The Wrong Questions Are Being Asked Following the Heartbreaking Outcome of Mikaela Lynch’s Disappearance 

Last Sunday, nine-year-old Mikaela Lynch slipped away from her family’s vacation home in Clearlake, California. After an intense search, her body was found in Cache Creek yesterday just before noon.

Mikaela had autism and could not speak. Like many of children with autism, she was attracted to water.

Our deepest sympathies and full support go out to the Lynch family.  The misinformation circulated by bloggers who rely on cheap, shock-value content to gain readership does a great disservice to our community, this cause, and to a family who is being kicked while already down.

While her two children played on a trampoline on Mother’s Day, Mikalea’s mother was in the back of their vacation home putting screens on vent holes because the wasps were building hives in them. During this time, a bee scared Mikaela’s brother, he ran and Mikaela disappeared. Based on video surveillance and time stamp, Mikaela’s parents were two minutes behind her. Thirteen minutes into frantically searching for their daughter, they called the police.

Many have asked why Mikaela was naked. This behavior is common among those with autism who have tactile sensitivities, or routine-based behaviors. The leadership of the National Autism Association is currently in Canada at the Missing & Exploited Children Conference to speak with first responders and social workers about this very issue – wandering behaviors in autism, why our children remove clothing, how they are attracted to water, and how parent blame is common.

Last November, a study released in Pediatrics showed that 49% of children with autism like Mikaela are prone to wandering, a rate four times higher than their unaffected siblings. This indicates that this is not an issue of bad parenting. From 2009 to 2011, 23% of children who died following a wandering incident were in the care of someone other than a parent. Again, this issue is happening across all settings, under various types of supervision.

The data also showed that only 50% of our parents have received advice about wandering prevention from a professional. Sadly, many in our community are unaware that wandering is even an issue.

So, instead of asking why the parents took their eyes off their child – something all parents do when we sleep, shower, cook, go to the bathroom, comment on an article, read a blog, or make home repairs — the better question to ask is: how can we help children like Mikaela progress so that they understand ways to stay safe? Where are the programs for these children? Where is the aid for their families? Where are the treatment protocols? Insurance coverage? Where are the AMBER Alerts for children who are disabled? How can we help prevent children like Mikaela from wandering away from home, or school? How can we help parents of special-needs children have respite care? What can WE do to prevent these deaths? How can WE get the information to parents, caregivers, and teachers?

Four weeks ago, another little girl with autism was found dead. Alyvia had wandered away from her grandmother’s home and drowned in a nearby body of water. In 2012, our community lost Aryanna, Aiden, Bailey, Jeremiah, Christian, Alexie, Kaleb, Au-juna, Tye, Tatianna, Sean, David, and others who need for us to start asking the right questions. Are we asking the right questions? It’s easy to place blame. It’s easy to judge. It’s difficult to be accurate unless you’ve been there.

Last year, this blog was written after a mother was repeatedly blamed & verbally assaulted after her 12-year-old child with autism drowned in a pond near the family’s home. What did she do wrong? She accidentally left the garage door open for a few minutes after she brought groceries in and set them on the counter. Kicking these parents while they’re already down is not only cruel and heartless, it has the potential to negatively affect other children in the home. “Reporters” shouldn’t inflict additional emotional pain upon surviving siblings if their real goal is to protect and look out for children, especially if their details are shoddy at best.

It was Mother’s Day when Mikaela disappeared, and her family is absolutely devastated. Please share educational resources with families, teachers, and first responders. To do this, visit www.awaare.org and download the “Big Red Safety Toolkit” on wandering prevention.

Lori McIlwain
Executive Director

We need your help.

The National Autism Association has been the leading national organization addressing the critical safety needs of children most severely affected.  We’ve made progress on some issues, such as wandering-related initiatives.  Now, we need to tackle the problem of student abuse.

At NAA, we follow trends via daily news alerts to see if problems facing families affected by autism are on the rise.  In our view, the number of reports of students being subjected to abuse, particularly in isolated self-contained classrooms, highlights a growing area of grave concern.

