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123 posts categorized "Nightmares"

Remembering Avonte Oquendo: Tackling Autism Safety

Avonte memorial
On October 4, 2013, Avonte Oquendo eloped from his autism school in Queens, New York and vanished into thin air.  His remains were found in January, in the icy waters of The East River.

Avonte was just one of many children, from tots to teens, who has died as a result of his or her autism. Safety is of paramount important in our community. There are orgs trying to promote safety, encourage programs and spread the world that autism is indeed deadly - from the outside in, which is to say, every bit as deadly as some cancers.

Big red toolbox

Our friends at National Autism Association are leading the way in safety with their Big Red Safety Box program.  That program is currently "open" for families to apply for a FREE safety kit.   Kits are available on a first come, first served basis and include:

1) Our Get REDy booklet containing the following educational materials and tools:

         A caregiver checklist
         A Family Wandering Emergency Plan
         A first-responder profile form
         A wandering-prevention brochure
         A sample IEP Letter
         A Student Profile Form

2) Two (2) Door/Window Alarms with batteries

3) One (1) RoadID Personalized, Engraved Shoe ID Tag*

4) Five (5) Laminated Adhesive Stop Sign Visual Prompts for doors and windows

5) Two (2) Safety Alert Window Clings for car or home windows

6) One (1) Red Safety Alert Wristband

Click HERE to apply for a kit or to make a donation to this life saving program. Thank you.

October 16 Dallas Screening: "Who Killed Alex Spourdalakis?"

Alex
Reserve your ticket today for the October 16 Dallas screening of "Who Killed Alex Spourdalakis?" A unique insight into how ignorance, negligence, and indifference in the US healthcare machine lead to the tragic death of a severely autistic Chicago teen, and a charge of Murder One for his mother and godmother.  

Thursday, October 16 7:30PM - 9:06PM at AMC NorthPark 15 & IMAX   8687 N Central Expy Ste 3000, Dallas, TX, US, 75225

Order your ticket today HERE.  The screening has a ticket sale requirement - please share this info with family and friends and invite them. Thank you.

Visit this site to see if there's a screening in your area - or request one.


Autism Mom Battling Cancer: Community Rallies Support

Melanie
An amazing woman by the name of Melanie Hamilton Baldwin changed the face of autism and cancer culture by telling her story to thousands as "Booty Kicker" in the Thinking Moms' Revolution's book Autism Beyond the Spectrum. Having once beaten breast and bone (hip) cancer; she now suffers liver, spine, and bone cancer in her other hip. For anyone who knows Melanie, two words come to mind. "Faithful" and "Godly." As she struggles to overcome her current issues, her severely affected son Luke, still requires 24/7 care and attention as he is self-injurious and quite ill, suffering the lingering effects of severe autism. Please consider donating generously to help her family care for Luke as she regains her health, and please help their family establish financial security that will help them thrive during her absence.

DONATE HERE NO AMOUNT TOO SMALL.

Life With Autism in Pictures Tells Story Media Ignores

Brandon Guppy
By Anne Dachel

Like most everyone out there, I get a lot of information from my Facebook page.  So many articles and videos that I would never be able to search out for myself, instantly appear there.  I really appreciate what my 4,100+ "friends" post to me. 

I recently found this: Life with Autism in Pictures: The lion who had no courage.

The photo really needs no words.  It's a mother with her disabled son.  The young man in diapers is the side of autism we never see in feel good stories during  April, Celebrate Autism Month.  The photo made me think of Michelangelo's Pieta, the Virgin Mary grieving as she holds the body of her crucified son, Jesus.   Or maybe one of the Mary Cassatt paintings of a mother and child.  The image of this maternal bond is universal.  It's also heartbreaking when it involves someone who was left like this because of the vaccines he received as baby.

The young man is Brandon Guppy, age 20, shown with his mother, Michelle.  Michelle has the blog, Life with Autism in Pictures,

where she writes about her son.  More importantly, she shows us photos of what his life is like.

Michelle: 

"On my 'Life with Autism' blog, it is my hope that the words you read are inspirational in some way. But on this blog --- I wanted it to be different. I wanted the pictures to be more powerful than the words. Here will be some of our most powerful pictures in our 'Life with Autism' - with only a few words to explain..."

Monday, Sept 8, 2014, Michelle posted, "The lion who had no courage" that reads like a journal account.  She specifically addressed members of the media, admonishing them to cover this issue honestly and thoroughly.

"Doing away with vanity & dignity tonight.

"I'm sure Brandon would forgive me if perhaps it would make one member of the mainstream media try and help him... I doubt they'll ever see this, much like I doubt today's seizures would be the last.  But, one can hope.... 

"He's had seizures yet again today...and finally at 8 pm he tried to get up.  He's been on the gymnastics mat on the floor of his bedroom right where he landed from the first seizure in falling out of bed this morning. Most parents have the luxury of waking up to the sound of an alarm.  I frequently wake up to the sound of choking, some body part banging against the wall, or a loud thud as he hits the floor.  I met him in the hallway and by the look in his eyes I knew we better go back in his room and not dare try and go downstairs.  It's hard to describe seeing your child like that...."

Michelle criticized the media for failing to report on the CDC whistleblower scandal.

...When Todd got upstairs from hearing him have a seizure, I asked him to take this picture.  I want the media to see who it is they are silencing by refusing to report on the CDC Whistleblower story.  I want them to see just how "vaccines save lives" actually plays out in real life.  I want them to see what the trade off of acute recoverable illnesses for chronic lifelong debilitating illnesses looks like.  And as much as they try to ignore it, that trade off does have a face.  And there are thousands of them.  I want them to see this and be brave enough to look me in the eye and ask me which I would rather my son have had - a miserable two week ugly rash in measles that would provide a lifetime of immunity and a stronger immune system for having survived it; or a lifetime of illness and seizures and a weakened immune system.  And I want them to show that answer to the world.

I want them to see who they have forsaken as an accomplice to their preservation of Pharma's fairytale illusions of health, herd immunity, and the greater good.

