Friday, June 26, 2020

CED Reports Autism Rate in US Increased by 10 Percent

CDC estimate on autism prevalence increases by nearly 10 percent, to 1 in 54 children in the U.S.

Important progress made in key indicators: For the first time, prevalence rates are the same for black and white children, and significant progress made toward number of children receiving developmental screening by age 3
Autism Speaks 2020 Autism Prevalence
NEW YORK (March 26, 2020) - The Centers for Disease Control and Prevention (CDC) released today its biennial update of autism’s estimated prevalence among the nation’s children, based on an analysis of 2016 medical and/or school records of 8-year-olds from 11 monitoring sites across the United States. The new report demonstrates real progress in early screening and diagnosis, the result of more than a decade of awareness and advocacy work by Autism Speaks and other organizations.
The report reflects a continued increase in the prevalence of autism spectrum disorder (ASD) in the United States. Importantly, for the first time the CDC found no difference in the prevalence rates between black and white children, indicating that gaps in access to screening and diagnosis may be closing.
“The world of autism has changed considerably since we were founded in 2005, when the estimated prevalence was 1 in 166,” said Autism Speaks President and Chief Executive Officer Angela Geiger. “Core to our mission since our founding has been to increase screening and lowering the age of diagnosis, especially in minority populations. This news could not be more rewarding to the thousands of Autism Speaks advocates, volunteers and community partners, as well as campaign partners Ad Council and BBDO whose award-winning work made this possible. It shows that when non-profits make an issue a priority, change happens.” 
Key findings include:
  • One in 54 children had a diagnosis of ASD by age 8 in 2016, a nearly 10 percent increase over 2014 when the estimate was 1 in 59.
  • While the CDC found no difference in prevalence rates between black and white children, a gap remains in prevalence among Hispanic children, indicating a need to expand screening and intervention among this group. Further, black and Hispanic children identified with autism received evaluations at older ages than similar white children, again indicating that more needs to be done in this area.
  • The number of children who had a developmental screening by age 3 increased from 74 percent to 84 percent, a sign of potential progress toward earlier and more consistent screening by healthcare providers.
  • Boys are four times as likely to be diagnosed as girls, holding steady from previous reports. This indicates the need for more research to understand the gap in prevalence and ensure girls on the spectrum are receiving the care they need.
  • Significant differences remain in the frequency of autism diagnosis between the CDC’s monitoring sites. These range from a low of 1 in 76 in Colorado to a high of 1 in 32 in New Jersey. This may be due to how autism is diagnosed and documented in different communities.
“We have worked tirelessly to fuel research that would allow earlier diagnosis and intervention; advocacy with and for the autism community to ensure access to care; and programs and services that allow our constituents to reach their full potential,” Geiger added.  “Despite the progress made, we know that more is needed. We will continue to champion the importance of early screening and intervention for all children, as we know this leads to better outcomes and increases the opportunity for people with autism to thrive.”
Autism Speaks calls on legislators, public health agencies and the National Institutes of Health to advance research to better understand the continued increase in prevalence and the co-occurring medical conditions that may accompany autism. In doing so, the organization urges policy makers to double the federal funding of autism research, in accordance with the guidance of the Interagency Autism Coordinating Committee (IACC), and to advance policies that better provide services and supports for early intervention, education, transition to adulthood, employment and community living.  
The CDC report was released in advance of April’s World Autism Month and World Autism Awareness Day (April 2), which Autism Speaks dedicates to increasing global understanding and acceptance of people with autism. To engage in this effort to create a kinder, more inclusive world, visit
To join the conversation, find @autismspeaks on Facebook, Instagram and LinkedIn. For personalized support and questions, contact the Autism Response Team at 1-888-AUTISM2, en Español at 1-888-772-9050 or by email at  

About Autism 

Autism, or autism spectrum disorder, refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication. We know that there is not one autism but many subtypes, and each person with autism can have unique strengths and challenges. A combination of genetic and environmental factors influences the development of autism, and autism often is accompanied by medical issues such as GI disorders, seizures and sleep disturbances. Autism affects an estimated 1 in 54 children. 

Thursday, June 11, 2020

Schools Out Forever!!! Nick's Final Graduation

Sometimes a Picture Says What Words Cannot...

“Be a bush if you can’t be a tree. If you can’t be a highway, just be a trail. If you can’t be a sun, be a star. For it isn’t by size that you win or fail. Be the best of whatever you are.”
Martin Luther King

Congratulations my beautiful son, and the entire class of 2020 

Tuesday, June 2, 2020






Thursday, May 28, 2020

Lizzo, Beyoncé and Cardi B are among the celebrities speaking out over the death of George Floyd

Lizzo, Beyoncé and Cardi B are among the celebrities speaking out over the death of George Floyd, an unarmed black man who died after being pinned down by his neck by white police officers in the US.
Celebrities have spoken out over the death of George Floyd, an unarmed black man who died after being pinned down by his neck by a white police officer in Minneapolis, Minnesota.
Beyoncé, Lizzo, Megan Thee Stallion, Ariana Grande, Harry Styles, Cardi B, Selena Gomez, Justin Bieber, Khalid, Taylor Swift, Doja Cat, Demi Lovato, Halsey, Camila Cabello and many more stars have expressed their shock over the death.
There have been protests across the US following Mr Floyd's death, which many Americans have cited as the latest example of systemic police brutality against African American citizens.
Police were filmed kneeling on the handcuffed man's neck for at least eight minutes, despite Mr Floyd saying he couldn't breathe. The 46-year-old security guard was later pronounced dead in hospital. "We have an extremely, inherently racist and corrupt police system," Lizzo said on her Instagram.
"Now I'm not saying that every police officer is a racist person and a murderer but I am saying that at the core of the police organisation there is a system of racism and corruption."
Beyoncé paid her respects by changing the homepage of her website to a photo of Mr Floyd with the message: "Rest in Power George Floyd."
George Floyd, who died after being pinned down by his neck by police officers in the US
George Floyd, who died after being pinned down by his neck by police officers in the US. Picture: George Floyd
Cardi B posted a powerful tribute to Mr Floyd on Instagram, writing: "Enough is enough! What will it take ? A civil war ? A new president? Violent riots ? It’s tired ! I’m tired ! The country is tired !You don’t put fear in people when you do this you just show how coward YOU ARE ! And how America is really not the land of the free !"
Ariana Grande demanded justice for Mr Floyd's death, writing on her Instagram story: "Justice is not just about specific officers being arrested. it’s about dismantling the systems that make it possible."
Demi Lovato called on her followers - "especially white people" - to do more to fight racism and recognise privilege within society: "Do not let your discomfort surrounding social issues prevent you from speaking up for those IN DANGER.
"Until this STOPS COMPLETELY - THE BLACK COMMUNITY WILL CONTINUE TO LIVE IN DANGER. DO YOUR PART. THIS INVOLVES YOU TOO. #GeorgeFloyd, I hope you RIP because it isn’t fair so many didn’t do their part to ensure you lived in peace."

