AGE OF AUTISM

Second Child with Autism Wanders, Drowns in One Week

 

(Note: This comment came in today -  "Make that three. We had a 2 yo boy who has autism drown over the weekend at his family's cottage (we live in Akron, OH). He got away from his mother and went right to the river. They found him within minutes, but it was too late. They need help for funeral expenses, as no one is prepared for those costs. We are helping to get the word out about the issue of wandering and autism in our community, as well as the family's need for assistance. Here is a link to a page they created for donations: https://www.giveforward.com/fundraiser/wnd2/in-memory-of-drew-Howell Thank you, Laurie Cramer Director, Autism Society of Greater Akron www.autismohio.org/GreaterAkron"

By Kim Stagliano

I awoke to an email on Saturday, the subject line read, "My son is missing." I paused for a moment. You know how email can be - lots of funky subjects that lead to phishing emails of all sorts.   But I opened and read the email.  And then I Googled the name of the child and the details that the sender had provided.  My God, her son was missing.

Owen Black had wandered away from his holiday condo in Perdido Beach,

Owen Black

Alabama and within two minutes, was out of his mother's sight, having slipped out the door.

I sent out a FB missive that hundreds shared and Tweeted for anyone in the area to try to help. Joe Scarborough from MSNBC, a Pensacoloa native, retweeted the call for help. Hundreds turned out to search. To no avail. Owen, like Mikaela Lynch last week, wandered and drowned.

Mikaela Lynch

THIS is the reality of autism and all the blue buildings and "It's just a difference" t-shirts and the "We don't need a cure - just accept them" in the world doesn't mean jack diddly squat. AUTISM IS AS DEADLY AS CANCER FOR MANY CHILDREN.  I woke up thinking of Owen. And now the news we all dreaded. AGAIN.

I Tweeted the sad news about Owen - and yes, I blamed his autism. Someone Tweeted back, "It wasn't the autism you moron" or something to that effect.  And then she blamed "negligent parents." Really? Must have been one of the "Autism is a difference not a disability" crowd.  Or perhaps a cruel skeptic - as there wasn't a scintilla of emotion for the child, for Owen.

I disagree. At all levels, from a preverbal child like Owen and Mikaela (and my own Bella) to an adult with Asperger's - autism affects day to day life in myriad ways. And yes, some are deadly. And as far as "negligent parents" go? Well, yes, I am quite sure there are rotten, negligent parents in the autism community, just as there are anywhere. The parents I have met have moved heaven and earth to keep their kids safe. I know one Mom who slept on a mattress barricading her front door in case her son tried to slip out at night. Another Mom whom I know to be a stalwart of the community, her son was found walking along a busy state route having slipped away - alive by the grace of a guardian angel. I lost my own daughter in Orlando as she quietly slipped out a hotel room door and got onto an elevator to the lobby of  a 22 story property on 2200 acres while I was in the bathroom.  We are not negligent - we are human.   I remember being pregnant with Bella and so tired by 2pm that I had to sleep. I put on the TV and locked my bedroom door and put a bell on a chair in front of the door, knowing that Mia and Gianna would knock the bell to the ground and I'd hear it before they could leave my room. Just to get a 30 minute nap. 

Heartbreaking Story: Adult Son with Autism Left to State

Managing Editor's Note: Below is a sobering look at the future for many familes as exhaustion of mind, body and savings in conjunction with intense care for an autistic adult child becomes untenable. The moderate to severe autism population has few options in our current disability systems.  Competitive employment might be a stretch, day programs are often "daybysitting" at best, and housing options are limited, if available at all. The media is starting to wake up to the flood of children headed toward age 22 and the ramifications for state and Federal budgets alike. Not to mention the very real human toll of pain, heartache and worry.

"I'm no longer able to provide supervision."  Listen to this Mother - she is decribing the autism so often overlooked - intentionally - by organizations and the media alike.   Really listen to her - she is knowledgeable, up to date on how to care for her son and broken hearted. She is us.

Light it up true. 

By Anne Dachel

A Tragic story out of Canada
 
It started with this story on April 26, 2013, Canadian TV: Decision to drop off autistic son gut wrenching says Ottawa couple.
 
Watch the video here:  Exclusive: Couple leaves autistic son in care of the state
(Her adult son with autism functions on the level of a two year old.)
 
"Decision to drop off autistic adult son 'gut-wrenching', says Ottawa couple:


Watchi this video and listen to the mother talk about how Philippe recently wandered away. He is in need of constant supervision.
 
"Philippe requires nursing care for his diabetes as well as his bathing, toileting and personal care. His food intake also has to be strictly managed because of his diabetes."
 
"Parents of autistic adult son not alone in their desperation, say advocates"

John's Missing: Autism, Wandering and Why We Need Action Now

Managing Editor's Note: For  information on wandering and an action tool kit called The Big Red Box, please visit National Autism Association's AWAARE program.

By Mark Bucknam

It was Tuesday, April 25, 2011, a beautiful warm spring morning in Potomac, Maryland, a suburb of Washington DC.   At John’s house, a radio alarm clock sounded at 5:45 a.m., softly delivering the news of the day, growing gradually louder.   John’s dad quickly silenced it, wanting to allow his wife another 15 minutes of sleep before her alarm signaled the start of her day.  Raising John, a moderately autistic adolescent, required a team effort by his parents.  John’s dad awoke first to prepare vitamin and dietary supplements that doctors believed John needed to compensate for deficits in his metabolism—deficits common among autistic children.  Mom would follow soon after, to make sure the kids were properly dressed and fed before getting on their respective school buses.

A few weeks from his 15^th birthday, John had the functional intelligence of a boy half his age, but none of the emotional intelligence.  That was autism…or at least the manifestation of autism in John.  Every autistic person is different, though many share similar intellectual deficiencies, quirky behaviors, and most tellingly, social deficits.  They lack interpersonal skills. 

Like his older sister, John had bright blue eyes and red hair, though his was cut fairly short, hers was long and curly.  John was 5’8” tall, trim and solid at 140 pounds.  He usually slept well, but was full of nervous energy during his waking hours. 

It had not been a good night.  John had barged into his parent’s bedroom at 2:30 in the morning, fully awake.  His groggy parents teamed up to coax and cajole him back to his own bed.  His mom stayed with him a while, until he settled down and seemed ready to go back to sleep, before she headed back to her own bed.  John’s dad ventured downstairs to the first floor to check the lock on the refrigerator and the lock on the door from the den to the garage to make sure that they were locked —these were the two locked doors that the family used most often and most likely to be accidentally left unlocked. 

For John’s safety, everything had to be locked, either to keep him out of it—like the refrigerator, the kitchen pantry, the basement, and the guest bedroom—or to keep him from getting out of the house through it—like the front door, the patio doors, and the door from the den to the garage.  The locks were identical, excepting for the one on the front door.  They were all small combination locks with three rotary wheels containing numbers from 0-9 used to set the combination.  All of the locks were set for the same combination—a number that marked the month and day of John’s dad’s birthday. 

Downstairs early that Tuesday morning, John’s dad turned on the coffeemaker and a small TV, which quietly detailed world news.   He measured out John’s morning supplements – making sure not to confuse the morning batch of vitamins with those John would get in the afternoon, or the ones he would take just before bedtime.  By 6:00 a.m., John’s dad climbed back up the stairs and quietly slipped into John’s bedroom. 

John’s bed was empty. 

President Obama: 1 in 50 American Kids with Autism?

From the Autism Action Network. Email The White House (scroll down the link to easily send an email to your representatives and the President) and call the  White House Comments Line 202-456-1111 to tell the President that autism is a crisis from coast to coast. Thank you Autism Action Network. Please follow AAN on Facebook.

As most have you have probably heard, a new study from the Centers for Disease Control and Prevention (CDC) found that the autism rate among American children in the US is now 1 in 50, and since boys outnumber girls with autism by a ratio of 4 or 5 to 1, somewhere between 3 and 4 percent of all American boys have an autism spectrum diagnosis.  Read the complete report by Blumberg et al. here.

Any expressions of concern from anybody with the power to do something about this disaster? No . And the press, as usual is soft pedaling the findings. Fifteen years ago the autism rate was 1 in 10,000, 12 year ago it was I in 2,500, 10 years ago it was 1 in 1000, and so on. When President Obama was elected in 2008 the official rate was 1 in 150, then it went to 1 in 88 and now it is 1 in 50. Where is it going to stop?

And Thomas Insel, the federal “Autism Czar” who heads the Interagency Autism Coordinating Committee, is still wondering, “If there is a true increase in children affected...” Thomas Insel needs to be fired. He is clearly not up to the job.

In 2008 presidential candidate Senator Barack Obama promised to be the “Autism President.” But what has he done? We are spending far less in research per diagnosed person than we were under George W. Bush. The only generally recognized method of addressing autism, applied behavior analysis, was left out of the essential health benefits package in Obamacare. And as we enter his fifth year in office the CDC still can’t even figure out if the rate is really going up. I am reminded of the song by Stevie Wonder, “If you really want to hear our views, you haven’t done nothing. “

Please  send an email to the President, your two United States Senators and your member of the House and ask when are they going to take the autism epidemic seriously and do something. We suggest a start by firing Thomas Insel.

And you might want to call the Whitehouse and ask politely when the President is going to become the “Autism President,” and he should start by firing Insel.

Why did Robert Ethan Saylor Die: Op-Ed by James Mulvaney

Managing Editor's Note: Thank you Jim Mulvaney for taking an active role in protecting not only your son, but all of our children. Jim is married to author, journalist and HuffPo blogger Barbara Fischkin. I consider Barbara my writing Godmother and am always grateful for her and Jim's work.  Jim wrote an opinion piece for the Washington Post about the death of a man with Down Syndrome. John Jay College also acknowledged Jim's piece - Adjunct Professor James Mulvaney’s Op-Ed on the Death of a Developmentally Disabled Man in Police Custody Published in the Washington Post.

"I am the father of a young adult with severe autism. In 2007, I joined a team of educators, health professionals, parents and law enforcement officials to create a manual for first-responders in dealing with developmentally disabled subjects. The manual was adopted by the Nassau County, N.Y., police department, and its officers received mandatory training. The manual has been distributed to departments around the country and modified for local needs...."

Why did Robert Ethan Saylor die?

By James Mulvaney, March 08, 2013

Where is the public outrage over the death of Robert Ethan Saylor, killed in January while being taken into police custody in Frederick for the crimes of petty larceny and, perhaps, disorderly conduct?

Saylor, 26, had Down syndrome, a genetic defect that can cause cognitive deficiencies, poor judgment, impulsive behavior and other issues. Unlike many other disorders, it is associated with recognizable physical traits, especially unique facial features. Photographs show Saylor to have had the classic “Down” look.

He had gone to the movies to watch “Zero Dark Thirty,” a charged film about the raid and assassination of Osama bin Laden in Pakistan by Navy SEALs. Like many others who have seen this film, Saylor wanted to watch it again, so he remained in his seat when it was over. His health aide had stepped out of the theater temporarily.

When Saylor refused to leave the theater, a conflict arose, and three off-duty Frederick County sheriff’s deputies — working as freelance security guards at the shopping center where the theater is located — intervened.

Please read the rest of the article at the Washington Post website:

 

Day 22 of Autism Agony at Loyola U Medical Center

Update 3/12. Alex's Mom Dorothy Spourdalakis has a care plan meeting scheduled  at the hospital - which, if she does not agree fully to the terms, will mean the removal of her son from her care and his being placed in DCFS.



This is Alex Spourdalakis, now 22 days at Loyola University Medical Center in Chicago, Illinois with debilitating GI pain.  Everyone in the autism community should be horrified and galvanized to action by the lack of care he has received.  Please contact the Joint Commission customer service line at:  630-792-5800. This is a governing body that accredits medical institutions. 

Politely tell them you are calling about the lack of medical care for Alex  Spourdalakis in the Loyola Healthcare system.   They need to receive as many calls as Loyola did 3 days ago.  They need to know what is happening behind the doors of the institutions they are accrediting.  

For background, read The Case of Alex Spourdalakis: Continued Ineptitude at Loyola University Medical Center  and our original post, Day 19: Chicago Hospital Locks Down Autistic Patient.

The members of AIM  and Alex's mother now fear for Alex's life as the result of medical negligence at Loyola University Medical Center.  If this was a typically developing child tests of every sort would be run to determine what is wrong.  Alex is holding his stomach and his head, IN PAIN.  Where is neurology?  Where are the gastroenterologists?  WHERE ARE THE "AUTISM SPECIALISTS"? 

The Case of Alex Spourdalakis: Continued Ineptitude at Loyola University Medical Center

By Lisa Goes

On Sunday morning, Jeanna Reed of AIM (Autism is Medical) and I visited Dorothy and Alex Spourdalakis, who are now on their 21st day in the Loyola Healthcare System.  (From left, Jenna, Godmother Agatha, Alex, Lisa).

The restraints have been removed and replaced with a nameless security guard dressed in scrubs and a charge nurse by the name of "Debbie" who wore no identification. They sit in a dark corner of Alex's room beside the door, in silence, until he emotes.  

"Don't spit Alex!  Don't hit Alex!", the guard barks like clockwork as Alex rises from his bed and lumbers toward him.  

The phone and call light have been removed from Alex's room as both were considered "safety concerns."  Dorothy must now leave the room to make a call, leaving Alex unattended. 

While the security guard remained a constant, another nurse we could not identify by badge entered and left.   A physician who referred to himself as "the hospitalist" and a colleague came in to examine Alex.  

By that time, he'd awakened and was moving about the room, grabbing food and attempting to speak.  While the staff would not allow a phone or call light, a set of silverware, knife included, was present on a meal tray.  

With an air of affability completely inappropriate for the occasion, the colleague smiled at Alex and told him he was going to examine him.  With little protest and a few pulled chin hairs, he was able to briefly listen to Alex's lungs and midsection.

As the mother of a child with autism, I was wondering how Alex was keeping it together. As he rocked naked on a  bed amidst a room full of strangers, he presented only sensory problems, which he self-regulated by chewing on a strip of sheet from his bed.   Despite Loyola's advertisement of medical professionals that are "always in reach," there was nary an autism specialist among the group. No therapists. NO BCBAs to educate the staff handling him.  No occupational therapy. Not even a chewy tube to help facilitate his need to bite. 