Continue reading "Life With Autism in Pictures Tells Story Media Ignores" »

Bay Village Teens Channel Stephen King Horror: Abuse Student with Autism

By Kim Stagliano

With horror and a sickening flashback to a Stephen King novel (and film by the same name) I watched the Bay Village Ohio teens play a terrible "prank" on a student with autism, using the ALS Ice Bucket Challenge as their "medium." (See below.)




As the epidemic of children with autism grows older, I fear they are in more danger than ever. Toddlers are naturally protected by most all mothers, not just their own.   The "it takes a village" method of child rearing, one could say. Which of us would not run to the aid of almost any child under the age 12, 13, even 16? Ah, but as our children turn into adults, that coccoon of safety becomes eroded. Cute faces have pimples. Chubbie tummies change into burgeoning figures. 

I'm in the position of having three teen daughters with autism. You want to talk about paralyzing fear for them?  Pour a cup of coffee and we'll chat - for six months.   Already one of my girls has been criminally abused (school bus, 2010.) And yet, like parents of typicals, we have to find a way to let our kids grow up and move forward.  We fight our own instincts to protect our vulnerable children, and force ourselves to "let them go" a bit and learn about the world.  But for the love of all that is holy, NOT this way.

Bay Village, Ohio has an opportunity to set an example for ALL villages.  As of this writing, police are considering arresting the teens.


House of Cards 200 pixelsKim Stagliano is Managing Editor of Age of Autism. Her new novel,  House of Cards; A All I Can Handle 50 pixel Kat Cavicchio romantic suspense is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa is available in hardcover, paperback and e-book.

Irish Children Subjected to Vaccination Experiments in 1930s

WeepManaging Editor's Note: I'm pretty jaded after 18+ years in the autism/vaccine injury community, but this story, this horrible story knocked me for a loop.  Imagine this horror in a Catholic nation, on innocent children, under the "care" of the religious and ask yourself, "Could that happen today - in a world of medicine for profit?" Has the current vaccination schedule ever been tested for cumulative safety?  Do we know the long term ramifications of delaying common, survivable childhood disease such as chicken pox and measles? Are children circa 2014 healthier than their peers decades ago? Also, Dan Olmsted informed me that Diptheria was the first mercury preserved vaccine in the 1930's.

Thousands of children in Irish care homes at centre of 'baby graves scandal' were used in secret vaccine trials in the 1930s

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Scientists secretly gave 2,051 children and babies diphtheria vaccine. They were used as guinea pigs for drugs giant Burroughs Wellcome in 1930s. Academic Michael Dwyer uncovered shock truth in old medical records. He found no evidence of consent, nor of how many died or were affected. Comes as Irish PM intervenes from U.S. over scandal of mass baby grave. Hundreds of babies are believed to have been buried at former baby home

Enda Kenny says he's ordered his officials to examine 'if there are others.'

Read more: http://www.dailymail.co.uk/news/article-2650475/More-mass-baby-graves-Ireland-Prime-Minister-Enda-Kenny-orders-investigation-memorial-800-dead-babies-planned.html#ixzz33u7e6Bte

RIP Danny Alger: Vaccines, Injury, Autism and a 1977 Court Compensation

Danny AlgerBy Louis Conte

For Danny

On Tuesday, April 29, 2014, Danny Alger, age 37, went to heaven. He was surrounded by his mother, Joyce, and father, Ed. Danny got to see God knowing that he was loved.

Danny Alger is one of the most important people our community has ever known.

In case 89-31V, Special Master Paul T. Baird ruled Danny “sustained an encephalopathy, the first symptoms of which appeared within three days of the second DPT vaccine that he received on March 27, 1977.”  The injury left Danny with seizures and developmental delays.

And the vaccine injury also left Danny with autism.

Danny Alger was one of the first cases to be decided by a hearing in the National Vaccine Injury Compensation Program (NVICP). It was a tough hearing but Ed, Joyce and their Attorney, Cliff Shoemaker, proved their case and managed to get Danny Alger compensated for his injuries.

The Algers weren’t trying to prove that vaccines caused Danny’s autism. Autism was barely understood in the late 1980’s because it was so rare. The Algers needed resources to care for Danny and managing his seizures was a never ending struggle. Autism was just another issue and a rare behavioral diagnosis is not your primary concern when you are fighting to keep your child alive.

Eventually, the money from the settlement ran out. It was never really enough and there is no way to petition the NVICP for additional assistance. Ed and Joyce went about their lives, took care of Danny, raised their other children and like all of us, did their best.

No one from the NVICP ever contacted them again. It seemed Danny and his family were supposed to fade into the fringes of the American landscape. It seemed they were supposed to become invisible.

Danny Alger was one of the first cases where the federal government, grudgingly, compensated vaccine injury victims. Danny was one of the first of those cases that also featured autism. As the years passed, there would be many more. The government wanted those cases to be invisible too.

I found the Algers after reading through dozens of old NVICP case decisions while doing the research that ultimately resulted in the publication of Unanswered Questions from the Vaccine Injury Compensation Program: A Review of Compensated Cases of Vaccine-Induced Brain Injury, 28 Pace Envtl. L. Rev. 480 (2011).  Ed and Joyce were the first people I called and it was one of the most remarkable conversations of my life. One of my sons with autism was making a racket while I was talking with Joyce and she just happened to mention that Danny used to make all sorts of noises because he also had autism.

Amazingly, Danny Alger was no longer invisible.

Continue reading "RIP Danny Alger: Vaccines, Injury, Autism and a 1977 Court Compensation" »

Shut Them Down! Rotenberg Center Burns Student with "Shock" Treatment.

WeepBy Kim Stagliano

My God... In this week after Passover and Easter, "'Eloi, Eloi, lema sabachthani?

Please take a look at this petition to SHUT DOWN the barbaric Rotenberg Center in Massachusetts.  This "school" (and Abu Graib is a summer camp) uses electric shock as a behavioral treatment. Painful, aversive, out of date, last ditch, aw who cares it's just mentally disturbed kids and autistic kids who are probably in the last place on earth that will take them electric shock.   Yes, Massachusetts (which happens to be my homestate) the ultra-liberal blue state where anything goes - except medical rights and freedom and respect and decency for children and their families.   The state where Justina Pelletier languishes in DCF after having been taken from her family by Children's of Boston.  