The issue suddenly became front-burner in south Texas about two years ago when Fox News 26 special projects reporter Greg Groogan began reporting on this dangerous trend. An award winning journalist and the father of an affected child, Greg has documented more than half a dozen confirmed cases of abuse in the Houston area alone in that timeframe.

These reports include:

• A ten-year old with Down Syndrome who came home with scratches and heavy bruising

• A nine-year old student with autism who was repeatedly imprisoned in a closed file cabinet by her special-ed teacher

• A teacher who disciplined a student with autism by spraying water in his face at point blank range

• A boy with severe autism who came home with multiple bruises and abrasions

• Several students in a classroom who were forced to put vinegar-soaked cotton balls in their mouths or run on treadmills at a painful pace as a means to get them to complete work

Families are taking notice, and they are talking to their legislators in Texas.

Building on this momentum, disability advocates in our state have been working toward legislation that would require cameras in self-contained classrooms in response to multiple media reports of confirmed abuse in these educational settings.   The Texas legislature meets only every two years for 140 days.  If you have legislation you want passed or amended, you have a very short window and the pace is unbelievably frantic.

If we are going to get this done in Texas, now is the time.

It’s no surprise to parents of children significantly affected by autism that their kids are uniquely vulnerable to abuse due to many factors:  classrooms with closed doors, often inadequate training for teachers and aides, inappropriate staffing levels, children with sometimes challenging behaviors who may not be able to report what happens at school.  The explosion in autism rates has brought some school districts to the brink of disaster as they struggle to catch up with rapidly increasing numbers of students who have a high level of need.  For many families who have no insurance coverage for autism-related therapies, the public school is the only resource they have to help their children.  It’s no wonder IEP meetings have become war zones as caregivers vie for scarce resources.  Even squeaky wheels often don’t get the grease.

Self-contained classrooms, as the name implies, essentially sequester students, teachers and aides behind closed doors for the majority of the school day.  There is usually little movement between these environments and general education environments.  Since it’s desirable (and often cheaper) for school districts to educate a student in the least restrictive environment (LRE), self-contained classrooms should be near last when considering a child’s instructional setting.  The driver for falling back on this restrictive placement is often the intensity of support a student requires both to learn and to maintain self-regulation (or, in common vernacular, behave appropriately for the situation).  Parents are often forced to trade off a more inclusive, less restrictive setting for these exclusive, segregated settings.  The stated reason is normally that this is the setting the student requires to make progress.  Often, though, it is because school districts are hesitant to provide appropriate support in more inclusive settings or have not been successful remediating behaviors using peer-reviewed proven approaches.

NAA’s new white paper discusses in greater length what should ideally be happening to help alleviate this problem.  There are so many moving parts to this issue though, there is no quick fix, and our children can’t wait.  One short-term solution (admittedly a band-aid but we have to stop the bleeding somehow) is the use of cameras to provide documentary evidence to rule abuse in or out when it’s suspected.  This is only step one in a multi-step process necessary to protect vulnerable children.

Our hope is that we can make progress in Texas’ schools and inspire a broad transformation in how schools, legislators and policy-makers view their responsibility to protect the safety of students who, this report seeks to prove, are in danger.

YOU CAN HELP by forwarding this white paper to school administrators, legislators and policy makers, as well as disability advocacy organizations (whether they are specific to autism or not, since this affects children of varying disabilities).  Please, do this NO MATTER WHERE YOU LIVE. 

I’d like to close by saying I believe the majority of teachers are dedicated individuals who have made tremendous positive impact in the lives of students affected by autism.  In a very real sense, they have been left “holding the bag” as federal agencies wring their hands about sky-rocketing autism rates.  They are on the front lines for families who may have no other options — no money to pursue treatment and therapy that could improve their children’s outcomes.  I know countless teachers who spend money out of their own pockets for school supplies, and who spend many hours outside the classroom managing the avalanche of paperwork involved in special education.  I salute them as heroes in the face of this epidemic.

But we can’t turn our backs on the growing number of students, most of whom will never be able to tell us what has happened and who may be subject to chronic abusive practices, in our fight to protect our loved ones’ safety.

