SEARCH WATER FIRST: Autism and Drowning

The Politics of Autism discusses the dangers facing autistic people, including wandering.

 Patricia Davis at the National Center for Missing and Exploited Children

There’s been a dramatic spike in drownings of children with autism this summer, with three more kids drowning just this week, raising the total to 26 children.

“It’s been the worst summer on record for autism and wandering in terms of fatalities,” said Lori Mcllwain, co-founder of the National Autism Association (NAA), whose son has autism. “We’re trying to get the word out to parents to be extra vigilant. We usually see two or three deaths per month on average. Now we’re seeing two or three a week.”

Today, in conjunction with NAA, the National Center for Missing & Exploited Children (NCMEC), is releasing an urgent alert to remind the public and first responders to SEARCH WATER FIRST when a child with autism is missing. Children with autism often wander, or bolt, from safe environments and many are drawn to water.

John Bischoff, who oversees our Missing Children Division, said NCMEC knew we had to do something more when we saw this shocking increase.

“We want to urge people to be more vigilant,” Bischoff said. “It’s important that everyone understands what to do in these fast-moving situations, not just the families of these children. You could save a life.”

 Michael Cuglietta, Orlando Sentinel:

Children with autism are especially susceptible to the risk of drowning, as they tend both to wander away and to be attracted to water, experts say. That has led advocates to push for specialized swim lessons attuned to those kids’ situations, but much more needs to be done.

So far this year, 23 children with autism have died by drowning in Florida, including six in Central Florida, according to the Florida Department of Children and Families. Those deaths account for nearly 30% of the 81 such deaths reported in 2024 in Florida, which leads the nation in childhood drowning.

 

Autism Organizations and COVID-19

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all.  Major national organizations are posting information and advice:

• Autism Society 
• Autism Speaks
• Austistic Self-Advocacy Network
• National Autism Association
• Autism Support Network

Autism Safety Coalition

The Politics of Autism discusses the problem of wandering, which is the topic of legislation before Congress.

A release from the Autism Safety Coalition:

In light of the growing number of wandering-related deaths in the autism community, a group of national organizations have come together to support Senate Bill 163, Avonte’s Law. The group, the Autism Safety Coalition (ASC), announced today that its new social media campaign, “Yes to Avonte’s Law,” will also serve to educate the community and the public about the dangers of wandering behaviors in those with autism and other disabilities.

Introduced by Senator Chuck Schumer (D-NY), Avonte’s Law Act of 2015 would help reduce the risk of injury and death relating to wandering behaviors in individuals with autism and other disabilities. “It would provide education, training, and resources to law enforcement agencies, first responders, schools, clinicians, and the public, “ says Lindsay Naeder of Autism Speaks. The law is named after Avonte Oquendo, a 14-year-old boy with autism who vanished from his New York City school in 2013. His body was discovered three months later in the East River.

Wandering behaviors are considered common and short-lived in very young children, but may persist or re-emerge in individuals with cognitive disabilities. According to a 2012 study released by the journal Pediatrics, 49% of children with autism wander/elope from safe supervision. Twenty-nine percent of cases occur from a classroom or school. Tragically, cases involving a child with autism age 9 and younger have ended in death 42% of the time.

“This issue affects all genders, races and ages in the autism and greater disability community,” says Camille Proctor of the Color of Autism Foundation. “Avonte’s Law would help speak for those who may not be able to speak for themselves.”

According to the Autism Safety Coalition, Avonte’s Law would provide many of the same resources already available to prevent wandering and expedite the safe return of those with Alzheimer’s. “It’s a commonsense bill,” says Wendy Fournier of the National Autism Association. “Children and adults with autism and other disabilities frequently wander from safe settings, often with tragic consequences. It’s time for federal action.”
Since the beginning of this month alone, six children with autism have died after wandering from a safe setting in Florida, New Hampshire, Texas, California and Illinois.

“This is happening more than most people realize,” commented Tonia Ferguson of the Autism Society.