Here is the start of the petition by a former teacher's aide at Rotenberg.  As an aside, my Dad, now 91 years of age, played golf with Judge Ernie Rotenberg back in the 60s and 70s. And rumor has it, the Judge was a lot like Judge Smails - he used a "footwedge" to boost his scores.  His wife Gladys died just last year, her service held at the Synagogue in the town where I grew up.  The dichotomy, or irony (which seems too glib a word to suffice here) of this school having been named after a Jewish man - a school that tortures and maims as viciously as any concentration camp as far as I can see, is as vivid as the burns on the boy's body.

That any student remains there speaks to the tragedy of mental health and autism care for teens and children. There are so few good choices. NO ONE KNOWS WHAT TO DO! For the Alex Spourdalakis's, the Sky Walker's, kids who need care and medical treatment - not torture, the Rotenberg Center should be closed down for cheating children out of their very lives - it is barbaric and inhumane.  NOW. 

The video is disturbing, please be aware.  Kim

I deeply regret having worked as a teacher’s assistant at The Judge Rotenberg Center (JRC), a “special needs school” in Canton, Massachusetts, where children and teenagers with autism and other disabilities are administered electric shocks as a means of controlling their behaviors.  

I joined the JRC because I thought I would be helping these special needs students.  But it became clear that this practice was painful, traumatic, and more harmful than good. I never would have used these "GED" shock devices had JRC not told me and other staff in training that the GEDs had been “approved by the FDA”.  When asking an administrator about the severe thick and bloodied scabby injuries all over students' bodies, I was told that these machines had been tested and were “proven to be safe” as necessary to get FDA approval.  I did not know until 2012 that this was a lie!

Continue reading "Shut Them Down! Rotenberg Center Burns Student with "Shock" Treatment." »

Dr. Keith Ablow on Justina Pellietier Children's Hospital Of Boston Medical Freedom Case

Keith AblowManaging Editor's Note:  We in the autism community have been watching the Justina Pelletier case with horror (there is no softer word) as Children's Hospital of Boston took the teen from her family earlier this year.  Dr. Keith Ablow, popular psychiatrist, had this to say about the case on Fox.   You can link over to the FOX site to read the full post - we choose to excerpt -  but the final paragraph is critical:

Yet, I also know that a teenager has been taken from her family. I know that she was once a figure skater and has, since her time at Children’s Hospital, been photographed in a wheelchair. I know that she reportedly passed a note to her parents recently that accused the hospital of abusing her. And I am absolutely sure that if the medical records or other evidence cannot prove beyond a doubt that Linda and Lou Pelletier placed Justina in mortal danger by virtue of their psychopathology or willful negligence as parents, Children’s Hospital should be brought to its knees by paralyzing civil suits and criminal complaints, and the Commonwealth of Massachusetts should be exposed for what it may have become: a state that, under the determined leadership of Gov. Deval Patrick (who, by the way, threatened to jail anyone driving during a snowstorm this winter), teeters on the brink of abandoning all pretense of individual freedom.

Dr. Keith Ablow is a psychiatrist and member of the Fox News Medical A-Team. Dr. Ablow can be reached at info@keithablow.com.

My Dinner With The Familyof Justina Pelletier

In case you’ve ever wondered, when you take a psychiatrist to dinner (especially a forensic psychiatrist, like me), he doesn’t leave the office 100 percent. No well-trained psychiatrist can. The “third ear” we develop during training – the one that catches meaningful turns of phrase or attempts to be evasive – can’t be left at the office door entirely.

When I had dinner with Lou and Linda Pelletier and three of their four daughters, Jennifer, Jessica and Julia, a few nights ago in Massachusetts, I wasn’t trying to evaluate them. They aren’t my patients. But I was listening for discordant psychological notes, nonetheless – ones that might tell me I was sitting with people destructive enough to merit permanently losing custody of their teenage daughter Justina.

For anyone who hasn’t heard the story, the Pelletiers brought Justina to Boston Children’s Hospital early last year for a consultation related to complications from what they had been told was mitochondrial disease, a complex and controversial physical disorder diagnosed in Justina by doctors at New England Medical Center in Boston (and with which another of their daughters has also been diagnosed). Instead, the Pelletiers were told by a doctor who intervened in her consultation that Justina had no physical ailment, but was, instead, suffering from somatoform disorder – physical symptoms caused not by underlying bodily abnormalities but by underlying psychological issues.

The Pelletiers did not want to leave Justina at Children’s Hospital, but they were not allowed to take her home. She was seized by the hospital, which asserted the Pelletiers would not accept their daughter’s obvious psychiatric disorder and, therefore, clearly would impede needed treatment. Courts in Massachusetts have agreed, recently awarding permanent custody of Justina to the Massachusetts Department of Children and Families (DCF).

Continue reading "Dr. Keith Ablow on Justina Pellietier Children's Hospital Of Boston Medical Freedom Case" »

Gravity Wins: Journal Entries of Autism & the Heartache of Residential Placement

Inas
Admittance Day

By:  Inas Younis

Its takes strength to hold on, but it takes even more strength to let go.  But I am a mother and I could only do what came naturally,  and so I held on.    I held on as tight as I could without hurting him.      I held him when he tried to jump out of moving cars.  I held him when  he tried to attack the neighbors.  I held him when he tried run out into streets.   I even held him as a form of therapy known as holding therapy. And although he is now gone, I am still holding on, and I just don’t have the strength to let go.  Whoever said mothers are strong,  did not really understand the meaning of strength. 