It is sad that it has come to this.  I am a big believer in personal privacy.  But when a non-verbal child with autism is being locked in a file cabinet, stuffed in a duffel bag, hit, kicked, derided for their disability — all undetected and perpetrated by an adult entrusted with their care — I say privacy be damned.  Let’s get to work protecting these students while we tackle the larger problem of getting schools the resources they need for our kids.

Information for families

If you are concerned that your child is being abused at school, you should be aware that it is a legal issue, not just an educational issue.  You will need to make an assessment regarding contacting Child Protective Services or the police.  Be sure to document all communication meticulously, and take photographs if you see evidence of maltreatment.  You may also need to visit your pediatrician or family doctor to document any suspected injuries.  A child psychologist or therapist who is familiar with autism spectrum disorders might shed light on whether your child has undergone emotional trauma, which is often overlooked.   You may also choose to seek help and have witnesses present before you question your child.

If you have filed a report, you have a right in parallel to utilize complaint procedures outlined in the Procedural Safeguards.  You may also contact your state’s Protection and Advocacy organization or your State Board of Education to learn more about resolving complaints.  If your child has challenging behavior, you will need to assure they have received a Functional Behavior Assessment (FBA) and if needed a Behavior Intervention Plan (BIP).

Leslie Phillips
NAA Board Member

Of course, this is just one example of how caring he can be. But he’s so many other things. Loving, sensitive, empathetic, scared, smart, funny, insightful. You can’t sum him up in one word or way. He loves his classmates and they treat him with care and respect. But I’m wondering how the rest of the world will now treat him.

It’s been a week since the Sandy Hook Elementary School shootings, and unconfirmed speculation that the shooter was “autistic-like” has already come at a steep price. Despite school administrators alerting staff to stay on the lookout for mistreatment towards those with autism, reports have come in of children being taunted and bullied, siblings being questioned and judged, and parents worried about sending their children to school. A Facebook group – now removed – was created with the stated goal of killing people with Asperger’s.

Not only are we left to process that day time and again to reach some sort of answer, comfort, or way to go back in time, we must also worry for our own children while wondering if our neighbors, friends, co-workers, and society will now fear them.

On top of the standard struggles you’d expect with a diagnosis that limits communication and function, the safety of children and adults with autism and Asperger’s was already well compromised before Sandy Hook. Sexual assault, physical abuse, and bullying have steadily increased over the last few years, while behaviors like elopement have claimed more lives in 2012 than the previous two years combined. Every week, we lose another child with autism. Kaleb, a five-year-old with autism, was killed Sunday after a hit and run. Melissa, an eleven-year-old with autism, died from severe abuse at the hands of her stepmother. Joey, a seven-year-old with autism, was one of the victims of the Sandy Hook shootings. People with autism and Asperger’s are victims enough already.

For the sake of preventing future shootings, we as a country cannot afford to accept the most convenient answer. Multiple factors have to come into play for something like this to occur – the will, the way and the want, of sorts. A person would need to be physically, mentally, and emotionally capable of conceptualizing, planning, and executing a mass murder of this nature. They would need access to weapons that do the most amount of damage in the least amount of time. They would need the motivation to carry out a goal-directed attack. There is no one convenient answer, and it most certainly is not autism.

We also need to look at other shooters. The majority of the 41 school shooters studied by our own Federal government were “social” and had no history of violence. In their 54-page report, autism and Asperger’s aren’t mentioned at all. You’ll see the date December 14th for previous shooting sprees more than you’ll see anything related to these two diagnoses.

Then there are the facts about autism and Aspergers. As stated in this press release from the Interagency Autism Coordinating Committee, “There is no scientific evidence linking ASD [Autism Spectrum Disorders] with homicides or other violent crimes. In fact, studies of court records suggest that people with autism are less likely to engage in criminal behavior of any kind compared with the general population, and people with Asperger syndrome, specifically, are not convicted of crimes at higher rates than the general population.”

