Center for Disease Control and Prevention
With Summer at our door step, children on the Spectrum will be flooding the parks, camps, local pools, malls and movie theaters, to name but a few places of respite from the heat. While we would love to keep our children out of harm’s way; we need to be mindful that emergencies happen, and we need to know how to handle them, as well as communicate our children’s needs to emergency workers. I would love nothing more than to have everyone trained, or at least cognizant of how to approach a child on the Spectrum during an emergency, but that’s simply not going to happen anytime soon. But as parents we can make phone call to local legislators and police supervisors urging them to find out more about training their personnel. An even easier method is to send a copy of this or other articles/blog posts so they can see what their constituents are concerned about. For my EMS, PA, and other friends and blog followers who have already taken this step, Thank you.-Ed
Mass. Emergency Workers Learn To Recognize Autism
by DENISE LAVOIE Associated Press
WRENTHAM — Norwood Police Lt. Martin Baker begins his training session with a startling new government statistic: 1 in 88 children in the United States has autism or a related disorder.
Then Baker, whose son has autism, tells the class of 25 police officers, firefighters and other emergency response workers gathered at the Wrentham police station what they can do when they encounter someone with the disorder.
“Use calm, simple language,” he says. “Avoid touching or standing behind the person.”
But Baker knows it’s not as simple as that. So for the next three hours, he gives the group a crash course on how to recognize the signs of autism and how to adapt their usual emergency response techniques to help someone with the disorder.
Over the last eight years, hundreds of classes like Baker’s have been held around the state. The Autism and Law Enforcement Education Coalition, known as ALEC, has trained more than 15,000 emergency workers on how to respond appropriately when they encounter someone with autism, a broad spectrum disorder that affects normal development of social and communication skills.
Typically, the training features a police officer who has a close relative with autism and can describe expected behaviors and suggest ways to deal with people without using force.
Data released in March by the Centers for Disease Control and Prevention show that autism likely affects about 1 million children and teens in the United States. Its new figure of 1 in 88 children means the disorder is nearly twice as common as the government said it was just five years ago. Health officials attribute the increase largely to wider screening for the disorder.
For parents of autistic children, the training is a welcome relief.
Nancy Shea of Brookline says she worries her 22-year-old son, a college student who has social and communication difficulties, will have problems in any encounter with police.
She recalled an incident one night when her son was 17 and a neighbor called police on him and several friends who were talking loudly and doing cartwheels on the lawn.
“My son kept asking the police: ‘What’s wrong? What are we doing wrong? I really want to know what we are doing wrong,'” Shea said. “For someone like my son, that is legitimate. They don’t get the whole idea of appearing to be contrite and sorry because it’s 2 in the morning and you’re a bunch of teenagers making noise.
“I could see the police officer looking at my son. If I hadn’t been there, it could easily have escalated,” Shea said.
There have been several cases of people with autism being shot by police.
Last year, a jury awarded $1.7 million in damages to the family of an autistic man who was shot and killed by a Los Angeles police officer. According to testimony, the 2008 encounter began amicably, with Mohammad Usman Chaudhry chatting with officers about his shoes and how he stayed dry when it rained. But moments later, an officer shot Chaudhry. Police say Chaudhry pulled a knife on the officer and lunged at him.
In 2007, a Miami teenager who was autistic died after police officers restrained him following an outburst at his home. And in Calumet City, Ill., a 15-year-old boy with Asperger’s Syndrome, a high-functioning form of autism, was shot and killed by police in February. Police said the boy cut one of the officers with a kitchen knife, and the officer thought his life was in danger.
Dennis Debbaudt, considered the guru of autism trainers for law enforcement, did his first training session for police in Detroit in 1995 and his organization has held classes since then for police departments around the country. He said Massachusetts has one of the most active programs.
Debbaudt, who has a son with autism, said one of the biggest difficulties is that people often do not exhibit obvious signs of the disorder and police may be suddenly taken aback by an unusual movement or reaction.