Doja Cat encouraged her 1.6 million followers to sign a petition calling for "Justice for George Floyd", which has close to half a million signatories, and shared a link to the Official George Floyd Memorial Fund.
The fund was set up by George's sister Philonise Flloyd to "cover funeral and burial expenses and to assist my family in the days to come as we continue to seek justice for George" and has so far raised over $360,000.
The incident began when officers were called to a report of a customer attempting to use a counterfeit $20 bill at a store. The four Minnesota police officers involved were fired on Tuesday afternoon and the FBI is now investigating.

Endangered Species in America Update: African American and Developmentally Disabled are in Danger in America

How do we define the most vulnerable in our communities? Typically, we think of the sick, the elderly, homeless and the physically and mentally disabled.  But that’s not really it, is it? 

Today after watching George Floyd beg for his life while he laid on the ground handcuffed, struggling to breath while an officer of the law held his head down with his knee, until he died. To hear George, beg for his life and then call out for his mother as he took his last breaths ripped me to my core, as it should every mother and every human being.  

Sadly we have added African American Males to the list of vulnerable populations, maybe even the endangered species list because they are not safe or protected in America.  As a mother of a son who checks two of the boxes that make him vulnerable; Mental Health and African American. The older he gets the more frightened I get.  My son does not understand social guidelines, he looks like a typical grown man, but when it comes to understanding danger or the concept of social appropriateness, he is like a 3-year-old.  

Nick my beautiful boy does not know what a crime is. He does not know what molestation is, he has no “Spider Sense” that informs him when something is off or simply not right.  He does not know it’s not okay to stare or walk right up to little kids to see their T shirts with characters from cartoons he loves like Winnie the Pooh, or the characters from Frozen. He does not understand the importance or the implications of a Policeman yelling “Stop”, or “Take your hands out of your pockets.  

As a mom it breaks my heart to know that my son is an endangered species. To me he is a beautiful boy, to others a potential threat. My son is not valued by our communities and he is NOT safe in this country and this brings a degree of sadness to me that I can’t even totally articulate.

I have been writing about this for years, this is not new. I just always hoped it would get better.  As I pulled up some of my past posts, I am reminded that things are not better.  You can read a few of my old posts below.

I am so grateful I am in a position to keep a constant eye on my son and to never have him go out alone. I have always been proud to hire other African American men to be his aids, and now I am sad and embarrassed to say, I wonder if that is a good decision.  If the police see two African American men together will that increase his odds of an altercation with Police? Will the police be more defiant when confronting two men of color?  The facts tell me yes, and now I have to explore making unfair decisions if I want to keep my child safe.

Once again, be afraid be very afraid. 

 I've been writing about this for years below are a few older posts that tell the story.....................................

Saturday, August 1, 2015

Okay, I'm back on my "Be Afraid, Be Very Afraid for our boys Police shoot to kill". We talk inclusion yet we live in a country where individuals with mental health issues not only suffer the realities of their illness's - but as a result of our collective ignorance - are vulnerable to execution by default.

This week there was a fatal police shooting in our town on our main street, Ventura Blvd. A busy street with families walking and visiting bookstores, clothing shops and eateries. It’s always felt like a safe place for everyone, not a street where you expect to see a police officer kill a man.

I wasn't there, when the shooting occurred. I just heard people talking about how they couldn't drive on Laurel Canyon because the police had it cordoned off. Then I turned on the news to hear a man had a gun, and the police shot him. My first thought was sadness in general for a terrible situation. The next morning I scanned the internet to find out what had happened, and I read this:

“He was just firing into the air while there were children and parents walking around. He was just firing into the air,” Keshishyan said. “Police showed up, and they told him to drop his weapon…He wasn’t listening.”  Witnesses said he fired at least one shot in the air and then police opened fire.

After police tried to negotiate with the man for about five minutes, the man “held up his gun and aimed toward the police, and that’s when they shot him,” Keshishyan said.

Another witness, Wyatt Torosian, said police fired two shots, sending the “bedraggled” man back and killing him in front of the Union Bank building.

“That was it for the man. It was very dramatic,” Torosian said.  Torosian, who was inside a nearby Starbucks, said he was told the man had fired into the air. A third witness described five or six shots being fired by the man.

The armed man hadn’t aimed at any other people on the street, Keshishyan said. He had held up some kind of object that appeared to be in a bag toward police and then put it back down, she said “And they shot him”.

What I hear in this news report - and please know I am biased in support of those who cannot speak for themselves - this individual did pose a threat to our community, and he did not seem to comprehend the officer's directives. This should not have been a death sentence. 1 in every 54 boys in this country has Autism, and lack the social skills to survive a situation with Law Enforcement.  I'm afraid for my son. Lord knows, there has to be a better way.

Monday, August 3, 2015

Execution by Mental Illness Part 2 ; No Flowers When People with Mental Illness are Killed by Police?.