Even so, the suggestion that autism and Asperger’s equals premeditated violence has taken hold. It’s a world-is-flat claim to those who know and understand these diagnoses, and no more relevant than the shooter having long hair. But this unconfirmed report, served up by the media like fast food in a drive-thru, seems to have become truth by perception.

Will we let it continue?

During this time of year, the National Autism Association would normally ask for your donation, but your kindness would be more valuable. Take a moment over this holiday season to offer a kind word to a family affected by autism or Asperger’s, or say a kind word about affected individuals.

Trust me, one kind word will go a long way.

–

Several media reports have indicated that the Sandy Hook shooter had an Autism Spectrum Disorder (ASD). While this remains speculative and unconfirmed, the manner in which the information was delivered left no room for doubt among readers and viewers across the country. Not only was ASD suggested as the reasoning behind this planned attack, it was singled out in national and local headlines.

Over the last few days, the leadership of the National Autism Association has had thoughtful and heartfelt discussions as to whether acknowledging and giving credence to these reports could ultimately do more harm than good. Perception is powerful, and as we saw with the Virginia Tech shootings, a Review Panel later dismissed the wrongful claim of a diagnosis of Autism. The public was unnecessarily exposed to the initial information, but not the latter, leaving society to connect an additional dot that never existed. A similar case to Sandy Hook in 1996 also had no connection to Autism, nor did the one in Aurora, Colorado, or Columbine.

Regardless, there is no link between planned violence and Autism Spectrum Disorders. Those with ASD are victims of crimes like this, not the perpetrators.

We call on the public for its support in undoing the damage of erroneous media reporting. Individuals with Autism are deserving of love and compassion – not fear and mistrust. They are often misunderstood,ostracized, bullied and abused. Please do not allow irresponsible reporting to perpetuate violence against more innocent human beings.

In closing, it is our hope that the focus remains on the victims of this unthinkable tragedy, and that immediate measures are taken to protect society’s most vulnerable and innocent citizens, including those with disabilities.

Despite our efforts, NAA was denied an invitation to testify at this hearing on behalf of families and individuals who are severely affected by autism and unable to advocate for themselves.

We have submitted a formal statement, which appears below, to the committee for the public record.  The document is available in PDF format here.  If you would like to submit a statement to the committee, you may email it to: will.boyington@mail.house.gov, the deadline for submissions is December 6th at 5pm.

U.S. House of Representatives

Committee on Oversight and Government Reform

“1 in 88 Children: A Look Into the Federal Response to the Rising Rates of Autism”

November 29, 2012 – 2:00 pm

STATEMENT FROM THE NATIONAL AUTISM ASSOCIATION

Chairman Issa, Ranking Member Cummings and members of the Committee;

We thank you for holding this hearing and bringing long overdue attention to the autism epidemic, which continues to explode under the current Administration.  We are especially grateful to retiring Representative Dan Burton for his years of service and advocacy, and to Elizabeth Birt, one of our founding directors, who worked closely with Congressman Burton back in 2000 when he first called attention to the plight of families and desperate need of good science.

Founded in 2003, the National Autism Association (NAA) is one of two membership-based autism organizations that serve the national population. A parent-run advocacy organization, NAA represents the severe side of the autism spectrum, which includes nonverbal autism, regressive autism, and comorbid conditions of autism that include intellectual disabilities and underlying medical conditions. In addition to advocacy for medical treatment and environmental research, our key issues include autism safety, autism abuse, and crisis prevention. Our mission is to respond to the most urgent needs of the autism community, providing real help and hope so that all affected can reach their full potential.

Unlike those diagnosed with high-functioning Autism, those who are severely affected cannot be present at your hearing to advocate for themselves, nor can their parents or caregivers. They require around-the-clock care, assistance with basic daily living skills, supervision and protection.  Some live in a constant mode of crisis and physical pain accompanied by irritability, aggression, sleep disorders and horrific self-injurious behaviors. Many are unable to effectively communicate, putting them at staggering risk of becoming silent victims of maltreatment and brutal physical, mental and sexual abuse – without the ability to defend themselves.  They often suffer from debilitating comorbid medical conditions that continue to go unacknowledged and untreated due to the blatant failure of our federal agencies to hear the cries for help from this community and direct research funding toward effective treatment.