One of the nameless nurses questioned Dorothy's judgment in allowing Alex to chew on a torn piece of sheet. "I'm just concerned he'll choke" she said.   With an educational and articulate tone of authority, Dorothy explained how the sheet was soothing his sensory needs. Instead of justifying his behavior, or lashing out at her ignorance, Dorothy simply educated her.  When Dorothy speaks, though, most staffers gaze at the floor and roll their eyes. 

Day 19: Chicago Hospital Locks Down Autistic Patient

UPDATE 3/9:  Fox Chicago ran a story on this situation and Philly picked up this story, read and watch video here.

Managing Editor's Note:  Loyola Medicine in Chicago, IL has as its tagline, "We also treat the human spirit." But they forgot the ending, "..like a dog."

Email Ann Dillon in Media Relations with the link to this post.  Tweet them our link @LoyolaHealth.   Share our link on their Loyola Health FB page.

LoyolaMedicine.org

Vice President and CNE, Paula Hindel 708-216-3802
CEO Larry M Goldberg  708-216-3215

By Lisa Goes

Patient Safety Awareness Week, Spotlighting Loyola University Medical Center: A Parent’s Perspective

“I need to tell you Alex’s story.” Dorothy Spourdalakis, Alex’s mom spoke professionally with a deliberateness I was not expecting—considering she has been by Alex’s bedside awaiting proper medical care for his gastrointestinal symptoms, for 19 days.

19 days. 456 hours. 27,360 minutes. 1,641,600 seconds.

This is Alex. 

The irony of this week marking The National Patient Safety Foundation’s “Patient Safety Awareness Week” is not lost on Dorothy. According to her, at 14 years of age, Alex has a diagnosis of severe autism and cognitive impairment. He is non-verbal. In October of 2012, Alex began to suffer neurological events that prevented a healthy sleep cycle. He was awake for many hours at a time. Agitation and aggression ensued as a result of sleep deprivation. During this time, symptoms and behaviors that were indicative of severe gastrointestinal distress developed as well.  A cycle of constipation, diarrhea and formed bowel movements surfaced and became a chronic problem. On February 16th at 5:00 am, with the assistance of police and paramedics, Dorothy took her inconsolable and highly-distressed non-verbal child to Gottlieb Hospital in Melrose Park, Illinois.

Because of Alex’s physical aggression, he was placed in locked restraints. At that time, Dorothy did not know the ER would be their home for the next several days, as Alex lay naked, in locked restraints, suffering bouts of violent vomiting, severe constipation and diarrhea. Neither she nor Alex bathed for the next 13 days while hospital staff and administrators attempted to devise a plan to care for Alex. “He was given Colace for his constipation and sometimes it would take security staff and nurses more than 15 minutes to arrive to help unshackle him so he could use the bathroom,” Dorothy explained. “Alex would scream as best he could when he knew he was going to have a vomiting episode, but security took several minutes to respond so Alex would lay in his own vomit, waiting to be released by a representative of security. He would be wiped down and returned to the same restraints.”

Autism Is Medical (AIM), a support group that helps parents identify the underlying medical issues
associated with the label of autism, was contacted on Sunday, February 24th.  They were enrolled to help the staff at Gottlieb understand Alex’s complex medical profile. According to one of the AIM representatives,  “Clearly, what they are doing isn’t working.” The AIM advocates,(all mothers to children fully recovered from iatrogenic autism), went on to say,  “Currently, this child is being treated with Lorezepam, Oxezepam, Benzatropine, Zyprexa and Ativan.  These drugs do nothing to address the intense gastrointestinal issues he is experiencing, nor do they alleviate his pain.”  Dorothy explained that Alex remains in a highly-agitated state. He was also prescribed Depakote, to which he had an adverse reaction (elevated lipase). In addition to these issues, Alex’s mom explained he has many allergies. Both physicians at Gottlieb and Loyola told her that IgG and IgE food sensitivies were invalid. Dorothy was told by the attending physician to give her son milk at Loyola, not in the ER. When a possible reaction occurred she was told the bed caused his contact dermatitis.

The Wizard of Extortion: The Pharmaceutical Epidemic and Why the Judge Rotenberg “School of Shock” Endures

By Adriana Gamondes

On Febrary 22^th, 2013, Office of Council member Vincent Gentile issued a press release calling for the removal of all New York students of the Judge Rotenberg Center in Canton, Massachusetts.

Councilman Gentile is no doubt serious in his campaign to pull New York students and funds from the Judge Rotenberg Center and sincere in his outrage at the school’s aversive and dangerous practices.  The following is not meant to express cynicism towards this particular effort and it would be a certain victory for human rights if this campaign succeeded where others have failed. Most have probably noticed by now that, despite repeat major media exposés, clusters of blog criticism, ineffectual clicktivism and even a request filed with the United Nations Special Rapporteur on Torture in 2010 to protest human rights violations, the Judge Rotenberg Center has weathered most storms.

But if the Rotenberg Center didn’t exist, what would the people and organizations instrumental to sustaining the epidemics of childhood developmental disorders and chronic disease moralize about in order to prove they don’t always defend institutional policies? What would those who profit by and suppress constructive solutions for these epidemics point to in order to comparatively diminish how their actions contribute to disaster and the mounting toll of failing health and mortality among American children?

As an estimated three or more individuals with special needs are killed every week in US schools and institutions due to abusive practices; as the news reports more and more children with autism arrested in schools, brutalized by police, denied organ transplants, found face down in ponds and subjected to a lottery for services; and as disability services around the country are trimmed to the bone; as the US drops to #49 on the world infant mortality index; as 1 in 8 children of Somali immigrants in Minnesota are diagnosed with autism and the national rate soars beyond the official 1 in 88;  as toddlers are drugged with increasing frequency; as the vaccine schedule continues to expand and the drum beat of denial over a host of potential environmental causes  and co-factors involved in the rise in disability in the US grows louder, in terms of the mainstream mismanagement of what may be one of the worst medical disasters in history, to be the “leper with the most fingers,” you might have to find another “leper” with stumps in place of arms.

That bar is kept low as long as the JRC exists. To be a champion of children’s rights and a hero for the disabled, all any mouthpiece has to do is criticize the Rotenberg Center.  Meanwhile Matthew Israel, the center’s founder, smiles the wistful, knowing smile of the contracted fall-guy and extortionist. And the center—founded in 1971 and renamed for the judge who defended the institution against the first wave of attacks on it the year the autism epidemic was launched and the year Prozac was first marketed—has endured all the while.

The low-cost way to explain the mystery of the JRC’s endurance: whenever the next crusader in a long line of crusading bureaucrats attempts to shut down the “school of shock,” a handful of parents of the center’s students go up into arms and protest that the Rotenberg Center provided the only therapy that stopped their children from injuring themselves or others, from smearing feces on every surface or otherwise acting like crazed animals.

This explanation is favored by both those who defend the institution and those who want to be perceived as protesting it alike. But even those who genuinely protest the center’s practices are either blind to the machinery which has sustained the institution for so many decades or loathe to commit the politically suicidal act of addressing it. The latter are probably the most hypocritical if they grub for humanitarian “creds” while still performing the table-cloth trick of leaving in place the factors which feed the school.  But even the sincere may eventually throw up their hands as they start stumbling over the skeletons pouring out of every dark “closet” that surrounds the issues of disability and institutional abuse in the US. At least in the past, official demands for long term research on outcomes for the JRC’s specific practices have tended to fade to whispers over and over again.  

Sadly, the airing of the now infamous JRC torture video and the perpetual wilting of each round of public outrage in the press might be used as a kind of litmus test or even public inculcation exercise: if the public sees the video and reads of the campaigns to close JRC and the center is not closed forthwith this time, this can be bureaucratically interpreted as a sign the public tacitly approves and will allow it. 

But even if current campaigns finally succeed, the Rotenberg Center is a hydra: closing the center without investigating the real reasons it’s endured cuts off only one head. The same abusive practices will crop up, even if by stealth, in other institutions. Again, why?

Gentile Calls for NY to Remove All Children From Rotenberg Shock Punishment School

GENTILE CALLS ON CHANCELLOR TO REMOVE ALL NYC CHILDREN FROM CONTROVERSIAL SCHOOL ONCE AND FOR ALL

CITY HALL – In light of recent developments, Councilman Vincent J. Gentile, a long-time advocate for New York’s most vulnerable, is calling on New York City Department of Education Chancellor Dennis M. Walcott to remove all New York children from the infamous Judge Rotenberg Center in Canton, Massachusetts once and for all.

The Centers for Medicare & Medicaid Services (CMS) sent a letter to the Massachusetts Executive Office of Health and Human Services saying it would no longer allow federal Medicaid money to be used by anyone who lives at a facility that employs electric shock intervention, even if that person is not receiving the treatment themselves. Massachusetts has begun notifying the families of its students that they must either move to a new facility or unenroll from state benefits immediately.

“CMS made the right decision – no federal tax dollars should be going to an institution that uses these electric shock techniques on children. It’s time New York State and New York City to do the same – no city or state money should go to support an institution which subjects its students to these cruel and unusual forms of ‘behavior modification’. The Rotenberg Center in Massachusetts where 120 NYC developmentally disabled students currently attend, is in gross violation of the most fundamental standards of humane treatment of people with disabilities”, Councilman Gentile said.  “With CMS pulling its funding, we are one step closer to shutting down Rotenberg once and for all.”

As a New York State Senator, Councilman Gentile introduced legislation to mandate oversight and accountability when developmentally disabled students are sent out-of-state for education and treatment. Then, in late 2009, Councilman Gentile sponsored “Billy’s Law” which requires the Department of Education to provide the City Council with bi-annual reports monitoring all out-of-state residential facilities that house New York State children for specialized educational services – both pieces of legislation passed unanimously.

Patterns In Chaos: Child Psychiatry, Violence and Autism

By Andrew J. Wakefield

Patterns in chaos: understanding acts of “senseless” violence (also available at The Academic Integrity Fund site.

At the Royal Free Hospital, London, in 1996 my gastroenterology colleagues and I were reliably informed by our attending child psychiatrist, that acts of extreme violence, such as the tragedy of Sandy Hook Elementary School, were perpetrated more commonly by those with Asperger’s syndrome (AS). Like so much that child psychiatry has had to offer - then and since - this assertion is misleading.

In support of his statement, the Royal Free’s child psychiatrist, Dr. Berelowitz, cited the example of Martin Bryant who had recently been imprisoned for committing 35 murders and causing 37 serious injuries in Tasmania in April 1996, in what became known as the Port Arthur Massacre. Bryant, according to Dr. Berelowitz and later, Wikipedia, had AS. Both sources turn out to be incorrect: the report of Paul E. Mullen, Professor of Forensic Psychiatry at Monash University, Melbourne, Australia, who examined Bryant in prison in May 1996, tells the story. In his criticism of an earlier diagnostic assessment by a Dr. Sale, Dr. Mullen wrote:

“Mr Bryant craves the attention of others. He desires relationships but fails to effectively communicate with others unlike the patients with Asperger's who are blandly indifferent to others. Mr Bryant also lacks, in my opinion, the central features of this condition, which are repetitive activities, unusual skills with all absorbing obsessive interests and problems with motor coordination. He also showed marked delay in the acquisition of language skills and required remedial therapy for this language deficit which is contrary to the picture found in those with Asperger's Syndrome.”[1]

While my experience of 18 years suggests to me that many with AS are not blandly indifferent to others, Bryant’s speech delay precludes this diagnosis. In addition, Bryant had an IQ of 66 – well below the average or above average IQ that experts consider necessary for this diagnosis.[2].

More recent reviews of the relevant medical literature do not support an association between an increased risk of violence and AS.[3]. This fact is crucial, lest the wider community stigmatize a population of individuals that are already poorly served and badly misunderstood by many. This does not mean, however, that those with AS are not at increased risk of violence under certain circumstances, as discussed below.

A further Web-based review (see below) of acts of violent crime similar to those seen in Port Arthur, Colombine, and Connecticut reveals that the majority of cases are not associated with any evidence of an ASD diagnosis in the perpetrator at all. So what do these tragedies have in common?

A common denominator

As with all tragedies of this nature, many try to make sense of the “senseless.”  In the case of Martin Bryant, Dr. Mullen failed. He concluded his expert psychiatric report with the following:

“The enormity of Mr Bryant's crimes call out for some explanation equally dramatic and extraordinary. It is not to be wondered at that the media have either attempted to portray Mr Bryant as afflicted by a dramatic mental illness, such as schizophrenia, or to be some kind of evil genius. In my opinion the origins of this terrible tragedy are not to be found in a single dramatic and sufficient cause, but in the interaction and combination of a range of influences and events. We may never know fully the intentions and state of mind which led to the killings, but a number of the contributions are apparent.”

Georgia Mountains YMCA Dismisses Boy with Autism from After School Program

By Sarah David

I am a newly single mother facing the daunting task of reentering the work force and trying to earn a college degree while still being a good mommy to my two kids.  We are new to the area we live in, because of the move, because of the end of the marriage.  So when I found out that in Hall County (Georgia) Schools there is after school care that takes place at the school run by the YMCA I was very grateful.  My son Logan, who is on the spectrum, and my daughter began attending the after school child care program at their school when I recently found a job.   

Before the YMCA accepted my son into the childcare program I had a conversation with the program director and on site staff about his condition and they seemed understanding.

My son’s special education teacher and I met with the YMCA staff to discuss that he exhibits elopement behaviors, a common symptom of autism. This simply means he will try to leave an enclosed space.

The YMCA staff member assured me they would not allow my child to leave and that they would provide an additional staff member -- so where normally there are two adults, they would add a third -- for supervision on the days my son was scheduled to attend. However, when they were picked up, there was never another staff member there.

On Wednesday, October 24th the staff at the YMCA called a meeting with me. First I was asked to pay extra to keep my son in the program, and then I was told that he was no longer allowed in the program.  Previous to this meeting there had never been any notes sent home about behavior incidents.  There were only two voicemails to me in one day alerting me to the fact that he had tried and failed to leave the building. 