Today as I drove past the spot when a homeless man was shot by police there was no sign that a human being, who killed no one, had lost his life. His crime, mental illness, not comprehending police commands. No street memorial, no flowers, no notes, no RIP Seth, nothing. No sign that anyone had lost their life just a few days ago. It seems no one cries for him. Sad. So sad to be invisible.  

Armed Man ‘Firing Into the Air’ Shot by LAPD in Studio City, Prompting Bomb Squad Response.


LAPD chief says Studio City shooting was a 'suicide by cop'

The night before Seth Raines was shot to death by Los Angeles police in Studio City, a chaplain in a skid row homeless shelter pleaded with him not to leave.
The 44-year-old Raines had made huge strides since arriving at the Union Rescue Mission, where he had recently completed an intensive, year-long recovery program, said the shelter's chief executive, the Rev. Andrew Bales.
The program included one-on-one time with a counselor, regular workouts in the gym, visits to the learning center and spiritual guidance.

I just see his shining, cheerful face and blue eyes.- The Rev. Andrew Bales, Union Rescue Mission
Just recently, Raines and others in recovery had a cap-and-gown ceremony with friends and family looking on.
Raines was beaming that day, Bales said.
"I was with him a few weeks ago as he graduated. Shook his hand and took his picture with him. It's been on my mind since Friday," Bales said mournfully. "I just see his shining, cheerful face and blue eyes."
Friday was the day Raines died.
LAPD Chief Charlie Beck told reporters Wednesday that investigators believe the shooting was a "suicide by cop" scenario, based on the man's actions and on interviews with his family.
Witnesses said Raines fired shots into the air and toward the ground about 3:20 p.m. near Vantage Avenue on Ventura Boulevard. Soon after, police responded to the scene.
Terrified witnesses sought cover and hid behind police cars as officers inched closer to the man.
But witnesses said Raines appeared to be calm as he sat on a brick ledge outside a bank.
"He looked like he was just waiting for the cops," witness Paul Gilmartin said after the shooting.

Beck said Raines, identified later by the county coroner, had what police thought was an explosive device: natural gas cylinders with wiring connecting them to a cellphone. The device wasn't explosive, Beck said, but was so convincing that the LAPD deployed a bomb robot to detonate it and another object found near the man's body.
Beck said the officers shot Raines after he refused to drop his pistol and instead pointed it at the officers. That pistol was recovered at the scene.

"Of course, we still have much investigation to do and the final conclusions have not been reached, but the only conclusion we've come to at this time is that this was a suicide by cop," Beck said. "All those things are very consistent with somebody that wanted to take their own life."
The chief said the shooting was a "very difficult incident for everybody."
"We not only had to shut down a very active boulevard, but we also had to take a human life," he said. "And that is, of course, something that we take very seriously."
Raines didn't give any indication of where he was going or why he was leaving when he packed up and left the skid row mission the night before he died, Bales said.
Mission residents and staff didn't hear about what happened to Raines until one of his cousins sent Bales an email this week, thanking him and the shelter for all they had done for Raines.
"He let us know how [Raines] felt comfortable here. He loved this place," Bales said.
A Facebook page that appears to have belonged to Raines shows him holding up an image of a skull days before he died, along with a picture of flames spelling out "RIP."
"There's no real way to figure out what's going through someone's mind when they take this kind of drastic action," Bales said.
The LAPD said it would not release the names of the officers involved until after the so-called 72-hour briefing, where Beck and command staff will be told about the initial investigation. The officers involved were assigned to the LAPD's Van Nuys Division, a department spokesman said.
The shooting marked the 23rd time this year that LAPD officers have shot someone. Twelve of those people died.
The shooting will also be reviewed by the district attorney's office, the Police Commission and its independent inspector general.


Sunday, March 21, 2010

Fatal Shooting of a Man with ASD

Last night my quiet street was turned into an episode of "Cops" reality TV as 11 police cars with blaring sirens and flashing lights wrapped up a city wide car case in front on my house! When I saw police; yelling at the driver and running with shot guns all I could think about was get the kids and don’t let go of Nicky or he might end up dead. I watched the driver, a young man finally come out of his car,get down on his knees and follow the officers commands. I was relieved when he was arrested and no gun fire had been exchanged.

If you don't have, or don't know a child with Autism, you might think this sounds dramatic. But if you know our kids, you know how vulnerable they are. They lack understanding of social dangers and if the police yelled, "Get Back", "Stop", "Hands over your head", "Drop to your knees" these commands could mean nothing. Our kids might jump up and down or flap their hands, or laugh and in the end, our innocent children could be shot, maybe even fatally, because their actions would be mis-read by the police, who do not have the ability - especially in tense situations- to recognize autism.

Seeing this scenario flooded my mind with visions of what could happen to my son if he was in the wrong place at the wrong time. I kept imagining what Nicky might do if he was suddenly surrounded by police, guns drawn, yelling. I managed to push images of him being shot as tense police shouted directions to him, which he didn't understand. I finally pushed my fear out of my mind and went to sleep. Then I woke up to the headline “27 Year Old Man with Autism Fatally Shot By LAPD”.

I am a parent of male, African American with Autism. I live in a city where the police have been trained to shoot to kill and have not received adequate training in identifying and communicating with individuals with developmental disabilities, including Autism. I do not believe it was an accident the police chase ended in front of my house. I think it was my WAKE UP CALL, that we have not yet found a way to safely and successfully include individuals with autism into our communities.

With one in every 80 boys diagnosed with ASD, we are all living with autism. We will all be touched by a person who has autism; in our schools, churches, families or work. As a civilized society, we know that individuals with autism deserve to be treated with the same dignity and respect as any member of our community. As a civilized society we must demand that ALL first responders get adequate training in recognizing ASD before another life is lost. The story from the Los Angeles Times is below. I hope you will find the time to read it and I hope it moves you to do what you can.