As of four years ago, an estimated one out of 88 children born in 2000 carried a diagnosis of an Autism Spectrum Disorder (ASD), an increase of 78% from data released only six years prior.  These rough data are sure to be an under-ascertainment of children with an ASD since they are largely based on medical records. In 2006, after the Government Accountability Office investigated “Federal Autism Activities,” their findings showed that while autism research funding increased, surveillance challenges between agencies like Centers for Disease Control and Prevention (CDC) and Department of Education (DOE), needed to be resolved. An excerpt of note:

CDC’s surveillance methodology has relied, in part, on information in student education records, but CDC officials believe that a 2003 change in the Department of Education’s (Education) interpretation of relevant federal privacy law has hindered CDC’s ability to use this methodology to determine the prevalence of autism. Education stated that the law does not allow CDC to access these records without written parental consent. A 2003 law required HHS and Education to submit a report to the Congress by June 2005 describing ways to overcome the challenges CDC faces in obtaining education records. As of June 2006, CDC and Education had not agreed on options for overcoming these challenges and could not estimate when the report would be completed.

As of 2012, these surveillance challenges have not been resolved. Further, the CDC reports that the prevalence of autism is much higher in sites that have access to education sources. And with the lack of qualitative data, we remain unclear on what percentage of our population will need ongoing care into their adult years and throughout their lives.

Although other countries share similar prevalence numbers, the ASD surge in the United States is still considered to be an illusion of a 20-year-old diagnostic-criteria change, along with better overall awareness and diagnosis. As a community focusing on the more severe effects of autism, we know these explanations to be invalid. The majority of new ASD cases are the result of a very real rise in autism, and, as stated by Centers for Disease Control in their most recent data report, “ASD prevalence continues to rise in most ADDM Network sites, indicating an expanded need for programs serving children with ASDs.” Yet there are no such programs.

The National Autism Association feels that this epidemic denial has prevented the development of critically-needed solutions and resources. The result of soft Federal response continues to come in the form of stalled progress among already affected children, and potential crippling of the entire nation’s future economic health.

In 2005, the average annual medical cost for Medicaid-enrolled children was six times higher than costs for children without an ASD. In addition to medical costs, intensive behavioral interventions for children with ASDs cost $40,000 to $60,000 per child per year.

It is for these reasons the National Autism Association cannot help but compare the Federal Response to the Rising Rates in Autism, to FEMA’s response to Hurricane Katrina. With more fatalities of children this year compared to the last two years combined, and abuse and sexual assault cases rapidly increasing, our families are left to face very serious and often dire challenges of autism alone. And with that, we respectfully submit seven (7) recommendations for your consideration:

1. Declare autism as an epidemic.  We feel this declaration will necessitate actions to mobilize a crisis-level response. CDC has declared epidemics in everything from obesity to distracted driving. With a 78% increase in cases since 2002, Autism needs to be addressed as a true epidemic.
   
   
2. Create a national plan with measurable goals.  Currently there is no formal 10-year, 20-year, or 30-year plan that maps out access to qualitative data, treatment strategies, housing, adult programs, abuse prevention, training for schools and first responders, family services, early screening, safety initiatives, and access to critical resources on all fronts. Autism still remains an orphan among federal agencies despite its rapidly growing needs that cannot be met under the broader disability umbrella. Unfortunately, the Combatting Autism Act (CAA) is a drop in the bucket.
   
   
3. Create environmental research initiatives.  Studies have shown that among identical twins, if one child has an ASD, the other will NOT be affected 5% – 64% of the time. In non-identical twins, if one child has an ASD, then the other is affected about 0-31% of the time. Both suggest environmental triggers play a significant role. In fact, it is a scientific consensus that most cases of autism are caused by environmental triggers in genetically susceptible children.  Yet only a tiny percentage of research funds have been spent on determining these environmental triggers, while the majority of funding goes to relatively low-priority, low-impact studies. There has been very little Federal response to the environmental component of autism, thereby stalling targeted approaches in both prevention and treatment.
   