The director of the After School programs told me in the meeting the reason for his dismissal was that he was a flight risk due to his autism. Once outside the meeting room and in front of additional staff and YMCA patrons, staff members denied having kicked my son out.  I asked several times whether they could attend that day but all I got was pleas to discuss it privately.  It must have been very embarrassing for them.  Admittedly, I was upset and even told some poor girl who was only there to apply for a job that she would soon be working for a company that doesn’t allow kids with autism to their programs.  They had been in the program for just over two weeks. 

Falling A Play About Autism's Less "Fundraiser-Worthy" Side

Falling, written by Deanna Jent, is a play now running in New York, off Broadway.  Autism, like many difficult topics in America, is often sanitized  to the point of saccharine caricature.  Not Falling, which brings the audience into a home with a severely autistic man - an 18 year old boy.  Perhaps it's your home? (Photo Julia Murney and Daniel Everidge star in 'Falling,' now playing off-Broadway. / AP/David Gersten & Associates)

Here's part of the review from The Asbury Park Press by Bill Canacci: Sometimes we need more than statistics to help us understand. That is likely why Deanna Jent wrote “Falling,” a powerful new play about how a couple copes with their 18-year-old autistic son.The numbers tell one side of the story: One in 88 children have been identified with an autism spectrum disorder. For boys, it’s 1 in 54.But in 75 minutes, Jent gives audiences a glimpse of what families touched by autism likely have to go through every day.

Here's the review in Newsday:

This sounds like a Lifetime movie, but don't be fooled. "Falling," which has practically crept into town from the Mustard Seed Theatre in St. Louis, is an unflinching and unsanitized drama about family life with a severely autistic 18-year-old boy.

Directed with enormous sensitivity and edge by Lori Adams, Deanna Jent's exhausting, strangely exhilarating new play deserves to be far more than a destination for autism fundraising benefits and people with personal investment in that isolating world.

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

Managing Editor's Note: Thank you to National Autism Association for spearheading this study so that doctors around the globe wake up to the ravaging effects of the autism epidemic.  We all do our best to shed light on the tragedies (and triumphs) of daily life with a child on the spectrum - but doctors tend to listen best (insert cough here) to formal studies rather than to informed parents. If YOU have a child who wanders - or know someone who needs help in their household, we implore you to visit AWAARE.org.

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.

Autism College News: Mighty is the Fear

Managing Editor's Note: Thank you to our friend Chantal Sicile-Kira who allowed us to excerpt this post from Autism College.

Life with Autism: Mighty is the Fear

Two caregivers were arrested this past week in Valley Center (near San Diego, CA) for allegedly abusing a severely autistic non-verbal young man in his home. They had been in the family’s employ for over two years and were caught on videotape over a three week period.

This is a parent’s worst nightmare come true; and if it’s a nightmare for the parent imagine what it is like for the victim.

According to reports in the media, the mother, Kim Oakley,  saw changes in her son, Jamey, indicating he appeared to be unhappy on the days following the men’s shifts. Kim also realized Jamey was trying to communicate something to her. When she questioned the caregivers, “They blamed everything on his severe autism,” according to newspaper reports. Kim set up a surveillance camera after noticing that the wires to a baby monitor had been cut. Videos shot over a three week period led to the arrests.

My heart goes out to Kim and Jamey and the rest of the family. Unfortunately their story is not unique and it highlights the difficulties of all families requiring caregivers and support staff for their severely autistic loved one.

How often do we hear about a non-verbal person that “his behavior is due to his autism”? Bull! All behavior is communication and Kim, like most moms and dads, know this. Watch “Autistic Cases ‘Autism Experts’ Run From”    that Kim Oakley posted on YouTube. Jamey’s behaviors  in this video were particularly bad because he had a Urinary Tract infection and once it was diagnosed and treated, he was better. But is took five days to get it taken care of. Read the full post HERE.

Back To School: Are Cameras Needed?

Our friend Leslie Phillips of National Autism Association asks an excellent question in this important back to school article: "You have to ask yourself, why don't they want them?  Why don't they want us to see what's happening in the classrooms," said Leslie Phillips, mother of an autistic son and board member of the National Autism Association.

Phillips says Texas school districts have no credible excuse for prohibiting cameras.

"It's like throwing kerosene on a fire and expecting it not to burn.  If you put poorly trained teachers and aides in these classrooms with children who have these challenges and nobody to watch out for them," said Phillips.

My daughter's abuser was caught, arrested and convicted because of cameras on her school bus. I'm all for cameras in schools. KS

HOUSTON (FOX 26) -

In a world where every child needs protection, Hailey Penny will always need more than most.

She trusts everyone, without condition, especially her parents and her teachers.

But by fall 2010, the once perpetually cheerful 10-year-old had spent months fearful and deeply withdrawn.

"We were at our wits end.  We were literally racking our brains, in tears wondering, what's going on with our child, you know?" recalled David Penny, Hailey's father.

On an afternoon the Pennys will never forget, the "cause" came home on the body of their disabled child in the form of scrapes and heavy bruising.  They were injuries, an investigation quickly confirmed, that were inflicted by a teacher's aide in Hailey's New Caney ISD Special Needs classroom.

"It hurt me," Hailey said before hiding her face in her hands.

"If I was to put bruises and marks on my child like that or any child for that matter, they would put me in jail.  I would be in jail for child abuse! How are they any different?" asked David.

But in this case, the teacher's aide who hurt Hailey walked away.  Montgomery County prosecutors claim they lacked evidence to convince a grand jury, the kind of proof that could have come from a surveillance camera if the classroom had just had one.

For Want of a Nail: School Abuse and the Debate Over Cameras to Protect the Disabled

By Adriana Gamondes

In our district school, right down the hall from the cinder block scream room, there’s a ten foot statue of Lincoln with the usual engraved quote about liberty, equality and honesty. We think the school should take it down.  

According to my mother’s family tree, Lincoln is some kind of distant cousin. But the irony that the school mistreated descendants of its own mascot isn’t the reason we think the school should remove the statue.  Lincoln didn’t set much stake in perceptions of ancestry—sort of the point of his legacy. The replica is just misleading.

This is a school which chased out a brilliant special education director six years ago because she tried to get the school in compliance with the IDEA (Individuals with Disabilities Education Act) for wider inclusion of disabled students. Like many wealthy districts concerned with appearances, the school spends a fortune to ship children with less-than-high-functioning disabilities out of district and out of sight rather than using funds to build state of the art programs. Some families like their children’s outplacements in private programs that they might not otherwise be able to afford; some are coerced into accepting the placements and would prefer inclusion.

In our case, the private schools also tend to be a long haul away from the community and disabled children often spend more than fifteen hours a week riding buses, sometimes on icy, poorly plowed roads.  Some kids stim on bus travel—ours don’t. And considering that our district fired a bus driver for protesting faulty brakes, we drove.  

Even with the high level of outplacement, the visible rate of autism among seven and eight year olds in our district is the highest I’ve ever seen or heard of—Minnesota Somali high.  Since the rate in Massachusetts is already estimated to be as high as 1 in 48, this town may have a lot to hide—a spike within a spike. It could make prospective business and home buyers wonder what’s in the water. It could hurt real estate. 

Whatever the reason, it was clear from the start that the district didn’t want our children in the school. At first we didn’t either; but this was due to complex health issues, not degree of disability. We saw it as a temporary measure. The children had made such enormous progress from simple changes to diet that we were concerned about food infractions and losing ground in development. We thought a high staff ratio in a private school might be “safer” in this sense. But when the children were mistreated in the private school, and we decided we wanted our children in a less restrictive environment and close to home, we discovered that private placement can be a trap: the district could use past “restrictive” placements to prevent inclusion with typical peers in the future. 

This is pretty much what happened— the district took the private school’s denial that abuse had occurred at face value, falsely framing the children as “aggressive” and us as spurious reporters by way of denying “LRE” or “least restrictive environment”—sped-speak for inclusion.

For the school, denying inclusion really wasn’t about degree of disability either but that we stank of advocacy. Coincidentally, the district and the private school received a letter explaining precisely why the kids were being officially withdrawn from the private school—from the physical assault to the strip search and lack of accountability—the very day the Occupy movement was launched in 2011 and we were seen as nothing more than troublemakers trying to “occupy” the district. Knowing that our issue with the private school had been mistreatment, the district principal threatened to build a seclusion room just for our kids in an openly recorded meeting. His feet did a little dance under the table as he issued the threat while simultaneously dangling admission over our heads. By that time, the children had been out of school for more than two months and it would be another two months before the district finally relented and agreed to provide them with a Free and Appropriate Education, but only on an irregular “trial” basis.  Despite the coercions, we still objected to the use of seclusion in that meeting for the record: restraint and seclusion for noncompliance are illegal in this state unless parents agree to it for supposedly “therapeutic” purposes.    

In This Day and Age: Abuse, Deaths and Injuries in Schools and Institutions and the Debate Over Cameras to Protect the Disabled

  

By Adriana Gamondes

According to a 2008 study performed in Denmark, the mortality rate for individuals with autism is twice that of the general population. A more recent Swedish study found the rate 5.6 fold higher than expected. Whichever is the true number, the message is clear: far more disabled die young. Among the more common causes of death such as seizure, accident and circulatory disease, asphyxiation is included among unnatural causes.   

Michael Carey’s thirteen year old son was one of the victims of “increased mortality”—a euphemism for the violent death Jonathan Carey suffered at the hands of staff at the O.D. Heck state residential care facility in New York. Since Jonathan’s death in 2007, Michael Carrey has lobbied for improvements within the state’s dangerous disability system, including calling for video and audio surveillance of all special needs classrooms, on transportation, in group and residential homes.

What happened in place of the changes Carey battled for appears to be worse than nothing. The bill signed by Governor Cuomo in June created yet another go-between agency to divert calls and reports of institutional abuse away from 911 and law enforcement. The bill also gives power to the governor to appoint institutional officials and makes the prosecution of accused care workers and administrators more difficult than it already was by raising the bar from “credible evidence” to “preponderance of evidence.” Carey believes the bill was clearly intended to prevent reports of institutional abuse from reaching the justice system.  

Listen to Carey discussing the bill:

Even after Jonathan’s death was covered in The New York Times, the abuse at the center continued according to care worker Mary Maioriello, who provided the Times with recordings of  O.D. Heck administrators taken secretly during meetings in which these administrators fail to show much interest in or stop the assaults and systematic degradation of residents which Maioriello. After the tapes were released, the administrators were replaced. 

The need for surveillance is often demonstrated by surveillance.  

Six Years. A Billion Tax Payer Dollars. Autism Has Doubled on Tom Insel's Watch. IACC Protest.

Managing Editor's Note: "Six years and almost a billion dollars later, Insel has not only failed to produce even one medical intervention or recommendation to prevent or treat autism, the autism rate has DOUBLED on his watch."

Imagine if children were developing life threatening cancer at the rate of 1 in 54 boys - and in six years with almost a billion dollars the committee had failed to stem the tide, refused to look at causation or prevention, and instead spent a good portion of its time diligently dickering over the curtain colors at hospice?

What can Tom Insel say to the families of the fallen children - many of them born after IACC was installed?  IACC is failing the autism community. (Read more from AofA on IACC HERE.  The Canary Party and major national autism organizations who demand more than epidemic dithering and denial and unrealistic neurodiversity-based decisions for our loved ones whose lives have been derailed by autism invites members of the community in protest on July 10th:

On Tuesday, July10th at 9am, the Interagency Autism Coordinating Committee will be holding the first meeting of the newly empaneled members.  The Autism community will be showing up to let them know that their actions have been wholly unsatisfactory.

in 2006, Congress passed the Combating Autism Act, giving the federal government almost a billion dollars to find ways to prevent and treat autism.  The head of NIMH, Thomas Insel, was appointed to lead the IACC in coordinating that effort. 

Six years and almost a billion dollars later, Insel has not only failed to produce even one medical intervention or recommendation to prevent or treat autism, the autism rate has DOUBLED on his watch.  Tens of thousands of reports of improvements and recoveries via biomedical intervention have been ignored and gone uninvestigated.  He broke federal committee rules to strip vaccine research out of the autism research agenda.  Every year the complaints of Insel's malfeasance have become louder and louder in the autism community.

His abuse of his position came to fruition this past April when he announced the new members of the IACC.  The authentic autism community that is seeking to bring an end to the autism epidemic had nominated well respected researchers, doctors and advocates with impressive histories and large followings, however Insel ignored every one of the nominations, and instead seated a panel consisting of purely political appointees, four of who publicly state that they do not believe that autism should be prevented or medically treated.

That was when we reached our breaking point.  A coalition of advocacy groups representing tens of thousands of families held a press conference and demanded that Insel be fired, that the current mockery of a an IACC panel be disbanded, and that HHS Secretary Kathleen Sibelius meet with leaders of the coalition to chart a path forward to actually address the autism epidemic.

The only response that we received was what amounts to a form letter signed by NIH chief Francis Collins, that was clearly written by a staffer, and that did not address any of the points made to Secretary Sibelius.

We have had enough.

Join us for a demonstration of our concern over a public health disaster that is devastating a generation of children.

July 10th, 9:00am

L'Enfant Plaza Hotel (A bitter irony, "enfant" means child in French)
408 L'Enfant Plaza, SW
Washington, DC 20024
Map and Directions 

We will be demonstrating our concern to the new committee and letting them know that that we believe that the IACC as currently constituted has lost its legitimacy and its right to lead during their public comments portion of the meeting mid day, followed by a gathering in front of the Department of Health and Human Services in the afternoon.

We strongly encourage you to give your own public comments.  The procedure is as follows:

Harry’s Inquest Book: the Death of Harry Horne-Roberts

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                By John Stone

Readers of Age of Autism have followed this tragic story since Harry’s death two and a half years ago. Now his parents, Jennifer (Jennie) Horne-Robert and Keith Roberts, have published a second e-book documenting his life and tragic death . Frustratingly, the long prepared inquest recorded but failed to acknowledge the terrible consequences of the inappropriately prescribed medication – notably the sixty year-old anti-psychotic drug chlorpromazine - which was administered behind the backs of Keith and Jennie, and which was known to induce weight-gain.