Police fatally shoot unarmed man in Koreatown

Steven Eugene Washington, 27, didn't respond to commands and seemed to reach for a weapon, officers say. Relatives say he had learning disabilities and was generally afraid of strangers.

Frankie Washington mourns the death of her nephew. Relatives say that Steven Eugene Washington, 27, was not a violent man and that he probably was walking home after visiting a friend. (Barbara Davidson / Los Angeles Times / March 20, 2010)

Los Angeles Police officers shot and killed a man in Koreatown early Saturday morning after he reached into his waistband for what officers believed was a weapon, authorities said.

Steven Eugene Washington, 27, died from a single gunshot wound to the head shortly after midnight.

Although no weapon was found, officers said they feared for their lives because Washington did not respond to their commands and appeared to be reaching for his waistband.

Hours after the shooting, Washington's relatives criticized police and said the dead man had suffered from learning disabilities and was generally afraid of strangers. They insisted that he was not violent and that he probably was walking home after visiting a friend.

Police identified the gang enforcement officers involved as Allan Corrales and George Diego, who have served nearly seven and eight years with the department, respectively. Both have been reassigned until the probe is completed, police said.

Corrales and Diego were driving south on Vermont Avenue near James M. Wood Boulevard shortly after midnight in a marked police car when they heard a loud sound, according to police. They turned the car around and saw Washington walking north on Vermont while looking around and touching something in his waistband area.

The officers spoke to Washington, but he approached them and seemed to remove something from his waistband, police said.

Corrales and Diego believed "he was arming himself" and fired, Assistant Chief Earl Paysinger said at an afternoon news conference.

"The officers made decisions in a fraction of a second," he added.

It appears the officers fired once each, Paysinger said. It's unclear which bullet struck Washington.

Washington's family said he was autistic and had learning disabilities but enjoyed riding the bus and trains. He was taking classes at a community college and wanted to become a mechanic. He often took the Metro Red Line subway to visit friends and was probably walking to his home a few blocks to the south, his family said.

Washington was generally wary around strangers and sometimes shy even around family members.

"That's what we lost today: a kid," said his aunt, Vickie Thompson.

Monday, July 25, 2016

Unarmed Behavior Therapist Shot While Working With Autistic Client

This is one more in my series of be afraid, be very afraid. Imagine your autistic son on a walk with this behaviorist, someone calls 911 because they think the autistic man’s toy truck in a gun and when the police arrive despite the therapist calmly explaining the situation (while laying on the ground with his hands up) the police shoot the therapist.  They explain they were actually aiming for his client! What the heck! All I can say is the therapist handled it perfectly, and if you work with behaviorist you might want to see what training they have in the event of police engagement.  Random or not, this shows what is possible and we are better of if we prepare those around us.

Wednesday, May 28, 2008

Juvenile Justice??? The system and our kids

Today when talking to friends about our kids and the legal system I was reminded of an editorial I wrote with my Special Needs Network co-founder (it's below). It was disheartening when Nicky was 8, but now that he is ten and inching closer to being a teenager it's getting scarier. A friend of mine said that she was afraid her son would get shot by the police one day. She envisioned someone - who just committed a crime - would stumble into her unaware child, ask him to hold a gun, he would say "yes", and then the police would come running in and yell "Stop", her son wouldn't understand and he would be shot. Only when it was too late would they know, he had no idea what was happening.

For all that we have on our plates, and I know it's a lot. The truth is we have much to do and much needs to be done. Our kids are positioned to be victims of the justice system, this is not a fearful projection, but a documented reality. It scares me just to think about it. Because I am so afraid of this I have taken some little action. I have introduced all of my neighbors to Nicky so they can be on the look out for him, should something ever happen on our street. I've attended police training programs where the officers on the street get information on how to recognize our kids. And now that I'm thinking about it I think I will take Nicky to our local police station and introduce him around. Who knows maybe one day it will save his life.

Here's the editorial that got me all wound up again!!!
(Los Angeles, CA – April 2, 2007) – What happens to children who have been diagnosed with autism or some other developmental disorder? They grow up. And, more often than not, somewhere along the way they get into trouble with the law.
An excellent case in point is the controversial July 2002 beating of 16 year-old Inglewood, CA resident, Donovan Jackson. When his father was admonished by local police for driving with expired license plates on his automobile, young Donovan was severely beaten and slammed head first onto the trunk of the police officer’s vehicle for supposedly not adhering to their commands. The incident was videotaped and it was later learned that the visibly confused and scared young man was developmentally disabled.
On any given day, approximately 130,000 youth reside in juvenile detention and correctional facilities nationwide. Studies have consistently shown that anywhere from 65 percent to 70 percent of these youth have a diagnosable mental health or developmental disorder. Approximately 25 percent are experiencing disorders so severe that their ability to function is severely impaired, according to data released by the National Center for Mental Health and Juvenile Justice.
This situation is further exacerbated by the fact that the U.S. Department of Justice reports many of its juvenile justice facilities are inadequate in their response to the needs of developmentally disabled youth in their care. These and other reports have shed light on an issue that virtually went unnoticed for decades.
Even worse, as in most other areas of the justice system, African Americans are disproportionately represented. Comprising approximately 15 percent of the total national youth population, African American youth represent 40 percent of all juveniles in detention and 60 percent of young offenders serving time in adult state prisons.
In addition, according to the U.S. House of Representatives, many of these youth are detained or placed in the juvenile justice system for relatively minor offenses and end up in the system simply because of a lack of community-based service options. And, that’s where the problem starts.
Two years ago, we formed the Special Needs Network, Inc. (SNN) to bring attention to the epidemic of autism and other developmental disorders. Working on a grass roots level to create immediate- and long-term change for families, SNN continues to seek to raise awareness about developmental disabilities, especially in the African American community, and to offer resources and other ways to navigate through the bureaucratic red tape to obtain services.
Defined as a neurological condition that occurs in children 15 to 19 months of age, autism is a developmental disability that affects a person’s ability to communicate and socially interact with others. Four times more prevalent in males, autism is now considered a public health crisis that has reached epidemic proportions, along with other mental, physical, or learning disabilities.
Statistics released earlier this year by the U.S. Centers for Disease Control and Prevention indicate that autism is more common than previously believed with one in 150 children being diagnosed on the autism spectrum versus one in 166 two years ago.
Mothers of autistic children ourselves, we were astounded at the difficulty in finding services for our children. We were equally astounded at the numbers of children of color being diagnosed, or misdiagnosed with autism and the fact that most of these children were being diagnosed two years later than the general populous.
We now know that the only scientifically proven way to guarantee positive outcomes for children with autism and other developmental disorders is early diagnosis and intensive early intervention. Called applied behavior analysis, this early intervention is a very systematic way to teach our children about how to cope with our environment and must begin at a very early stage when the brain is still developing. We have to teach them how to function our world.
Unfortunately, most children of color are not generally diagnosed until age five years, while others are diagnosed and begin treatment by age three years. Later diagnosis equals later treatment, coupled with the fact that people of color generally have fewer resources from the start.