   
4. Provide the autism community with Autism.Gov.  Similar to the AIDS and Alzheimer’s communities, our families need easy access to multilingual and literacy-friendly information from federal, state, and local entities. Through the Administration on Developmental Disabilities, Secretary Sebelius awarded an $8 million grant to the ARC to build the Autism NOW program and web site, a public-address government site specific to autism.  While no doubt a fine organization within its area of expertise, ARC has no special expertise in autism. Further, the content of this central web site focuses primarily on the higher-functioning adult community and remains out of touch with the lower-functioning and severely affected population. Should families who are new to the autism diagnosis Google “autism,” they will not find this government website that has cost taxpayers millions of dollars. With a 78% increase since 2002, we feel administrations should take autism seriously enough to award our community Autism.Gov as a central source of information covering a wide range of topics, starting from diagnosis and early intervention, to treatment, safety and housing options.
   
   
5. Fund Studies that Compare Health Outcomes Between Vaccinated & Unvaccinated Populations.  Vaccines can cause immune and/or inflammatory injuries to the brain that eventually manifest as an autism diagnosis.  Bipartisan colloquia during passage of the CAA called on the new IACC to leave “no stone unturned” in resolving how many cases of autism are being caused by vaccines.  Despite fierce demands from parent advocates on IACC, this vital research remains unfunded.  Although the Vaccine Injury Compensation Program has paid hundreds of millions in judgments and settlements of cases resulting in a diagnosis of autism, the CDC continues to falsely claim there is “no evidence” that vaccines cause autism.  What remains unknown is the true magnitude of vaccine-caused autism.  This causation rate can most readily be determined by a comparative health outcomes study of vaccinated vs. unvaccinated children, even if based on historical data.
   
   
6. Create A 24/7 National Autism Taskforce.  IACC’s four-per-year meetings are insufficient. The Committee is also limited in what it can do, as pointed out in the still-valid 2006 GAO report,
   “The primary vehicle for coordinating federal agencies’ autism activities is the Interagency Autism Coordinating Committee (IACC), and although it has enhanced communication and coordination among federal agencies, coordination remains limited.”While the Committee’s primary mission is to facilitate the efficient and effective exchange of information on autism activities among the member agencies, autism remains somewhat of an orphan among federal agencies, having no parent agency to take“lead responsibility for addressing the service needs of adults with autism or services for children beyond education.”IACC also oftentimes falls prey to discussions and commentary that offer no transition into direct and meaningful application on the ground. The 2006 report noted,

   “Federal agencies support services for people with autism primarily through broader programs that focus on disabilities, and some services may not always be available to meet the needs of this population.”

   In short, we need a lead agency, and a 24/7 taskforce that works on autism and only autism.
   
   

7. Create Training Programs for Educators and First Responders. NAA, a member of APRAIS is seeing more parents in the autism community – especially those caring for someone with high-anxiety, or high-aggression autism – opting for homeschooling. We’ve gone from segregation to inclusion to isolation, which goes against the very goal of peer interaction and inclusion. With mounting news headlines covering cases of children stuffed into a duffel bag, or force-fed hot sauce or vinegar-soaked cotton balls as a form of “therapy,” our trust has become broken. A 2009 Government Accountability Office investigation reported that thousands of students have been physically injured and emotionally traumatized as the result of restraint, seclusion, and aversive interventions, yet a common-sense federal law that would prohibit airflow restriction has become impossible to pass.

In closing, the National Autism Association believes these seven actions are critical in responding to the current autism crisis and epidemic.

Respectfully submitted,

Lori McIlwain
Executive Director

THURSDAY, NOVEMBER 29th at 2:00 PM

RAYBURN HOUSE OFFICE BUILDING
ROOM 2154

PARENTS AND ADVOCATES:

PLEASE ATTEND, GET YOUR CONGRESSMAN TO ATTEND AND SPREAD THE WORD. COME TO WASHINGTON. BRING YOUR CHILDREN.

