In watching the Elizabeth Birt Center for Autism Law and Advocacy (EBCALA) as it held its press conference on the steps of the US Court of Federal Claims a few days ago, I was struck by the common message of parents whose children were injured by vaccines which can be summed up with the phrase, “we are for vaccines, but make them safe."
The parents professed belief in the necessity of vaccines, even though they had been granted settlements in the “Vaccine Court” for the heart-wrenching outcomes of their children having received them.
There have been arguments made by some (including on our site) that the Vaccine Court "settlements" were not an admission of wrongdoing and therefore, no conclusions could be drawn from them. However, my personal experience differs from this sentiment.
Twice, I have brought a legal challenge against entities and twice, they have settled. The main reason for a settlement is that the other side knows they can’t win in court and/or wants to avoid adverse publicity. Settlements are, in fact, a tacit admission of vulnerability.
As far as the issue of “has autism,” “causes autism” and “autism-like symptoms," this to me is a lot of semantic parsing. The Vaccine Court is never going to come out and say that vaccines cause autism and the speaking of this kind of legalese only punches up that fact.
But it requires no stretch of the imagination to see that vaccines could trigger genetically-latent autism in vulnerable individuals, nor that a vaccine calamity could aggravate a child’s pre-existing condition.
Dr. Jacqueline McCandless, a luminary in the autism world, offered this advice regarding vaccines:
"Several caveats are that the child should be in good health before receiving vaccines, all vaccines be thimerosal
free * and all vaccines be given as separate components, e.g. M & M & R each being six months apart and boosters only for those testing negative for immunity. Hepatitis B should be given to a newborn only if the mother tests positive, otherwise the child can wait until 4-5 years of age."
It’s disheartening that the vaccine war rages on, when a middle path seems to be so clear. No one wants the resurgence of dreaded childhood diseases, but at the same time, no one wants children with acute sensitivities to environmental toxins to suffer vaccine injuries. However, the entire debate has become so vitriolic and divisive, meeting somewhere in the middle appears to be a Herculean task.
As one of our other authors noted, it’s going to require cleared-eyed members of Congress to walk that middle
ground to get things done but frankly, I don’t have a great deal of confidence in that happening.
After the stunning performance of James Hobley, the eleven-year-old with autism who blew away the audience on “Britain’s Got Talent” with an amazing dance routine, it’s a fitting time to address the benefits of dance for children on the autism spectrum.
The practice of dance is highly structured and very ritualized, a selling point for children with autism. Dance has the power to help unlock the imagination of a concrete thinker and it empowers the dancer to give expression to their inner life, something crucial to children who struggle with other modalities of communication.
The experience of dance can open up children with autism to the possibility of more connection with others. Social interaction demands being on the same page with peers — something very difficult for a child on the spectrum to achieve. By encouraging children with autism to dance to rhythms, the mirroring of another’s experience bestows the satisfaction of belonging to a group.
Cutting-edge research points to children with autism needing multiple types of stimulation in order to process information. The combination of music and dance help the brain to reorganize itself. In dance, the child processes music, learns movement, performs movement to that music, then repeats it multiple times. The hearing, listening, processing, executing and repetition enable a child’s brain to forge new pathways, engaging both the right and left side of the brain.
One form of dance therapy, the Feldenkrais method, deliberately focuses on the interplay between the brain’s right and left hemispheres.
Moshe Feldenkrais developed a protocol that concentrates on rebuilding sensory and movement systems, specifically through unlearning poor movement patterns. The therapy is gentle, as I can personally
attest to and some children and adults with autism have experienced significant gross-motor, fine-motor,
sensory and relational improvement.
Feldenkrais practitioners who have undergone additional training to work with children with development disabilities have implemented principles of the Feldenkrais for Children with Neurological Disorders (FCND), a unique method that improves the movement qualities and abilities in
Above all else, dance is fun and should be approached in that spirit. As someone with a degree in dance and decades of experience, I do recommend making sure a child’s dance teacher is always warm and supportive. There’s many a petty tyrant in tights who can potentially be damaging to a child psychologically. Additionally, watch closely for eating
disorders (a prime occupational hazard for dancers).
With that said, dance is a wonderful way for children on the autism spectrum to engage themselves and their world.
reported last month, three-year-old Adam Benhamama, vanished during a game
of hide-and-seek with his sister in a suburb of Montreal, Canada. His
disappearance initiated an intensive three-day manhunt that yielded few clues
and no results. Benhamama had autism and was reportedly non-verbal and
Sadly, Adam’s body was found earlier today after someone walking along the Mille-Îles
River called police when the saw what they initially thought was a large doll in
the water. Police came to the scene and later confirmed the body to be Adam’s.
He was recovered a little over one mile downstream from where he initially
This is a heartbreaking story on many levels and undoubtedly, Adam’s parents
and family are devastated. Our thoughts and prayers are with them during this
Drowning is currently the leading cause of death for children and adults with autism, with a large majority of these incidents occurring during wandering-related episodes.
For a free copy of an autism wandering brochure, visit http://www.awaare.org/docs/wanderingbrochure.pdf
(Adobe Reader Required).
Parents of children with autism are painfully aware of bullying, but often feel helpless when it comes to protecting their child in a school environment. Some wise children have taken it upon themselves to address the issue head-on.
Last month in Grand Rapids, Michigan, a group of teenagers testified on bullying in their schools. They described it as a pervasive and urgent problem and not a "right of passage." Demonstrating a high degree of enlightenment, they argued that bullies needs help as well, as they are often contending with violence and chaos in their home environment. In summary, they urged state
officials to approve a statewide bill addressing the epidemic of bullying which passed the house, but stalled in the senate. Opposition to it focuses on the fact it includes protection against harassment based on sexual orientation. What a dangerous and depressing statement that makes.
Another example of youthful activism is Dylan Beckham. Dylan was only nine-years-old and in the fourth grade when he saw his classmate and friend with autism being bullied on the playground. Anguished at the incident, he walked over to the tormentors and told them to cease and that they should be nice to his friend and play with him.
But Dylan didn’t stop there. He met with school district administrators and produced an incredibly poignant anti-bullying video showing children’s physical scars and likened them to the scars of bullying. At the end of the video, he challenges the schools in his city to raise money for autism awareness.
In the three years since then, Dylan has raised over $25,000 for autism causes, appeared on Anderson Cooper 360 as a "Hometown Hero" and now has received a national Jefferson Award, the "Nobel Prize" of public service.
It’s amazing what one young man from Kentucky has accomplished. His is very proud that a former bully from his school now helps and protects a classmate with autism. I have nothing but admiration for these young people and others like them.
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.
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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 […]