Sunday, August 26, 2012

Handicapped Children Restrained, Confined, Abused and Murdered - A headline from today, not the 1800's.

There are some days when I read something that upsets me so deeply; I cry like a baby and I just want to go back to bed and hide under the covers until I can come out and see a better world.  Today was that day. 

Like lots of other days I jumped online to see if there is anything really pressing going on in the world involving our kids that I would want to share. What I found today was my worst nightmare, headlines of abuse and torture of our kids. I stumbled upon a website called Autism  and a headline that read, "Handicapped Children Restrained, Confined, Abused and Murdered", followed by videos and stories so horrible I went and grabbed Nicky and didn't want to let him go. 

I looked at these articles and I thought,"Yes, some parents are driven to extremes. Some people are just ignorant and don't know what to do with our kids and so they make really hideous choices, then justify their actions." I also know that there are some straight up bad people in the world who should never be within 100 feet of a child. But oddly, the truly hideous people are not the ones who scare me the most, it's the people who are not evil. These are individuals in legitimate positions; police, parents, educators, therapist, aides who live normal lives and would never be considered as menaces to society. They are people who, under extreme circumstances are afraid, or are ignorant, frustrated, careless or simply neglectful, and as a result make really bad decisions.  As a community it's these people we all have to be diligent and keep our eyes open for, seeing with our hearts, not our brains, open to the truth about how every human deserves to be treated...NO MATTER WHAT!!!!!!

Autism News website: 
Video's detailing abuses:

Wednesday, January 19, 2011

Germs aren’t the scariest things inside! - Success in Public Restrooms

With my usual not so at ease self I sent Nicky into the men’s room at the zoo, alone.  A few minutes later a man came out, looked at us while protectively holding on to his son and said “There’s a strange boy inside”.  Clearly, he didn’t know the “strange boy” belonged to me or that Nicky wasn’t strange, or dangerous he was just acting like an ASD kid, unaffected by social protocols.  I took a deep breath, to release the knot in my stomach and help me let go of my disappointment that the man didn’t say “There’s a boy inside who might need some help.  If you know the boy inside you might want to check on him” instead.   Then I approached the restroom door and called for Nicky to come out.

Restrooms in public places are one of those little things that have been a challenge for years.  Not only because of Nicky’s ASD but because I’m a single mom of a boy, which means there’s typically not a guy around to take him in the restroom. I never thought much of how families automatically divided by sex to take their kids into public restrooms; but now as a single mom raising a boy I notice. 

Until recently I didn’t let Nicky go into public men’s rooms alone; because he was too young, and then I was afraid he might not be safe.   I remember when he went into a crowded boy’s room during school and was over stimulated by all the kids’ movements and noises.  Unable to focus, little man came out of the stall before getting his pants up, began jumping up and down, making noises and flapping his arms.  One of his flapping hands hit a boy, and the boy turned around and punched him in the mouth!  He stood there bleeding - clueless about what to do, what happened or why - when one of the kids from his class yelled out “Somebody help Nicky!”  Combine this with all imagined scenarios - from predators to just inappropriate, and there’s enough “what if’s” to keep me taking him in the ladies’ room forever!    

Okay, I know that’s not an option.  I don’t want to be the mom who you see sneaking her mustache growing teenage son into public ladies’ rooms ignoring how he might feel and avoiding how uncomfortable the other women in the restroom feel.  The option of inflecting torture by making him wait for a “safe” place to potty doesn’t seem like such a good idea either.  Did I just say “Potty”?   Yikes! 

Okay, once again I’m forced to grow up because he is, weather I like it or not! With his behaviorist we have created a restroom (not pottyJ) protocol plan and here it is.  There is an action list for Nicky. The list is posted on the door of  the restroom he uses at home. We started doing this at home and once he got the hang of it we began going over the list when he's in the community/school with his male therapist. Once he got it, I began using it in the community. 

Before he goes in the restroom we review the steps with him:
·         Keep a calm body and a calm voice when you go in.
·         Stay focused, get in and out.
·         Don’t pull your pants down until you get in the stall
·         Close the stall door behind you
·         Don’t take your pants all the way down – only pull down the front to pee
·         Pull your pants up and do your zipper before you leave the stall
·         Wash your hands
·         Dry your hands
·         Make sure your pants are up and zipped before you leave the restroom
Then I have created a plan to keep me on track.

Outside in the community mom repeats to herself:
·         It will be okay. 
·         We can do this.
·         He will be safe.
·         I can let him learn.
·         Chester the Molester does not live in this restroom. 
Good Luck Moms and pls post any suggestions of how you handled this. Lord knows I could use all the help I can get! 

Sunday, June 22, 2014

Half of All Autistic Kids Will Run Away

This post is not for parents of kids with autism, it's for everyone else! This article paints a clear picture about "eloping" or "wandering" and our kids. Please consider forwarding or re-posting in our effort to create a community safety net for our kids through education.   