On Thursday, November 29th at 2:00 pm, The House Committee on Oversight and Government Reform will hold a hearing regarding the federal response to autism over the past decade. EBCALA, SafeMinds and many individual parents have worked hard to make this happen. Our understanding is that two panels are scheduled – one of government witnesses and one of public witnesses, including SafeMinds.

Do you think the federal government is doing enough about autism?

Do you think the Interagency Autism Coordinating Committee has helped your family?

Do you think federal policies have prevented new cases of autism?

Have you seen results from the government’s hundreds of millions of dollars in research spending?

If you answered “No” to these questions, here’s what you can do to help:

• Attend the hearing if possible. Bring your child or children if you can. Let’s try to make the hearing “standing room only”. Be visible.
• Contact your Congressman right now. Committee members and contact info are listed here - http://safeminds.org/government-affairs/hearing-contacts.html and it is critical that they attend the hearing. If yours is on the list, make sure you contact their office (leave a message) and ask that they attend. Other Representatives can be found here - http://www.house.gov/representatives/find. Ask them to attend the hearing and stay for the entire meeting. If they cannot, ask them to send staff. If you are going to Washington, ask for an office meeting, before or after the hearing, to talk about your family’s needs and concerns. Or meet with them Thanksgiving week when they are home in your district. Remember they work for you and this is the first time in 10 years that Congress has provided oversight of autism activities. Encourage them to get involved in the House Autism Caucus long term.
• Ask your Representative to make sure this is the first of numerous hearings investigating autism and affiliated issues. We don’t just want attention, we want solutions! This is especially critical if your Representative is on the committee. We need new champions to carry on after Congressman Burton retires.
• Individuals and organizations are able to submit written testimony to the hearing. If you are a member of a local autism organization, encourage them to participate by submitting a written statement. Statements become part of the formal record of the hearing. To submit testimony, you may fax it directly to the Committee at (202) 225-3974, or e-mail it to Beth Clay at beth@bethclay.com and she will ensure it is delivered to the Committee.
• Ask C-Span to televise the hearing. Call 202-737-3220 and politely ask that they televise the hearing on C-Span 3 which covers hearings. Tell them that this is an important issue that deserves more attention and why it affects you personally.
• Thank Congressman Burton for his advocacy over the years and for pushing for this hearing to happen by sending him an e-mail here: http://burton.house.gov/contacts/new or calling his office at 202-225-2276. You may also fax him at his Indiana Office at (317) 846-7306 or his DC office at Fax: (202) 225-0016

Stay tuned for more updates including the names of those who are testifying, materials to share with your Representatives and further details.

Thanks for your help in making this a meaningful event!

Source: Forwarded from our friends at SafeMinds.

Step 1: Google:  News Desk + Your City

Step 2: Note the Email/fax/phone numbers of the media outlets that come up in your search.

Step 3: Email or fax the media outlets the press release printed below, along with a personal message. Feel free to use the sample message on this page.*

Step 4: If you wish, call the media outlet to follow up. If interested, you may be asked to share your personal story, or provide the name of someone who would like to share their story.

*Sample Message:

Good Morning. 

New research findings published today in Pediatrics show that half of all children with autism wander away from safe settings. I am a local parent of a child with autism, and the wandering issue has directly impacted my family. Because this issue has very little awareness, yet tragic consequences, it is my hope that these critical new findings are shared with our community. According to the National Autism Association, more children with autism have died this year following a wandering incident than the last two years combined. For those in our area who may have a child or adult with autism — or encounter a missing person with autism — information provided by your media outlet could be crucial in bringing a child with autism home safely. Thank you for your consideration. 

Sincerely,
Your Name

PRESS RELEASE
October 8, 2012

Findings Published Today In Pediatrics Show Half Of Children With Autism Wander From Safety

Boston, MA – A new study published today in Pediatrics found that approximately half of children with autism wander from a safe setting, a rate nearly four times that of their unaffected siblings. The study, conducted by the IAN Project at the Kennedy Krieger Institute in Baltimore, is the first research effort to scientifically validate that elopement is a critical safety issue for the autism community. Advocates hope its findings will lead to much-needed safety measures and support for families struggling with the issue.