Many issues remain officially unaddressed: the coroner himself chose to highlight the lack of an exercise regime, but did not ask how such a drug came to be prescribed to a young man who already had weight problems, whether it was a remotely appropriate prescription for someone on the autistic spectrum and the failure of professionals to communicate with the parents. It is evident also that given Harry’s weight an exercise regime might in itself have been highly problematic. The book chronicles and documents these appalling events in detail, leaving disturbing questions about the functions of the British state, and the future of our children.

Jennie and Keith’s earlier book ‘Harry’s Story’ can also be read on-line  . See also ‘Remembering Harry: The Life and Pharmaceutical Death of Young Artist’  .

 

The Side of Autism The Media and Others Don't Want You to See

By Anne Dachel

All of us have had those difficult moments while raising an autistic child. Often those around us simply don’t understand what we’re up against. I’ve had lots of experience with this because my son is 25 with Asperger’s. Even very high functioning kids have their idiosyncrasies. Much of my son’s OCD behavior has improved over the years but when he was little, he had so many rigid rules for what he would and wouldn’t do, it drove me to distraction. There weren’t a lot of kids who acted like him back then, which made matters even worse and the message I got was clear: it must be the mother’s fault that he acts like he does. I’ll always remember one Christmas when a relative, in exasperation, shouted at me, “When are you going to teach him the meaning of the word, NO?” The struggle is made even worse by all those who are quick to judge and criticize.

Recently an incident happened to a friend of mine, Maurine Meleck, that made it clear that caregivers still have to explain autism to others. Maurine lives in North Augusta , S.C. where she raises her grandson Joshua (14), who has autism. Recently, she was taking care of both Joshua and his neurotypical brother, Conner (12).

Maurine explained what happened:

“Joshua had had some minor dental surgery while Connor was at my house recovering from the stomach flu. Joshua was at the dentist for only an hour, but he had been given a mild sedative to make him calm. He walked out light on his feet and had to be taken to the car by the nurse. Meanwhile, Connor called and was dying for ice pops. I decided to run into Publix, our closest grocery store. Josh was sleepy, but not asleep. I told him to remain in the car for 5 minutes while I ran in the store to get the ice pops. (Joshua takes part in many activities without me around and I was certain that he’d be able to handle my small request.) When I returned to the car after 5 to 8 minutes in the store, Josh was gone. I panicked and called out for him--ready to call 911 due to his sleepy state. Suddenly I heard a muffled sound say, ‘Grandma.’

“I said, ‘Where are you?’

“Josh answered, ‘I'm in the trunk.’

Boston Teacher Placed on (Paid) Leave Following Abuse of Autistic Child

We need a Memorial Day for American boys, girls, men and women with autism. This abuse and disregard and anger toward our loved ones simply must stop.  And thank you to the military men and women who are raising children on the spectrum.

May 26, 2012 BOSTON - The mother of an autistic boy said she is outraged at the treatment her 4-year-old son received at the Russell Elementary School in Dorchester, while state investigators are looking into allegations of abuse by a teacher there.

Michelle Whitlow said her son, Deshaun, was abused at the school and called the decision by the school not to directly inform her "outrageous."

Deshaun's teacher was reported by other teachers for aggressively handling the boy and four other children on May 1, according to state investigators.

Whitlow said the school's principal never called her.

Three weeks later, Whitlow received a letter from the state Department of Children and Families supporting the allegations of physical abuse of Deshaun and the other children.

However, she said no one has told her exactly what happened.

"I am afraid someone might do something to him and he can't come home and say who hurt him. That's my biggest fear. He can't tell me if somebody did something to him," she said.

Whitlow has since transferred her son to another school.

The Boston School Department would only confirm the teacher is on paid leave.

See Video at WCVB.

Tell NY Governor Cuomo to CLOSE Barbaric Rotenberg Electric Shock Center

Managing Editor's Note:  By now you are likely familiar with the Abu School known as The Rotenberg Center in Massachusetts.  Named for Judge Ernie Rotenberg (who used to play golf at my Dad's club when I was a kid and was suspected of using a foot wedge a la Judge Smails, I'm told) this school employs aversive conditioning - which means they use pain to stop behavior.  It is the placement of last resort for families of children with severe, even dangerous behaviors.  There is a petition on Change.org - we encourage you to leave a comment expressing your disgust that American children are treated worse than animals and terrorists. The verbiage from the petition is below. Click here to sign. Thank you.

Last month, in a trial against the Judge Rotenberg Center, lawyers for Andre McCollins played graphic video of his torture by contingent electric shock for seven hours in the name of treatment. Andre is from New York, as are the majority of the Judge Rotenberg Center’s residents (as many as 60%), where their tuition (over $250,000 per year per student) is largely paid by public funding from the state or school district.

New York Senator Martin Golden and Assemblywoman Joan Millman have filed legislation (S6294A-2011 and A9084A-2011) that would revise the social services law to prohibit any form of public funding to any school or program that uses aversive interventions, specifically naming contingent electric shock.

In the past, New York banned the use of contingent electric shock on any student from New York, but there is still a large student population at the JRC from New York supported by public funding.

If these two bills pass, this piece of legislation could potentially result in the permanent closure of the JRC. The majority of the JRC’s revenue comes directly from New York, and if New York permanently cuts funding to any facility, school, or program that uses aversives such as electric shock, which is explicitly named in the legislation.

The Titanic Wave of Autism: “You will lie there and drown!”

“You will lie there and drown!”

 By Jake Crosby

 That was what my great-great-grandfather, first-class passenger and Civil War veteran Captain Edward Gifford Crosby (that's his ship in the photo), said to my great-great grandmother Catherine Elizabeth Halstead Crosby 100 years ago on the RMS Titanic after the ship struck an iceberg and began sinking. He rousted her out of bed and had her go into a lifeboat along with his adult daughter, my great-great aunt Harriette Rebecca Crosby. They were both saved by the RMS Carpathia. But because of the women and children first custom, Edward did not get into a lifeboat. He perished along with two-thirds of the ship’s passengers and crew instead.

With the recently reported autism prevalence of 1 in 88, the words of my great-great grandfather take on a new meaning. They don’t just describe what will happen to sleeping passengers on board a sinking ship, but rather what will happen to a sleeping nation as the autism prevalence continues to rise, as more crooked members are appointed to a federal autism committee and as vaccine industry front men continue to give public talks unchallenged. Like the passengers onboard the sinking RMS Titanic, we cannot afford to just lie there.

But this quote has more than a figurative meaning to our community. The mortality rate among people with autism is twice as high as the general population, mostly because of drowning accidents. As with the Titanic, there are real lives at stake and inaction will cost more lives. There is a modern, manmade epidemic of titanic proportions largely caused by our vaccine program, which shields vaccine makers from personal injury litigation. We do not have anything to fear of challenging people like Seth Mnookin or Paul Offit at their speaking events around the country, only what the consequences of not challenging them will bring. As long as we do not, our nation will lie there and drown in its own complacency.

--

Jake Crosby has Asperger Syndrome and is a contributing editor to Age of Autism. Jake is a 2011 graduate of Brandeis University with a BA in both History and Health: Science, Society and Policy. He currently attends The George Washington University School of Public Health and Health Services where he is studying for an MPH in epidemiology.

Managing Editor's Note:  There is a site called Lives Lost to Autism that memorializes children and adults whose lives have been cut short by their autism - through drowning, parental murder, caregiver assault. Autism kills from the outside in.

The Canary Party: CDC Announces New Autism Rate of 1 in 88

Minnetonka, MN (PRWEB) March 28, 2012

The CDC today announced 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 54 boys. That new rate is an increase from the previous 1 in 110 reported two years ago by the CDC’s ADDM (Autism Developmental Disabilities Monitoring) Network. This is only 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 that 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.

"Increasingly Difficult To Manage. No Program Available." Autism Murder Suicide.

Managing Editor's Note: 22 is the age at which school services end and "adult" life begins.  The article states that Mom could find no program to take George, and that he was becoming increasingly difficult to manage. Not a reason to murder him - not for a minute.  But a telling look at the grim times that are likely approaching as thousands of teens march toward aging out with little to no programming in place for them. Who will fund day programs for our loved ones in these economic and political times? Our condolences to George's family. KS

Read and comment on the full story at Inside the Bay Area. Lisa Fernandez' contact info is at the bottom of the piece. Share your story and thoughs with her.

A Sunnyvale mother shot and killed her 22-year-old autistic son in his bedroom, then turned the gun on herself, according to police.

Department of Public Safety Capt. Dave Verbrugge said Wednesday that the pair were found about 7:45 p.m. Tuesday in a home in the 800 block of Nectarine Ave.

He did not disclose their names or a possible motive.

Public records show that Elizabeth Hodgins, 53, lives at 813 Nectarine Ave., with a 22-year-old, George Hodgins. A 51-year-old man also lives at the home; police say the husband was not home at the time.

Neighbors confirmed the names of the mother and son. Jennifer Sullivan, executive director of the Morgan Autism Center, said George attended the San Jose center for most of his life, starting when he was six years old.

"He was delightful," she said. "He was non-verbal, but very physically active. He loved walking and hiking."

Sullivan said that George could not talk and used a voice-output communication device for limited communication. He did not drive and "constantly was working on his independent living skills," she said. "He needed to be supervised at all times for his own safety.'' Neighbors often saw George mowing the lawn with his father, his dad's hands over his.

George stopped attending the autism center in December. Sullivan said it was because Elizabeth Hodgins told her that she wanted to find a program that was more community-oriented, where her son could be out in the world.

But one neighbor said that Hodgins told her several times in the last few months that her son was getting increasingly harder to handle, and that she couldn't find a new program to take him.

"She just couldn't do it any more -- take care of him anymore''' said Jacquie Jauch. "She was just tired and very lonely."

I am the Lorax!

By Kim Stagliano

The Hartley family of Texas used hidden cameras in a group home to prove that the paid staff was assaulting their son. They caught the abuse on tape. He's 22! He is likely to have another 60 - 65 years assuming an underpaid, undertrained piece of sh*t "caregiver" doesn't kill him or allow him to wander to his death.  "Taylor's autism and his size made it difficult for him to remain with his parents." Oh my God - I see teen boys at speech every week who are 5' 9" - 5' 11' inches tall and weigh 250 pounds. One boy must weigh well into the 300s. They are teenagers!  That's likely a "side effect" of their medications. How long before they end up in a group home because aging parents can not care for them any longer?  They are just too BIG.  The adult wave is coming and the injuries, abuse and even death that will follow will grow until the mainstream world simple says, "Ah yeah, another one of those people died in a group home."

I feel like The Lorax. Anne Dachel is definitely The Lorax. Most of our readership is too. "I am an Autism Mom! I speak for our children!  My husband and I have already sat with the police, the District Attorney talking about assault against our child with autism, when she was 10! Wake up America - we need treatment (put the needle on the broken record again) and yes some form of recovery for our kids. Or I fear they will end up like the truffula trees. THWACK!  Unless...

An Allen couple suspected a caretaker was abusing their autistic son. But they had trouble convincing operators of the group home where he was living, as well as state authorities. So they took matters into their own hands, which led to a shocking discovery and criminal charges.

Karen and Michael Hartley secretly placed a hidden camera inside their son Taylor’s room at residential nursing home and documented an alleged beating of the 22-year-old.

“You promise this child when they’re born that you’re going to love them forever and you’re going to protect them,” Karen Hartley said of her love for her son.

Taylor’s autism and physical size, as he grew older, made it difficult for him to stay with his parents.

And So the Anger Against Autism Begins

Managing Editor's Note: I'm noticing a trend in articles about autism, like the one below in the LA Times" of condescension and dismissal.

Look at the words of this psych expert below, 'children with autism "know how to push every button known to God,"'. Roll that around your brain for a moment. There are times when I haven't been sure my kids know what their mouths are for - honest to God - and an expert is accusing our kids of "pushing buttons" as some kind of excuse for placing a child in a box as punishment? The fact that the child often seeks a quiet space on his own doesn't excuse using his safe place as a punishment. Imagine if a professional said, " Yeah, those cancer patients with their constant puking, they sure know how to push buttons, don't they?  And those dippy peanut allergy kids all anaphylactic shocky and wheezey? Real pains in the ass."  

I've been accused of not loving or respecting my kids the way the are because I want to (eyes darting left and right) "cure" them of their autism. Fact is, the world is going to start hating people with autism because of the lack of medical attention to treatment, the acceptance movement that has done precious little  to make our kids more acceptable and the COST to society. You start affecting someone's pocketbook, they take notice.  People are already pissed off and stressed out about their dwindling finances. Now ask them to pay a couple of million over the lifetime of a person with autism and see what happens.

I don't believe our kids should have carte blanche to interrupt a classroom, especially if mainstreamed.  But the anger toward kids who are on the spectrum horrifies me. Read the comment thread on the article. It's nauseating. 

I noticed similar comments about TJ Lane, the boy who murdered three students in Chardon, Ohio a rural suburb of Cleveland. TJ attended Lake Academy, "an alternative education program offering a unique approach to formal education for students who are experiencing serious challenges in meeting expectations within traditional school settings. Many of the students attending The Lake Academy are considered “reluctant learners” and may be struggling with a variety of individual problems, such as: substance abuse /chemical dependency, anger issues, mental health issues, truancy, delinquency, difficulties with attention/organization, and academic deficiencies."  Commenters in Cleveland are asking why a boy who had to attend a "special" school was even allowed to step foot in a public school.  I understand the anger toward him and make no excuses for his actions.  But the call to segregate/remove students who are different could easily capture many of our own kids (who are not violent or severely mentally ill) making them pariahs in education and by logical assumption, the workplace that follows school.  

I anticipate a very rough future for our loved ones.

I started karate classes last Fall. It's supposed to make me a bit more zen than my usual type A self.  Part of our code states, "I shall not use my skills outside of the dojo except in the most extreme circumstances." I look at what's happening to kids on the spectrum and I ask, "Define extreme..."

When Kim Rollins' son asked for a pair of scissors to take to school a few weeks ago, she was heartened that the fourth-grader, diagnosed with an autism-related disorder, was excited by a class project.