To take action on Avonte’s Law or to learn more, visit autismsafetycoalition.org.

Contact:

Wainie Youn, Autism Society: (301) 657-0881
Nick Galbraith, Autism Speaks: (202) 499-0843
Camille Proctor, The Color of Autism Foundation: (313) 444-9035
Wendy Fournier, National Autism Association: (877) 622-2884
Lisa Wiederlight, Safeminds: (202) 780-9821
Kristen McKiernan, The Arc: (202) 534-3712

The Chili's Controversy, Journalism, and "A Terrible Condition"

AP reports on the Chili's controversy:

To honor National Autism Awareness month, the restaurant chain had planned on donating a portion of its sales on Monday to the National Autism Association. The group, based in Attleboro Falls, Mass., says its focus is on safety issues for the autistic community. But a section of its website also states that it believes vaccinations can "trigger or exacerbate autism in some, if not many, children."

In another section of its site, the group says that "informed consent is critical and each parent should have the freedom and information necessary to make the best decision for their child."

The belief that the battery of vaccinations given to infants could lead to autism was spurred by a British study that has since been retracted. Repeated studies have discredited the link, but the issue has remained a point of contention in some circles. Seth Mnookin, a professor at the Massachusetts Institute of Technology who wrote "The Panic Virus" about the fears triggered by the now debunked study, noted that the National Autism Association has a lengthy history of connecting vaccines with autism.

Wendy Fournier, president of the National Autism Association, said in a phone interview that she was "shocked" by the backlash and "this group of individuals that is trying to pigeonhole us as anti-vaccine."

Fournier noted that the National Autism Association's doesn't have any programs related to vaccines.

"We haven't even looked at that page — it's been up there for years," she said of the section on the group's site that says vaccines can trigger autism.

"There has always been a lot of debate," Fournier said. "It hasn't been answered whether or not vaccines can cause autism."

For now, she said no changes would be made to the site because that might be criticized as well.

At The Los Angeles Times, Michael Hiltzik writes:

"Cause-related marketing" -- the term should give you a clue to what it's really all about -- has become an inescapable part of the marketing and ad campaigns of countless consumer businesses. An essential factor in these campaigns is that the consumer "participate" by making a purchase, a portion of which is paid over to the chosen charity.

Philanthropy experts are troubled by these campaigns. For one thing, the best-marketed charities, not necessarily the most deserving, garner the most attention. Another drawback is that when customers' donations are made automatically at the cash register, they don't do much, or anything, to examine the charity they're helping. Why should they? They're not actually paying for the donation.

The Chili's case shows the other side of that coin: The merchants don't feel much need to scrutinize those charities either. Chili's may merely have thought, "Autism Awareness Month = marketing opportunity." There's no evidence that its executives bothered to educate themselves about autism itself, though the chain said its intent was "not to express a view on the medical or scientific positions related to autism, but rather to support the families affected by autism." (We assumed they didn't really intend to fund vaccine deniers.)
...

UPDATE: I have been taken to task, properly, for referring to autism above as "a terrible condition for its sufferers and their families." That's a narrow and ill-informed way of looking at a condition that many people on the autism spectrum feel has benefited their lives. "I'm a good reporter because I have incredible focus," says Mike Elk, the superb labor reporter for In These Times, who identifies himself as having Asperger's syndrome and appreciates the diversity of those in the autistic spectrum. Those seeking to know more should turn to the Autistic Self Advocacy Network, whose president, Ari Ne'eman, serves on President Obama's National Council on Disability. [emphasis added]

The National Autism Association and Chili's

There are a number of national autism organizations, and someone unfamiliar with the issue might not understand the differences among them.  The Huffington Post reports:

Enjoying a Triple Dipper at Chili's on Monday? Some of your money will be going toward anti-vaccination efforts.

On April 7, the restaurant chain will be donating 10 percent of customers' checks to the National Autism Association in honor of National Autism Awareness month. On its website, the NAA claims that vaccinations can expedite autism in "some, if not many, children."

