It was mid-afternoon on a late July Sunday when rescue crews found the body of 6-year-old Fawzan Hassan drowned in a Gaithersburg pond. Fawzan, who was autistic and non-verbal, had been at Bohrer Park the day before attending a community event with his family. Then he wandered away, setting off a frenzied search.
It was the second time that month that such a scene played out in Montgomery County. Earlier in July, a 3-year-old boy with autism drowned in a neighborhood pool in Rockville. A similar tragedy occurred in Baltimore County in June.
After the boys’ deaths, several county and state autism advocacy groups formed the Maryland Autism Coalition for Water Safety. The Montgomery County police department’s Autism, Intellectual and Developmental Disability (IDD), Alzheimer’s and Dementia Unit and xMinds, an education and outreach group based in Kensington, are part of the coalition.
To get the word out about water safety, resources that are available and what caregivers should do if they find that their loved one has wandered, the coalition launched a public service campaign. The No. 1 piece of advice from advocates and law enforcement: “Call 911 first, THEN search water.”
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Understanding wandering and elopement
Autism spectrum disorder is a neurological and developmental disorder that impacts how people communicate, learn, behave and interact with others, according to the National Institutes of Mental Health (NIMH). One in 43 children in Maryland are diagnosed with autism spectrum disorder, according to the Autism Society of Maryland. There is no one type of autism. The disorder is characterized as a spectrum, referring to the “wide variation in the type and severity of symptoms that people experience,” according to NIMH.
“Some kids with autism have very limited ability and others have much more. There are differences in language level and intellectual level and general self-awareness level,” said Dr. David Black, a pediatric neuropsychologist and the director and co-founder of the Chevy Chase-based Center for Assessment and Treatment.
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“For some children with autism there can be major differences in their assessment of risk and their situational self-awareness,” he said.
The most common risks for children with autism are wandering and elopement, defined as “the tendency for an individual to leave the safety of a responsible person’s care or safe area, which may result in potential harm or injury,” according to the National Autism Association. A study by the association found that in the United States, accidental drowning account for 71% of lethal outcomes of wandering/elopement, followed by traffic injuries at 18%. Children ages 5 to 9 accounted for the highest number of deaths and children younger than 5 faced the highest lethal risk, the study found.
Black, the pediatric neuropsychologist, told MoCo360 that it is important to understand that wandering/elopement is a layered issue and as complex as the symptoms experienced by individuals with autism.
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An autistic child might wander off for a handful of reasons. According to Black, the child could be “immersed in [their] own world” and following an interest without thinking about safety, feel “overloaded” by a noisy or chaotic environment and be looking for a quiet place, or feel scared or distressed and be trying to escape.
“Understanding those pieces and understanding your child is really important. And sometimes even when knowing all of that, I can only imagine how hard it is to maintain 100% constant vigilance,” Black said.
After working with many autistic children, Black said he has found that many “just love water,” oftentimes for sensory reasons.
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“Sometimes it’s the sound, sometimes it’s the feel, sometimes it’s the look,” he said. “In some cases, kids just love being in the water for sensory reasons, the experience of being in it, the weightlessness of the body, the feeling of the water against your skin. [It’s] usually driven by some sort of sensory seeking, just that it feels good.”
A specialized police unit
One of the key partners of the Maryland Autism Coalition is the Montgomery County police department’s Autism/IDD (Intellectual and Developmental Disabilities), Alzheimer’s and Dementia Outreach Unit.
Officer Laurie Reyes, who leads the unit, said it was among the first of its kind in the U.S. when it launched in 2005. The unit trains all county police officers on how to respond to cases involving individuals with autism and wandering/elopement. The unit also provides community outreach and follow-up with families and caregivers to share safety resources and best practices.
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A variety of resources for caregivers is available on the unit’s website, including a safety brochure, a 911 call script for families to prepare in case their loved one wanders, a letter families can hand out to neighbors, and an online webinar about wandering safety tips in English and Spanish.
The department receives close to 1,000 calls about wanderings/elopements in the county annually, Reyes said, noting that the unit responds to nearly the same number of wandering calls in the winter as in the summer.
“The threat of water is the same, no matter the season, because those individuals who have autism, many will not mind or not be cognizant that the water is cold and they shouldn’t go in,” Reyes told MoCo360.
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Each week, Reyes said, the department responds to an average of about five to eight calls involving an individual with autism or an intellectual or developmental disability who has wandered.
