Tuesday, August 14, 2018

Autism Cuts Life Expectancy in Half, to Age 36

This blog was started many years ago to illustrate the point that autism is a life threatening disorder.

It was a very difficult blog to maintain, because each entry was posted through tears over an innocent life lost, often at the hands of those who were entrusted with their care and safety.  Because the emotional toll was heavy, we stopped maintaing the blog, since we felt the point had been made.

Now Columbia University and the American Journal of Public Health have published results that make the point for us:

Injury Mortality in Individuals With Autism
Joseph Guan BS, and Guohua Li MD, DrPH
Objectives. To examine epidemiological patterns of injury fatalities in individuals with a diagnosis of autism.
Methods. We identified individuals with a diagnosis of autism who died between 1999 and 2014 by screening causes of death in the multiple cause-of-death data files in the National Vital Statistics System based on the International Classification of Diseases, 10th Revision, code F84.0. We used the general US population as the reference to calculate proportionate mortality ratios (PMRs) and 95% confidence intervals (CIs).
Results. During the study period, 1367 deaths (1043 males and 324 females) in individuals with autism were recorded in the United States. The mean age at death for individuals with autism was 36.2 years (SD = 20.9 years), compared with 72.0 years (SD = 19.2 years) for the general population. Of the deaths in individuals with autism, 381 (27.9%) were attributed to injury (PMR = 2.93; 95% CI = 2.64, 3.24), with suffocation (n = 90; PMR = 31.93; 95% CI = 25.69, 39.24) being the leading cause of injury mortality, followed by asphyxiation (n = 78; PMR = 13.50; 95% CI = 10.68, 16.85) and drowning (n = 74; PMR = 39.89; 95% CI = 31.34, 50.06).
Conclusions. Individuals with autism appear to be at substantially heightened risk for death from injury.

It is fitting that this be the final entry in this blog.  We hope that the information here will settle the question of whether or not autism is a harmless condition, and whether or not it should be prevented and treated.

Certainly any and all reasonable and ethical people can agree that any condition that poses such a serious threat to a child's life that it cuts their life expectancy in half should be treated and prevented.

CNN's article on the study:

Children with autism 40 times more likely to die from injury, study says
By Susan Scutti, CNN

Updated 4:06 PM ET, Tue March 21, 2017

(CNN)Preventable injuries often lead to death among people with autism, a new study says. They are three times more likely than the general population to die because of injuries, according to the study, published Tuesday in the American Journal of Public Health.

For children and young teens with this developmental disability, the numbers are more striking: They are 40 times more likely to die from injury than the general child population, researchers said. Drowning is the most common fatal injury among children with autism.

People diagnosed with an autism spectrum disorder, which causes challenges with social skills and communication, die at an average age of just 36, noted the researchers. For the general population, life expectancy is 72.

Two motives drove Dr. Guohua Li, senior author of the study and founding director of the Center for Injury Epidemiology and Prevention at Columbia University, to research the relationship between autism and injury.

"First, the prevalence of autism has been increasing," Li said, noting that there are an estimated 3.5 million people living with autism in the US, including about 500,000 children under the age of 15. "Second, there is anecdotal evidence that people with autism are at higher risk of injury."
Actual research to provide hard evidence, though, has been difficult to find.

36 years young
For data, Li and Joseph Guan, a master's student at Columbia, turned to the National Vital Statistics System, which records key demographic characteristics for each deceased person alongside information about the cause of death.

The researchers thumbed through more than 39 million death records filed over a 15-year period ending in 2014. By screening the codes entered onto each death certificate, Li and Guan were able to identify those who had been diagnosed with autism. They pinpointed just 1,367 individuals with a recorded diagnosis of autism, 1,043 of whom were male.

Because autism would not be the direct cause of death, it would be under-reported on death certificates, said Li. Working with the available information, he and Guan calculated mortality using the general U.S. population as a reference.