No, Sage Rollins explained, he didn't need the scissors for a project. He wanted them so he could cut a window in the cardboard box his teacher sent him to sit in.

Sage, 10, told her that his teacher at Ronald Reagan Elementary School, in the southwest Riverside County community of Wildomar, sent him into the box when she became upset with him. Before that, she forced him to sit in a darkened supply closet, according to Rollins.

"I was outraged. I was insulted," Rollins said from her home in Wildomar, near Lake Elsinore. "I cried when I heard.

School principal Nori Chandler told a Riverside County Sheriff's Department investigator last month that Sage went into a closet on his own, when he wanted "quiet time," and was never sent by the teacher. Sage also told the deputy he went on his own when he needed a quiet place.

The principal told the investigator that a district counselor provided a "decorated large cardboard box" for Sage that was placed in the back of the class, to provide a refuge for him when he had sensory overload, according to the investigative report, a copy of which Rollins gave The Times.

The box, about the size of a large television, was turned on its side, allowing Sage to use the open flaps as a door.

The deputy who investigated the allegations "failed to find any evidence of criminal wrongdoing," and the case has been closed, said Deputy Joshua Morales, a spokesman for the Sheriff's Department. The investigator's report said there did not appear to be any intent by any school employee to mistreat or abuse Sage.

Although she taught Sage in a mainstream classroom, Sabrina Beth MacFarlane has a state education specialist credential for working with special needs students. She has been placed on paid administrative leave by the Lake Elsinore Unified School District and was not available for comment.

"Appropriate personnel action has been taken, and the matter is under investigation," said district spokesman Mark Dennis. "We're taking this matter very seriously."

Rollins' attorney filed an administrative legal claim against the district and the teacher, a likely precursor to a lawsuit. The claim alleges that the isolation was involuntary, punitive and caused other fellow students to ridicule her son.

No More PDD - A Video Glimpse Post DSM-5?

Police and Autism: A Unique Perspective

By Jerry Turning

Alex was 5’9 and every bit of 200 lbs.  He was “uncontrollable” and destroying his family’s home.  We arrived to find Alex’s grandmother on the front porch.  Her arms were literally purple with bruises; the aftermath of one of Alex’s tantrums earlier in the month.  She directed us inside where Alex’s mother was trying in vain to calm him down.  We found him in the basement lying on his back.  Mom was trying to hold his hands.  She was crying.  She was sweating.  She was bleeding.  Around him were toddler toys:  Elmo dolls, a ring-toss game, coloring books.  There were no toddlers in the house.  The toys were Alex’s.  Alex was 14 years old.  He had Autism. 

In recent months there have been many high profile incidents concerning police using force to deal with children and adults on the Spectrum:

-Police Taser Autistic Teen and Then, After Family Complains, Return and Arrest Teen

-Teen with autism shot to death by police

-Autistic Man with Toy Gun Killed by Miami Police Officers

The most gut-wrenching of these incidents involved a young man named Stephon Watts.  Stephon, diagnosed with Asperger’s Syndrome, was shot and killed by police in Calumet City, Ill on February 1^st, 2012 after he slashed an officer with a kitchen knife.  This incident has gained national attention and stirred outrage within the ASD community.  I would like to offer my perspective. 

I am a 16 year-veteran police officer.  I am a police K9 handler and trainer with 12 years experience in searching for wandering ASD individuals.  I am also an Autism Dad. 

Jo Ashline: A Story Behind Every Number

Managing Editor's Note: This post in the OC Register caught my eye.  We can relate to the feeling of shock, the grief and then rolling up the sleeves and getting to work and back to love. 

By Jo Ashline

There is a mommy-to-be out there somewhere rubbing her belly and stocking up on antacids because she’s eating for two (and maybe, sometimes, when no one’s looking, for three). She spends hours researching the best car seat and stroller systems, daydreaming while doing the dishes about long walks in the park and whether she will allow strangers a sneak peak at the most gorgeous baby ever to be born.

Her husband, a good man with a big heart, dutifully goes to work each day, socking away dollars and cents and nursing his own daydreams about teaching his son to play catch. He makes a silent promise to keep his cool when bragging to his co-workers about his boy’s natural talent on the field, his impeccable hand-eye-coordination and his speed and endurance. He does his best to try and stay in the present, but every once in a while, as he crunches the numbers and updates the spreadsheets, he stares off into the distance and pictures his son, a handsome fellow that looks remarkably like him.

Washington Post: "No one has real answers. They didn't then, and they don't now."

Managing Editor's Note: Anne writes about author Susan Senator's recent experience with a son who has "aged out" of school services and the difficulty she faces in crafting a safe, meaningful adult life for him.  Susan is a good friend of mine and has been a force for her son Nat's school services  and now, adult programs.  Her novel DIRT: a story about gardening, mothering, and other messy business is a great read - and deftly weaves the family dynamic of husband, wife marital strife and siblings when autism is in the house.  Check it out at Amazon in paperback and ebook. Anne Dachel has been screaming from the rooftops for years "The adults are coming! The adults are coming!" and few have listened. This is an area where we can all agree - our kids will need services and care - most of them for the rest of their lives.

By Anne Dachel

Washington Post: "No one has real answers. They didn't then, and they don't now"

Washington Post: Tiger Mother to an autistic son

Albuquerque Journal: Mother's Fight for Autistic Son Never Ends By Susan Senator

This story started with the Washington Post and it was picked up by the Albuquerque Journal. Susan Senator talked about her mission advocating for her son now that he's aged out of the school system.  It's mammoth task and she's had to write her own job description. 

It brings back so many memories. My son is 25. How he survived in school until I started to homeschool him, I'll never know. In the second grade, the school system got a psychologist to come from Minneapolis (a hundred miles away) to figure out what was the matter with this weird acting kid. She told us, "Your son has autism. I don't know if he'll ever be able to live independently or hold down a job. We don't know much about autism--it's such a rare disorder. There's probably not another child in Chippewa Falls who also has autism."

Chippewa Falls is about 13,000 people.

It was devastating. I was totally on my own-no one knew anything. I knew lots of teachers, being one myself, and they couldn't help me.

I had to develop my own curriculum.

When John was diagnosed with autism I told his speech therapist the news and she said that she didn't believe it. She told me that she had met an autistic child once and he was nothing like John.

NOW, almost 20 years later, there are two other autistic children in this neighborhood. Every school has their share of autistic students. I'd have to be a complete idiot not to believe that something terrible is happening here. Why are we pretending this is normal and acceptable?

Here's what Susan Senator wrote:

I'm tired of being called brave. But being the mom of a deeply autistic young man of 22, I can't avoid it. Because I survived. Ever since Nat's birth, in the Autism Stone Age of 1989, I have had to be a Saber-Toothed Tiger Mother - or at least pretend to be one. From finding the right doctors to getting my town to do right by him, to also doing right by my other two sons, I have always had to be strong - or feign strength. What to expect when you're not expecting autism? No one has real answers. They didn't then, and they don't now. It has always been up to my husband and me.

I never thought that figuring out autistic adulthood would be the same way. Now that Nat has finished school, I feel like I am right where I started, the diagnosis days: grieving, confused, panicked. I'm sad because I miss the comfort and safety of the old routines.

The other thing I hear a lot is that Nat is an angel, closer to God than others, here to teach me something. No, he's not. He is just a complex young man. He's not a spiritual messenger or a puzzle. The adult-services system, or perhaps the lack thereof, is the puzzle.

Helping Nat have a decent adult life is our family's greatest challenge - not Nat himself. We want him to have a life with something to do: a job, volunteer work; a place to live safely, cared for; days with a rewarding rhythm. These are things I've been working on since he was a teenager - along with his school. Those teachers had Nat working at Meals on Wheels by 14 and at Papa Gino's by 19.

Now Nat is transitioning to adulthood, he is finished with public education services, and he begins navigating the far more complex adult-services system. I've done everything "they" tell you to do. I attended workshops, seminars and conferences. I pushed to get Nat funding and to qualify for whatever programs might help him live as independently as possible. I know I can't afford a staff person myself, nor will I live forever.

I did my homework. I visited an adult group home before Nat graduated and did not like what I found. Care was adequate but lifeless. Some of my friends' children had it even worse: from regularly missed appointments to soiled, unchanged underwear. We've all learned that adulthood can be abysmal for kids like ours. And yet without the programs we've got - troubled though they may be - we have practically nothing. I cannot fathom what would happen to all of us without programs such as Medicaid and the other gossamer-thin safety nets.

It dawned on me recently that I am going to have to do more than act tough and tireless: that I have to become what they say I am. Because I have to face the fact that no matter how hard I push, we still may not end up with a good situation for Nat. If only there were a waiting list for a stable adulthood experience like those to get into the good autism schools. I know how to be on those.

I've tried for the past year to put together my vision for Nat: a group home of my own, with like-minded families and staff that we help choose. And every time I get close to succeeding, some piece or another does not fall into place. You can't get funding until you have a group. You can't get the group together until you have a house. You can't get the house until you have the funding.

And so, on top of all the emotional upheaval, Nat's turning 22 is a Catch-22. Funding is scarce, and the programs can be iffy because of it. As always, there is no one to ask; every expert and professional has a different story. In the end, I'm figuring it out as I go, only now I am no longer a young mother.

I posted this comment:

Susan Senator tells us exactly what's out there for young adults with autism. It's an abyss.

Share Your Restraint and Seclusion Stories with Senator Harkin

SEEKING PARENTS WITH RESTRAINT/SECLUSION STORIES FOR U.S. SENATOR HARKIN’S STAFF

Last week, U.S. Senator Tom Harkin introduced the Keeping All Students Safe Act, S.2020, to protect students nationwide from dangerous restraint and seclusion.  As the GAO (U.S. Government Accountability Office) has found, restraint/seclusion are dangerous, resulting in deaths, injuries, and trauma to children nationwide.  WE ARE SEEKING LETTERS IN SUPPORT OF THE BILL FROM PARENTS THAT CAN BE SHARED WITH SENATOR HARKIN’S STAFF AND PERHAPS OTHER SENATE STAFF.   WE ARE ALSO INTERESTED IN STORIES OF CHILDREN WHO RESTRAINED OR SECLUDED AND WHO MIGHT HAVE BEEN HELPED IF THE BILL WAS LAW.   You do not have to have a story to send a letter.  Please email Jessica Butler, jessica@jnba.net if you have a story or think the bill would have helped your child, or if you would like to send a letter in support of the bill (even if you do not have a story).  Please feel free to forward and share with others.

HERE ARE THE HIGHLIGHTS OF WHAT THE BILL DOES.  PERHAPS ONE OF THESE THINGS HAPPENED TO YOUR CHILD AND THE BILL COULD HAVE PREVENTED IT FROM HAPPENING.  OR PERHAPS ONE OF THESE THINGS COULD HAPPEN TO YOUR CHILD (e.g. you live in a state with fewer protections).

• The bill bans all seclusion of children. This means that schools cannot lock children in rooms or closets or put them in other rooms or spaces they cannot leave (such as when furniture or a staff member blocks a door). Seclusion is dangerous; children have died or been injured.

• The bill prohibits physical restraint except in emergencies when there is an immediate threat of serious bodily injury.  Far too often, children have been restrained or secluded for misbehaving, not doing their assignments, being noisy, behavioral control, discipline,  punishment, threats of minor injury (like pinching), tearing up books or other minor destruction of property.   Restraint can injure and kill students.

• The bill requires schools to use less restrictive measures before attempting restraint.  In many cases, the school used restraint/seclusion first rather than trying less restrictive measures that would have worked.  Sometimes, parents provided the school with behavioral analyses or information or information about positive supports or other things that would work and the school ignored it.

• The bill requires restraint to end when the emergency ends.  There are reports that schools have continued seclusion and restraint long after any emergency ended, or required a child to perform a task or sit still for a particular period before they could get out.  For some children with autism and other disabilities, this is almost impossible.

• The bill bans mechanical restraints, such as putting children in Rifton Chairs, or taping or tying them to chairs or furniture, or locking them into devices.  It also bans chemical restraints, restraints that impair breathing or otherwise threaten life; restraints which are medically and psychologically contraindicated.  Since prone restraint impairs breathing, it would be forbidden under the bill.

• The bill also bans restraints that prevent children from communicating.   So, if a child needs assistive technology, PECS, or sign language to communicate that they are suffering or in medical distress, they cannot be restrained in a way that stops them from doing so.  The bill bans aversives that compromise health and safety.  All of these are dangerous.

• The bill requires schools to notify parents in writing within 24 hours of restraint and verbally the same day.  Parents need quick notification because of the danger of concussions and other injuries that require quick medical treatment.  In some cases, parents have not been told that their children were being restrained or secluded and only found out about it weeks, months, or years later.

• The bill prohibits putting physical restraint as a planned intervention in IEPs, 504 plans, behavioral intervention plans, student safety plans, or other educational planning documents for individual students.  There are reports that restraint and seclusion have been put into children’s IEPs and then schools use them as the first intervention.

• If a child is physically restrained, there will be a debriefing with parents and staff to plan to prevent further restraint and consider additional services and supports for the child.  A Functional Behavioral Assessment must be performed.

•  The bill applies to all children in public school.  It also applies to children with disabilities who have been placed in a private school at school district expense.

• The bill forbids retaliating against any parent, teacher, staffer, or person who reports that a child was restrained, secluded, or that the statute was otherwise violated.

Please contact me if you are a parent who would like to write a letter of support or if you have a story.  You do not have to have a story to write a letter.  My email is jessica@jnba.net .  For those on yahoo groups and other systems that cut off email addresses, my email address is jessica (at) jnba-dot-net

Thank you,

Jessica Butler
Congressional Affairs Coordinator
Autism National Committee
21 years of advocating for the rights of people with autism and related disabilities
email: jessica@jnba.net  [jessica (at) jnba.net]

==============================

==================================

Best of AofA: The Lever of Love: Why Families of Disabled Children Need a Legal Defense Fund

We ran this post in November, it seemed relevant to bring it back as we invite you to send your restraint and seclusion stories to Senator Harkin in the post above.