But now the time has come.   Blinded by tears,  and  deafened by an  inner voice which keeps reminding me that mothers never give up on their children, I am going to let go.  But before I do,  I must throw myself  before a jury of my peers and ask for their forgiveness.   I know what you are thinking,  only God can forgive me.   But I don’t need forgiveness from God,  for he has been on and by my side since day one.  He was there while I screamed and cursed at the heavens for making my son autistic and epileptic.   He was there when I begged  for a miracle every day for ten years straight.  He was there for the countless sleepless nights when my son screamed in pain. He was there when my son had his first seizure.  He was there when I had my first panic attack.  He was there then, and he is here now.  I don’t need his forgiveness, for there is no sin in coping.   And I do not need forgiveness from my fellow man,  who was completely oblivious during  the beatings,  the fecal smearing,  the screaming,  the property destruction,  the insanity and horrors of my life which I hid from their  innocent eyes and ignorant hearts.    No,  what  I need  in order to let go,  is forgiveness from a jury of my peers. A jury of mothers who have  suffered some measure of the horrors I have for the last sixteen years.  For only  they can understand,  and not because they have been through it,  but because many of them  are still going through it.  They are my heroes, and after you hear my story, they will be your heroes too. 

So please allow me to plead my case ,  starting with the most obvious defense.   I tried everything!  

Was I aggressive enough with his therapy, his special diets,  his medications, you ask?  Well let me see if I can remember, because as most of us mothers with special needs children know,  we all suffer from  a bit of amnesia.  It’s  our brain’s way of dealing with trauma.  I think there is an acronym for it called  PTSD.  The world of autism is full of acronyms.  There is GFCF, SCD,  ABA,  ASD,  IDEA,  ESY,  and my all time  favorite,  WTF.   But luckily,   I kept very detailed journals, so no worries.    Of course at the time,   I kept them because I was trying to decode the mystery of  autism and in my case severe autism.  I micromanaged his every bite of food, supplements, medications, and  therapy in an effort to isolate cause and effect and determine  patterns of  behavior.  But no patterns emerged except for one;  I was going crazy.   I submit to the jury the following Journal entries. 

October 2003:   I am in autism hell,  which right now means hiding out in my bathroom while the devil has his way with my son.   According to my notes  the only thing I introduced in the last couple of days to his supplement protocol is an orange flavored fish oil.   Therefore,  no more orange flavored fish oil.  Note to self: use alternate fish oil.  To do list: email the following fish oil companies until I find the purest fish oil known to man. 

Continue reading "Gravity Wins: Journal Entries of Autism & the Heartache of Residential Placement" »

Autism Action Network Avonte Found: Call for Independent Investigations

Avonte memorial

From our friends at the Autism Action Network.
 
The worst fears of many were confirmed with the positive identification of remains found washed up on the Queens’ waterfront as those of Avonte Oquendo, a 14-year old boy with autism who was allowed to wander away from the Riverview School in Long Island City on October 4, 2013.

 Avonte was non-verbal and assigned to a classroom of six students with one teacher and an aide, which In New York would indicate it is a self-contained class for the most impacted students. According to published accounts, Avonte wandered away from his classmates and aide or aides in the school cafeteria, he then was challenged but not stopped by a school security worker as he left the school. School personnel did not determine that Avonte was missing for at least an hour and then they waited another hour before contacting the police department.
 
We are calling for a full investigation by independent entities into the multiple failures of the New York City Schools that lead to Avonte’s death. If Avonte’s mother had allowed Avonte to wander away from home she would at the very least be the subject of a child endangerment investigation. Therefore, we are calling upon Queens County District Attorney Richard Brown to launch an investigation into the possibility of criminal negligence on the part of New York City employees responsible for Avonte’s safety.
 
 Richard Brown
 Queens County District Attorney
 12501 Queens Blvd.
 Jamaica, NY 11415
 (718) 286-6300
 
The New York City Council does not have much power but it can launch oversight hearings.

Continue reading "Autism Action Network Avonte Found: Call for Independent Investigations" »

Rest In Peace Avonte Oquendo

Avonte memorial
Managing Editor's Note: Yesterday a news alert came in - the remains found in NY had been positively identified as Avonte Oquendo, missing 14 year old with autism who ran out of his school unsupervised (but not unseen) by staff.  We've been praying for his return since October 4, when he vanished into thin air - not an easy feat in congested Queens, NY.  Most of us whispered under our breath, "Water, go to the water, he went to the water."  Well, today we have his return - not what we wanted - but as a Mother, I think there must be some comfort in being able to bury your child and know you can still watch over him, even in death. To the Oquendo family, our heartfelt condolences. There but for the grace of God and a stroke of luck go most of us and our precious children.  RIP, Avonte.  Love, Kim  Send condolence cards to:

The Perecman Firm
Attn: The Oquendo Family
250 West 57th Street
4th Floor
New York, NY 10107

By Cathy Jameson

Last week, worry gripped my heart as I read that body parts discovered off the shore of the East River appeared to match that of a missing NYC teenager.  Missing since October 4, 2013, Avonte Oquendo wandered from his school.  Accusations and assumptions about how he was able to leave unsupervised are still being investigated.  Answers from that investigation may take time, but after months of wondering where Avonte wandered can finally be answered.  Several days after the grim discovery of bones and some clothing items, DNA positively identified the remains as 14-year old Avonte.  Words cannot express how sad I am for his family.

As the mother of a child with autism who is prone to wander, the possibility of a fatal outcome because of wandering is never far from my mind.  Ronan has gotten away from us before, but has been recovered quickly and with a far less search and rescue endeavor as Avonte’s search required.  Because I know the fear that comes with this sort of situation, each time I hear stories of children with autism wandering, I try to pray.  For month, I prayed for Avonte and his family as did many of us.  My prayers changed Wednesday.  Tears and sadness accompanied them.  The more overcome I was, I stopped praying.  I just couldn’t say any.  The reality of autism and of this devastating situation has become far too common and more than I could bear.

Autism affects a great many.  Autism can change a life, and sometimes in a way that is anything but positive.  Autism and wandering is not uncommon.  Autism is difficult, costly and consuming.  Autism can bring a family to its knees in a moment’s notice.  And what was confirmed again this week, autism can be deadly.

