Boxing Wanderlust

Nadia Bloom is carried out of swamp by a Winter Springs Police Officer
©Winter Springs Police

The Autism Society is part of an Autism Safety Coalition that Includes The Arc, Autism Speaks, TACA, The Color of Autism Foundation and other nonprofits that are currently lobbying their members to support a bill through both houses of Congress called S. 2614/H.R. 4919  they have renamed Kevin/Avonte's Law.
I oppose these expansions to the Alzheimer's protection bill because I see it as building a foundation to monitor and criminalize autistic children of color without physical incarceration. It is too much like pushing the culture of the ankle restraints and GPS tracking initiatives that is the latest morphing of the mass incarceration system, and our nonprofits are lobbying for the funding to support and promote it in the name of gaining police training funding for their organizations to aid in "protection from wandering."

This is terrifying.

There is a movie, a critically acclaimed and panned U.S. box office flop, called "Boxing Helena," about a surgeon who is obsessed with his neighbor, sees her hit by a car, kidnaps her, and amputates her legs and later her arms in an attempt to keep her "safely" under his control. In the Autism Wars for safety, parents and organizations, eliminating autistic input while marinating in fear that autistic loved ones or autistic charges in the care of organizations might wander off and come to harm, are behaving very much like Dr. Nick Cavanaugh, have obsessively taken action to sever privacy, agency, and self-advocacy from autistic children and adults in the name of ensuring safety. Training, that term that means very little in the scheme of things because it discounts those humans actually doing the wandering but generates income that could be used more effectively elsewhere (meaning respite and community accessibility and enrichment support services that might engage neurodivergent people with wanderlust) is now deemed to be the answer. Training and of course processing our children like any other person entering the criminal justice system. Parents have started databases kept by police of their children with their biographical information and DNA. Organizations are using the death of Avonte Oquendo to push legislation through to train, to give funding to law enforcement for training, with the goal of reducing "wandering behavior" and keeping their autistic loved ones "safe."

Boxing wanderlust.

Let's look at two cases of wandering and analyze the wide scope of an ill-defined legislative action and where my concerns lie.

1. The Case of Nadia Bloom 

Nadia Bloom, an 11-year-old who for some reason news organizations put the Aspergers label on rather than stating she was autistic, watched her father and sister leave for a camping trip to the Everglades with her sister's Brownie troop. She was excluded from such a trip. Carrying a book called "Lanie" about an adventurous girl who loves the outdoors, Nadia sets off into the alligator-ridden swamp and gets lost. A frantic search for her ensues. Four days later she is found by a neighbor who attended her parent's church, covered in mosquito bites but otherwise alright. Nadia later stated she got caught up in the wildlife and lost track of landmarks and time.

Paramedic Hollis Lipscomb tends to autistic hiker,
18-year-old Jacob Allen, after he was found
Thursday, Oct. 18, 2007, in the Dolly Sods Wilderness Area
near Davis, W.Va. where he went missing four days ago.  © AP

2. The Case of Jacob Allen
Jacob Allen was an 18-year-old nonspeaking autistic student whose brother took him for regular wilderness hikes to calm him from an otherwise very restrictive school life. Jacob also regularly camped and hiked with his family. He knew the woods and he had basic survival skills despite being nonspeaking, and despite being labeled a disabled person with a "mental age of a 3 or 4 year old." Per local West Virginia newspapers:

"Mr. Allen, of Morgantown, wandered away from his parents during a Sunday afternoon hike in the Dolly Sods Wilderness Area. "

Per CBS news: "After four cold days and four nearly freezing nights, searchers spotted the 18-year-old sleeping under a thicket of laurel in the Dolly Sods Wilderness Area, part of the Monongahela National Forest."

"It made sort of like an umbrella, but underneath it was bare and open," State Police 1st Sgt. Jim Wise said. "It made some type of shelter."

"Though Allen was less than a mile from the spot where searchers had found his hat Monday, the brush kept his location hidden until Thursday afternoon. Wise believes it also may have kept the teen, who is nonverbal, from wandering toward 20- to 30-foot cliffs."