Yearly deaths for people with autism increased nearly sevenfold during the study period, Li and Guan soon discovered.

They found that more than a quarter (28%) of the people with autism died due to injury -- three times the percentage of the general population -- and that more than 40% of these deaths occurred in their homes or residential institution.

The average age when people with autism died due to an injury was about 29, compared with an average of nearly 55 for the general population.

Suffocation (when oxygen cannot enter the body), followed by asphyxiation (when oxygen is lacking in the body) and drowning caused most deaths. Combined, these three causes accounted for nearly 80% of fatal injuries in people with autism.

"Injury deaths in autistic adults are disproportionately due to asphyxiation and suffocation, and injury deaths in autistic children are much more likely caused by drowning," said Li, who is also a professor of epidemiology at Columbia's Mailman School of Public Health.

"Autistic children aged 14 years and younger are 40 times more likely to die from injury than the general pediatric population," Li said. Specifically, drowning accounts for 46% of all injury deaths among children with autism, which translates to 160 times the chance of dying from drowning compared to other children.

"The risk of drowning in autistic children peaks at age 5 to 7 years," Li said.

He explained that children with the disorder often feel anxiety, and wandering, especially toward water, is one way they seek relief. With 100,000 children newly diagnosed with disorders each year in the US, he added, "the first concrete step parents and caregivers could take to reduce the exceptionally high risk of accidental drowning is to enroll these children in swimming classes."

Importance of water safety
"Nearly 50% of children with autism wander," said Michael Rosanoff, an epidemiologist and director of public health at Autism Speaks, an advocacy organization. "And children with autism are often attracted to water."

Past studies as well as community discussion have suggested that children with autism have water accidents resulting in tragedy more frequently than other children, Rosanoff said. The higher risk of drowning estimated in the study, then, was "not a surprising finding to us, but it reaffirms the importance of teaching water safety to children with autism," he said.

"We haven't seen a study of this magnitude before. It's a very large study, probably the largest study to date on this topic," he said.

People with autism essentially have half the life expectancy of the general population, Rosanoff said: "Let's take a second to let that sink in."

"Conditions like epilepsy, depression, attention-deficit hyperactivity disorder, schizophrenia -- these psychiatric and medical conditions are much more common among individuals with autism," said Rosanoff, who observed that another key point of the study is that autism itself is not a cause of death.

"Rather, autism is often a co-occurring medical and psychiatric condition that is likely to play a role in this premature mortality finding," he said.

"Other studies have shown us, including a recent study from Sweden, that, in fact, for example, premature mortality due to suicide is higher among individuals with autism," Rosanoff said. However, that same result was not found in the current study.

Parents should remember that what this study says is "that injuries are often part of the challenge, and injuries can be preventable," he said.

He pointed out that Autism Speaks' website offers resources on water safety issues such as equipping children for being in the water and teaching them how to swim, as well as a toolkit for parents of children who wander.

Higher rate of people with autism
The Autism and Developmental Disabilities Network estimates the prevalence of autism spectrum disorder at one in every 68 children as of age 8.

This rate has more than doubled between 2000 and 2012, according to the network, which is a group of programs that is funded by the Centers for Disease Control and Prevention and tasked with estimating the number of children with autism and other developmental disabilities living in the United States.

Risk is not evenly spread throughout the population, though.

The disorder is about four times as common in males as in females, for example. And among infants who have an autistic sibling, the risk of developing the disorder may be as high as one in five, while the risk for infants without an affected sibling is just one in 100.

Prevalence also tends to be higher among non-Hispanic white children and among children of highly educated parents.

Sunday, August 11, 2013

Dena Burns Drowns in Pond

SWAINSBORO, Ga. -- Emanuel County sheriff's officials say a 6-year-old girl with autism has drowned in a pond.

Sheriff Tyson Stephens said Thursday that foul play is not suspected in the death of Dena Burns.
Investigators say her parents reported her missing Thursday morning and they told authorities they believed she walked away from their home in Swainsboro.