Oftentimes civilians or officers have located the individual before a caregiver has even called the department to report the person missing, Reyes said.
As of Sept. 30, Reyes said the unit has followed up on 530 calls this year, which involved meeting with families to share resources such as the unit’s safety kits.
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Those kits include the unit’s brochure and window clings for the home and car that indicate a person with autism or intellectual and developmental disabilities may be present.
The kit contains an extra resource for those who cannot speak for themselves and who would be in immediate danger if they elope or wander: a bright yellow T-shirt that says “I am a person who has autism/IDD. If I am alone please call 911.”
Reyes recently began visiting the offices of local doctors to share a letter about the importance of teaching caregivers about the risks of wandering after a person has been diagnosed with autism. Reyes said she was inspired to reach out to doctors after speaking with the mother of the 3-year-old boy who drowned. The mother had been unaware of the risks of wandering, she said.
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“A lot of parents just aren’t aware that that’s a thing. So in honor of the young boy, we’ve been handing out safety information [to] … local doctors’ offices,” Reyes said. “This mom had said she felt like she didn’t get a lot of information from the doctor on wandering when he was diagnosed.”
“She didn’t even know,” Reyes said, “and that needs to be fixed.”
Making the call
When it comes to calling 911, Reyes stressed that caregivers should call immediately after realizing the autistic individual has gone missing and then begin searching.
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“Calling 911 allows [for] a full force multiplier, so you get the lookout out, you’re allowing officers to immediately go to bodies of water,” Reyes said, noting that more officers means “more eyes looking.”
“There’s no harm in if you find your child, calling right back and saying, ‘It’s OK. False alarm. We found them,’ ” she added. When asked about families who may be distrustful or fearful of calling the police for a variety of reasons such as their immigration status, Reyes offered to talk with those families about their questions and concerns. “Call us. Let’s talk about it. Let’s figure out why you’re fearful,” she said.
“We just want to get the child back,” Reyes added. “We’re not worried about immigration status. It’s not a punitive [process]. It’s so rare for us to [find a neglectful caregiver]. What’s more common is a good caregiver who said, ‘Oh my gosh, I’m going to be judged if I call.’ And that’s not the case.”
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When a caregiver calls 911 about a missing loved one with autism or IDD, Reyes said it is important to share as much information as possible with the dispatcher. She explained those types of calls are classified as “missing at-risk calls.” After the call, officers will respond to the location provided, and if available, an officer from the unit will respond as well.
“It’s a broad collaboration between patrol, Managed Search and Rescue, the Managed Search Operations Team and other agencies,” Reyes said.
Swim lessons can help
Advocates also encourage caregivers of autistic children to enroll them in swimming lessons.
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“I always tell parents [that] it’s not about getting them to learn specific strokes. It’s all about life sustainability, so whether that [is] doggy paddling or treading water or knowing how to float,” said Shelly McLaughlin, who has a son with autism and is the program director at Pathfinders for Autism.
Pathfinders is a Baltimore County-based advocacy organization that “works to support and improve the lives of individuals with autism,” according to its website. The organization is also part of the coalition.
In addition to general safety resources, Pathfinders shares information about water safety, swim lessons and advice for swim instructors on teaching students with autism.
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Following the deaths this summer and the formation of the coalition, the Autism Society of Maryland – a chapter of the Autism Society, headquartered in Rockville – updated its safety page with more information from the coalition, according to executive director Melissa Rosenberg. The organization also shares resources related to water safety in English and Spanish, swim lessons, and a downloadable version of the campaign flyer in English, Spanish, Mandarin and Amharic.
‘It can happen to the best of caregivers’
Rosenberg told MoCo360 the organization received an influx of messages this summer from concerned caregivers, families and community members after the news broke of the drownings.
Forming the coalition was one response that advocates and the county police’s Autism/IDD, Alzheimer’s and Dementia Unit have taken to “prevent those kinds of tragedies,” she said.
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Another is to make sure parents and caregivers don’t feel ashamed to call 911 if their autistic child wanders. Black noted that sometimes others can be judgmental when it comes to parents of a child with a disability.
“We’re getting better but there still is this predisposition to judge,” he said, adding how important it is for others to have compassion for families and for “how hard that situation can be.”
The key, advocates said, is to raise awareness among caregivers and others to remain vigilant so all can help an autistic child who may be in danger.
“We know that it can happen to the very best of caregivers,” Reyes said.
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