Continue reading "Rest In Peace Avonte Oquendo" »

Remember Avonte Oquendo This Christmas Day

Avonte Oquendo has been missing in New York City since October 4th when he was allowed to bolt out of his school.  Please take a moment to remember him, pray for him if so inclined, and for his family too. Christmas is about finding a safe place for your baby, is it not?  Let's hope for tidings of great joy for the Oquendo family - and soon.  Merry Christmas.  Kim

Avonte Still Missing

Fear, Ignorance, And Me. Avonte Oquendo's Disappearance.

Avonte Still Missing

By Natalie Palumbo

I am 19, a freshman Motion Designer at Ringling College of Art and Design, and I have an older brother with low-verbal autism. Currently, I am enjoying a long winter break after a successful first semester. My projects for 4D were among the featured, and I am excited for next semester because I will be learning traditional animation techniques, and learning stop motion.

 Anthony is never far from my mind, even when I’m away at college. When I heard about 14-year-old Avonte Oquendo being missing, my heart sank. The feeling got worse as time grew along with my anxiousness after two months of him being missing. Personally, these kinds of stories where children end up missing, especially when they are unable to communicate, are the stories that upset me the most. I think of Anthony, and how vulnerable he is because he’s low verbal. These stories are the reason that I try to strive for success for both of us, because I want to avoid the possibility of danger and heartbreak. Some of the students do not understand why I am so driven.  I consider attending Ringling a privilege, and nothing is more important to me than the work.

About two weeks into being at Ringling, I broke my left foot while working. My camera was raised ScooterNattieon a tripod, and I had to step on a chair to look through the viewfinder. I suffered a metatarsal fracture stepping down off the chair. For two months, I was in a medical scooter, restricted from walking. Despite the injury, I loved my classes, and my teachers were pleased with my work. I was happiest when I was working, and called home frequently to let my parents know I was okay and enjoying college. My mother was concerned that my broken foot would interfere with my adjusting to college life, and I wanted her to know that I was really all right. My teachers were so encouraging that the phone calls were to share good news more than anything else.

Despite the fact I was happy, getting all my work done, and coping on a medical scooter, a couple of freshmen felt the need to impose their opinion on me. My mother has told stories of strangers approaching her with judgments and opinions about Anthony. Anthony is physically beautiful, so many questioned his level of disability. She often said she had to endure thoughtless comments from people that didn’t understand her situation. Little did I know I was about to get a taste of those thoughtless judgments.

A couple of students (who incidentally offered me no help and showed no desire to socialize with me) took it upon themselves to question why I called home so much. I attempted to explain that I was happy, our family dynamic is different, and that we have always worked together to manage Anthony and his autism. Because we’ve always worked as a team, we do not have an adversarial parent-child dynamic. Those concepts do not apply in our house because the autism doesn’t care. I had hoped for understanding, and received judgment instead. They did not want to consider my special circumstances, and insisted I wasn’t coping. One person actually said, “But your brother isn’t here,” and insisted that she read in a book that my behavior was unhealthy. Dumbfounded and annoyed, I responded with, “Most general books do not address families with issues like mine.”

Continue reading "Fear, Ignorance, And Me. Avonte Oquendo's Disappearance." »

Son with Autism Accused of Murdering Mother Autism Advocate Susan Dunne in Ireland

WeepNote: You might recall the terrible beating death of Dr. Trudy Steuernagel, a Kent State (Ohio) professor who had written a letter to be opened in case of her death at the hands of her growing, strong autistic son. He is in an institution at this time.   Details are unfolding in Ireland about a case of another son (allegedly) murdering his Mother. Susan Dunne was an autism advocate who reached out to others in neeed. I fear we will see much more violence as the pediatric autism populations ages into full adulthood.  Violence in both directions.  Those suffering from autism, pain and behaviors lashing out at those around them - and parents (and caretakers) alike reaching the darkest corners of their psyche and murdering those in their charge.  The epidemic is not a gift. It's not just a difference. And to gloss over it as if it was any such thing is to be complicit in a future that is anything but bright.

By Anne Lucey of The Irish Times

A man has appeared before the District Court in Killarney, Co Kerry charged with the murder of his mother at their rural home near Listowel.

Patrick Dunne (20) of Ballingearagh, Lixnaw is charged that he did murder Susan Dunne at Ballingearagh on November 27th last.

Arresting officer Detective Sergeant John Heaslip told the court he had formally arrested and afterwards charged Patrick at Listowel Garda station on Thursday night. The accused made no reply to the arrest, charge and caution.

The State’s application was to remand the accused in custody to St Patrick’s Institution to appear again in Listowel next Wednesday, Listowel Garda Supt William Leahy said.

Listowel solicitor Patrick Enright said he was making no bail application but was putting the State on notice that he would be doing so.,

The solicitor said he had been in touch with the HSE regarding provisional services to meet his client’s needs if he is released on bail.

He was asking that his medical needs be met and “particularly for special cognisance” given to the particular needs of this young man.

Continue reading "Son with Autism Accused of Murdering Mother Autism Advocate Susan Dunne in Ireland" »

Find Avonte Oquendo: Autism, Wandered from School 10/4 Queens NY

Avonte Still
Please remember that Avonte Oquendo is still missing.

Avonte

FROM 10/17/13:  We've been following and updating the Avonte Oquendo story on our FB and Twitter feeds. In case you have not heard, Avonte eloped from his school in Queens, New York and has not been seen since  the 4th.. His family is moving heaven and earth to find him. Officials have stopped train work - Avonte loves trains and there is the hope he is alive somewhere in the subway or commuter train system.  

Please send out good thoughts, prayers if you are so inclined, and alert anyone you know in New York City, New Jersey and Connecticut that Avonte may have boarded a train and been transported away from his family. 

Facebook Page Missing Avonte Oquendo

From ABC New York:

LONG ISLAND CITY (WABC) -- The desperate search for Avonte Oquendo continues, as the reward was increased to $70,000 for information leading to his safe return.