“If a law enforcement officer came to a scene where someone wouldn’t look them in the eye and repeated what the law enforcement officer said … you could easily make a judgment — without knowing it’s autism — that there’s somebody who must be hiding something,” Debbaudt sad.
“A family’s greatest fear is that no one will know and our son or daughter won’t be able to explain, or they will run off or close in on someone’s space. This is how people get hurt.”
Martin tells the officers in his class that they must always do what they need to do to keep themselves safe, but he also offers them techniques to help calm autistic people, who can become agitated at the sounds of sirens and dealing with police.
He also tells his class that autism appears differently in different people. Some people with autism are high-functioning; some need help with everyday activities. Some are talkative; others are non-verbal. Some don’t like to be touched; others stand too close.
“What might work for one might totally set off another,” he said.
Wrentham police officer Derick Cassidy nodded his head throughout Martin’s class. His 2-year-old son was diagnosed with autism last year. Cassidy said he appreciates the training as a father and a police officer. He’s had to respond to calls for two autistic brothers in town who tend to walk around late at night.
“We’ll go there and say: ‘You’ve got to head home. You’re making people nervous.’ But we do it in a gentle way,” Cassidy said.
ALEC training coordinator Bill Cannata said the program began at the urging of parents who were concerned that first responders would not know how to deal with their children on emergency calls. Cannata, a Westwood fire captain, has trained fellow firefighters, emergency medical personnel, police and county sheriffs.
ALEC did a training session for state police at Boston’s Logan International Airport last month. About a week afterward, one of the state troopers said he saw someone in the airport who he initially believed was behaving suspiciously but soon realized he was dealing with someone with autism.
“He de-escalated the situation,” Cannata said. “This story repeats itself all the time. The training pays off.
Rep. Dan Burton Calls for Autism HearingsTake Action!
Please Take Action to Support his Appeal
Representative Dan Burton recently published the letter below in The Hill calling for Congressional hearings into the causes of autism (including mercury and vaccines), the inadequacy of the Federal government’s response to the autism epidemic, and the failure of the Vaccine Injury Compensation Program to assure a safe vaccine supply and provide justice to those injured by vaccines. No hearings by Congress have been held on these topics since those chaired by Burton himself more than 10 years ago. Burton is one of the few elected officials in the United States to have the courage and intellectual honesty to confront the autism epidemic and the many, many questions raised by a honest review of the facts. But he needs your help.
What You Can Do:
1) Please click on Take Action link above to send an email to your representative asking for support of Burton’s call for hearings, and to support Burton’s newly introduced bill, “White House Conference on Autism Act of 2011” (H.R. 3489), calling for a conference lead by the Whitehouse on the autism epidemic.
2) Congressman Burton is no longer the chair of the House Committee on Oversight and Government Reform, though he remains an active member. He is requesting that Chairman Darrell Issa hold hearings on the VICP. However, given all the competing interests in Washington, we need to support Congressman Burton’s leadership by showing broad community support for these hearings. We need every single one of you to go to these Facebook pages, the first is for the Committee, the second is for the Democratic Party members of the Committee, and express your support for hearings and a White House Conference on Autism.
We specifically want the following:
The U.S. House of Representatives Oversight and Government Reform Committee should initiate promised hearings as soon as possible on the failure of federal health agencies to appropriately respond to the autism epidemic. It has been ten years since this Committee examined the role of the federal authorities in the autism epidemic. We can think of no other instance where any comparable epidemic has gone on for so long without Congressional oversight.
3) Please share this email with friends and family and please post to Facebook and other social networks. And if you support the work of the Autism Action Network Please consider making a donation at www.autismactionnetwork.org/donation.org.