Officials found the girl unconscious in a nearby pond and were unable to revive her.
(Associated Press)

Read here.

Wednesday, May 29, 2013

A 2-year-old Akron boy drowned over the weekend in southern Ohio.
The toddler, who is autistic, reportedly wandered away from his family as they stayed at a cottage near the Muskingum River about 8 p.m. Saturday.
The family found the little boy, Andrew “Drew” Howell, in the river.
The Muskingum County Sheriff’s Office reported that the boy was transported by the Dresden Fire Department to Genesis Good Samaritan Medical in Zanesville, where he later was pronounced dead.
The family administered CPR on the boy for 10 minutes before the fire department arrived.
Laurie Cramer, director of the Autism Society of Greater Akron, said Drew wandered away from the cabin and must have headed straight to the river — about 100 yards away.
Cramer, who was asked to speak to the media on behalf of the family, said Drew’s mother, Kelly Howell, shared that her “worst fears happened.”
“It only took 30 seconds of my attention being somewhere else” for her son to wander off, the mother told Cramer in an email.
Cramer said drowning is a constant worry for parents of autistic children.
“Wandering-related accidents are the No. 1 killer of children with autism,” she said.
Cramer added that in the past week alone there have been three drowning deaths in the U.S. of autistic children.
“[These] children are prone to wandering,” Cramer said. “It is one of the big stresses of having a child with autism.”
Cramer said another factor: Autistic children often are attracted to water.
Drew was described as “always happy” with a “contagious smile” in his obituary in today’s Beacon Journal.
“He loved to snuggle especially with his Mommy and Daddy,” the obituary said. “He was rarely upset unless he was hungry.”
Calling hours will be from 4 to 9 p.m. Wednesday at Bacher Funeral Home, 3250 Greenwich Road, Norton. The funeral will be at 10 a.m. Thursday at the funeral home, followed by burial at Greenlawn Memorial Park.
Drew is survived by his parents, Andrew and Kelly Howell and a sister, Katelyn.
Memorial donations can be made to the Autism Society of Greater Akron at 2858 W. Market St., Suite I, Fairlawn, 44333, in Drew’s memory.
Jim Carney can be reached at 330-996-3576 or jcarney@thebeaconjournal.com.

Wednesday, May 22, 2013

Owen Black

An 8-year-old autistic boy missing since Friday on Perdido Key has been found dead in the water, authorities on the scene confirm.

Owen Black, who was visiting from Louisiana, was found by someone on the beach shortly after 1 p.m. in the water in the Gulf of Mexico behind Shipwatch Surf & Yacht Club on Perdido Key Drive, less than a half a mile away from where he was last seen, authorities said.

He likely drowned, the Escambia County Sheriff's Office said, though the Medical Examiner's Office has yet to perform an autopsy. ...

Friday, May 17, 2013

Mikaela Lynch, Autism, Drowns

Searchers found the body of a missing 9-year-old San Francisco girl in a creek near her family's Lake County vacation home Wednesday, authorities said.

Mikaela Lynch, who had autism and the mental capacity of a 1-year-old, was last seen in the backyard of the home on Harbor Drive in Clearlake on Sunday around 1:30 p.m. She had been playing on a trampoline with her younger brother but was left alone briefly when he ran inside to avoid a bee, police said.

Her body was found in nearby Cache Creek by dive team members just before noon, said Clearlake Police Chief Craig Clausen. Foul play is not suspected. Clausen said it appears she wandered into the creek.
"It's really tragic," said police Sgt. Nick Bennett, adding that Mikaela was "a sweet little girl. We had hopes it might turn out differently."

Searchers had looked in the marshes near the home because Mikaela, who did not speak but could communicate through basic hand signals, was "attracted to water," police said.