Continue reading "Find Avonte Oquendo: Autism, Wandered from School 10/4 Queens NY" »

Find Avonte Oquendo: Autism, Missing Since 10/4 Queens NY

Avonte 95


On this Halloween, there is a family in New York hoping for a treat - 14 year old Avonte Oquendo eloped from his school in Queens., NY on Friday October 4. There has been no trace of him since, despite weeks of searching and a $95,000 reward.

Wandering is a huge problem, a life threatening issue in our community.  Toddlers to teens and as the population ages, we'll hear of 20 somethings wandering.

If you want to help - this is from the Find Avonte team. The photo on this post is the flyer. Right click it to download and save. Also, there is a petition to start an AVONTE ALERT for autism in New York - view it HERE.

MISSING Flyers are a continued need at the search site! If you are willing and able to donate flyers, please mail to Jennifer Prevete, 402 Graham Ave. #147, Brooklyn, NY, 11211 or drop off at the command post at 1-50 51st Avenue, Queens.

Flyers in the English, Spanish, Mandarin, Cantonese and Bangladesh languages are needed most. They may be downloaded and printed from the photos section above. Thank you!

Wed, October 30, 2013. Avonte Oquendo is still missing! He is 14 years old and has the mind of a young child. He is autistic and mute. He needs your help to get back home. Please get out and search. He was last seen wearing dark blue almost black jeans, black Jordan sneakers and a grey striped shirt. He is afraid of strangers and likes to hide. If you see him, do not approach him, call 911 IMMEDIATELY and follow him at a distance. Do not let him out of your sight. Thank you for your help and your vigilance in searching, it is greatly appreciated! Spread the word. Tomorrow is Halloween, there will be millions on the streets, let's Bring Avonte Home!!!!

Find Avonte: 14 Year Old With Autism Missing Queens NY Since 10/4

This is the new flyer to search for Avonte Oquendo, who eloped from his Queens, NY school on October 4. Avonte is 14, weighs 95 pounds and is pre-verbal.   Use #FindAvonte as a hashtag.

Avonte New Flyer

Avonte Oquendo, 14, Preverbal Autism, Missing From Queens NY

Avonte

We've been following and updating the Avonte Oquendo story on our FB and Twitter feeds. In case you have not heard, Avonte eloped from his school in Queens, New York and has not been seen since  the 4th.. His family is moving heaven and earth to find him. Officials have stopped train work - Avonte loves trains and there is the hope he is alive somewhere in the subway or commuter train system.  

Please send out good thoughts, prayers if you are so inclined, and alert anyone you know in New York City, New Jersey and Connecticut that Avonte may have boarded a train and been transported away from his family. 

Facebook Page Missing Avonte Oquendo

From ABC New York:

LONG ISLAND CITY (WABC) -- The desperate search for Avonte Oquendo continues, as the reward was increased to $70,000 for information leading to his safe return.


On Thursday, the Manhattan Children's Center, a not-for-profit private autism school, had matched the $5,000 put up Wednesday by the law firm Mayerson & Associates. Then on Friday, Autism Speaks and an anonymous donor upped that reward to $70,000.

As the search entered its eighth day Saturday, there are few clues to his possible whereabouts. Friday evening, the police and volunteers spent the evening searching the subway system.

A red tent has now been set up in front of the Center Boulevard School, where Oquendo disappeared from last Friday, to make the search more of a 24-hour operation. Volunteers, including at least one family member, are staffing it around the clock.

Continue reading "Avonte Oquendo, 14, Preverbal Autism, Missing From Queens NY" »

Lost & Afraid: Where To Turn When Autism Turns Violent

PreventionEditor's Note -- Every so often a reader will comment on a story we've published some time back, and it's easy for those to disappear without being noticed. So we thought we'd call attention to this new comment to a post we originally ran in 2011, "The Dark Side of Autism -- Violence, Assault, Police Interaction." (You can read that story below the jump.) This new comment, by Lost and Afraid, captures the desperate reality of autism for so many even as we keep hearing about the small proportion with higher functioning lives ... suicide, violence, family stress, profound disability. What fun. -- Dan Olmsted.

Managing Editor's Note: I extend a personal invitation to autism self advocates to reach out to Lost & Afraid through Age of Autism with their useful insight as to how to prevent the situation from escalating.  Please leave a comment with your suggestions as to how to ensure a safe outcome for all.  And for families like Lost & Afraid,  perhaps the autistic self advocates at ASAN, including their leader Ari Ne'eman who sits on the IACC in DC can assist you. They are always concerned following a tragedy and I'm sure will have concrete resources and personal assistance to help their autistic brethren and sisters.  You can reach them at info@autisticadvocacy.org. Thank you.

I have a 16-year-old brother-in-law with severe autism, and he gets very violent on almost a daily basis. I didn't have any experience with autism before him, and my wife and mother-in-law seem to forget this, as now I'm not even allowed to say anything to him when he's doing something wrong. I've been accused of being at fault for his outbursts of violence, and I've been threatened by members of my wife's family with physical violence if they hear about me treating him that way again.

His father took his own life last year, and since then it's gotten worse and worse. Now this kid who can't even communicate that he has to go to the bathroom until he's shit his pants, has this huge emotional trauma to deal with. And since his mother had to go to work to provide for the family, my wife got stuck watching him almost every day, so now I have this violent person in my home at least four or five days a week. I fear for the safety of my one-year-old daughter, who he has already hit once before (and I got blamed for that incident). There are no resources for people in my position. I've tried doing research online about the link between autism and violence, and how to deal with it.

Everything I've found is useless.

Some of the articles sugar-coat the problem by coming out with statistics about how violence is only present in 3% of autistics. Well, that's fantastic for the other 97%, but what am I supposed to do the next time I get head-butted in the chest because I won't let him run out of my apartment before everyone else is ready to go? The rest of the articles I've found are terrifying, like the story of Trudy Steurnagel, who was beaten to death by her autistic son. I don't know what to do.

Continue reading "Lost & Afraid: Where To Turn When Autism Turns Violent" »

CBS and Autism Media Channel: A Prelude To a Tragedy The Case of Alex Spourdalakis

Alex S(Note) The video from this morning is below, if you would like to call in to thank CBS for running Alex's story the number  is 212-975-3247.