The original letter in the The Hill can be read here:
It is time to re-engage on the autism epidemic
By Rep. Dan Burton (R-IN) – The Hill, 04/24/12 09:15 AM ET
On March 30, 2012, the Centers for Disease Control and Prevention (CDC) released their latest figures on the number of autistic kids in America. The numbers are sobering. Thirty years ago it was estimated that autism affected only 1 out of every 10,000 individuals. The latest CDC figures put the number at 1 in 88 American children (one in 54 boys); a 550 percent jump in cases since 2000. We are literally in the midst of a nationwide epidemic.
In the late 90s, my grandson was diagnosed with autism. Like other family members who have been touched by autism, I wanted to know more about this condition. During my tenure as Chairman of the House Committee on Government Reform (1997-2002) and the subcommittee on Human Rights & Wellness (2003-2004), I held no fewer than 20 hearings examining the state of federal scientific research into the cause of and treatment for autism. I am proud of the work we did to raise awareness of autism and draw more attention to the need for research; and I am firmly convinced that the work we did back then laid the groundwork for the historic Combating Autism Act and for the $1 Billion in Federal research into autism that is happening today.
Unfortunately, a great deal of misinformation has been thrown around in public and private about the Committee’s focus on mercury in medicines as a possible factor in the autism epidemic. I’m not a scientist, but the Committee heard from many credible scientists and experts who are convinced that mercury is a contributing factor; and the theory is no less worthy of exploration than the theories being propounded today that the pregnancy weight of the mother or the age of the father at conception influences whether a child becomes autistic. When you have no idea what is causing a disease, policymakers and scientists should never be afraid to investigate any plausible theory. In fact, researching possible environmental factors is a central component of today’s research on autism.
Regrettably, lost in the controversy over mercury are two other issues the Committee explored. First, in the 1980s, Congress created the Vaccine Injury Compensation Program (VCIP) to shield medical professionals and vaccine manufacturers from liability if an individual suffered an injury from a vaccine. The compensation fund, which currently contains over $3 Billion, was created to protect the vaccine supply and to insure that all who were injured by a vaccine received compensation in a no-fault, compassionate and easy to use manner.
Congress intended for families to be compensated quickly and fairly; and when the evidence was close as to whether or not the medical condition in question was vaccine related or not the court should always err in favor of the injured. Our investigations found that over the years the system had broken; and what was supposed to be quick and fair became slow and contentious. There has been no Congressional oversight of VICP in the last decade, and the system has not improved; if anything it has gotten worse. It is time for Congress to revisit this issue and consider substantially reforming this program. For the public to trust vaccine policies, it is vitally important to have a National Vaccine Injury Compensation Program that is efficient, effective, and fair to those who may have suffered injury from vaccines.
The other issue we dealt with is how do we help the millions of individuals and families afflicted with this disease. Autism has no cure and it is not a life-threatening disease. That means that the autistic children of today will be the autistic adults and autistic seniors of tomorrow. Our nation is ill prepared to deal with the complex challenges posed by a generation of autistic individuals. There have been far too many stories in the media of police, firefighters, and teachers ill-prepared to cope with an autistic individual and tragedy has resulted. We need to change that. We need prominent and influential leaders to step forward and spark a national debate on autism.
That is why I introduced the “White House Conference on Autism Act of 2011” (H.R. 3489). It will require the President of the United States to convene, no later than December 31, 2012, a White House Conference on Autism charged with developing policy recommendations on ways to address the autism epidemic and its impact on Americans. I hope to see this bill signed into law before I retire from Congress at the end of this year. Although I am retiring from Congress, I am not retiring from the fight against autism, because I firmly believe as a nation we have a collective responsibility to do everything we can to not only stop the further spread of this disease but to help the millions of children, adults and families afflicted by it.
Rep. Burton (R-IN) has chaired the House Committee on Oversight and Government Reform from 1997-2002.