By Adriana Gamondes

While a system of holding people in hostage is as old as the oldest war, a fresher note is introduced when a tyrannic state is at war with its own subjects and may hold any citizen in hostage with no law to restrain it. An even more recent improvement is the subtle use of what I shall term “the lever of love” (applied so successfully by the Soviets) of tying a rebel to his wretched country by his own twisted heart strings.  ~Vladimir Nabokov, Bend Sinister

In Bend Sinister, Nabokov’s protagonist, Professor Krug, refuses to deliver a speech approving the new dictatorship, which of course promotes the greater good.  Like in Heller’s Catch-22, all they want is for him to say he likes them—and to be used like a donkey thereafter. Krug won’t comply, though his colleagues have already fallen in line. The regime’s henchmen set about playing a diabolical game of chess to isolate and demoralize Krug and bring him to heel; but the regime plays badly. They’re idiots. According to Nabokov, who survived a few dictatorships, the purveyors of tyranny always are, but that’s really beside the point if they still manage to destroy everything you ever loved as they lurch towards self-annihilation.  First Krug’s wife dies mysteriously in a medical disaster, though Krug is too grief stricken to understand the message. Coercion is useless if the subject doesn’t suspect they’re being coerced. They imprison Krug’s friends one by one, but still he won’t be moved. Finally they figure out his compliance could have been forced from the start by taking his eight year old son. The kidnapping is bungled, the child is accidentally killed and Krug goes mad. 

From the moment our twins were diagnosed four and a half years ago, it’s as if we’ve been strapped to a set of train tracks with the train bearing down on us at a snail’s pace, not knowing how to get out of the way. Other times it feels like a board game from hell with no firm rules or reason—you’re just always in a panic that you’ve made a wrong move, said the wrong thing. Check.

One risk we knew came along with the diagnosis was institutional abuse. As soon as your child is labeled and you try to seek any form of help, you’re subjected to all kinds of officious do-gooders who would otherwise never have had access to your family. There are good souls in the helping professions, but it soon becomes clear the unfortunate types have more power than they should. My husband also survived a few dictatorships before we met: in unjust states, they mess with your kids. It’s part of the game and why some are drawn to it. When they have your children in the balance, integrity and standing up for principle can become liabilities, which has a delicious equalizing effect for worms. 

 “Awareness” isn’t a coat of armor.  You might understand risks and even nip a few in the bud if you’re clued in, but you may not be able to stop certain things from happening in the first place, not in the current system. Everyone tells themselves bad things won’t happen to their child; but except for those who can afford to homeschool—and even these families live under a certain gun— when a family sends a child to school anywhere in the US, particularly a child with any kind of disability, they are depositing their child on foreign soil, a place with abridged constitutional rights and a third world system of justice.  I don’t think it’s even the third world anymore—it’s the fourth world:  Disability land.

Post-Gardasil Syndrome in Quebec Followed Vaccination Sans Consent

Read Full Article here......http://sanevax.org/victims-2/

After much research and discussion, my daughter and I had both signed the required form to refuse the Gardasil vaccine currently being administered in Quebec. In order to assure there would be no problem, I also phoned the school the morning the first dose of Gardasil was to be offered and spoke to the school nurse to inform her that my daughter would not be receiving this vaccine. The nurse assured me there would be no problem.

On 28 September 2011, my daughter presented the signed vaccine waiver and informed the school nurse that she would not receive the HPV vaccine. The nurse then set aside 15 minutes to inform Camille about the benefits of the vaccine.

After the discussion, Camille repeated her decision to refuse the Gardasil injection. The nurse then handed her additional informational documents and told Camille that if she changed her opinion, she could always inform the other nurse.

Subsequently, Camille met with a second nurse, this one outraged that my daughter refused the vaccine. She had set aside 10 minutes of her time to try to convince Camille again. The only side effect she mentioned was headache. This nurse pointed out that Camille would be the only one in the school to refuse Gardasil. She told her the consequence of refusing meant she could get cancer and die, only because she was being stubborn. She continued on until Camille finally granted her consent.

At that point, the nurse told her not to show her health record to her mother in order to avoid any discussion on this at home.

My daughter was pressured until she agreed to be vaccinated. Her ‘consent’ was neither freely given, nor appropriately informed. Camille’s consent was obtained through intimidation. A 14-year old girl does not have the experience to deal with authority figures in the same manner as an adult.

In my opinion, the way Camille was treated was an abuse of power and a breach of my trust in school health authorities.

Without my consent, or knowledge, Camille received her first Gardasil injection at 3:45 pm on that day. By 4:00 pm she was on the bus to come home. She already had a stomach ache and a headache. She decided to try and rest during the 45 minute drive home. She lost consciousness. Students noticed and tried to wake her up, but when they did she acted confused. They informed the bus driver, who promptly stopped the bus and called an ambulance.

She was admitted to St-Jérômes Hospital barely 2 hours after her injection. She has no memory of how she got to the hospital other than she recalls waking up in the ambulance. The hospital staff said there was no link between her condition and the vaccine. They recommended consulting an allergist.

The future brought fever, rash, fainting, fatigue, weakness, headaches, stomach pains and more consultations. She is now being treated for a urinary infection, abscesses in her mouth and oral candidose.

No link?

I lodged a formal complaint to the Order of Nurses of Québec. Teenage girls must be informed and warned of all possible side effects – not be left in the dark.

Today, nearly two months after the first shot of Gardasil, my daughter still has headaches that will not go away. Day after day she has to deal with them. She has no more appetite and has lost weight. This girl, who has been to an ophthalmologist every year since she was two years old and exhibited perfect vision, has now been told she will have to wear glasses because of her deteriorating vision.

For 11 years her vision was perfect, no longer – no link?

The doctor from the Canadian Health Agency told us there was no link between her symptoms and Gardasil. Furthermore, she said that Camille was sick and had all of those symptoms prior to vaccination. How can she say that?

I swear to God, my daughter’s health was in perfect condition BEFORE she got this shot

Read Full Article here......http://sanevax.org/victims-2/

12 Year old Schoolboy with Autism Hangs Self in UK

Managing Editor's Note: I hate adding posts to the "nightmares" category. Often the post is about wandering safety, perhaps a drowning. This story is particularly grim. A boy in the UK hanged himself following bullying. If you see bullying, for God's sake speak out. Encourage your NT children to do the same. Our condolences to the family. KS

A 12-year-old boy found hanged at his home was being bullied by a gang of girls, it has been claimed.

Michael Raven, believed to have been autistic, was found in his bedroom in Burnley, Lancashire at around 5.30pm on Monday.

The boy, a pupil at St Wilfrid's Church of England Academy in Blackburn, was taken by ambulance to the Royal Blackburn Hospital but was pronounced dead a short time later.

This week Facebook groups have emerged paying tribute to the school boy but also claiming he was being teased by girls. The school has denied the claim.

One woman, who said her daughter had been bullied at the school, said: 'She told me Michael was being picked on by a group of girls from year 8. It sounds like the teased him about his autism', according to The Sun.

Megan Brandon said: 'Bullies of St.Wilfrids C.O.E should feel ashamed 13years old 2nd year and taken his own life R.I.P Michael Raven never forgotten loved always

Megan O'Rourke wrote: 'Rip Michael Raven. Wish you didn't feel that way,& remembered that everyone loved you.. I didnt know you but I know your going to be missed X'

Another friend called Sammie posted: 'R.I.P. Michael Raven - a twelve year old boy who hung himself due to bullying. Nobody should be able to go through that.'

Jay Deaton said: 'HATE BULLIES. Rest in peace Michael Raven, you beautiful angel xxxxxxxxxx.'

And AnyaJB1 said: 'Makes me sick how people can bully someone until they kill themself.. :@ rest in peace michael raven! - he was only 12 years young'.

The school broke the news to pupils about the tragedy in a special assembly.

Read more: http://www.dailymail.co.uk/news/article-2068514/Michael-Raven-12-bullied-girl-gang-autistic-hanged.html#ixzz1fQUcdGtf

 

The Lever of Love: Why Families of Disabled Children Need a Legal Defense Fund

By Adriana Gamondes

While a system of holding people in hostage is as old as the oldest war, a fresher note is introduced when a tyrannic state is at war with its own subjects and may hold any citizen in hostage with no law to restrain it. An even more recent improvement is the subtle use of what I shall term “the lever of love” (applied so successfully by the Soviets) of tying a rebel to his wretched country by his own twisted heart strings.  ~Vladimir Nabokov, Bend Sinister

In Bend Sinister, Nabokov’s protagonist, Professor Krug, refuses to deliver a speech approving the new dictatorship, which of course promotes the greater good.  Like in Heller’s Catch-22, all they want is for him to say he likes them—and to be used like a donkey thereafter. Krug won’t comply, though his colleagues have already fallen in line. The regime’s henchmen set about playing a diabolical game of chess to isolate and demoralize Krug and bring him to heel; but the regime plays badly. They’re idiots. According to Nabokov, who survived a few dictatorships, the purveyors of tyranny always are, but that’s really beside the point if they still manage to destroy everything you ever loved as they lurch towards self-annihilation.  First Krug’s wife dies mysteriously in a medical disaster, though Krug is too grief stricken to understand the message. Coercion is useless if the subject doesn’t suspect they’re being coerced. They imprison Krug’s friends one by one, but still he won’t be moved. Finally they figure out his compliance could have been forced from the start by taking his eight year old son. The kidnapping is bungled, the child is accidentally killed and Krug goes mad. 

From the moment our twins were diagnosed four and a half years ago, it’s as if we’ve been strapped to a set of train tracks with the train bearing down on us at a snail’s pace, not knowing how to get out of the way. Other times it feels like a board game from hell with no firm rules or reason—you’re just always in a panic that you’ve made a wrong move, said the wrong thing. Check.

One risk we knew came along with the diagnosis was institutional abuse. As soon as your child is labeled and you try to seek any form of help, you’re subjected to all kinds of officious do-gooders who would otherwise never have had access to your family. There are good souls in the helping professions, but it soon becomes clear the unfortunate types have more power than they should. My husband also survived a few dictatorships before we met: in unjust states, they mess with your kids. It’s part of the game and why some are drawn to it. When they have your children in the balance, integrity and standing up for principle can become liabilities, which has a delicious equalizing effect for worms. 

 “Awareness” isn’t a coat of armor.  You might understand risks and even nip a few in the bud if you’re clued in, but you may not be able to stop certain things from happening in the first place, not in the current system. Everyone tells themselves bad things won’t happen to their child; but except for those who can afford to homeschool—and even these families live under a certain gun— when a family sends a child to school anywhere in the US, particularly a child with any kind of disability, they are depositing their child on foreign soil, a place with abridged constitutional rights and a third world system of justice.  I don’t think it’s even the third world anymore—it’s the fourth world:  Disability land.

The marks my daughter came home from school with in the middle of September weren’t much—a small imprint on the inside of one arm, a bruise on her forearm and what looked like a rug burn near her elbow.  But according to the school, the marks don’t exist, and that’s what turned them into gaping wounds. The school’s version of events:

Additionally, Mrs. G reported that [child] has marks on both arms, which she attributed to [child’s] having been “scooped up off the ground” by lifting her under the armpits.  With verbal permission to Dr. X from Mrs. G, school nurse completed a brief examination.  Mrs. Y brought [child] to the school nurse’s office at the end of the day on X/XX/11.  With Mrs. Y present, the school nurse viewed [child’s] upper torso, upper back, entire upper extremities and axilla.  The school nurse office visit report noted no areas of discoloration, swelling, or redness.  [Child’s] skin was noted to be quite translucent around the areas of the veins.  A copy of the report has been placed in [child’s] medical file and a copy is attached to this report.

During the meeting, Mr. and Mrs. G questioned how [child] would have arrived at such a specific description (“scooped up off the ground”), so Ms. Y  asked if [child]  has witnessed anything of this sort in school.  The only thing that can be identified is a movement (very much like the action demonstrated by Mr. G) that occurs several times a day with one of [child’s] classmates who needs assistance to transfer from one position to another due to physical disability.  [Child] sees this on a daily basis.

I’m always amazed at how school apologists make excuses for school conduct when the schools are so skilled at doing it for themselves.  For the record, though we will celebrate the day she lies as a great milestone in recovery, our daughter doesn’t lie. She has eidetic memory and if an account clashes with her mental videotapes, she can’t let it go. She’s never fabricated or imagined an event in her life, won’t even frame her brother for stealing a cookie. She once had exaggerated fear of cars, but never actually hallucinated that a car jumped the curb and the fears turned back into reasonable caution when her fever broke. 

When the Google Alert Makes Autism Families Want to Vomit

Like you, I have several Google alerts set for autism news. I usually breeze down the list of articles muttering, "Meh, duh, OK, Oh that's a good story, great kid, how wonderful..."  This week (at least) three stories hit that helped me acheive a new weight loss number for the week. The hard way. How is it that teachers and caretakers think that our loved ones are so inhuman and unworthy of respect that they can abuse them in a way that would violate the rules of the Geneva Convention and yet go almost unnoticed by the world? Not here. Check out the stories below. And feel free to share your own in the comments. It's not the cheeriest Sunday news - but certainly deserves thought and even prayer. KS

Dad Sues Roanoke VA School Board for $20,000,000 for Beatings on Bus

Thomas Kilpatrick, 47, is accusing the two women of physically abusing his 12-year-old autistic son on his way to the Laurel Regional Special Education Center, a special needs school in Lynchburg.

Lawyers for the family say that boy is still suffering from permanent emotional damage more than two years later. Their most compelling evidence is an hour and a half worth of surveillance video from the school bus. They say it captures the autistic boy being hit, kicked and even choked by the former school employees. (You can watch the video to the right.)

P. Brent Brown is an attorney for the Kilpatrick family.

"When people look at the surveillance video they will be horrified," said Kilpatrick from his Roanoke office.

The suit alleges 12-year-old Timothy was strapped into a shoulder harness the morning of September 24, 2009 when the former aide hit him repeatedly with fly swatter, kicked him, and later sprayed an aerosol chemical in his face.

 Child Sprayed with Aerosol on Bus (This is the same child as in the story above)

New video given to WSLS on Thursday, claims to show a second instance where a 11-year-old boy with autism was physically abused by former Bedford County Schools employees.