CBS and Autism Media Channel present a prelude to tragedy

Where: CBS THIS MORNING 
When: Friday August 30, 2013, 8.00 am EST

In an unprecedented insight into the apparently senseless and violent death of Alex Spourdalakis, a 14 year-old boy with autism, CBS in collaboration with Austin-based Autism Media Channel presents a game-changer – intimate documentary footage of the unfolding crime. 

In a country where 1 in 25 children born today will develop autism, this compelling story is certain to create universal debate.  Alex’s tragedy is a story of our time, pitting the old against the new, capturing the iniquity of autism when perceived as a psychiatric oddity rather than a medical disease - an epidemic in an unprepared world. Using exclusive footage that followed Alex’s journey leading up to his death, CBS and Autism Media Channel present a story, unique in documentary history – one whose outcome should have been prevented; one that will change perception.

Polly Tommey, autism advocate, Autism Media Channel director, and founder of The Autism Trust, says the answers are staring us in the face. "Alex was one of millions of children at risk," she said. "Without a complete overhaul of our approach to autism treatments, therapies, and services, tragedies like this are inevitable."

For interviews with Autism Media Channel and professional enquiries please contact Ryan Parmenter at Modern Panda Pubic Relations on 512 797 2219 or email ryan@modernpandapr.com






http://www.cbsnews.com/video/watch/?id=50154011n

Learn more at  autismmediachannel.com

See also: The Autism File magazine free at autismmediachannel.com

MSM Covers Autism Wandering: 60 Children Dead in 4 Years

Big red box

Thank you to National Autism Association for spearheading this important article in the mainstream media about autism and wandering.   The NAA Conference is this November in St. Pete Beach, FL and features special guests Jac and Chris Laurita, autism parents and Real Housewives of NJ stars.

By DAVID CRARY AP National Writer
August 11, 2013 (AP)

The 3-year-old girl wandered away from her grandmother's home in Wareham, Mass., in mid-April. A frantic search began almost immediately, and within an hour little Alyvia Navarro was found unresponsive in a nearby pond. She was pronounced dead the next day.

A month later, across the continent, a larger search unfolded over three days as hundreds of emergency service personnel and volunteers fanned out around Clearlake, Calif., looking for 9-year-old Mikaela Lynch after she vanished from her backyard. The outcome grimly echoed the Wareham search: A dive team found Mikaela's body in a muddy creek.

The two girls were the first of at least 14 children with autism known to have died this year after slipping away from their caregivers. All but one of them drowned, evidence of a fascination that many autistic children have with water. The body of the latest victim, 11-year-old Anthony Kuznia, was found Thursday in the Red River after a 24-hour search near his home in East Grand Forks, Minn.

The tragic phenomenon goes by various names — wandering, elopement, bolting — and about half of autistic children are prone to it, according to research published last year in the journal Pediatrics. 

That would be a huge number. The Centers for Disease Control and Prevention estimated last year that 1 in 88 children are affected by autism, and a federal survey this year pegged the prevalence rate at one of every 50 schoolchildren — more than 1 million children in all.

Wandering has led to the deaths of more than 60 children in the past four years, and the fear of it can make daily life a harrowing, never-let-your-guard-down challenge for parents. Read the full story HERE.

How do you manage wandering in your home?

Contest: Oy Vey! Autism and The Comments We Hear.

Tradewinds-Island-Grand-Pool-St-Pete-Beach

Win registration for two to the The National Autism Association's Fall
Conference in St. Pete Beach.
(And a cocktail with NAA President Wendy Fournier.)

A group of us were emailing about some of the cruel comments and actions of family members in They said it regard to our children with autism. It seemed everyone on our thread had a horror story that had hurt them to the core. And sharing the hurt made us feel less alone, and even made us laugh, in a "oy vey" kind of way. We decided to open the comments to our readers so you can share your own story - anonymously.   Feel free to use any screen name when  you comment. We will compile the comments into the body of this post and then start voting.  Here are a couple to start you thinking.

"Is so and so going to go to college?"  (So and so is a nonverbal teen with autism who tests at the preschool level.)

"Leaving money to so and so would be like leaving money to a houseplant."

"You should be happy we are less ashamed by your child now than were were at first."



Here are your comments:

"If it were my son, I'd have put him in an institution."

"It isn't so much the comments for me as it is the silence. Going to a cookout over a family member's house and having the entire family ignore your 6 year daughter with Asperger's and 4 year old son with PDD because they are not worth their time."

"God only gives you what you can handle"

"When are you gonna take that kid off that crazy diet? "

"If that was my kid I would smack him and have him locked up in a psych hospital, how can you live like this..."

"You should put him in an institution and get on with your life." - from a former friend with no children

"At least she's pretty"

Continue reading "Contest: Oy Vey! Autism and The Comments We Hear." »

Mother, Godmother Charged with First Degree Murder



Details on the charges in the Alex Spourdalakis murder from ABC in Chicago.

"Prosecutors allege that mom Dorothy Spourdalakis and godmother Jolanta Agatha Skrodzka planned for a week to murder the teen. They believe the constant care may have been too much for the women, who served as 24/7 caregivers for the teen."

Autism Media Channel on the Tragic Death of Alex Spourdalakis

Autism Media ChannelFrom  Autism Media Channel.

We learned this morning of the tragic death of Alex Spourdalakis, a young man with severe autism whom we were seeking to help because of the failure of the medical system to provide for his needs. We do not know of the circumstances of Alex’s death and await further news on this. We understand from news reports that Alex’s mother and Godmother are in the hospital and receiving treatment, we are deeply concerned for their well-being at this tragic time.
 
We have tried to highlight the desperate plight of Alex and his family and bring to public attention the failings of the medical system when trying to deal with individuals like Alex. We are aware of many families in a similar state of crisis and our fear is that more cases like Alex will follow.
 
We are deeply saddened by the loss of Alex, a bright 14 year old who had so much potential - Alex just needed appropriate medical care and somewhere safe to live.
 