The study’s key findings showed that:

• 49% of children with autism wander/elope from safe settings
• More than one third of children who elope are never or rarely able to communicate their name, address, or phone number verbally or by writing/typing
• Two in three parents report their missing children had a “close call” with a traffic injury
• 32% of parents report their missing children had a “close call” with a possible drowning
• Wandering was ranked among the most stressful ASD behaviors by 58% of parents of elopers
• 62% of families with children who elope were prevented from attending/enjoying activities outside the home due to fear of wandering
• 40% of parents had suffered sleep disruption due to fear of elopement
• Half of families with elopers report they had never received advice or guidance about elopement from a professional

In 2010, the National Autism Association (NAA) sounded the alarm on the wandering issue when it made a statement before a federal committee outlining the need for wandering data and federal resources. “We began seeing a rise in wandering incidents and fatalities,” says NAA President Wendy Fournier.

According to NAA, accidental drowning caused 91% of wandering deaths from 2009 to 2011, and 23% of total deaths happened under the care of someone other than a parent. “This is not a ‘bad parenting’ issue,” says Fournier. “We hear from parents who sleep next to their child’s bed at night, or in front of the door. They live in constant fear of the worst.”

Fatalities in 2012 have doubled those of last year, and in the last two weeks alone, three children and one teenager with autism have died after wandering from safe environments. “Children with autism are drawn to water,” says Fournier. Fournier’s daughter wandered from her home in 2009 to seek out a neighbor’s pool. “Thankfully, our neighbor quickly spotted her and brought her home safely,” she says. “Out of the six locks on our front doors, our daughter is now able to get through three. Like most parents in the community, we remain on high alert 24/7.”

To combat wandering deaths, NAA created the AWAARE Collaboration, along with the Big Red Safety Box program – an initiative that has shipped over 5,000 free safety kits for autism families. For more information, visit http://www.awaare.org.

ABOUT THE NATIONAL AUTISM ASSOCIATION:

Founded in 2003, the National Autism Association is a parent-run advocacy organization and the leading voice on urgent issues related to autism safety, abuse, and crisis prevention. Its mission is to respond to the most urgent needs of the autism community, providing real help and hope so that all affected can reach their full potential.  For more information, visit http://nationalautismassociation.org.

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Media Contacts:
Lori McIlwain (919) 741-1646
Wendy Fournier (401) 835-5828

“You shouldn’t be afraid to send your child to school,” says Anna Moore. She’s referencing a problem facing the parents of special needs children: improper use of restraint and seclusion. Hands Off tells the story of how four families have been impacted by restraint and seclusion, and what they’re doing to fix the system.

Please make the time to WATCH and SHARE this film.  There are currently no federal regulations on the use of Restraint and Seclusion in our schools.  These practices can be deadly.  Contact your Senators and ask them to support S.2020 – The Keeping All Students Safe Act.  And visit our Autism Safety site for ways you can protect your child from this type of dangerous abuse.

Hands Off from Kayt Jonsson on Vimeo.

The National Center for Missing and Exploited Children (NCMEC) has recently published an important document for First Responders and Search & Rescue personnel in cases involving an individual with autism.

Today, we are asking you to be a part of a grassroots effort to distribute this information to first responders across the country.

• Please print the NCMEC document and deliver copies to your local sheriff, police and fire departments.
•  If you have a child at risk of wandering, also provide your local law enforcement personnel with a completed copy of NAA’s First Responder Alert Form including vital information on your child should he or she go missing.

At the Crimes Against Children Conference last month in Dallas, NAA Executive Director, Lori McIlwain joined Robert Lowery and Wayne Sheppard of NCMEC in a presentation entitled Law Enforcement’s Response to Missing Children with Special Needs/Autism.  Lori provided information on autism-related wandering and showed the compelling video below to conference attendees.  Please share this page far and wide.  Together, we can save lives.

For additional information and resources on wandering prevention and response, visit our websites at http://awaare.org and http://autismsafety.org.

Please watch this powerful report by Greg Groogan of Fox News in Houston featuring NAA Board Member, Leslie Phillips calling for cameras in classrooms to protect our most vulnerable children from abuse.

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