- Congressman Dan Burton: It is time to re-engage on the autism epidemic (leftbrainrightbrain.co.uk)
I received an email this morning from The Autism Action Coalition. Here are the primary points:
New Autism Rate: 1 in 88
Rumors are swirling that the federal government will release this Friday the next round of official autism prevalence statistics and the news will be grim, the “official” autism rate is expected to be 1 in 88, up from 1 in 110 in 2010, which was up from the 1 in 166 rate in 2008. Given the 4 to 1 ratio of boys to girls, the rate for boys is probably in the neighborhood of 1 in 48. The autism rate has doubled in four years. This is a public health catastrophe.
The federal autism research budget is the same now as it was in 2007. That means we are spending less for every case of autism now than we were five years ago.
The federal budget has increased by a trillion dollars a year since 2007, rising from $2.8 trillion to $3.8 trillion. That means we are making proportionally less effort on autism now than 5 years ago.
The following link is a “Take Action” button which will take you to a standardized letter which you can customize and send to your Senators as well as President Barack Obama:
Also, this from www.Salem-News.com:
CDC to Announce New Autism Rate of 1 in 88, and Believes CDC Likely to Declare ‘No Public Health Emergency’ and ‘No Epidemic’
Special thanks to: bloggingforautism.com
(WASHINGTON DC) – This week, the Canary Party expects CDC to announce a new autism prevalence rate of 1 in 88. As boys are diagnosed with autism at four times the rate of girls, this translates to 1 in 48 boys. That new rate would be an increase from the previous 1 in 110 reported two years ago by the CDC’s ADDM (Autism Developmental Disabilities Monitoring) Network. This would only be the latest uptick in the autism rate reported by CDC, as the disorder was diagnosed in 1 in 10,000 in the 1960s, and the rate was virtually zero before 1930.
The Canary Party also expects federal health authorities to continue to downplay the seriousness of the skyrocketing autism rate, just as they have done for the past two decades since the rate began rising dramatically. Canary Party Chairman and autism father Mark Blaxill, drawing on his own experience working with federal agencies on autism for many years, commented, “No matter how high the autism rate soars, the CDC’s continued denial of an autism epidemic is certitude comparable to death and taxes.”
History shows us that Polio was called epidemic when the rate was only one in 2,700. The American Academy of Pediatrics recently called trampoline injuries epidemic, even though that rate was only about one in 1,200 children for the year the those injuries were reported (1996). By these measures, The Canary Party holds the position that autism should have been declared an “epidemic” many years ago. Some have offered the excuse that only infectious diseases can be called epidemic, but as the CDC has announced that obesity is epidemic in the U.S., the Canary Party believes that this leaves the agency with no good explanation for failing to characterize autism as such.
Ginger Taylor, Executive Director of The Canary Party, echoes the questions that autism parents have been asking for years: “How did we go from one in 10,000 children born 50 years ago being diagnosed with autism to 1 in 88 diagnosed today? Why do the Centers for Disease Control refuse to call the avalanche of autism diagnoses in the U.S. anything more than an “urgent public health concern?” Why is the federal agency downplaying a national emergency with special wording created just for autism – Urgent Public Health Concern – a label that is not used to describe any of the thousands of other disorders and conditions the agency tracks? When dozens of published research papers and multiple congressional hearings have shown that the primary causes of autism are environmental, and include vaccines and their components, why has CDC failed to offer any advice to new parents on how to decrease the chance of a child developing autism? Why has CDC chosen not to even attempt to identify which children are the subset vulnerable to these environmental exposures so that they can be handled with greater care?”
Taylor further said, “We hold the CDC accountable for failing to warn parents about the risks of these exposures, and especially for CDC’s own bloated, one-size-fits-all vaccine schedule – which exploded in the late 80’s after vaccine makers were indemnified against litigation by Congress.”
Canary Party member Lisa Goes added, “The vaccine schedule – never tested for safety as a whole – is a vast, uncontrolled human experiment on a generation of children.”