Contact info@autismmediachannel.com

14 Year old with Autism Alex Spourdalakis Found Stabbed to Death

WeepFrom Chicago: "Police are investigating the death of Alex Spourdalakis, 14, who was found stabbed to death Sunday in his home in suburban River Grove.

The autistic teen lived with his mother in an apartment on the second floor of a building in the 8100 block of West Grand Avenue. Spourdalakis was found stabbed to death is his bed.  Police also found his mother and a caregiver near the body.  They are hospitalized.

River Grove police responded to a call from a relative at about 3 p.m. Sunday afternoon.  They found the teen with multiple stab wounds to his chest.  He was pronounced dead at the scene. Investigators say Spourdalakis’ mother and the caregiver were semi-conscious.  One was on the boy’s bed.  The other was lying on the floor next to the bed. The women did not have visible injuries.  They remain at Gottlieb Hospital in Melrose Park. Officers did not find a weapon in the apartment.

The River Grove Police and Fire Departments have had contact with the autistic teen before. Police Chief Rodger Loni says the teen would become violent and refuse to go to the hospital for routine appointments.  “He was a big, strong boy and he didn’t want to go to the hospital willingly so he had to be restrained when they took him for treatment,” Loni told WGN...."

Read more: http://wgntv.com/2013/06/10/police-investigate-death-in-river-grove/#ixzz2Vpw68Az8

Freddie Williams, Age 14, Autism, Wanders, Drowns

Freddie WilliamsManaging Editor's Note: We have had the grim task of informing readers of three children with autism who wandered and drown in May. And now - a fourth. Freddie Williams, of Webb City, Missouri. Our condolences to his family. From our hearts. Please support  the National Autism Association Big Red Safety Box program. From KOAM-TV:

The story of a missing boy takes a tragic turn as police report the child's body was found early Thursday morning. More than a thousand people searched the Webb City area Wednesday night for Freddie Williams, 14, but despite their best efforts, he was found Thursday at about 8 a.m. in a private pond off of Madison, just north of Webb City High School. Authorities say he apparently died from drowning.

KOAM TV 7

Appeal to Chicago Autism Community Alex Spourdalakis About to Be Moved to Psychiatric Facility



Please contact Info@AutismMediaChannel.com if you are in the Chicago area and can help Alex escape this nightmare.

It's Not a Tornado But It's Deadly. This is Just Autism.

 

Owen Black
Owen Black
How many Americans know the names Owen Black, Mikaela Lynch and Andrew Howell?  Why hasn't the pediatric fear machine gone full throttle to warn parents about this deadly scourge?  Why isn't CDC providing an immediate preventative solution? Ah, because this is "just autism," not an infectious  disease like chicken pox, or flu, right? Sadly, yes, that's right. And it's so plainly wrong.  Autism is a tornado for families facing the challenges of a diagnosis. Hey....

 

It's just autism.

It's just three beautiful children. Two sons and a daughter.

Mikaela Lynch
Mikaela Lynch

One newspaper did report the deaths The Zanesville (Ohio) Times Recorder did a fine job of sharing details about wandering and death in autism. But where were "the big guys?"  Where is NBC's Nancy Snyderman, weeping openly and begging parents to take caution? Where is the American Academy of Pediatrics, too busy telling America about the dangers of spices? Hey....

 

It's just autism.

It's just three beautiful children. Two sons and a daughter.

Laurie Cramer of Autism Society of Akron was quick to explain the realities of autism in the article. She contacted us at Age of Autism and asked us to share with readers that the there is a fund for burial costs for Andrew Howell.

Continue reading "It's Not a Tornado But It's Deadly. This is Just Autism." »

Second Child with Autism Wanders, Drowns in One Week

 

Weep(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
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
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. 

Continue reading "Second Child with Autism Wanders, Drowns in One Week" »

Heartbreaking Story: Adult Son with Autism Left to State

Broken heartManaging 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"

Continue reading "Heartbreaking Story: Adult Son with Autism Left to State" »

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

BucknamManaging 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 15th 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. 

Continue reading "John's Missing: Autism, Wandering and Why We Need Action Now" »

President Obama: 1 in 50 American Kids with Autism?

Action alertFrom 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

WpManaging 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.

AlexSick

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"? 

Continue reading "Day 22 of Autism Agony at Loyola U Medical Center " »

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

JeannaandAlex


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. 

Continue reading "The Case of Alex Spourdalakis: Continued Ineptitude at Loyola University Medical Center" »

Day 19: Chicago Hospital Locks Down Autistic Patient

Alex1UPDATE 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 Act now! 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.

AlexRashes2

Continue reading "Day 19: Chicago Hospital Locks Down Autistic Patient" »

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

Wizard of Extortion Judge Rotenberg Center-Matthew Israel  Adriana GamondesBy Adriana Gamondes

On Febrary 22th, 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?

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

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

Autistic_kidsGENTILE 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.

Continue reading "Gentile Calls for NY to Remove All Children From Rotenberg Shock Punishment School" »

Patterns In Chaos: Child Psychiatry, Violence and Autism

Wakefield2By 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.”

Continue reading "Patterns In Chaos: Child Psychiatry, Violence and Autism" »

Georgia Mountains YMCA Dismisses Boy with Autism from After School Program

LoganclimbBy 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. 

Continue reading "Georgia Mountains YMCA Dismisses Boy with Autism from After School Program" »

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

FallingFalling, 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.

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

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

Big red box

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.

Continue reading "Findings Published Today In Pediatrics Show Half Of Children With Autism Wander From Safety " »

Autism College News: Mighty is the Fear

Chantal4Managing 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?

Surveillance cameraOur 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.

Continue reading "Back To School: Are Cameras Needed?" »

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

AG horse 1

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.    

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

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

   No Way Adriana Gamondes

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.  

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

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

FailureManaging Editor's Note: "Six years and almost a billion dollars later, Insel Insel Dr. Kinghas 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?

DcWhat 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:

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

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

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 Harry Horne-Robertsexercise 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

Autism Reality

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.’

Continue reading "The Side of Autism The Media and Others Don't Want You to See" »