowess, as I discussed in a previous
article. Given that children with autism are so visually oriented, it makes perfect sense to engage them in art activities, be it formally with an art
therapist, casually in other classes or at home.
Because children on the autism spectrum struggle with communication, traditional psychotherapy is not a viable option for them, but art therapy is. Art therapists report that children with autism who engage in one-on-one sessions show an improved ability to imagine and think symbolically, enhanced ability to recognize and respond to facial expressions, new ability to manage sensory issues such as a range of
texture and greater fine motor skills.
I used to teach art to preschoolers at community centers. The classes were educational in nature and centered around a theme such as dinosaurs. I had them make things to illustrate what they were learning, like paper mache giant eggs and clay replicas of foot-long pointed teeth. The comment I heard from
most parents was that they couldn’t believe their child’s focus and intensity while in my class. They
marveled that their child was capable of such intentionality and that they could sustain it for a whole hour.
Several of the students came with diagnoses such as ADD or autism, another had been too frenetic and kicked out ballet class, but you wouldn’t know it
– all of them coalesced as a group of dedicated youngsters excited by their art projects. The group became close and the children often went to the playground together after class.
Art demands a level of organization. Children must set up their supplies and clean up afterwards. The many textures are a sensory feast, and for kids with autism, innately therapeutic. I fondly remember how much my sons loved making homemade clay, the feeling of kneading the warm dough, then folding in the colors. I kept easels set up on the porch and they painted nearly everyday. Doing art fostered pride in themselves and their creations.
As individuals who struggle with communication, art gives children on the autism spectrum a powerful means to channel their inner life and experience. At home, you could have your child make his
or her own guide to feelings by having them draw pictures of “Happy,"
“Sad," “Scared," “Mad" or “Frustrated” faces. Laminate or otherwise protect the pictures and have them on hand for your child to identify how he or she is feeling when words cannot. Buy them a sketch book and encourage them to keep a daily art journal. Creative self expression in all its myriad forms is going to be a key to enhancing your child’s well-being.
“Drawing Autism” is a collection of artwork by individuals with autism coupled with interviews of the artists, with a forward by Temple Grandin. It’s a powerful book and in reading it one comes away with an even deeper appreciation of that superior autistic visual ability we’ve been hearing
about. More information on the book can be found here: http://markbattypublisher.com/books/drawing-autism/
Additionally, an organization that focuses exclusively on art therapy for
autism is Philadelphia-based HeARTS for Autism. They are a grass-roots,
volunteer organization and can be found at http://www.heartsforautism.org
The ancient art of yoga is proving to have great benefits for children on the autism spectrum. Yoga comprehensively addresses their heightened anxiety, poor motor coordination and weak self-regulation, something that otherwise is very difficult to do.
Yoga is particularly instrumental in helping kids with autism learn self-regulation. By becoming aware of their bodies and aware of their breathing, yoga provides them with the ability to cope when they start to feel anxious or upset.
Many yoga for autism classes teach yoga poses or breathing techniques specifically intended to help children contend with their escalating emotions. Since these children are visually oriented, savvy instructors add a visual element so that the child has a colored picture of each pose near his or her mat. Parents are also given pictures of the poses so that they can do them at home with their child.
Often, classes incorporate other experiences known to benefit a child on the autism spectrum, such as massage, music, dance, rhymes and stories. Music engages the brain and promotes communication. Massage aids in relaxation and facilitates the giving and receiving of affection. Being able to dance about in contrast to the stationary poses of yoga and the addition of the language element of rhymes and stories complete what amounts to amazing and fun intervention.
Some schools go so far as to offer their students with autism yoga in the classroom, which is very smart on their part and helps create a successful classroom experience for autism spectrum students. My son had a teacher in middle school who let him lead the class in yoga and it bolstered his self-esteem and helped him go the last half of the school year with nary a meltdown.
Early on, I realized that managing my sons’ autism was energetic rather than disciplinary. Good teachers know this as well. Parents find that the quality of their child’s life improves through practicing yoga, that they become more communicative,
calmer and sleep through the night. Teachers greet children who demonstrate more focus and less volatility and the child experiences the pride and self confidence that comes with gaining new skills.
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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 […]