Though the anti-vaccination movement has gained steam in recent years, more and more data shows that anti-vaccination efforts can result in outbreaks of preventable diseases like measles. The Center for Disease Control has repeatedly disputed the idea of a causal relationship between vaccinations and the development of autism in children.

On its website, the NAA doesn't make a definitive statement about vaccinations and autism, instead directing users to the National Vaccine Information Center, a nonprofit organization. In his book Denialism, journalist Michael Specter writes that the "NVIC is the most powerful anti-vaccine organization in America, and its relationship with the U.S. government consists almost entirely of opposing federal efforts aimed at vaccinating children."

Chili's has already felt backlash from its decision to donate proceeds to the NAA ,issuing a defensive statement to its nearly 4 million Facebook fans on Friday.

...
UPDATE: 5:15 P.M. EST -- Chili's has canceled the event after negative feedback from customers.

“While we remain committed to supporting the children and families affected by autism, we are canceling Monday's Give Back Event based on the feedback we heard from our guests," a Chili’s Grill & Bar spokesperson said to The Huffington Post in an email. "We believe autism awareness continues to be an important cause to our guests and team members, and we will find another way to support this worthy effort in the future with again our sole intention being to help families affected by autism."

The Need for Action on Wandering

Lori McIlwain, executive director of the National Autism Association, writes in The New York Times about her own son's wandering.

Today, the National Autism Association, where I work, provides information and resources for caregivers. Back then, there were no fact sheets to support our pleas for greater vigilance. And, to this day, there is no guidance from the Department of Education; no protocols, not even a mandate to notify parents of any wandering attempts. At the N.A.A., we often hear from parents who have a child who cannot sleep, forcing caregivers to barricade doors and take shifts staying awake. Others are so desperate that they hide their child’s shoes to slow them down in case they escape.

Under federal criteria, which most states follow, the Amber Alert system [see story on Silver Alert]  can be used only for children known to have been abducted. Wandering doesn’t count. Instead, the refrain most often thrown at parents is simply “watch your child better,” or “find a school that will watch your child better.”

Imagine if that were the advice given to those who care for Alzheimer’s patients. In fact, the Department of Justice provides about $1 million a year for first-responder training on Alzheimer’s-related wandering and tracking technology. There is no equivalent funding for autism-specific wandering and no more than a promise, in 2011, from Kathleen Sebelius, the secretary of health and human services, to give the issue “serious consideration.”

Finances of Autism Organizations

Left Brain/Right Brain looks at IRS Form 990, finding that Autism Speaks ($45.5m in revenue) and Generation Rescue ($641k in revenue) both have roughly equal ratios of salaries to program service expenses. Also it finds that the National Autism Association ($542k in revenue) does not have the thousands of dues paying members that it had claimed. "The lowest dues level for the NAA is $35/year. The amount of dues collected was $12,465. This suggests a maximum of 356 dues paying members."

National Autism Association

The National Autism Association has been an advocate for the vaccine theory. Its claims to a large membership have come under criticism from blogs such as Left Brain/Right Brain (using IRS 990 forms) and Autism Diva (displaying photographs).

In a statement to the IACC, NAA raised an issue not directly related to the vaccine theory:

In 2008, Danish researchers found that the mortality rate among the autism population is twice as high as the general population. In 2001, a California research team found that elevated death rates were due to seizures, respiratory problems, and gastrointestinal bleeding. Deaths were also attributed in large part to suffocation and drowning. The National Autism Association is working to address the external factors in particular, most notably suffocation due to improper restraint procedures and drownings. Drownings, prolonged exposure, and other wandering-related factors remain among the top causes of death within the autism population.The fact that we are unable to provide data showing how many adults and children die each year due to wandering is why we are here today. We can assure you that deaths are increasing each year, but we have no research to back our claims. Without hard data, it has been difficult to gain the attention of lawmakers, government health agencies, media and law enforcement agencies.