Our kids don't have to be a statistic. 
Half of All Autistic Kids Will Run Away, Tragedy Often Follows

way from home before their 17th birthday. Many of them die, often by drowning.
Within hours one day in April, two children went missing hundreds of miles apart from each other.
On the surface they appear to have little in common.
Angelo Messineo is a 16-year-old from Georgia. He was found alive on a horse farm four days after he disappeared from school on April 16. Alyvia Navarro, 3, of Wareham, Mass., was pronounced dead hours after she was reported missing, drowned in a pond near her grandmother's home, on the same day.
They are just two of the thousands of children who went missing last month.
But Angelo and Alyvia have one thing in common, and it's a trait shared with at least one child who goes missing every day in America. They are autistic.
Nearly half of all children with autism will run away and potentially go missing at least once before their 17th birthday, according to a study by the American Academy of Pediatrics. Of those who run away, what clinicians call "eloping," many will be found dead.

The numbers alone present a challenge for law enforcement authorities, who regularly rank searches for missing children among the most difficult work they do.
But finding children with autism -- who shirk when their names are called out, who run away at the sound of police sirens, who are afraid of the dogs sent to find them, and who naturally are comforted by burrowing and hiding -- makes a hard job even harder, investigators say.
One in 50 children is diagnosed annually with autism, a spectrum of neurodevelopment disorders marked by problems with social interaction and communication, according to data from the Centers for Disease Control and Prevention in Atlanta. As the number of children who are diagnosed increases, so too does the number of kids who run off, leaving rescuers to learn quickly how best to handle a unique set of challenges.
The stories of Angelo and Alyvia, and dozens of children like them, present two sides of a phenomenon still not entirely understood.
On the one hand, autistic children are more likely to run away than unaffected children. When they do runaway, they are more likely to die than unaffected children. And more often than not, 91 percent of the time, those deaths are a result of drowning. But what is so perplexing to researchers and rescuers are the stories like Angelo's. Stories of almost super-human rates of survival for young children with developmental disabilities, who manage to stay alive for days often in the wilderness and against staggering odds.
"It's a mystery," said Robert G. Lowery Jr. of the National Center for Missing & Exploited Children. "Time and again, we see cases where autistic children live longer and survive in harsher settings than unaffected children. We don't really know why. It might be that these children with autism have a diminished sense of fear, but it's astonishing."
Stories like Alyvia's are also all too common.
The 3-year-old girl was there, at her grandmother's side at their home at the Lakeside Trailer Park in Wareham, Mass., and a moment later she was gone. Twenty-five minutes later, her grandmother Valerie Navarro called the police. Police, fire, EMS, K-9 units and the nearby harbormaster began a search for the girl, who was discovered an hour later, according to Wareham police.
A patrol found the girl in a pond near her grandmother's home, and she was evacuated via helicopter to a hospital in Boston where she was later pronounced dead.
Girls More Likely to Die
Calls to Alyvia's grandmother Valerie Navarro were not returned.
Boys are four times more likely to be diagnosed with autism, but girls, like Alyvia, are twice more likely than boys to die after an elopement, according to Lori McIlwain, executive director of the National Autism Association, which tracks eloping incidents and deaths.
In 2012, 195 autistic children went missing, according to the autism association, which only tracks those incidents reported by the media.
Between 2009 and 2011, 91 percent of autistic children younger than 14 died in drowning incidents after elopements. More than two-thirds of those deaths occurred in small natural bodies of water like creeks, lakes, rivers and ponds.
"Oftentimes, children who go missing are low or nonverbal," McIlwain said. "But they know where a pond is. They see it from the car going to and from school every day, but they can't tell mom or dad that they want go to the pond and play. They think about it and when they have the chance, they bolt."
It's a story all too familiar to Beth Martin, a single mother with three kids, whose 7-year-old daughter Savannah drowned in a pond near her Lawton, Okla., home in 2011.
"My daughter loved Ramen noodles," Martin said, remembering the Sunday morning that her daughter died. "I knew I had exactly four minutes. Typically, she would stare for four minutes, watching the noodles cook. I popped my head outside to tell my oldest, who's 11, to watch my youngest, who's 2, because I was going to run to the bathroom. I thought it was safe to go to bathroom."
'I Couldn't Get Them Both Out of the Water'
Before the noodles finished cooking, Savannah and her younger brother were gone.
"They both were missing," Martin said. "I asked the oldest where they went, but he didn't know. I panicked and looked all over the house and yard. I kept calling their names. I ran to the highway and then to our neighbors to ask if they had seen them. I asked my son to wait by the house and he came running to say he could hear them screaming."
By the time Martin made it to the half-filled pond on the edge of her property, Savannah was under the water. Her younger brother, who had been wearing a padded bicycle helmet, was kept barely afloat by its buoyancy.
"I couldn't get them both out of the water. … I started to panic and the neighbor jumped in to pull them out," Martin remembered. "I just collapsed after that."
Martin was a conscientious mother. When Savannah was born, doctors told her that her daughter would never talk or say, "I love you, mommy." Martin worked with her religiously, and the girl had begun talking. She even knew the lyrics to her favorite Taylor Swift songs.
She had enrolled Savannah in kindergarten, registered her for swim lessons, was looking to install alarms in case she ever ran off, and made a point to teach her daughter the boundaries on the property.
"I thought I had spoken with all kinds of experts about raising a child with Savannah's needs. But I was never told about wandering or about the likelihood of drowning. No expert ever told me that," Martin said.
In that way, Martin is like the majority of parents raising children with autism.
Sixty percent of parents are unaware of the likelihood that their child will elope or the subsequent risks of death, according to a survey by the National Autism Association.
The National Center for Missing & Exploited Children works with law enforcement agencies across the country to train cops on how best to search for children with autism.
Deaths Are Quick and Quiet
"We make recommendations to law enforcement about things they should be doing immediately," said Lee Manning, a former Massachusetts state trooper and now a consultant for the National Center for Missing & Exploited Children.
"[Police] have to respond very seriously and not waste any time. One of the things we strongly recommend is to get first responders, even neighbors, dispatched to local bodies of water right away," said Manning a member of Team Adam, a nationwide rapid response team of retired cops that helps law enforcement on the most difficult missing children cases.
Tragedies like the deaths of Savannah and Alyvia rarely make the front pages of newspapers or the morning television programs.
Their deaths are quick and quiet. But there is another class of autistic elopers who beat the odds with such astonishing results that law enforcement officials and rescuers are studying them to learn how best to search for runaways in the future.
On the same day Alyvia went missing, so did Angelo Messineo.
Angelo is a 16-year-old boy with a severe form of autism. A ward of the state, he is nonverbal and prone to violent outbursts. He "bolted from school after some sort of incident" in Lithonia, Ga., according to investigators.
Police scoured the woods of DeKalb County, Ga., for four days with few clues. Angelo was found April 20 on a horse farm 14 miles from where he was last seen. He was identified by police after an altercation with other teenagers.
He was taken to a nearby hospital and treated for dehydration.
Calls for comment to the DeKalb County School District were referred to the National Center for Missing & Exploited Children.
'They Tend to Burrow Down and Hide'
Unaffected children tend to panic, they walk in loops, they take dangerous risks in an attempt to save themselves, but children with autism tend to "have a diminished sense of fear," Lowery of the National Center for Missing & Exploited Children said. "There's a different search criteria for children with autism. They tend to burrow down and hide. We don't know if it's because they fear searchers or if it's a kind of game. They seem to realize the peril they're in," he added
Two of the largest missing children searches in recent years involved kids with autism.
In 2010, 11-year-old Nadia Bloom was found by a volunteer after spending four days in an alligator-infested swamp in Florida. She was dehydrated and covered in insect bites.
In 2011, the largest manhunt in Virginia history took place more than six days as volunteers and rescuers scoured a dense forest looking for 8-year-old Robert Wood Jr., who ran off while visiting a state Civil War park with his father.
Robert was found alive by a volunteer, who has remained anonymous even to the boy's family, in a quarry about a mile from where he went missing. When he was found, he was in a fetal ball and burrowed in the dirt.
The search for Robert has become an important model for rescuers who conduct searches for children with autism.
"We knew never to take him where there was a pond," his grandmother Norma Williams said. "Like many autistic children, Robert is fearless. He doesn't feel pain. He doesn't fear heights. He doesn't fear water, but he can't swim. He'll jump off just about anything."
Many of the things that attract autistic children, often to their demise, were in the park trails that connected to rivers, roads and railroad tracks.
For five nights, Williams camped outside the park in her truck praying and waiting for news of Robert.
"I dropped to my knees when they told me he was alive and an investigator helped to get me back up. I couldn't stop crying," she said. "Robert's feet were so swollen, his shoes were stuck in mud, he had curled up in a ravine when the temperature dropped and it began to rain."
Since his rescue, Robert's family has allowed the local sheriff to outfit him with a radio anklet similar to those given to prisoners on house arrest, so he can be tracked if he runs away in the future.
"People have to understand autistic children aren't like other children," Williams said. "They're special. They run when they want and do what they want. And just because they can't speak doesn't mean they're not thinking things.
"If you went to those woods, you'd see they're so dense the light doesn't come through. There's coyotes and snakes and spiders.
"How did he survive? How do they survive? If you don't believe in God, come see Robert."