Horrific video shows autistic boy, 11, screaming for mercy as he is kicked, choked and hit by driver and helper on school bus

Autism Advocates Upset Teacher Cleared In Restraining Student 12-Year-Old Boy Tried Up, Tipped Back In Chair

Autism advocates are concerned an Indiana Court of Appeals' decision to drop charges against a special education teacher who helped restrain a special needs student could send the wrong message to Indiana teachers.Catherine Littleton, a teacher at Perry Meridian Middle School, was originally charged with confinement, battery and neglect of a dependent in connection with her treatment of a 12-year-old boy with autism in February 2010...

 

Adult with Autism & Mental Illness Arrested in Dallas "Acting Odd"

The headline of this story Autistic Man's Acting Odd Lands Him in Jail only covers half of his diagnosis, and makes a critical exclusion. He also has schizophrenia, which certainly is connected with "odd" behavior. Regardless, his situation is sad and worth sharing. The future is now.

Read the full article and watch the video at CBS Dallas Fort Worth

The 28-year-old hides inside his small Dallas apartment because of fear that police will arrest him wherever he goes.

“I see a cop right there, so that tells me that I should not be going outside not for nothing.”

Wimberly is both autistic and schizophrenic, so he struggles with self-control.

Despite his condition, Blake has progressed enough to live on his own.  But his mother, Lori Lux, says a trip to a grocery store started a downward spiral.  “I see a man who has shut down,” she said.

National Autism Association (NAA) Says Vinegar-Soaked Cotton Balls in Disabled Students' Mouths Underscores Need for 'Aversives' Ban

KATY, Texas, Sept. 27, 2011 /PRNewswire-USNewswire/ -- Monday night, in an effort to demonstrate inhumane practices known as "aversives" happening in special-ed classrooms across the county, school district officials in Texas were asked to insert vinegar-soaked cotton balls into their mouths. The request came from advocate and NAA board member Leslie Phillips following multiple reports from local parents who say their children attending Exley Elementary school in Katy were force-fed cotton balls soaked with vinegar as a form of discipline. "There were no takers to the request," said Phillips.

According to parents, Exley students, some of whom are nonverbal, were sometimes forced to get on a classroom treadmill, ostensibly there for exercise breaks and forced to go faster or longer than they wanted. In addition, cotton balls saturated with vinegar were placed into their mouths to control behavior. Parents say they were told certain "procedures" had been used on their children without their knowledge or consent, and the district would address the issue. Exley Elementary School Principal Imelda Medrano used only vague references, saying, "a treadmill was used" and "vinegar was introduced."

Parents Carol and Bill Rutar said they were dumbfounded to learn these strategies were not illegal. "If I were to attempt to force an adult to do something like this, I would be arrested and charged with assault and battery. Further, if this happened to a student in a general education setting, there would be public outrage. It's precisely the type of bullying behavior between students that is the focus of national attention and expressly prohibited," said Carol Rutar.

Parents still await information from the investigation, conducted by the district's own police department who has confirmed the matter has been handed over to the District Attorney.

Lack of Preparedness of Autism Abounds: FL Charter School Removes Child in 1 Day

I've been talking to parents and DDS management and caregivers about the dearth of programs in place ready to handle the behavioral challenges of autism. Group home? How does a boy who punches out windows live in one? Work at a grocery store? How does a girl who bites and hits work near customers? All roads lead to treatment and then prevention.  Even among misfits we're misfits. And that's painful to admit.  And likely to land me in hot water - heck, throw me a tea bag and we'll call me Oolong. For parents whose kids have behaviors like biting, hitting, kicking - how and where do we find help to curtail those behaviors? In a six year old they are barely tolerable - in a 26 year old they may be life threatening due to chemical and physical restraint.   It's a grim picture. As we say on Twitter, #feelautismyet?  KS 

Read the full story of  a girl named Natalie who was asked to leave a charter school for behaviorally challenged kids in ONE day. To be fair, we don't know if the child was a right fit for the school, though one would hope that there had been meetings and introductions and an honest appraisal of "behaviors" from Mom and/or Dad to the staff.  Perhaps we'll learn more in a future article. In the meantime, read the  Orlando Sentinel for the full article. Excerpt below.

Kerlin Fedee thought she had found the perfect fit for her daughter — a school dedicated to the needs of young children with behavioral problems.

"They said they would be able to help her and would love to have her," Fedee said.

But Fedee was disillusioned quickly. Aspire Charter Academy in Orlando, which opened this fall, kicked out 6-year-old Natalie Querette on the first day.

Natalie, a first grader, sometimes bites, kicks and spits, especially in a new situation. She has autism and attention deficit hyperactivity disorder.

Cognitively Challenged Miami Man Fatally Shot While Brandishing Toy Rifle

Managing Editor's Note: Here's a tragedy straight from the AofA "Nightmare" files. Ernest Vassell was fatally shot by police who assumed the rifle he was brandishing was real, and not a toy.  Who (if anyone) allowed an adult with a disability to carry a toy rifle around a neighborhood in 2011? It was a recipe for disaster.  Our condolences to the family. And to the officer who fired the shot.  From Fox News. Feel free to pop over to Fox to add a comment. The story is on every major news outlet as well. Note some reports (like the one below) say Mr. Vassell had autism, another report says he suffered brain injury in a fall as a child.

Family Says Autistic Man With Toy Gun Shot, Killed by Florida Police

Published September 01, 2011

NORTH MIAMI BEACH –  A man whose family said he was autistic was killed by police in North Miami Beach after pointing a real-looking toy gun at an officer, police said Thursday.

Police officers responded to 911 calls about a man seen walking around the neighborhood Wednesday afternoon with a rifle, North Miami Beach Police Director Thomas Carney said.

Officers gave commands for the man to drop the weapon, but he refused and pointed it at an officer, Carney said.

The man identified as Ernest Vassell, 57, was carrying a realistic toy that could be confused with a rifle or shotgun, police said.

"It's very tragic," Carney said. "People don't understand that police officers are going to treat you like that's a real gun until we determine differently. They're not going to take any chances."

The victim's sister said Vassell was autistic and had mental challenges.

"Ernest did not deserve to die like this. Everyone is still in shock and disbelief," Marva Vassell-Gordon said.

His neighbors said it was obvious that Ernest Vassell had a disability, and police should have known.

"It's so strange to me that I can see it, and then, the police didn't see it. Or they didn't look for it," said Conroy Anderson, a family friend.

Police were not immediately releasing further information on the shooting pending an investigation

Final Note: Bruce Springsteen wrote this haunting song about Amadou Diallo, a young man who was shot 41 times in The Bronx, NY when police thought the wallet he flashed was a gun. Police shootings often draw controversy.  "Is it a gun? Is it a knife? Is it a wallet? This is your life." I'm not comparing shooting an unarmed man with a man carrying what looked like a real rifle - it just seemed emotionally "right" to share this song. In both cases, an innocent man died. KS

Cleveland Plain Dealer: Dealing with Autistic Adults and not Asking Why

By Anne Dachel 

Recently there were stories from the Cleveland Plain Dealer about the problems caused by ONE AUTISTIC ADULT.  The first was the article on 8/14 , followed by an editorial on 8/19.  

These were sobering pieces about a young adult male named Simon Greenspan who has autism and who caused problems for the neighbors because of his emotional outbursts.  

“Simon Greenspan would wake up his neighbors with screams and moans, often following a loss by the Cleveland Indians or another sports team.

“His outdoor rants, sometimes in the middle of the night, could last from 10 minutes to more than an hour.

“The sporadic outbursts, occasionally directed at his neighbors, went on for the better part of six years. During that time, Shaker Heights police responded between 50 and 100 times to the two-story house on Shelburne Road, usually after a neighbor had called to complain.”

Although it was about one individual, the implications are huge.  I’m sure tens of thousands of parents could read these stories with the nagging thought in the back of their minds, “Will this happen to my child?”  What’s so maddening to me is the fact that there’s this chronic acceptance of autism.   The Plain Dealer told us, “And this won’t be the last such case.

           “The population of people affected by autism is growing, and although the affliction manifests itself differently in different people, vocal or even violent outbursts are not uncommon.

           “The experience of the Simon family and their neighbors is a cautionary tale for every neighborhood and every community to ponder."

So there will be more adults like this coming along? Simon Greenspan’s behavior resulted in dozens of police visits, $6,500 in fines for the parents, and their son being shipped off to a group home Utah. So where will we put all the upcoming adults like Simon?

Part 2 The Greatest Challenge: Autism and an Out of Home Placement

This is the second and final part of this series written by Bob and Jane Smith about their 13 year old son TJ. Read  Part 1 Autism and an Out of Home Placement HERE. (Names changed to protect the family.)

********

...Letters from family and friends were especially helpful in getting approval for placement. My sister wrote about us visiting my 77 year old mother. 

“After his visits, she would often laugh about taking a week or two to find something he had played with and hidden in a secret spot.  Lately though, his visits have been much harder on my mother.  She would not tell Bob and Jane how it was affecting her because she knew they needed to visit and get away themselves.  TJ has become more aggressive and two times he has been unhappy with something mom did and hit her.  He did come back to rub her arm to let her know he was sorry.  She would not tell Bob this because she knows the stress they are all under.  After his last visit, she was so nervous she had trouble sleeping.”

My sister in law, a teacher who was inspired by TJ to get her Master’s in special education wrote:

First, let me say I have never known a more loving and devoted family.  It is their strength and faith which is an inspiration to me.  … Tirelessly, Bob and Jane have sought answers to never-ending litany of questions as to what had happened, how best to help TJ, and how to maximize TJ’s potential.  Together, they educated themselves with all aspects of autism, became respected voices in the autism community, and all the while maintaining as “normal” a family-life as possible.  However, this has been a constant struggle.

Attendance at extended family events has been extremely limited.  Unfortunately, not all family members fully comprehend the meaning and extent of TJ’s autism.  This has led to at worst, the family not feeling welcome at many family functions, or at best, dividing the events and either Jane or Bob would remain at home with TJ so the other could attend.  For example, imagine having to attend the funeral of a family member without your spouse there to offer support or going to a family wedding while half your family has to stay at home because there is no “safe” place for TJ. 

Our son Jim had a very difficult time writing his letter.  It rambled somewhat, indicating to us that even Jim had a reluctance to also admit that it was time for TJ to be placed.  But in his letter, he vividly describes the issues:

“I’ve seen my parents struggle with just about everything from financial problems, political issues, to family brawls.  I’ve watched my friends faces as they listen to the sounds of my brother throwing a terrible fit, their eyes not only showing confusion and fear, but also of concern and wonder about how a family can keep control in a life of chaos.”

One of my best friends and a school teacher wrote:

“Bob and Jane believe TJ is often happy.  I’ve seen him happy.  But their family is forced to struggle with the very definition of happiness: what it is, how to maintain it.  I have three children, and until I met TJ, I took the understanding of happiness for granted.  I assumed I understood it.  We know that we can’t always be happy, and that happiness comes from surprising directions.  But Bob and Jane must constantly rework the definition of happiness for TJ.  I’ve seen them agonize over this question.  Is he in pain?  Is he angry?  Is he hungry?  While the rest of us blithely go about our business, Bob and Jane constantly question the very basis of the relationship between parent and child … That takes a great toll.” 

He later added:

“They are forced to make choices other families never even consider:  Can we go to church?  Will we be invited to a family Thanksgiving celebration?  Can I stop for a gallon of milk?  And often, the answer leads to another burden:  they can do those things, but separately.  Except for the times when I’ve been in their house, I’ve never once in eight years seen Bob and Jane together in public.” 

Jane’s letter took the longest to write, and she went to bed quite a few nights in tears before it was completed.  Finally, since it was to be addressed to our social worker of many years, she was able to write it as if to a friend, and included the following excerpts:

Thank you so much for your support for TJ and our family over the past few challenging years.  You asked us to write about placing TJ in a group home situation.  As TJ is asleep right now, I will take to let you know why I feel that placement in a group home setting is in the best interests of TJ and our family.

Part 1 The Greatest Challenge: Autism and an Out of Home Placement

Managing Editor's Note: Below is part one of a two part series sent to us by Bob and Jane Smith who recently placed their 13 year old son TJ in a group home. (Names changed to protect the family.) We invite you to share this post with family, friends, doctors, therapists, colleagues and your local media. Part two runs tomorrow. KS

Our family has experienced numerous challenges due to having a vaccine injured child with autism.  Our story is very similar to others shared on the Age of Autism in the past.  My wife and I have only recently endured the greatest challenge of all.  We have placed our 13 year old son in a group home. 

This was, as you can guess, not a decision we took lightly.  Although we knew that we had the support of friends and family, there is always a feeling, somewhere in the pit of our stomach that we both have to tackle whenever it pokes its nose out – “Did we do the right thing?”  For several personal reasons we chose to submit this chronicle without our real names, we hope you understand.

Writing this letter to you as well as other parents is my way of battling my personal demons.  It is an exercise for my own emotional well being, yet I hope in some way it will help others as they make their own transition to the inevitable – letting others care for their child.  Conveying exactly how we came to this point requires me to share heartfelt but gut wrenching testimonials sent to the State in the form of impact statements from our family, extended family and friends.  This account concludes with the placement of our son.  Though very positive at this point in time, the complex details recounting our experiences and emotions from that point on are better left for another day.

TJ’s story is similar to many others.  Jane had developed an auto immune disorder before becoming pregnant.  She had a flu shot, a mercury amalgam filling replaced and gestational diabetes during pregnancy.  TJ was induced with Pitocin and born normal with Apgar’s of 9 and 10.  He made all of his developmental milestones until after the age of 12 months. 

TJ was given Hep B at birth without our consent.  Since Jane was “livid” that they did this without our consent, the hospital did not record the shot.  At our two week “well baby exam” he was quickly given the Hep B again because it was not included in the hospital records.  Each well baby exam at 2 months, 6 months, 12 months and 18 months brought more and more unexpected and “pressured" vaccinations.  After a flu shot at 24 months, we finally began to say no to more vaccinations.

Starting at the age of two months however, TJ’s immune and digestive systems began a slow and steady decline.  TJ developed chronic unexplained diarrhea, unending fevers and “ear infections” leading to two sets of tubes before age 24 months.  His adenoids were scraped at 6 months; tonsils were removed at age 30 months (they looked like he had three tongues).  He was on antibiotics for nearly 600 of his first 900 days of life.