Mike Dowling, Mikaela's godfather, described her as a "sweetheart" with an "ever-present smile."
"She loves running, playing," Dowling said. "Extremely gregarious. Just a great laugh, a fantastic laugh."
According to the National Autism Association, about half of children with autism are prone to wandering away from their homes, and a third cannot communicate their name, address or other helpful information.
Autistic children are also commonly drawn to water. Of those found dead after wandering in recent years, 91 percent had drowned, according to the association.

Mikaela was a student at Sunset Elementary School in San Francisco, district officials said.
Her teacher and six current and former teachers' aides drove up to Clearlake earlier this week to help in the search, said district spokeswoman Gentle Blythe.

Counselors were at the school Wednesday to help students needing assistance, and the school is expected to honor Mikaela in the coming days, Blythe said.

"Our heart goes out to the family of Mikaela Lynch," Blythe said in a statement. "The Sunset Elementary community has been eagerly awaiting her safe return and is shocked and saddened by today's news. The principal will be sharing the news with the school community and has assembled a crisis response team that is prepared to respond to the emotional needs of students."

San Francisco Chronicle staff writer Jill Tucker contributed to this story.

Ellen Huet is a San Francisco Chronicle staff writer. E-mail: ehuet@sfchronicle.com Twitter: @ellenhuet

Thursday, October 4, 2012

Autistic boy, 11, dies after hit by SUV

An 11-year-old boy who had autism died when he was hit by a sports utility vehicle as he tried to cross the Interstate 10 service road in west Houston Wednesday night.

The collision happened about 7:40 p.m. in the 11300 block of the westbound Katy Freeway service road near Kirkwood, according to the Houston Police Department.

Police identified the child as Desmond Thomas, of Houston. Police said the boy reportedly had autism.
Police said Thomas ran into traffic on the service road and the driver of a Lincoln Navigator that was traveling westbound on the roadway hit him. Thomas was rushed to Texas Children's Hospital, where he was pronounced dead.

Police said The SUV driver was unable to avoid hitting Thomas and stopped after the collision. The driver, police said, showed no signs of intoxication or impairment. He was questioned at the scene and released.
The boy has special needs and was in the care of his father when he wandered away as the father was doing laundry, said Estella Olguin, spokeswoman for state Child Protective Services.

"He was being watched," Olguin said, "but he just wandered away. It's tragic."

Olguin said CPS is investigating the case, which is agency protocol whenever a child dies. The agency is also helping the boy's family members with counseling for their grief.

Police were still investigating the case.

Thursday, July 5, 2012

Jeremiah Conn, Age 5, Wanders and Drowns

Even as the community celebrated that young Scott Myer of Wisconsin was found safely, another family is grieving for a young life lost to autism by drowning.  From Wisconsin State Journal:

Stoughton police and firefighters found the body of a missing 5-year-old boy in a rainwater retention pond Tuesday evening.

The body of Jeremiah Conn, of Madison, was found after firefighters drained a retention pond near the Stoughton Fire Department building on East Main Street, Sgt. Rick Helstad of the Stoughton Police Department said.

The boy was reportedly spotted in or near the pond by a 911 caller at around 4:12 p.m., Helstad said. When officers arrived at the pond, though, they couldn't find the boy.

Shortly thereafter, they were flagged down by a person who was looking for a missing autistic boy. They began searching the murky pond and the surrounding area with help from the Stoughton Fire Department, he said.

The boy's shoes were found near the edge of the pond, Helstad said.

While the pond was being searched, almost 100 volunteers joined with police and fire officers to do a block-by-block search of the area, Helstad said.

But ultimately, the boy's body was found at around 7 p.m. after the pond had been "substantially" drained, he said.

Helstad said the boy was autistic, "almost nonverbal" and "was attracted to water." His family had brought him to Stoughton for the Stoughton Junior Fair, he said.

The police chaplain was called out to help comfort the boy's family and the officers, firefighters and volunteers who helped with the search, Helstad said.

There is no fence around the pond where the boy's body was found.

Helstad said the investigation into the incident has been closed and the death ruled an accidental drowning.