"He rolled over after I called his name and he didn't have much in the way of reaction, but he recognized me. I could tell," said Jeremy Reneau, 25, the first to spot Allen. "

Throughout this ordeal, Jacob Allen's brother expressed incredible faith in him. He kept repeating that Jacob knew the woods and knew how to survive in them. No one listened. After Jacob was found, the story became one of an excuse to justify tracking devices.  What happened next was Jacob, who survived 4 days in freezing temperatures by knowing what to do, was fitted with an ankle bracelet. Here is a photo of the device being installed on Jacob Allen:

Here is a photograph of an ankle monitor, tether or ankle bracelet used to monitor criminal offenders when under house arrest or on parole:

Corrections officer installing ankle bracelet on inmate

The devices are the same and serve the same purpose. So Mr. Allen is under permanent house arrest and monitoring for the crime of walking too far ahead and becoming disoriented and lost.
No one wonders why he "elopes." This is their solution.

Spoiler alert: Boxing Helena was in the end a perverse dream of a surgeon about his neighbor. Acting to restrict any individual without understanding why he feels the need to wander and without his consent is inhumane.

Our nonprofits are all okay with doing this to any autistic child or adult unable to give consent. And we are all okay with that?

I remember being young. Going where I was not supposed to go to test my boundaries and test my limits at the behest of friends who didn't have much better sense than I did. I've also lost myself on forest trails but have been fortunate enough to have the basic knowledge to find my way out again. My mother lost my sister and I when I was a toddler during the press of a crowd at JFK. When she found us no one suggested she shackle us together to keep better tabs on us.

The term Wanderlust was created to define the human need to wander and explore. Entire peoples based lifestyles on nomadic life and some continue to do so today. So wandering is an instinct in us. I think wandering isn't the issue but how to ensure safety of those who do and how to understand this need is the issue and we are not addressing that. The zeal to embrace a cycle of police centered training and monitoring and restricting movements of our people as a solution among autism organizations with disregard for the consent of those who will be forced to endure it all is not only ableism in legislative advocacy, it is ethically and morally bankrupt as a solution to protecting children and nonspeaking autistic adults if they do not or cannot proactively consent to such measures. 

Now let's talk about how effective these tracking devices are:

For autistic children:
Missing autistic girl, 10, found dead after her wrist tracking device failed to send a signal http://bit.ly/jtSvXM

For convicted felons:
Convicted White Supremacist Evan Ebel killed Colorado prison director after his ankle monitor failed:
http://www.ibtimes.com/evan-ebel-killed-colo-prison-director-after-his-ankle-monitor-failed-1167345

Any action that places disabled individuals under surveillance without their consent and restricts their movements is a violation of their human rights and tantamount to incarceration. Police have been trained, this did not stop an officer in Florida from aiming for nonspeaking autistic citizen Arnaldo Rios Soto and shooting his support aide.  Clearly acquiring even more funding to train them is not going to solve that problem either.

Funding these types of measures are not a solution. Boxing wanderlust will destroy those people we are trying to protect to supposed solve the wandering issue. Funding that could be used for more humane protections and patient centered research into the nature of wandering being used to do this is variant of shackling is wrong.

I am against these measures without the consent of those they purport to be for, and to my knowledge no one autistic has been asked to consult or discuss the impact on autistic individuals of Avonte's Law. It is an abomination to me that the name of an African American autistic teen be placed on a bill to fund shackling autistic youth and nonspeaking adults.

On the Sad End to the Search for Mikaela Lynch

The body of Mikaela Lynch, age 9, Autistic, was found in a nearby lake where she apparently drowned. I am sorry to say that when I saw the red flags of a nonspeaking missing child, a nearby body of water, and unfenced backyard leading to woods, I feared the worst while praying for the best.

I have asked my Congresswoman to consider expanding the Maryland Silver Alert system to include missing Autistic children, who are not covered by the Amber Alert System. Please join me in this effort in your States as well.

I'm going to comment on the article in the Cafe Mom's The Stir because I don't wish to increase hits on the Examiner article which vilified the parents without a clear grasp of what happened that day. We weren't there. We don't know what happened. We only know what is reported to us. I will wait for the police to finish their autopsy and investigation, and pass on my sincere condolences to Mikaela's family.

In 2012, I asked the Maryland Autism Commission to recommend survival swimming be part of the educational curricula for all Autistic children and adults because the numbers of first time wanderers with developmental disability who die by drowning is frighteningly high. Unfortunately the Commission wasn't able to include this in their final draft.

We have been engaged in teaching our son water survival rather than swimming since his school reported him missing and he was found by chance in February of 2010. He was found near a backyard pond, according to his principal's account of events on the phone. We will never know what happened that day.

But there is a much more critical issue here, a dangerous slope we as parent advocates can easily slide down in our fear that our children might be next, and that we might be scrutinized for parental negligence. Let us not fall into the trap of calling for a behavioral code for wandering, and imprisoning our children in the name of protecting them from harm. Instead it is critical that the billions of dollars being allotted to brain research include funding set aside to understand the causes of wandering, and search for solutions that don't imprison our children and try every parent who will spend the rest of their life second guessing the last day of a wandering autistic child's life for neglect in the court of public opinion.