At 15 months, TJ developed septicemia and a septic hip, but no bacterial agent could be identified.  At that time, he could not feel pain and it took three days to convince his pediatrician that something was wrong.  Emergency surgeries and a months worth of IV antibiotics later he cleared the infection.

Our beautiful son slowly lost significant skills and began repetitive behaviors shortly after his 12 month well baby visit.  By 18 months, Jane suspected autism, having only seen it portrayed on the 1980’s drama “St. Elsewhere.”  By 2 years of age, he fit the classic definition of autism. 

For the most part his behaviors were manageable but required me leaving my job and working with him home.  We chose a full time home based Son-Rise Program.  We were fortunate to receive a Medicaid Waiver that allowed us to train and pay our own staff to help us with TJ since he was three years old.  Our angel came in the form of an unbelievably patient, loving and understanding young man.  For the past four years he was right alongside of my wife and I, enduring some of the most destructive and aggressive behaviors imaginable.

For many years our family, friends and neighbors had openly questioned how long we could keep up with this life we lived.  Our immediate families lived over 300 miles away and we needed to travel overnight to visit.  But it was no longer feasible to stay with anyone and motels were even less of an option with a child like ours.  Christmas 2009 was my darkest day, as I realized that the very last home we were welcomed to bring him to stay became a place he did not want to be.  I found myself driving up and down the Lake Michigan shoreline in an ice storm contemplating driving right in.  Thankfully the boy in the back seat, who was only calm when being driven around, smiled at me and made me realize how lucky I really was.

A Look at Causation: The Killer Autism Mom Phenomenon

Contains adult language

By L.J. Goes

"Yes. Today is the day."  As I read about the murder-suicide of  Maryland Psychiatrist, Dr. Margaret Ferne Jensvold and her son Benjamin Barnhard, (MyFox DC Margaret Jensvold Autism Murder Suicide) I pondered if their tragedy began with this sort of detached speculation. "Gotta remember to stop by the grocery store and the bank before I pick up Ben from school. Do we need grapes?  I should have checked. Did I fill out those forms for summer camp? Looks like I might need to get some gas on the way to work. When to end our lives...when to end our lives." Do these horrific thoughts just co-mingle with one's day to day internal chatter or do they eclipse rational thought over a period of time, like obsessions?  Dr. Margaret was certainly the person we would have gone to to ask such a question, as psychiatry was her specialty. Did she plan their demise for several days? A year? Or did she simply pay too much attention to the passing thought that death was a pleasant alternative to life at a particularly weak moment? Seems odd that a pragmatic person known for helping others would act so drastically. 

 All we know is that Dr. Margaret had a lawsuit against the National Institute of Mental Health for sexual harassment and that a judge came along after an eight person jury found in her favor and overturned their decision.  She was a compassionate professional who cared about women's heath and overcame adversity, according to her attorney. Her son Ben was a good kid and liked sailing with his dad. He was overweight, had autism, suffered at the hands of bullies, and his mom killed him before his 14th birthday. 

During a recent conversation with my friend, autism activist, Ginger Taylor, I kvetched about my life.  "No one is listening. My calls to our political leaders go unanswered. My pleas for local doctors to address the growing concerns of parents receive no response. Every time I do an interview the reporter's pen stops the minute I start talking causation. They smile, focus somewhere on my face (never the eyes) and tolerate the education. Then they nod and dutifully eruct a "huh, interesting..." so they can segue as comfortably as possible to the next meaningless question, "so what's your autistic (cringe) son's favorite toy?" 

RIP Jawara Henry and Visit The Future For Autism: Choke Holds, Restraints, Death

By Kim Stagliano

Last December, Jawara Henry, an adult with autism, was strangled to death in a "hold" used incorrectly by a psychiatric facility supervisor who has just been charged with criminally negligent homicide.  I can only imagine how his family feels.

Get ready America - and the world. As the plethora of children born in the 1990s catapults toward adulthood and out of the relative safety of school systems into the state mental health and disability system, this tragic story of death by caregiver will become all too common. I have watched my own daughters grow into a young women of 16 and 15 (and 10.)  We are fortunate that biomed and behavioral work has tamped down serious behaviors. Some of their male peers have frightening, yes I said frightening, behaviors that are part of their autism - their untreated, unchecked, unresearched, misunderstood autism. These are not criminally violet boys and men. They have autism. While the nimrods up the street from me at Yale spend millions on eye gaze studies and genetics models and MRI differences, boys are turning into MEN before our eyes.  Girls into women. Barely  tolerable behavior at 5, like biting, becomes threatening at 15 and then the target of police action and or phsyical abuse at 25 in the hands of a $12 an hour aide, or in this case a "supervisor."

I don't think any provider should have to submit to violence from a patient or client. Don't get me wrong. Safety for everyone is important.  There isn't enough training, staffing or support for the looming epidemic. And current financial woes coupled with the less government mantra doesn't bode well for the special needs community. In CT, the respite houses are closing in September. That means families who counted on 4 days of relief a month will now have nothing. How long before tragedy strikes? Few of us could afford to pay staff for a twenty four hour day.

But until the research community and the dingdongs who fund them step up and admit epidemic catastrophe is here and it's called aggressive autism, I see precious little help in terms of actual treatment beyond the psych drugs that have already proven themselves to be an epic fail for so many.

Read the update on Jawar Henry's death by Doug Auer in the  New York Post

A supervisor for disabled adults at a Staten Island mental health facility was charged today with criminally negligent homicide after his wrongful restraint of an autistic patient led to the man’s death, authorities said.

Erik Stanley, 37, allegedly applied excessive pressure to the neck and torso of Jawara Henry, 27, during a Dec. 4 incident inside the Multiple Disabilities Unit on the grounds of the South Beach Psychiatric Center on Sea View Avenue.

Autism Tragedy as Psychiatrist Mother Allegedly Murders Son, Commits Suicide in MD

This story is from MyFoxDC . Our condolences to the child's father and other family. We'll discuss this in further detail soon. For now, just pray. For Benjamin, Margaret, all of us. KS

By BOB BARNARD/myfoxdc

WASHINGTON - Montgomery County Police say a well-known psychiatrist and author shot and killed her teenage son, then turned the gun on herself in a murder-suicide inside their Kensington home.

Police were called to the rented townhouse on Simms Court Tuesday afternoon. They say Dr. Margaret Ferne Jensvold, 54, was found in her bedroom with a gunshot wound. 13-year-old Benjamin Barnhard was found in his bedroom also suffering from a fatal gunshot wound. The Maryland Medical Examiner's Office has ruled the case a murder-suicide.

FOX 5 News spoke with the boy's father, James Barnhard, who calls his ex-wife a lovely person who likely killed their only child out of desperation and love.

Barnhard says Ben was tormented by bullies at school for being extremely overweight and on the autism spectrum.

Statement from James Barnhard, ex-husband and father of victims:

"I loved my son and ex-wife, and I was proud of both of them. My son was a successful graduate of Wellspring Academy. He was featured on "Too Fat for Fifteen: Fighting Back," and lost 160 pounds in the last year, due to his hard work and determination.

I do not understand this tragedy, and I do not know why this has happened.

I will hold them in my heart, and they will be sorely missed by all who loved them. Please keep us in your prayers."

By ERIC TUCKER Associated Press

A psychiatrist specializing in women's health and her 13-year-old son were found dead in their home in suburban Washington in a likely murder-suicide, police said Wednesday.

The bodies of Margaret Ferne Jensvold, 54, and her son, Benjamin Barnhard, were found Tuesday afternoon in their respective bedrooms. Police were called after one of Jensvold's co-workers reported being unable to contact her for several days. Jensvold was divorced and lived with her son in the upper-middle-class suburb of Kensington, Md.

Both bodies had signs of trauma, but police did not elaborate. Capt. Paul Starks, a Montgomery County police spokesman, said officers had obtained a search warrant for the home and were continuing to investigate but believe that the deaths were the result of a murder-suicide. He would not elaborate on what led police to that conclusion, and said autopsy results were still pending.

"We of course still have to gather all evidence," Starks said.

Jensvold was most recently working with Kaiser Permanente in Kensington, said her ex-husband James Barnhard, Benjamin's father. He said he was still in disbelief and had not yet heard a timeline from police as to what they believed happened. He said he had last spoken with Jensvold several days ago to arrange a time to pick up his only son from her house.

"Ben was a very sweet and loving child. I mean, he was just one of the kindest and sweetest kids a parent could ever wish to have," Barnhard said. He said his son had spent the last year at a weight-loss program in North Carolina and had shed more than 100 pounds and loved sailing and other water activities.

He said he had no indication of any problems between his son and ex-wife.

"She was always nice to Ben. Sometimes she could get a little frustrated with him, but she was always nice to Ben," he added.

In 1990, Jensvold filed a federal lawsuit against the National Institutes of Mental Health, where she had been a medical staff fellow.

She alleged that a male superior harassed her because she was female and fired her in 1989 before she could complete the third year of her fellowship program. An eight-person jury found in Jensvold's favor, but that decision was rendered moot in 1996 when a judge held that she did not have the right to a jury trial and called her version of events an "illusion" and "widely exaggerated and skewed."

"She's an incredible person. I know she struggled against significant adversity, personally and in her career, and overcame a lot of hurdles to do some wonderful research and be a really good practitioner," said Lynne Bernabei, an attorney who represented Jensvold in her case.

"I think she had a great compassion for women and improving the lives of women through good health research, and she had a real passion for that," Bernabei said. "It wasn't just a 9-to-5 job for her. She really cared."

Read more: http://www.myfoxdc.com/dpp/news/maryland/maryland-mother-son-dead-in-apparent-murder-suicide-080311#ixzz1U58rl6bn

Mason Medlam Would Have Been 6 Today. Autism. Wandering. Drowned.

Managing Editor's Note: I can hardly call this post a "Best of AofA" although we first ran it on 12/28/10.  Today would have been Mason's 6th birthday. But he was killed by his autism - make no bones about it. We send our thoughts and prayers to his family - and thank them for starting a foundation to protect our kids. That takes a special kind of courage and love, to forge something positive out of your worst nightmare. Happy Birthday, Mason. Love, all of us. KS

The stories seem to come faster now, and with almost numbing regularity. An autistic child goes missing, and there is no happy ending. Ninety-two percent of autistic children wander, and the number one cause of death of those who do is drowning. This year we honor two advocates who have put the issue on the map -- Sheila Medlam, the mother of a child who died; and Lori McIlwain, a national autism advocate who has passionately pursued the cause.

--

 Just six months ago, Mason Medlam wandered away from his home in Wichita, Kan., to a nearby pond; a frantic search was too late, in part because rescuers could not find the pond, and he subsequently died. This devastating loss led his mother, Sheila, to found the Mason Allen Medlam Foundation and to create a Mason Alert program, in which authorities would be provided -- in advance of any emergency -- the kinds of information that might have saved Mason's life: a current picture of the child; fascinations like railroads, small spaces, water; locations of all nearby hazards; whether the child is verbal or nonverbal; how to approach a child who is found.

UK Mom Who Strangled Son With Autism Cleared of Murder

Managing Editor's Note: I'll write here what I wrote in my book about moms and dads killing their children with autism. "...some commenters with either an intimate or tangential link to autism talked about how they feel sympathy for each of these women or men, who were clearly deranged by their anger, loathing, grief, fear, frustration, exhaustion, loneliness, and the absolute drudgery of caring for an autistic child. My comment? Fuck sympathy. Yes, it's often sheer drudgery to care for an autistic child. From this I know. I've sobbed in a steaming hot shower to escape the smell of a crapisode and the resulting mountain of laundry that loomed. I've locked myself in a bedroom, sat on the edge of my bed, and lowered my head between my knees, willing myself to calm down while gasping for breath.  ... For most families autism is a slog. It is 100 decathlons stacked on top of a thousand climbs to the top of Mt. Everest. You get to the top of the mountain and then another mountain appears in front of you. At the summit when you die, is nothing but worry for the adult children you will leave behind.  ...My children are not a burden. I carried them in my body and will carry them as long as they need me. That doesn't make me a mother superior. Just a good mother." 

I can't muster any sympathy for this Mom who strangled her son with her own hands.  I've said it before and I'll say it here. We are not allowed to murder our children. Basic parenting 101. Autism or not. Kim

Read more: http://www.dailymail.co.uk/news/article-2010301/No-point-fingers-heaven-Despairing-mother-strangled-autistic-son-walks-free-court.html#ixzz1Qsn8QeNr

A loving mother who strangled her autistic son because no one else would look after him walked free from court yesterday.

Devoted Yvonne Freaney, 50, admitted she killed her son Glen, 11, with a coat belt in an airport hotel room.

Freaney told police she killed Glen so 'no one could point fingers at him' when he was in heaven.

Mother-of-four Freaney also tried to kill herself but botched her attempts to slash her wrists - and was found alive by ambulance crews. She was cleared of murder but admitted manslaughter by diminished responsibility.

Judge Mr Justice Wyn Williams allowed to walk free with a supervision order.

The highly-experienced judge said it was 'the most difficult sentencing' he had ever had in his career.

Mr Justice Wyn Williams told her: 'You have already been punished enough.

'The only sensible and credible explanation is that your state of mind was truely abnormal.

'At the end you genuinely but irrationally believed that no-one but you could care for Glen and, since you were intent on killing himself, you had to kill him first.

'Not withstanding the fact that your crime was to kill a child, your culpability was very low.

'There could be no doubts you were completely devoted to Glen throughout his short life and showered him with love and affection.

'You cared for him with the best of your ability, day in and day out. He was very demanding but you never let that deflect from putting his best interests above those of your own.'

John Charles Rees, defending, said: 'She was undoubtably a loving mother to all her children and killed Glen out of love not malice.

'There was never any dispute as to the facts of this case. The issue was a medical one. She was suffering from a personality disorder.

'This is a wholly exceptional case we've heard, for reasons quite a distressing and haunting.

'She went through experiences that no one should ever have to go through.

'She needs to be reintroduced into the community and back into her family, that can't happen over night but can happen in a supervised and controlled way.'