Thursday, December 12, 2013

When Our Kids Hit Us - The Pain Behind the Impact

This week Nicky – completely by accident – hit me in the eye and I have a black eye.

If this happened with my daughter, I would be find.  Because it’s Nick and it’s aggression - which is his E ticket out of society - I’m so upset.  I wish I wasn’t, because it WAS an accident, but I am.  for two days I've been asking myself why? Why am I so upset? And I finally got it. I’m upset because I’m afraid. Afraid if he’s aggressive at school, in a park, anywhere but here at home other people will not be so understanding or forgiving.  He won’t get the same benefit of the doubt given a typical person.  I’m afraid as I “imagine” what could happen to him. How do I protect him.  This spiral is going nowhere. I have to tell myself to stop. 

Monday, May 6, 2013

Why are Parents Afraid of the "IEP"

I was going over papers, talking to the school nurse and Nick's teacher in preparation for my son's Tri-annual IEP last week, when I was asked "You seem anxious, what's an IEP?"  I'm so used to being anxious I didn't notice, but she was right. Before I knew it I was telling her this story.  

IEP stands for Individual Education Plan and it strikes fear in the hearts of many parents. The terms Tri-annual IEP and Transition IEP can be even more anxiety provoking because experts - which can include people you and your child have never met - evaluate your child  to provide critical information that is used to determine services. IEP's are created in meetings where a students educational team and parents come together to review a students individualized educational needs to determine what has worked, what's not working and what would be best moving forward. It sounds good and sometimes it does goes well. Sometimes the entire team agrees on a plan of class's, transportation, supports and services to move a student forward.
"Why are parents anxious about IEP's; in short how would you feel knowing that the success of a critical part of your life or your child's was going to be decided by a committee, which may include strangers, on an annual basis? Hummm, I'm just sayin :)."

Parents are afraid of IEP meeting because they offer up a frightening annual opportunity to learn how many different opinions a group of adults can  have about what best serves a child.  All the education support services a student will keep, gain and loose in the next school year are at the mercy of the the IEP participants, who may or may not know anything about your child. From diagnosis (which determines eligibility for services), school placement, educational goals, classroom placement, behavior plants, behavior support, speech, OT, APT, behavior plans, transportation, are all of the table for renegotiation once a year! Not hard to see why parents feel a little anxiety around the process!

