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Avonte’s Law

  • Posted on January 29, 2014 at 10:00 AM

It’s a tragic story that fills the hearts of parents of children with autism with terror. A child was safely at school—until he wasn’t. He wandered away—nobody stopped him. He disappeared—nobody found him. His body turned up months later—without the life that went with it.

My heart goes out to the family and friends of Avonte Oquendo. I pray for their healing, for their comfort, and for the soul of Avonte. I pray to God that my children don’t face a similar fate. I pray that my children and the many others like them will be safe in school, at home, and wherever else they may go.

In the aftermath of Avonte’s disappearance and death, Senator Charles E. Schumer proposes “Avonte’s Law,” which will provide federal funding for voluntary tracking devices for children with autism—similar to a program used for people with Alzheimer’s. In theory, the devices would help people to locate missing children more quickly—before harm can come to them.

My husband and I had both paid attention to the disappearance of Avonte and how he was eventually found. My husband was the one who first heard of the proposed law. We’ve discussed it among ourselves. I want to share some of our conclusions with you.

In theory, these devices will protect children. In theory, the devices will make children more secure, because technology will make it easier to locate children recognized as vulnerable. In practice, we fear, technology can be hacked. In practice, we fear, there are people who are motivated to find vulnerable children to fulfill their own sick pleasures. In practice, we fear, these devices may make children targets—even more so than they already are—to people with criminal intent.

What is more likely: a child will wander away and the device will be used to find the child before it’s too late or a criminal will hack the device to locate a child at a moment of vulnerability and either ransom or harm the child? I don’t know, but I don’t like either scenario. We live in a dangerous world. We live in a world where technology can be used for good and for evil. We experience both on a regular basis. In such a world, are there any good answers?

Wandering: A Warning

  • Posted on March 18, 2011 at 4:10 PM

ASAN has issued a warning and a call for action.  You can read a brief overview here if you did not get the message.

ASAN has many valid concerns and complaints about this proposal.  Generalizing any behavioral pattern based on poor research is unwise and irresponsible.  From a social justice perspective, attributing a diagnosis to a group of people for whom the diagnosis is accurate to an unknown percentage of the population is an act of stereotyping, which further demeans a minority group and raises serious doubts about the integrity of the medical community.  Furthermore, “wandering” as a medical diagnosis seems questionable in and of itself.

However, as a parent of three children who have exhibited wandering behaviors, I must also object with the language ASAN used to motivate their supporters.  First and foremost, I think it is inaccurate to assume this diagnosis will “encourage” schools to use restraints and isolation.  These activities do occur and they are dangerous.  They should be stopped.  But they are used by unethical schools and staff for the sake of their own convenience; a diagnosis will not justify the use of these methods to otherwise ethical and caring individuals.  Wandering is a safety risk and schools have a responsibility to address that risk and accommodate children who wander.  All three of my boys have wandered at one point or another, and their schools have addressed those risks and found ways to accommodate them, not with restraints or seclusion, but by ensuring their safety and giving them appropriate opportunities to explore their environments.  Parents and schools share responsibility for formulating an adequate and appropriate plan to address these concerns in a child’s IEP.  I also object to the suggestion that wandering is a reaction to “abusive or sensorily overwhelming environments.”  While this can be the case, wandering is a behavior with many causes.  All the wandering I’ve seen associated with autism has been about curiosity and lack of danger awareness.  Children are curious.  Those who lack danger awareness may seek to satisfy their curiosity in unsafe ways, including wandering.  Associating wandering with abuse is far too reminiscent of the “refrigerator mother” theory and other ways that have been used to suggest poor parenting as the culprit for complex behaviors.  Such a generalization can be just as dangerous as the one ASAN seeks to prevent.

It can take less than 30 seconds for a potential wanderer to get out and away from an unsecure environment.  Hyper-vigilance does not equal safety in such an environment.  Measures need to be taken, but they need to be taken in a respectful manner, i.e. not relying on restraints and seclusion.  Attention should also be paid to the environment itself.  If the environment is uncomfortable, then corrections should be made to that environment.  But caregivers must also be aware of other factors, like curiosity and limited awareness of dangers, when addressing safety concerns for a child who wanders.

Wandering is a real problem, and it can be terrifying.  Some children who wander go missing for days before he or she is found, if he or she is ever found or found alive.  That’s terrifying and harmful for everyone involved.  Even if a child is missing for only a few hours or even a few minutes, it’s terrifying.  Yet it serves no good purpose to turn this challenge into a stereotype.  It’s an individual issue and the solutions are individual and specific.  It is irresponsible for the Centers for Disease Control and Prevention (CDC) to attempt to make wandering—a behavior attributable to many factors—a medical diagnosis.  It is irresponsible for schools and other organizations to use such a diagnosis to justify harmful practices.  It is also irresponsible of ASAN to attempt to motivate their supporters by noting possible worst-case scenarios from a social justice perspective without also noting that there are real concerns about the safety of some individuals with autism.