The Canary Party calls on Americans to demand that federal health authorities call this what it is, an autism epidemic, and to demand that government take action to make our air, water, foods, medicines and vaccine program safer. Please contact your legislators and President Obama. www.usa.gov/Contact/Elected.shtml
Please spread the word and urge your legislators to take action to protect and work for the benefit of all children on the Autism Spectrum.
- New CDC Autism Rate: Expected to Increase to More Than 1 in 100 (beyondautismawareness.wordpress.com)
While this news is certainly startling, it is not unexpected, in my opinion. This fuels my drive as a parent of an Autistic child, and advocate for Autism Awareness to spread the word as loudly and frequently as possible to reach as many people, especially legislators, to become involved in Autism-related efforts. In the span of 8 years since Mike was diagnosed, I have seen this rate increase from 1 in 150 to this prediction of more than 1 in 100. Spread the word. Get involved for yourself and your loved ones.
New CDC Autism Numbers Coming Soon; Rate Increase to Over 1 in 100 Expected
Autism was reported as a new condition in American children born in the 1930s.
The CDC – photo courtesy: bellsouthpwp.net
(WASHINGTON DC) – Officials at the Centers for Disease Control have promised to release their most recent autism prevalence numbers sometime “in the spring,” which officially begins tomorrow. Most likely the release will give rates from the 2008 report of the Autism Developmental Disabilities Monitoring (ADDM) Network on eight-year-old children born in 2000.
Over two years ago the CDC reported autism rates of 1 in 110 in children born in 1998. Early reports indicate that rates for children born in 2000 have risen above 1 in 100. According to sources, the new rates could be announced as early as next week.
Chairman of the Canary Party Mark Blaxill said, “We’ve been waiting for years to get these numbers from the CDC, but most of all we’ve been waiting for health authorities to face the reality of the American autism epidemic. Something terrible has happened to a generation of American children and the CDC refuses to declare autism a public health emergency.”
In order to assess the new report, the Canary Party urges the public to consider the following:
• These statistics are many years behind the current situation. Since the onset of autism begins in infancy, before three years of age, these statistics are effectively a decade old.
• Utah, one of the ADDM reporting sites, has already published their results for the 2000 birth year. The risk for autism in eight-year-olds born in Utah in 2000 was 1 in 77. This is a 73% increase from Utah’s 2002 ADDM statistics, which showed a rate of 1 in 133 for children born in 1994.
• Autism was reported as a new condition in American children born in the 1930s. For many years reported U.S. autism rates were low, not much higher than 1 in 10,000. Starting with children born around 1990, autism rates began exploding. Some authorities attribute this increase to the inclusion of Asperger’s syndrome in official diagnostic criteria, but Asperger’s syndrome only makes up a modest portion of total autism cases and cannot explain such sudden and large increases.
• The ADDM Network has never reported breakdowns within the autism spectrum, making comparisons to past prevalence reports difficult. Without the ability to separate rates of Asperger’s syndrome from other autism categories, the CDC has failed to address the impact of Asperger’s syndrome on autism time trends.
• The ADDM Network reporting sites have also changed frequently, making comparisons even with the CDC’s own autism reports difficult. High prevalence sites like New Jersey were removed from the ADDM Network and lower prevalence states like Florida were added. These shifts make the increases appear less alarming than they truly are. Nevertheless the last CDC report showed an increase of 57% in just four years.
• The ADDM Network reports begin with children born in 1992, so they miss the crucial inflection point in autism rates around 1990. Yet the CDC’s own statistics from New Jersey, an early ADDM site, show rates for autistic disorder rising from ZERO in the 1988-89 birth years to 1 in 128 by 1993.
The only plausible explanation for these rapid increases is a change in the environment affecting millions of American children. A recent study on California twins — the largest autism twin study ever conducted — reported that the environment explained over 60% of autism causation, and by some estimates over 90%.
The Canary Party calls for all Americans to watch for the new autism rates and demand action from public health authorities.