IEP's always have an element of the unknown, as different agendas, levels of knowledge, belief systems come into play and in the event of a disagreement the school districts typically have more resources to gain the upper hand in a dispute. Visions of David and Golliath have been known to come to mind for many a parent. For example; two weeks before one of Nicky's IEPs, an aid told me "People have visited his class from the district and one told me they were trying to see if Nicky no longer needed a behaviorist because he had good grades". Yikes, there went any calm I was holding on to!!! Really, good grades??. If this statement was accurate or not - which I will never know - it is an example of what happens in schools and our communities when people, even teachers and principles, have deep misconceptions about autism. There is still a great deal of confusion about behavior and intelligence in people diagnosed with ASD. For example some people think a person with autism who has normal intelligence can rely on their intellect to turn off and on any inappropriate behaviors they have associated with their diagnosis, or that autism does not mean unable to learn. Or in this case,  when behaviors improve due to intervention, and the success of behavior intervention is not necessarily proof that the support is no longer needed, rather it's probably proof that is is needed and working!

Tuesday, September 2, 2014

Avontes Tragic Death May Save Other Children with Autism

Danny Oquendo Starts Law School on Mission to Become Legal Advocate for Autistic Kids

By Checkey Beckford Friday, Aug 22, 2014 • Updated at 6:54 AM EDT


Danny Oquendo is determined to become a lawyer and fulfill his mission of helping children with autism.!/news/local/Danny-Oquendo-Starts-Law-School-on-Mission-to-Become-Legal-Advocate-for-Autistic-Kids/272259521


Avonte Oquendo's older brother is set to begin law school this week, part of his mission to become a legal advocate to help children with autism in the wake of his brother's death.  Danny Oquendo, 27, passed the LSAT six years ago and is finally starting New York Law School this week, inspired by Avonte. 


The autistic boy disappeared last October after he ran out of his Queens school unsupervised. After a months-long search that gripped the city, Avonte's remains were found in the East River near College Point in January.


( Video obtained by NBC 4 New York shows 14-year-old Avonte Oquendo bolting out a door left open by an adult at his Queens school the day he disappeared. Pei-Sze Cheng reports.   ---)


The city's medical examiner ruled that the cause and manner of Avonte Oquendo's death could not be determined.  Oquendo said the loss taught him a painful but valuable lesson. "You shouldn't wait for something bad to happen to pursue those dreams because you could be the person that stops that from happening," said Oquendo. He now wants to become a legal advocate for children with autism and to make sure they are "placed in the right programs, making sure they're being watched after carefully, and that if there's any wrongdoing done, they have legal representation." 


Oquendo's mentor, Gary Mayerson, started the country's first law firm focused on autism cases. The two met when the firm offered a reward to find Avonte. 

"The more and more we talked, it became obvious he wanted to go into this area and represent children with special needs, which was so admirable," said Mayerson. 


The family's push for change has already helped to get Avonte's Law passed earlier this month, aimed at making schools safer for kids with special needs. 


Oquendo's dedication to giving a voice to children with autism and families of children with autism became clear when he wrote a blog post on the website Autism Speaks in March. In it, Oquendo recalled the terror and grief he felt following the months of Avonte's disappearance.  "Picture in your mind having a loved one who does not possess the ability to communicate effectively. Now imagine this loved one lost in the biggest city in the world, alone, cold, hungry, afraid or worse," Oquendo wrote. "How you’re feeling right now is just a fraction of the pain we endured for the months following Avonte’s disappearance. Not knowing whether we would see our beloved Avonte again ate away our souls," he said. 

Oquendo said in the blog he was determined to never let another family experience the same tragedy. 

"While we may never know what exactly happened to my younger brother, what we can do is help to avoid this tragic event from happening again," he wrote. "The waves created by this catastrophic incident will ripple through time forcing immediate change to the current security standards of schools across the country, starting with the ones here in New York."

Oquendo said he believed change is possible because he witnessed just how quickly and tightly New Yorkers banded together in their mission to find Avonte, calling it "one of the most inspiring events to ever occur in my lifetime." 

Oquendo is set to take an internship at Mayerson's law firm next summer. 


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Thursday, July 1, 2010

Police Taser Autistic Teen with a Heart Condition

We have to find a way to keep our children with ASD safe. Maybe Medi-Tag or FRAAP will help a little, but it's just a drop in the bucket until society, and ALL first responders learn how to recognize and support people with ASD.

Georgia police taser Clifford Grevemberg, an autistic teen with a heart condition

Clifford Grevemberg says that Georgia police used a Taser on him Friday night. Grevemberg is autistic, and his heart needs regular monitoring, according to his family. An 18-year-old autistic Georgia youth with a heart condition says police turned a Taser on him, according to The Associated Press. Officers arrested Clifford Grevemberg Friday night, says the AP and told his brother, Dario Mariani, that the teen was drunk and disorderly. But Mariani said Grevemberg is a special-needs teen who’s never consumed alcohol.

The 170-pound teenager, who’s from Tybee Island, said the police used a Taser on him twice and threw him to the ground, breaking a front tooth.

“I just wanted to go to sleep,” the teenager told the Savannah Morning News, as reported by the “I sat down on the curb and put my head in my arms, and they stopped me.”

Mariani said he had gone into a restaurant briefly and when he stepped back out, his handcuffed brother was bleeding and two Taser barbs dangled from his back.

When he told the police about his brother’s health, "Their eyeballs got about that big when I told them he has a heart condition," Mariani said. The autistic teen’s heart must be monitored regularly, according to his family.

After being taken to the Tybee police station, Grevemberg was released. Yesterday a police dispatcher said that no one was available to comment, according to The Associated Press.

I'm so afraid of this happening to Nicky, our kids are so vulnerable. Did you know individuals with ASD come into contact with law enforcement 7 times more often than others. We can't foresee every possibility but we can do something; take our kids to visit local police stations and firehouses and talk about our kids, visit with every EMP, police or fireman we encounter in our community, let all of our neighbors know about our children and our need for everyone to keep an eye out.

Talk to everyone who will listen about this problem and how to recognize a person with ASD. If we all just keep talking I believe we will make a difference. I might save your child and you might save mine.