In my own research on wandering, there were cases of drowning in which the victims were wearing tracking devices linked to police emergency centers. This issue was a matter of public outrage in Colorado in the cases of the drowning of Kristina Vlassenko and the wandering incident of Brandon Wells, who was fortunately found despite the failure of his tracking device. In addition, Brandon's mother was later brought up on charges for the device's failure to hold a battery charge.

It is saddest to me that we tend to forget that all children do deadly things daily. When I was growing up, parents were warned about keeping all children away from old refrigerators. Each year typical children fall in bodies of water and drown. They swim in areas of riptides and are carried away. Children who are capable of reading ignore warnings and fall through ice on frozen lakes. When other developmentally disabled children or typical children are the victims of horrible accidents, the parents are allowed to grieve and media coverage occurs in a humane fashion. Nor does anyone lay blame on the pathology of the children. Two things have to end here. One, we have to see our children as people with degrees of impairments that need to be addressed and managed; NOT as medical nightmares who need to be behaviorally controlled but as people who need accommodation and supports for such potentially catastrophic events. Accommodation must be made so that solutions account for autistic people running from abusive placements in both school and institutional settings.

I made the effort to write this in extreme pain because I don't want us to go down that path where we imprison our children in the name of protecting them. It is our job to empower our children and teach them to survive. It is the difference between surviving 15 hours in water by shouting "to infinity and beyond"  and locking your child in a cage to keep the child "safe".

7-year-old Autistic Boy Found Dead in Creek - WAFB Channel 9, Baton Rouge, LA |

7-year-old boy with autism found dead in creek - WAFB Channel 9, Baton Rouge, LA Today my heart broke for a family I’ll probably never meet, over a child who could have been my son. I learned that, John Burton Jr., age 7, autistic, drowned in a creek near his new home. He was not familiar with his new neighborhood. His dog was unable to keep him from drowning.
This news triggered thoughts of February 27, 2009. The day the principal of my then 7-year-old son’s full special education school called to say the school had “lost” my son.

“This is bad”, she said. “This is very, very bad”. And in those few frightening hours, I learned things that would change me for the rest of his life and ours. He was supposed to have been in the care of a paraprofessional in plain view of 6 adults but somehow he disappeared. Could this be true? Had he overcome his fear of the dark miraculously acquired the OT skills to break safety latches and automatically locking doors when he was incapable of holding a pencil without support, and decided to make a jailbreak, running from the most restricted educational environment available in the public school system? Had my brave, nonspeaking, chubby little guy taken flight in bare feet, coatless in the chilling February winds? We learned that what we were initially told about what happened that day was completely untrue. Something more horrible had happened. But our story has a less tragic ending. A stranger found him, wet and muddy, but alive, and brought him back to us.

I have been homeschooling my son ever since. The most important segment of his physical education program is the swimming program. Not the water therapy he was getting in his special education school, but real swimming lessons, with dedicated instructors and his parents attending him. We will never know what happened that day unless our son should learn to type and tell us. But we realized our son needed to learn some life saving skills. We urge all parents and care providers of autistic children and adults, particularly nonspeaking ones, to find someone able to teach your children/ adults to swim. All children, autistic or not, will always be very attracted to water. Teaching children to survive in the water might save their lives even when a faithful dog cannot. Think your child or adult carries too "severe" a function label to learn to survive in the water? Anyone can be taught water survival, even if they can't swim. This video gives a brief introduction of a swim to survive program, one that all special needs families should have available here in the U.S. but we don't: 

Read about what the Dan Marino Foundation is doing to save lives by training people to teach neurodivergent youth to swim. http://www.danmarinofoundation.org/aquatics

I hope that families try their best to plan for events like moves from one home to another. Prepare your nonspeaking child's bedroom first; then sacrifice unpacking time to teach your child how to be safe in his/her new place. Marco Polo your offspring and keep them engaged and within view until the move in is at a stage where your child won't get lost in the confusion of movers and friends trying to place large items in the new home. Preparation could save your loved one's life.

I am not assigning blame to the family at all. Sometimes every precaution can be taken and things can still go very wrong. I send my deepest condolences to the Burton family. But for the grace of God, any one of us could be in the Burton family's position. The only thing we can do as care providers is plan, accommodate, and educate our loved ones.

Peace